Web Notes

Thank you everyone for all your kind words and thoughts. One of the first times
for ages that I came down to the computer with the intention of replying/reading
and all these wonderful messages for me... bless you all.
For someone who asked....weightloss due partly to days of high fever and not
eating, then eating and vomiting but I remember last time I had PMR and TA that
the weight just dropped off me but at that time had a little to spare, not much
but I didn't drop into what I call the danger zone where I feel I am now. I was
so pleased to have put on 3 lbs last week, I would have been pleased had I just
maintained the weight but this is a bonus.
I am not sure why I have sicky days. I have all my life, just go into vomit
mode. I was diagnosed as having dairy product allergy but I think it is more an
intolerance and I do have dairy produce partly because I didn't want to go
without it then meet it one day and go into anaphylaxis, but i can vomit for
England but not neccesarily have had dairy. I do have a hiatus hernia, so maybe
several things contribute.
I just have to make sure when it happens I get anti emetics down me asap.
Is there anyone out there who has had Vinorelbine? How did you do on it?
Take good care and love from Velvet x (UK)

Aw, Julie, your poor kid. Both arms. How the heck?
I also have a lot of sympathy for you and the sciatic nerve thing going on.
Welcome to my world. But I complicated my life Friday by hurting another muscle
in my back while getting into my daughter's van to go to the fireworks with them
and it radiates around to the front. I am in major pain today because I lifted
a clothes basket onto my bed to fold clothes. I am not a happy camper at all.
Hurts to take a deep breath and to lie down. I'm really buggered this time.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Velvet,
Thanks for asking about this. I meant to say, I am now on Fentanyl
patches with oxycodone for breakthrough, which is working a lot better
for me (wooziness wise mostly, but painwise too, slightly better) than
morphine longacting plus morphine for breakthrough. And it is *so*
great to be able to drive again!!! :-D
I'm also on Celebrex, twice daily, 200 mg, having switched from Feldene
(an NSAID I was on for years), and am still, to my disgust, having to
take Prednisone 4 mg daily. I really, really hate being on Prednisone.
My onc says not to worry about being on it for this length of
time...and he says the tamoxifen will really start to work around 3
months...so I'm coming up on that in the next 10 days, and hoping that
the fact that I'm finally starting to feel a little better pain-wise is
because the tamoxifen is, in fact working (as the recent scan would
indicate). Maybe I can get off the Prednisone...I think it makes me
emotionally edgy, slightly paranoid, much more easily flipped out to
where I can dissolve into tears at a moment's notice (I've always been
very emotionally in touch and after way too many years of therapy joke
that it's like having a "port" into my heart, LOL -- but this is
different). Also, I switched from Zoloft to Effexor at this same time,
and I think up until a couple of days ago the Effexor switch was making
me very, very emotionally raw. Now it seems to be settling in some,
I'm not sure.
Anyway, if I get to the 10th of July or so (my 3-month mark for
Tamoxifen) and my pain situation doesn't feel manageable, I think I
will broach the subject again of either trying something new (some kind
of radiation perhaps?) or going to a pain specialist.
Of course, if you have any other thoughts for me, don't hesitate!!! :-)
Thanks a bunch and love, and hope you're feeling much better -- any MRI
news?
Julie

Good morning my lovely girls.
I know before I start that I will get muddled as to who said what but just read
and I'm sure you will figure it out. I am just too lazy to save as a draft then
keep checking back... forgive.
Wisteria.. I bought one three years ago. I worked at a prison for about 18
years and a part of the very old building going back to the 1850s and is now a
listed building, grade II ( a grading that means no development, the building is
of national importance, of special interest and must be maintained as such) with
it's fancy brickwork, cornices, and imposing arched entrance is just beautiful (
I am very much into old crafts and architecture) so imagine the red brick, with
all kinds of detailed brickwork patterns and design and an ancient wisteria,
about a foot diameter in the main stem, with it's twisted and gnarled branches
overhanging with these beautiful mauve racemes, in the sunlight. It was...is
awesome. I wanted a photo but alas not allowed to take a camera into the prison.
I looked at that view everytime I was able. Asked one of the works team about
who pruned the wisteria, asked for advice. Was told wisteria won't flower for
seven years after
being moved and I
wondered if I spent all the time and effort of getting one and training and
tying it in etc would I live long enough to ever see it.
Various people I spoke to said the same about its seven year flowering.
I was at a really old run down nursery, run by two 80 + year old brothers but
have a lovely place to waltz around, so much less formal that you can easily
imagine a certain plant in your own garden, not really organised at all and you
just 'happen' on something, not the sort of place you go to if you are set on
something in particular. So I found their 'bargain basement' inwhich was an
old-ish pot bound, in a four inch pot, wisteria, very much alive. I got chatting
about flowering, mentioned the seven year and the old chap bellowed 'what
rubbish.' (He is deaf and assumes everyone else is too. Going to this place is a
real outing.) Take it home, water it well, feed it some sequesterine for roses
and cut the leaders off at 1 leaf joint, prune it like you would an apple tree
with fruiting spurs and it will flower the next year. I paid £1 ($2) for it,
watered, fed and pruned it exactly as I had been told and the following spring
it had 3 racemes on it, the
next 5 and this spring 8. it is at the front of the house, a north facing wall,
trained outside my study window, actually no more than 5-6 feet high and in
spring i hear people passing and talking about it.
For the window box in the very dry position, have you thought about a little
bit of house insulation in the box, for the box side that faces the sun, because
as well as drying out at the top it could well be that the roots are over
heating, baking in fact.
Here we have a newish type of water holding granule that you mix in when filling
the pot or box, they absorb water and very slowly release it, they are reusable,
and made by 'miracle gro' I think they hold enough for two weeks without
watering but I would think that would be under average conditions rather than
extreme. South facing plants like grasses, rock plants and cacti are good but
annuals are very difficult. The latest craze here is a little 'box' hedge or
usually three in pots lined up across the window. I notice some are actually
artificial but the slightly better ones look pretty good.
Jo I am concerned that I have worried you. I want to get the jaw thing into
perspective... so here goes.
Because I have the condition and have studied it for a number of years I got
involved with three oral max faxes who were setting up a study to find out the
extent of the condition. I recorded data for them and naturally observed the
findings. I typed up the questionnaires etc. and presented some facts at a
rather informal meeting monthly over the last two to three years. Since i have
been rather poorly off and on since just before last Christmas when my femur
fractured I have handed over to someone else now but the bulk of the info has
been recorded. The study is a private one, not funded by any drug's company and
will be ongoing for as long as there is someone to add data.
Not simply because I am a patient and on the receiving end I became concerned
that doctors were not fully informing their patients about the risks of
bisphosphonates. (BIS) But what I realised is that a lot of doctors actually do
not know the details/history of the condition and either assume a great deal to
relay to their patients or simply make up something off the top of their heads.
Oh how I wish a doctor would say 'I don't know' if they truly don't, rather than
'waffle.'
Only recently I had a doctor, a palliative care consultant attached to the local
hospice as well as a hospital tell me that the condition has only ever been seen
in 5 cases in the USA and all the patients had had myleoma. I asked her where
she had got her info from, what evidence did she have and she 'waffled' about
'well it's at home now, I could lay my hands on it if you really wanted it but
it will take some finding... and she continued how the condition had been
dramatised or made up for compensation claims.' I told her a few facts and part
way through she put on this expression and said 'And what evidence did I have?'
just as I had asked her previously but I was able to say I have a great deal of
information from the study, if I obtained permission I am sure I could email her
some of the current findings but also I had files going back to 2002 of just
about everything that anyone has ever written on the subject, including Prof.
Salvatore Ruggiero at
Long Island NY and Marx in Miami and a whole lot of other notable figures.
Then she pretended to know all about them! but 'could she see that file without
asking for anyone's permission?'... 'well yes of course you can, I will email it
later today to you, just give me the address'... there are over 2700 pages on
file.
So I do have a 'grumble' with the medical profession for being unable to inform
patients...
The facts are the condition does exist,it is under-reported, it is misdiagnosed.
cancer patients are not the only sufferers. Duration of treatment and potency
are major factors in contributing to the condition. steroids, chemo and dental
interventions are commonly noted but spontaneous jawbone death also occurrs.
Recently the figures suggested for risks are around 6% after... don't quote me
on this...48 doses. and I agree that the risk isn't high considering the
millions of doses that have been used worldwide.
In many cases invasive dental treatment has caused worsening of the condition.
The NOF, national osteoporosis foundation recommend 4 times a year rather than
the 4 weekly doses recommended by the makers
To get this in perspective I have to consider the benefits, the drug strengthens
bone and reduces the risk of fractures, (skeletal events)that alone has to be of
huge benefit, when we consider the repercussions of a fracture with possible
nerve involvement which can progress to paralysis, loss of function, can lead to
more pain that may be difficult to control, and difficulty healing, never mind
the trauma of surgery if required, the sheer inconvenience, (that's a biggy and
often understated,) the aftercare required, PT. the list goes on....
Recent studies are revealing a newer possible benefit, that of preventing bone
metastases forming.( a great many doctors actually not only beleive this already
but tell their patients it does prevent mets when in fact the evidence is only
just coming in) The makers of BIS have never professed BIS prevents mets, but
does prevent fractures and reduces associated pain.
So the benefits of having the drug are huge for those with mets to the bone but
risks versus benefit must be examined and that must be from evidence not from
guess work and has to be relayed to the patients.
Hey Jo are you still awake? Or have i bored you to sleep? I am so sorry, I go
into lecture mode far too often, I'm back in the classroom... think about my
poor students over the years!!!!
I agree that over researching can be a negative experience. I am sure you are
not in denial, heck you sound very accepting, don't like or want the diagnosis
but aiming to get on with your life... it's a brillaint attitude
I think one of the problems with forums and I have to remember that this is also
one..... can be scary, partly because we have no intonation, no facial
expressions to go by and just like in all walks of life the great exagerators
(and tutors!)spring into action.
I have read some posts and been filled with anger. The 'do this or die'
message... 'I know you will die because my friend did' That is exactly the type
that irritate, can screw you up and worry/scare a person out of all
proportion... Oh Jo now I am wondering if I am one of those....
There are a number of things common to any description of symptoms and
especially that of pain, for we all react so differently to it. I have a very
high pain threshold... others don't but the descriptions can be, 'it's agony,'
'it kills' 'the worst pain I have ever had in my life' 'severe' 'on the scale of
ten it was 100' etc.. you know what I mean. Now some may find an injection
'agony' describe it as such and sometimes do so because they want you to know
how much they suffered, or it can be written or said for effect.
I used to smile at my (ex) mother in law in years gone by when she was
describing the birth of her son.. my husband; and only a week before i was due
to have my own twins.
'Ooohhh how i suffered, noone knows what I went through, (they did becasue they
had been told so often) the agony for days and days, over a hundred stitches
(was/is there room for 100 stitches?) the pain of it all, sheer agony, its just
like yesterday I still remember.... oohh how i suffered, the pain was killing
me, pain so severe that I fainted with every one, pain that made me scream and
scream, my throat bled with all the screaming... and so she went on... and then,
on a bit more but the really interesting part was... (as she turned to her
husband and with a great deal of indignation and wanting to humilaite him all at
the same time)
'Of course it was alright for you, you weren't in any danger, you were out
playing with your silly little guns in that stupid war whilst I was at home
suffering. (such sheer martyrdom!)(that referred to world war II)
I am sure you get my 'drift'at how people describe so differently.
Dare I make a suggestion... That if you want to research something then look up
the evidence, ASCO offers good factual reading., for drugs, see the makers
online info and go into 'health professionals', the majority need no password or
payment and there is often more information. Also the breast cancer societies
usually have basic info on most subjects but rarely opinions, actually a very
good site for plain speaking and facts is UK's 'Backup'
I agree some of the info can be depressing especially when you are fairly
recently diagnosed it can be dreadfully overwhelming as well and often raises up
a number of questions but few answers. I agree the best thing is to switch off.
I have always been one of those (infuriating?) people who can resist knowing. I
can very easily, not know...when someone says I must tell you something ... then
no I won't, I can't..... well Ok that's fine with me, I never sit there
wondering what the heck it was, I just accept.
Now which of you mentioned the steroids? Er.... Julie?
Yes they can be responsible for a few moods, certainly I had a few tears quite
unexpectedly on them but also a few 'higher' moments that simply were not coming
from my own persona.
Just wondering if you have asked if the steroids can be reduced rather than
stopping them completely. They do control inflammation so well. It sounds as
though you have changed drugs recently and seem better for the drug swap. Don't
think there is only one change there is nothing else to try because you can go
on tinkering and adjusting until you get the formula that works for you. Also do
ask again about rads to a bony site/s, It's quite possible for small ones to be
grouchy and large ones quiet as a mouse. It all depends on where it is in the
bone, what nerves are close by and what muscles or other structures are attached
to it. Please don't make the mistake a friend did by self diagnosing. her
conclusions were...it is smaller than the one the other side, therefore, they
(the oncs)
won't zap it. Always ask how they can help you with whatever
Anyhow good to hear you are driving once more, I bet that was such a relief.
I sat in my car yesterday trying to get it in gear, (should have had an
automatic!) the pain was too much though.
Great to hear from you both... sincere apologies for the rambling.
I am sitting here giggling away at my ex mother in law's attitude, my (ex)
father in law was 'called up' immedaietly the war began because of certain
skills he possessed, was wounded 7 times, led his men, saved lives of countless
(like so many did) and MIL believed he 'was playing with his silly little gun'
Priceless!
Really very, very sorry about the rambling.
Take good care and love from Velvet x (UK)
--- On Sat, 28/6/08, Jo H. <jo9jo9@...
From: Jo H. <jo9jo9@...
Subject: Re: Re: [Stage IV Breast Cancer] Velvet -- how are you feeling?
Jo/Julie

Velvet, thank you for the warning. I have been wondering if I should have
asked the oncologist first. I've been leaning mainly towards not going back and
this has helped. In fact, I just called and canceled the next two appointments
I had. I don't know that much about this cancer yet so I appreciate all the
information you have passed on. It's not that I'm in denial about the cancer, I
think it's because it can be a depressing disease and I didn't want to run
across stuff while in a research frenzy that would totally get me down. I did
just a little bit of research on arimidex and came across a forum where people
were talking about the symptoms they were having and it really got to me. I
started worrying way too much. So, I decided to stop looking around for awhile.
Some of what you have related that has happened to you has been a bit scary,
like the jawbone, but the rest of what you've experienced and had happen was
enlightening and encouraging. So, don't stop, girl, :-).
I think it would be marvelous to live close enough to you to get you out and
about again. Along with Julie.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Hi Jo and Julie
Don't really want to poke my nose in but are you aware that massage moves lymph
fluid around and can be transporting cancer cells to new areas? I know when you
are stage Iv that cancer cells are roaming around anyway but massage should only
be carried out if your oncologist gives you the OK
The lady who did my back massage weekly for years, (not for any pain, just as a
treat) would not massage me again until she had written to my onc with the type
and area of massage and he had replied giving her the oK.
She is a very good practitioner, teaches all kinds of therapies in colleges and
indeed when she first mentioned that she would be unable to massage until she
had contacted the onc I actually thought she was a bit over the top or even
joking but have read quite a bit about massage being given and lymph fluid being
moved.
Jo I am particularly concerned that your chiro is popping a rib back into
place, how does he know it is out of place, that may be normal for you wherever
it is but words like feeling 'beat up' after this worry me that he will break
one of your ribs that could have cancer in it then cause you considerable pain
and broken cancerous ribs or any bones for that matter do not heal at the same
rate that non diseased ones do. deep massage can bring on inflammation too which
will upset a cancer site making it far more painful.
Jo I am sitting here torn between being alarmist yet at the same time wanting to
warn you and hope i have come across with the intention I want to convey. i know
i sound like an interfering busy body but when I read something that I feel
could be injurious I have to respond. Give it a thought please.
I have heard it said that there is a book deep inside every single person on
this earth but alas not the typist. I have spent almost another 7 hours today
typing, for some reason the flow is just going, what I have done to make this
happen I don't know, usually I type a bit then get stuck for a word then can't
move forward and i cannot just leave it and come back to it later, so I lose my
flow.
you just type away, get your book finished and let others enjoy.
Oh girls why aren't you in England, we could meet up and talk and talk, I am
certain we would hit 'it' off immediately and the offer to be scooped up was
such a sweet thought. thank you.
Take good care and love from Velvet x (UK)
--- On Sat, 28/6/08, Julie Jones <j.things@...
From: Julie Jones <j.things@...
Subject: Re: [Stage IV Breast Cancer] Velvet -- how are you feeling?

Velvet, I've been tinkering around with a book about my experiences in life,
too. Been working at it for a couple of decades. I know what you mean about
writing some of it and then having to take a break from it. Gee, just one
chapter does that to me and then I don't feel like going back to it for a year.
My life had it traumas but probably not like yours but people seem to like to
read what I write so I keep at it when I'm feeling like dealing with it.
Don't worry, you'll remember how to drive a car. It's like bicycle riding, you
never forget.
I've been going to a chiropractor for my sciatic nerve and also for a muscle in
my side that has bothered me for four months. He has me doing massage therapy,
too. I'm on the verge of quitting. I've just gone for five sessions--two with
the massage. I'll tell ya, I really can't stand the pain of it. He says one of
my ribs is a bit out of place so he really wants to get it popped back in so the
muscle pain will stop. But I just can't totally relax like a dead body like he
needs when he gets to pushing on the back. Ugh. He didn't do much with the
sciatic nerve on Thursday. It's been worse since then. I felt pretty beat up
after that session.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Oh Julie what a sweetie you are, thank you for asking. Yes i did get a new
course of antibiotics and they are kicking in very well and the chest infection
has eased though still around but then it has been some days building up
awaiting this path result to come through. but not feeling generally poorly,
just still coughing a bit. The arm and shoulder are still a nightmare and I
still wait for the MRI result which wasn't on screen when I went to the hospital
yesterday ~ maybe Tuesday when I see the ortho chap as he is in the loop now
though originally was involved with my femur pinning.
You sound as though you are having a hard time sleeping, are you OK?
likewsie will write more when I can as currently on a roll with the book I am
writing, have been writing for the last 20 ++ years, spent 7 hours today bashing
the keyboard and now have an aching rear end from sitting too long.
Take good care and love from Velvet x (UK)
--- On Fri, 27/6/08, Julie Jones <j.things@...
From: Julie Jones <j.things@...
Subject: [Stage IV Breast Cancer] Velvet -- how are you feeling?

Hi Velvet,
Just wondering if you got the right antibiotic and how you're feeling.
Will write more soon in reply to your last post, but must try to get
back to bed and sleep tonight! :-)
Hope you are feeling better and the nasty infection is on its way
bye-bye!!!
Julie

hi jo
unfortunately it is likely that you will get more mets in the bones but and a
big but, over 8 years i have had only six sites out of about 64 that needed XRT
(radiotherapy) one spinal site that was close to damaging a nerve outlet at S1
or S2, can't remember which, a rib, pubic bone, scapula glenoid fossa in the
shoulder and one side of the pelvis, which has been hit with XRT twice now. i
haven't included this current shoulder pain because the official diagnosis
hasn't yet been made. generally speaking my pain levels are well controlled and
over the years the amount of pain i have had whilst pretty nasty has been
relatively short-lived because XRT has been so effective. this current pain
began at the airport in Cyprus when i was having difficulty getting over a step
and doorframe from an outside eatery. the person behind me decided he would
hurry me along and pulled me by the shoulder and arm, thinking he was helping i
expect or just plain
inpatient....then the pain began later that day. sometimes people think they
are doing you a favour by helping, when in fact i wish they would leave me to
manage on my own... we develop coping strategies as we go along, not
necessarilly quick ones, but we learn which parts to move first, which parts to
support etc. and others can react to you quicker than you realise and can tell
them not to... when i think back through many years of all the times i have
needed a handsome hunky male to help me and they have just walked on by.....
when i think of my twin pushchair not going through one shop door... it was too
wide and i had to open both doors .... and was there a knight in shining armour
around... not on your life.
bisphosphonates really help with painful sites too but i am on restricted dosage
because of the dead jawbone thing they caused.
this is just a blip, a biggish blip and coupled with the infection and feeling
ill, i have had a rough ole time. i think the infection may be waning today, not
coughing anything like i was. in many ways it is the boredom kicking in, the
same four walls, not driving and doing things for myself, having to ask my sons
to do such pathetic little jobs for me each day that is so frustrating... and
not even feeling like doing much either.
my dear little cat Babe comes up on the sofa and touches me so gently with just
one paw... i am sure she senses i am rather delicate at the moment as normally
she is up on the sofa and barging onto my lap to curl up... when she reaches out
this one paw she is staring at me, almost asking 'can she come?' what a sweetie
she is, a rescue cat, had her about two years now and was left to approach me
whenever she felt the trust, never picked up, she had to do the trusting and one
day she dared to come up on the sofa and sit by my side, just touching my leg, a
few days after she tried out my lap... such a courageous little mite considering
her dreadful kittenhood, two litters by 15 months and malnourished, she was hit
by the children in her previous home and was so so timid...... whoops, i rambled
there.
and sciatica... yes that can be so nasty. i had a TENS on mine which worked very
well, quite expensive to buy but if you have a friend with one ask to try it
out... they don't work for everyone nor indeed for every pain......they are
however normally good for nerve pain tho'. you chiro may have one you could
try... then if you got some benefit you could search for one reasonably priced,
multi chain stores seem to be cheapest.. probably Walmart.
anyhow i hope your sciatica clears up very soon.
how are you otherwise Jo? i may well have missed some of your posts, not been on
here much.
Take good care and love from Velvet x (UK)
--- On Mon, 23/6/08, Jo H. <jo9jo9@...
From: Jo H. <jo9jo9@...
Subject: Re: Re: [Stage IV Breast Cancer] new member

I am picturing that, Julie--ice pack slipping down the pant's leg, LOL. Thanks
for the encouraging words that maybe I won't get pain in the bone mets. With
the one piece up at shoulder blade level, I can feel a twinge from it from time
to time if I've been pretty active doing things with my arms but it's not a
problem. Not a pain, just an awareness.
I've gone to the chiropractor a couple of times in the past week to get some
help with the sciatic nerve. I've also had this muscle pain from my side to
under my boob for months now. He says that the rib at the back is the culprit
for that pain. The rib has popped a bit out of place. He's mindful of where
the bone mets are so is being careful when he manipulates.
I just did the Relay For Life here over the weekend. I'll tell ya, that is a
trip. This was the first year for our group, an African drumming group, to
participate in this. We won a plaque for best team spirit. I figure it was our
first year and everything was new to us so we were spiked up for it. I think as
a whole we want to do it again next year but I'm not sure what the real
consensus is yet. I don't think we should bring it up till next year. Let all
the tiredness of it all get out of our system, ha. We also did our usual
performance on stage for them and we were well received. But we usually are
anyway.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Sorry to hear that something nasty has got ahold of you, Velvet. I don't know
how you cope. I've had a sciatic nerve bothering me for a month and I was
letting it get to me last week. It's actually better this past two weeks than
it was but I got to feeling sorry for myself that I had such things to cope
with. How am I going to fare if this cancer grows and migrates more and I have
pain from that all the time? I guess I'll find my way when and if it happens.
I'll think of you for inspiration.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

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Belinda Shale
www.thepatientsvoice.org
PS Please remember all our projects are research projects and we
never try and sell you anything. Ever.
PPS We are also looking for men with prostate cancer for this study

for the her 2 positive
the drug had just recently made headline this year it says its better
than that herceptin and could decrease size of tumor better than
herceptin problem is I don't know where to buy them and how much
they cost .. anyone who knows about his pls reply

Hi ladies,
Hadn't heard from you in awhile so good to hear your voices! I also
just signed up on the bcmets mailing list which seems like a good one.
(Maybe that's connected somehow?)
I'd been wondering about sugar stuff too. When I was first dx'd two
months ago, I didn't want anything sugary at all. Now, maybe the
tamoxifen is kicking in more, I'm not sure - I'm having afternoons of
steady hot flashes for several hours (like hey, my afternoon in the
rainforest, LOL -- soaking scalp, etc.) - and I seem to want more
sugary foods, which is unusual for me.
Anybody know a good site or article that outlines the optimum diet once
you are in the Stage IV club?? I've been a vegetarian for 30 years and
eat pretty healthfully, so normally I don't read a lot of nutritional
advice, but a tuneup at this point might be a good idea.
Next week I will have my first repeat scan 8 weeks after starting
tamoxifen. I'm nervous, of course!
Today I'm going to call my onc and ask to try Fentanyl patches for
pain, as the long-acting morphine just isn't working. I'm also going
to ask to try Effexor for hot flashes and to replace Zoloft, which I
understand can impede the work of Tamoxifen. I'm thinking of asking to
try Celebrex, too, instead of my generic Feldene (an NSAID that I've
taken for years for joint pain).
I'm having a hard time walking -- just pain in the lower back, butt, SI
joints, etc. I shuffle my feet like a 6'2" old lady!!
Velvet, when I have time I'll write to you about my clematis. I still
picture you patiently untangling yours!! :-)
My kids' last week of school is this week and every day it's something
crazy -- funny hats, pajama day, playing at the park, etc., with some
silly thing to bring. I'm so looking forward to summer and no lunches
to make!!
Hugs to all,
Julie

Hi Jo
I think keeping away from any pesticides is a good thing to do anyway. Sugars
come in many forms and cancer likes a glucose of some description, it doesn't
matter what you eat sugar wise as the body will reduce it down anyway. I reduce
sugar as much as possible but you simply cannot cut it out as the healthy cells
need it too. I just do my best with as little extra as possible because natural
sugars are in fruit but I need the fruit for other health giving properties.
I spent the first nearly 8 years going through the aromatase inhibitors each in
turn until they failed to work anymore, unfortunately the cancer does become
resitsant to them in time. Like you i thought when the cancer returned then
straight in with chemo but surprisngly I am only just starting that.
Take good care and love from Velvet x (UK)
--- On Mon, 9/6/08, Jo H. <jo9jo9@...
From: Jo H. <jo9jo9@...
Subject: Re: Re: [Stage IV Breast Cancer] SPOTTING FROM THIRD HERCEPTIN
CHEMOTHERAPY

Welcome, Julie, well, sorry to have to welcome you here but here we are. This
group can be fairly quiet but if one poses a question or just wants to talk
about something you'll get some responses. I've been here for about 3 months.
I have Stage IV BC that has moved to a couple of places in my spine. I just
learned of this fact in early March after the results of more tests came back.
I had a mastectomy on Feb. 8 of this year. I'm ER & PR + so I'm currently
taking arimidex. My bones are strong and solid so I don't need to take anything
to keep the density (yet).
I keep mulling over information I've read about several times about cancer
cells feeding on sugar. I'm already diabetic and very insulin resistant so I
seem to have a hard time keeping my blood sugars low all the time where I need
it to be. And, I love sugary products too much as it is. I have wondered if
Splenda would be considered sugar when it comes to cancer cells.
I always thought the first line of treatment was chemo and radiation so it
feels strange not to be doing that. Though I do feel relieved not to be going
that course yet. 'Course, it could be coming down the road if the oral meds
don't do the trick. So, I wonder about stuff like too much sugar in the body
and if keeping away from pesticide sprayed food products would really benefit me
since I already do have the cancer in me.
Jo H.
I'm participating in the Relay For Life this year. Might you consider a
donation for me? Thanks.
http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeOhioDivision?pg=perso\
nal&fr_id=7424&fr_id=7424&px=5631786
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Hi Rosie,
I'm brand-new here as of yesterday, and haven't had time to post an
intro yet -- but just wanted to say that I'm 49, and had been having
regular periods pretty much every 30 days, but after 8 weeks on
Tamoxifen, I haven't had a sign of anything, and am now having entire
afternoons of hot flashes, like living in the rainforest. Not sure if
this means I'm veering into menopause (haven't had any bloodwork to
check into it yet)...but I've been wondering.
Looking forward to getting to know and learn from you all, and will
post an intro soon. I read a lot of the June posts and you seem like a
really wonderful group (I have a little experience with "a club nobody
wants to join" as that's what we used to call ourselves over in the
infertility trenches -- LOL!).
Julie
(Stage IV diagnosed 4/6/08, bony mets, on Tamoxifen & Zometa)

I WENT INTO IMMIDIATE MENAPOSE AFTER MY FIRST ROUND OF CHEMO IN '99,
KNOW I AM ON MY THIRD HERCEPTIN CHEMO, AND I STARTED TO SPOT, EVERY
OTHER DAY OR SO, (VERY LITTLE, ONE WIPE ON THE TOILET PAPER). I FEEL
LIKE IT WAS 9 YRS AGO, BUT IN THE LAST DAY OF MY PERIOD?
HAS ANYONE HERE HAVE THIS HAPPEN TO THEM, PLEASE LET ME KNOW.
THANK YOU, AND GOD BLESS
ROSIE S

Julie, you need to sign yourself up. Here is the address for the other group:

Yes, I'm on the other list, too, but I'm on No Mail for now. There were way
too many posts there for my pleasure and a lot of them were just one-liners in
response to others messages. And I just couldn't take all that information
about chemo and radiation and side effects and symptoms and problems when I'm
not doing chemo and rads. It was overwhelming. But I am still subscribed and
when I do need that information I know it will be a good resource for me.
Jo H.
I'm participating in the Relay For Life this year. Might you consider a
donation for me? Thanks.
http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeOhioDivision?pg=perso\
nal&fr_id=7424&fr_id=7424&px=5631786
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

I julie,
Sorry it took me so long to get back to you. Things have been a
little crazy around here. My lung symptoms are shortness of breath
and it hurts if I breath in too deep - like yawn or do aerobic
excersize...I start caughing. I started chemo on Wed and will be
getting my port put in on Tuesday to do chemo once a week for 3 weeks
and one week off. Then they are going to scan me again during week
4. This hospital is being much more aggressive and cautious than my
last hospital...I wish I had started with this one...oh well,
hindsight is always 20/20. I spoke with my onc again during my chemo
treatment (she came to visit me) and I asked her if she had ever
witnessed anyone in Stage 4 go into complete remission. She told me
that in the last 2 years she had been with this hospital, she had
seen 2 people do it. Ok...so out of how many? I don't care! The
point is that it's possible and I'm always willing to play those kind
of odds when it comes to me and my kids. Needless to say, this made
me feel much better and pretty much "snapped" me out of my
depression. Yes, it is hard with kids being a single parent, but my
kinds are very good to me when my energy is down from chemo. Wed,
when I had my chemo I was pretty drained as well as yesterday, but
today I'm feeling pretty darn good! Trying to get my laundry done
before the kids get out of school ;-). Yes, I spent 6 months in
chemo, 7 weeks of radiation, a mastectomy on my right side w/
lymphnode removal and a full hysterectomy. After all that they
didn't tell me I was in remission...they told me I was cured and
there was no cancer left anywhere in my body (however they said this
without taking additional scans). A little disheartening when 2
months later now they're telling me I'm Stage 4...ugh... Hence the
switch of hospitals to one that'll monitor me MUCH closer and be MUCH
MORE aggressive!! I really like the hospital I'm with right now
(UCSD) - and they have MUCH more resources available to me. I'm also
working with an entire team instead of just the onc, like my last
hospital. Thanks for getting back to me and I hope your situation
gets better soon!
--Mel

Thank you for your thoughts Marianne and for putting together this
great group!
--Mel

Hi Marianne & all,
Ah! Well, I'm sure I'd learn a lot on the other group. What is the
name of it? Or could you just sign me up? If it's too busy I can
switch to digest.
Frankly, my only hesitation or concern about signing up on any general
breast cancer list is that I might feel horrible by comparison or feel,
toward some other poor person who feels she's living through hell --
gee, honey, you're living my dream, of having a breast removed and
having chemotherapy/radiation and a chance of no mets...! ;-) I hope
you know what I mean and that that doesn't sound truly lacking in
compassion, because I have *tremendous* compassion for anyone and
everyone who is anywhere on the spectrum of having bc...and I would be
very compassionate and sympathetic, I'm sure, and try to offer whatever
support I could. If it isn't right for me, I would not stay.
Anyway, if you can, Marianne, would you please sign me up or let me

I don't know why this group IS so quiet, Julie but it has been ever since I
joined three months ago.
I'm very sympathetic about the pain issues you are having. I have no input for
you about it since I am lucky so far that at this stage in the cancer I have
it's not giving me pain. On the other hand, my sciatic nerve sure is. Off and
on, off and on, it's been licking at me. Ugh.
Jo H.
I'm participating in the Relay For Life this year. Might you consider a
donation for me? Thanks.
http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeOhioDivision?pg=perso\
nal&fr_id=7424&fr_id=7424&px=5631786
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

It seems like over the last few years there are less and less posts. I guess
some of the ladies have just moved on or just want some freedom from breast
cancer, hard to say. This is a sister group to the original group. We do
have ladies anywhere from not diagnosed yet to Stage IV. You can always
join us there. I have to warn you that we are VERY active. Ask Velvet she
will agree on that!
Prayers for everyone.
Hugs
Marianne

http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeOhioDivision?pg=perso\
nal&fr_id=7424&fr_id=7424&px=5631786

Hi Julie
sorry to hear the pain is still not controlled. I am a bit busy today so I am
going to make this quite brief....well brief for me that is...
I wonder if you are over opiated, I know you are still getting pain and in
theory may think under opiated but that leads me to morphine may not work for
you so you get all the negative aspects of it and none of the pain relieving
effects, the positive aspects. (I am in a huge study to find out why some people
react to morphine and others don't, had blood tests and answered about 40
questions.) It's just a thought and maybe a change to something like gabbapentin
or another type of opiate might be worth investigating. I am concerned that you
are still sleepy and not pain addressed even after this length of time, some
people simply do not respond to morphine. Morphine may also potentiate the
effects of other drugs, two things come to mind, ibuprofen instead of some of
the morphine and are any of your anti sickness meds an antihistamine? If so then
these will make you sleepy especially on top of an opiate. If you have any tummy
trouble maybe get some
Gaviscon or one of the proton pump inhibitors maybe Omeprazole but the names
will be different in USA though I have given the generic name, think a doc has
to prescribe these.
Other anti nausea drugs here in UK are cyclizine, metoclopromide, domperidone
and granesitron (all generic names) which are not antihistamines and shouldn't
make you drowsy, I've never known them to do so but can cause constipation as
they tend to stop the gut motility.
It maybe that your PET scan will show a slight worsening but it still remains
that you need this pain addressed, worse or not, flare or not you are still not
controlled painwise. Do you have access to a good pain consultant or a pain
clinic, even, do you have a TENS, the nerve conduction interceptor ~ have no
idea what they are called in USA ~ sorry honey?
I feel for you so much because i know how enveloping the pain can be, and then
add the frustration of expecting things to be improved. I was completey pain
free within a few days when I went on morphine and everyone else i know has been
pain addressed likewise except for one friend for whom morphine does zilch.
And maybe you have some XRT zapping to the biggest sites, still you need to
address your current pain until that kicks in.
Just a note do you have ginger beer or ginger wine ~ it is kinder on the stomach
than the tablets?
I hope this helps and doesn't confuse you... talking of confusion is Mel, Jo or
is that someone else ~ I am completely confused because the lady wrote no name.
Take good care and love from Velvet x (UK)
--- On Fri, 30/5/08, Julie Jones <j.things@...
From: Julie Jones <j.things@...
Subject: [Stage IV Breast Cancer] Julie checking in--nausea med recommendations?

Hi gang -- I'm not sure if it's all 300+ members as noted on the
website, or just a few listening tonight! ;-) Hope everyone is doing
well.
How are you, Velvet and Jo? Jo, I forgot to reply to what you said
about being in Ohio for 45 years! My mother's mom was from Ohio, and
I'm trying to remember the name of the little town, darn it. Should
have written this down before my mother's Alzheimer's got so bad! ;-)
(My grandmother died of pneumonia at age 30-something in 1928, when my
mother was 7 -- she had married my mother's dad, who was Frank Beal, an
old movie director/actor in Hollywood.) Anyway -- huge digression
there, but that's my Ohio connection! :-) My mother was raised in a
Catholic boarding school in Momence, Illinois.
I'm up eating half a bagel at a little before 1:00 a.m., having figured
out that my stomach feels much less upset (from morphine) if I keep
something in it most of the time! I think I'm going to have to become
one of those people who keeps crackers in the bedroom/bathroom. Of
course, my children sleep on either side of me (not to mention one or
two cats), so this could be dicey! If they hear munching and crunching
it's all over with!
Say, has anybody have good luck with a particular nausea medication?
I've tried a few (Compazine, Zofran, Kestril?) and they all make me
*soooo* sleepy -- which I am already anyway with the morphine! I try
cutting them into thirds, but if I take them anywhere around daytime
when I need to be functional, all I want to do is sleep and sometimes I
literally cannot keep my eyes open, even though I'm awake. I think
Zofran is the one that does that, as I tried that again today.
I've tried ginger capsules, which do make my stomach feel better, but I
immediately start having a huge continuous hot flash, just dripping
with sweat, ugh -- I know ginger is a "hot" herb and can cause this,
like when you're out eating wonderful Thai food, but I think I was
already prone to it a little bit even before the Tamoxifen (age 49,
periods getting irregular), and then the Tamoxifen caused more, and
then with ginger on top...it is not so great.
Papaya is something that has always helped my heartburn, and I need to
buy some more -- I bought the wrong kind that has a bunch of other
stuff in it that I don't want to take. Just plain papaya enzyme, the
chewable capsules, is the best thing I've ever found for heartburn
(helped me tremendously while pregnant). Plus, it's just a food, and
I'm pretty sure all it can do is make your stools looser (and who cares
about that if you're on lots of morphine?!).
I had a long talk with my onc's triage nurse the other day. We figured
out that probably the reason I'm feeling worse pain-wise is because we
knocked the prednisone down from 4mg to 2mg per day. I upped it and
now I can walk a little bit better. The Zometa really did not help at
all in terms of pain or, I should say, immobility. I've read that it
can actually increase muscle and joint pain. As I sit here and type,
or as I lie in my bed, I really don't have much pain -- but I can
barely lift my right leg to cross it over my left, and when I try to do
that, it hurts like hell in my lower back. It hurts to stand and to
walk/bear weight, and getting out of a chair is murder. I just hate to
keep throwing more pain medication in when the pain is really limited
to when I try to move -- but, I have to move!
I really, *really* hope what I'm having is a flare, and not that the
cancer is getting worse -- I guess I'll find out after my repeat PET
scan on June 11th. I definitely have more/worse symptoms now than when
I first started the Tamoxifen 6 weeks ago. There have been ups and
downs, but overall, I'm just as symptomatic now if not more so.
I'm also not sure why my onc is not jumping in to offer me injectable
radiation treatment for the pain. Maybe he just wants to see what the
repeat scan shows before tossing anything else into the mix. I think
his next thought is chemotherapy (as opposed to Tamoxifen). I wish I'd
thought to talk to him about this at my appointment a week ago -- the
nurse said there was nothing in his notes about it, which I believe --
but how unsatisfying. If it really can help...I wonder what would be
the downside to just going ahead and doing it...either that or zapping
the bad spots, as Velvet has said.
I'm trying to work and get caught up on paperwork and
appointments/interviews...it's hard to schedule my out-of-town work
because of kids' school schedules (must be done over weekends because
DH and the kids have to drive me). Things are busy with kids' last two
weeks of school (different schools & activities). It's good -- keeps
me out of trouble. :-) But, I'm stressing because I know my clients
are antsy about getting things done, and I'm not moving quite fast
enough. Wish I could drive myself...but the onc just says "No way, not
on all the narcotics you're taking." I wonder how much I'd have to be
*not* taking for him to agree...should have asked that too (sigh)!.
Anyway, those are my thoughts tonight and I'm also wondering how other
people are doing. It's awfully quiet! :-)
Your new, steroid-energized, bagel-fueled midnight verbose member, :-)
Julie

Hi Rosie,
That is really interesting. I wasn't here to catch your earlier post,
and I had never heard that before about the water.
I'm glad the chemo is helping and you have less fatigue!
Take care!
Julie

a few weeks ago i asked if anyone has this or can tell me something,
anything, but at least know i can tell you, so if someone is going thru
this they may have an answer.
i was able to ask my dr. and he explained it this way, when the tumors
start growing again, stage 4, because the mets are not responding to
any oral meds or injection of med, it is time to go to chemotherapy,
because they (cancer cells of the tumor or tumors) may cause water in
the area that they are, (in my case, bc cells mets to the right lung,
two of them). but they chose to do it to the sac of the heart.
i am on chemotherapy with herceptin, and already less fatige because of
the water. minimal side effects.
i hope this info will help someone here. i do not post to often, but do
try to read your posts.
bless you all,
rosie s.

Hi Velvet -- thanks so much for all the wonderful words of sanity and
comfort here. I feel like I just landed in a really, really
comfortable group of folks where I was just very lucky to land!! :-)
Wish we were all sitting around at my kitchen table. The cats would be
twining through our legs and my nice DH would make us all lattes and
then go do his thing. LOL!

I just read the approach to radiation (injected and/or zapping) and I
really wonder why my onc is not thinking about trying it soon, in
conjunction with the tamoxifen -- what's there to lose?! I really am
having significant pain and most of it is in one area of my back (well,
the two paraspinal/SI joint areas -- definitely zappable especially
when you consider that they are "zapping" people in terms of half their
body these days, sometimes, it sounds like.
Definitely going to be 2nd opinion time soon for me...I need to get
going on that...sigh.
I'm also going to call tomorrow and just say that I really am a lot
worse, and the Zometa didn't help...and see what they suggest (other
than more morphine!).
Interesting. I sure have plenty of fat cells!! :-)
I always figured I had a risky relationship with estrogen, as I took
*so much* hormone (11 cycles of injectable gonadatropins plus 6 of
Clomid, which I realize isn't estrogen, but it's a fertility drug that
I believe boosts your estrogen level because it stimulates production
of egg follicles) when I was trying to make my kids. Then this summer,
because I'd had surgery that revealed a lot of endometriosis (didn't
know I had it 'til then), my gynecologist put me on birth control pills
(estrogen and progesterone based), and I took those for 3 months, which
I now think probably just acted as banana splits for the cancer. :( I
always feared I'd have some sort of reproductive cancer after I did all
that infertility treatment -- never thought it would be breast. :(
I should, thank you -- tomorrow I will try to call that onc and get
some action.
I have a thing to go to at my 5th grader's school that is stressful
(observation of an open house so I can see the teachers teaching that I
want to do that I haven't had a chance to do before; they're having
this open house and I'm going to go, but I'm not sure they'll like
having me go -- sorry, too bad folks, I have cancer so you can't give
me a hard time - LOL - long story!). So, after that, I'm on it.
You have a wonderful attitude but I just wonder are you doing anything
for yourself? You also need to be pampered or get pampered. I was
thinking about the containers and the planting mostly because I am a
very keen gardener but came up with a compromise, rather than buying
plants how about you and your 5 -y-o raising some seeds straight into
the tubs/pots whatever, a tiny proportion of the cost and a sense of
achievemnet too. But do think a little more about yourself. I know you
have a business to run but surely a couple of hours every now and again
doing something quiet and peaceful will benefit you. You are jsut as
important as the family.
Thank you. I do need regular reminders about that. It's just so hard
being the only breadwinner, I feel so much responsibility to try to
work work work as much as possible (keeping in mind that I'm probably
working 3 hours some days, 4 hours other days, maybe up to 8 if it's
working in the office some days, but not all). Today I had a big nap
with the cat, which was great!
I took some anti-nausea stuff (must post about that) and everything I
try makes me *so* sleepy. :( The morphine apparently makes me nauseous
in the mornings, mostly -- it takes awhile before I can really get
going; I have to figure out whether ginger ale is going to do the trick
(I also take a ginger capsule which seems to help) or if I can just
start taking my pills in the morning with water (which sometimes makes
me feel more nauseous).
I don't think anyone would be offended by your 'Goddamits' This is a
bc site not a religious site. I did notice a while back that one lady
left because she thought it was too religious, I think quite frankly it
was her loss.
Wow! Well, I've left lists for that reason, but this one doesn't
strike me that way at all (although I certainly feel warm and welcoming
to people who are much more religious than I am, and I have lots of
friends, both cyber and IRL, who are more formally religious than I
am). So, if people are here who are religious, again, I really don't
mean to offend anyone and I'm glad you feel I'm not! :-)
My children came home from school many years ago, and I could hear
them in their playroom saying 'itchy Boris!' It was like some kind of
swear word to them, so years later they, and I too have the 'itchy
Boris' moment or moments and use it just the same way as your
Goddamits. I know what you mean by having a trigger word that sends you
into action. I have another saying 'this won't get the baby bathed'
That's a really good one. Itchy Boris is too funny!! I'll tell my
kids that one. With them, lately, it's something I said -- I thought
they had said this and I asked, "What did you just say? Pig-a-bone
yellow??" Well, it wasn't pig-a-bone yellow, but pig-a-bone yellow now
just has to be mentioned in our family for there to be a riot and
giggles that put everyone on the floor!!
Hey long posts are OK, heck I should know as I am a professional
rambler, you just write whatever and whenever.
Thank you! Green light accepted! :)
I don't know if there is a down side to having certain sites zapped by
XRT. When you have bony secondaries they can be zapped more than once
as long as there is a good space of time between them. It does depend
where they are and what organs/structures may be in the beam pathway.
Since they can't be zapped too often then maybe this is the downside,
but XRT
XRT = zapping radiation, I know, but what's the acronym --?
certainly helped my nasty grouchy sites, tho' the results are not
immediate. And by the way I name my sites. The big one in my pelvis is
Cedric, Cedric and I don't always get on and we have little chats every
now and again.
Oh, Velvet, LOL, I must come up with something for my lower back!!
It's been my nemesis for years anyway and now -- !!!
I think we all get our 'moments' when the tears leak through. Ok so I
ahve had mets for 8 yeras but there are still times when I get deeply
depressed tho' it isn't often and not for long. I just accept thta I
will, go with it, allow myself to be an old misery for a couple of
hours then I feel thats better and get on ith everything again. Just
because I have had mets for a long time and theoretically should be
used to it doesn't mean to say I am anything other than human so having
my 'moments' is fine I don't beat myself up over them.
That is wonderful, makes total sense, and you are an incredible
survivor and human -- isn't it funny how sometimes life just puts
someone in our path that we're meant to meet and I feel that way about
you folks here. I feel so much better just knowing that I can come
here and unload and you will understand. You so clearly do. It sucks
whether you're 49 or 60 or anyplace else on the age chart, and life is
so short anyway that we really do have to and want to get on with it,
and do the things that need doing!!
I am going to find a way tomorrow to get out and get my fingers in the
dirt and maybe buy a few plants or at least a nice big hanging plant
for the porch...we have one of those old farmhouse type houses (looks
like an oldie but really when you get up close it was built in 1960 and
has alumininum siding - LOL!) that is pale yellow with white trim and a
long front porch. So, for us to not have a hanging plant in the summer
months really should be illegal. The house requires one and I am going
to get one. So there, hrrumph!!
I have to watch out for "better living through spending" if you know
what I mean -- but I am a veteran, expert thrift store shopper (just
spent $70 on spring/summer clothes for my 5-y-o daughter and really
could have spent $300-400 if it had been retail). It would be fun, of
course, to go do the spending someplace other than thrift stores right
now but that satisfies me most of the time -- it's the thrill of the
hunt that I'm in it for, anyway. :-) And I do love plant-shopping....
I think it's starting to bum me out seriously about the not driving,
the lack of independence. I wonder if I can get my morphine down to
the long-acting stuff only (100 mg. every 8 hours), how that will be.
I don't feel too overly sleepy when I'm just on that, but I've been
needing the breakthrough morphine too almost every time. I'm out right
now so I won't have any until lunchtime tomorrow (breakthrough stuff),
so we'll see how that goes with the school meeting and all.
Must get to bed but I'm thinking of you Jo and Velvet, and "Mel" if you
are around...everybody take care tonight.
Julie

Julie, you're not taking up air space here. This group doesn't seem to
generate a lot of e-mails anyway so it's been nice to see some posting here. I
can also be a long-winded correspondent like you and Velvet say. So, we will
bear with all of us, LOL.
It's alright to let this disease get you down at times. It's a wonder we're
not all quivering basket cases hiding out in the closet. At least, that's the
feeling I get that other people think is what we are doing until they see us out
and about and smiling and doing all the ordinary things that people do. I get
asked all the time, "How are you doing?" and they give me that look like they're
trying to see what's different with me and they can't see it. They are always
so surprised to see that I'm out and functioning. But I know where they're
coming from. I alwa
ys thought that the first line of defense in cancer was chemo. And if you
weren't doing chemo then that was a sign that there was no hope left for you.
And it seems that everyone else out there has that same idea. Except for those
of us who have had this disease introduced to us and have learned that there are
these little hormone pills that are supposed to be taking care of it.
You are still very newly diagnosed with this so, yes, it's going to get to you
more often. Your attitude towards getting this and dealing with it is amazing.
I was diagnosed in the first week of February. There was a period of two weeks
between the mammogram, the ultrasound and the biopsy that I was a weeping mess
and depressed. And then I got the diagnosis and the recommendation that the
left breast should come off and I just went on from there. I accepted it and
went on with my life.
But last week, I was in my drumming group (African drums) and holding my arms
up high to play this bass drum for a couple of songs and then I started to feel
the one spot of cancer in my back. And it pissed me off and I got down in the
dumps about it that night and the next day. I didn't want to be physically
reminded of the fact that I have Stage IV cancer, that it's in my spine and
can't be operated on, and that I'm hoping that this little white pill is taking
care of it. After the initial shock of learning I have Stage IV cancer back in
February, like I said, I've moved on with a "this is my life" attitude and my
shocked and numbed brain cleared up eventually as I accepted that this is the
way it is. And my life got back to it's usual course. And then to feel where
the cancer actually is was a bummer. So, I expect to get some ups and downs in
the course of this thing. My attitude is good but at times like this one I feel
the shadow over me. The key is to get over it as quickly as you can.
I have noticed that I seem to have a heightened sense of things too since
February. I do wonder, is this the last time I see a spring or a summer or a
snowfall. Even though my attitude has amazed others and I feel strong in coping
with this disease, I still can't help but think of the dying side of this. I
joke with my husband that I'm going to write a manual he can give to his next
wife so she'll know how to treat him. And there are other jokes like that with
him and my kids. My kids are at least all grown up and with families of their
own.
And as for religion here. I'm more into the way you feel about it. If I was a
church goer, I'd go to the UU--Universalist Unitarians or is it Unitarian
Universilist? Heh, heh. My daughter and her husband go there and I have gone a
couple of times. Actually I've gone enough that I almost feel like a member
there. But when I go it's usually been to participate in something our drum
group is doing. Oh, and twice my husband was the guest speaker. One of the
women there found out that he went to theology school for a year when he was
just starting his careers and then he got out of it and she thought that would
make a very interesting topic for the UU's to hear. Like what do they really
teach you in theology school. Actually the main thing my husband learned from
one of his teachers is that, "Studying the Bible is not a study of god's word,
it's the study of man's ideas about god's word." They thought he was so
articulate and funny that they wanted him back again.
Anyway, talk about longwinded, LOL.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Yes, you are quite right Julie the AIs can only be given to post meno but check
it out again as new theories and studies can change the protocol almost
overnight.
I have been reading about injected Strontium for some years and similar
injectables (tho' I haven't looked up the site you mentioned yet, I am presuming
this is what it is about for the moment)and whilst it seems a good treatment for
prostate cancers rarely is it used for breast ~ don't know why, have asked and
no one seems to know other than they say there are other better treatments
available.
What I like about the AIs over tamoxifen is their abilty to prevent estrogen
being made by inhibiting aromatase (the precursor of estrogen) Tamoxifen just
competes with natural estrogen for a window of entry on the cell wall, the cell
not being able to use Tamoxifen when it gets into the it. But the good thing
about tamoxifen is that it is supposed to increase bone mineral density rather
than depleting it like the AIs do.
I prefer AIs because I'd rather not have estrogen made in the first place. Even
after meno (which I am) the body can still excrete estrogen from the adrenal
glands and estrogen can be released from fat cells as they act as a storeroom,
even very thin people have some fat cells.
Am I teaching again??? I do ramble a bit ~ I expect you have noticed that
already!!!
Pleased to hear I 'injected' some action ~ go for it
Take good care and love from Velvet x (UK)
--- On Mon, 26/5/08, Julie Jones <j.things@...
From: Julie Jones <j.things@...
Subject: [Stage IV Breast Cancer] Good website for bone questions

http://www.cancer.org/docroot/CRI/content/
CRI_2_4_4X_How_Is_Bone_Metastasis_Treated_66.asp
I just read this and the parts about radiopharmaceuticals (injected
radiation) and so on were very interesting.
Velvet -- it says in this article that "postmenopausal women can be
given aromatose inhibitors, which block the small amount of estrogen
they normally produce." I am still premenopausal, so maybe that's why
the onc didn't recommend this for me? Not sure...
Anyway, you got me into Action Mode :-) so at least I have some new
information to chew on now.
Hugs,
Julie

Hi there,
I realize I don't have a name to address you with! :-) Are you in the
UK, or??
I'm Julie, in Oregon, USA -- just diagnosed in April w/ Stage IV mets
to the bone. I'm 49 and my kids are 10 and 5; husband is 46 and has
been unemployed for the past year, so I am it as far as the
breadwinning goes for right now anyway. I'm self-employed and have
been able to keep working as much as possible, but it isn't enough and
financially we are very precarious. If something happens to me, or
when...I hope my DH is going to be able to support the kiddos. I can't
imagine the stress of going through cancer treatment as a single
parent. You must be just about out of your mind. {{{{{{{hugs}}}}}}}
I am also SO sorry to hear that at your lovely young age you're having
to deal with this!!! Did you have chemo for the last year and then
they felt you were in remission? Do you have some supportive family,
I'm hoping?? Sounds like a good idea to switch oncs to me if this one
isn't offering you anything at all. I don't know anything about
inflammatory Stage III bc -- have barely begun to grock what's going on
with me (just bones, no lungs/brain/liver at this point).
My problem is that it's getting harder and harder to walk -- after 6
weeks or so of Tamoxifen I was hoping my bones would feel better, but I
don't know if they really do. :Q I had a Zometa infusion Friday that I
was hoping would help w/ the pain levels, and it really hasn't.
Morphine is fine but I am getting so stiff -- and it makes me worry
that things are progressing in the direction I don't want them to.
I'll get a repeat PET scan in about 3 weeks and we'll see then -- I
could always decide on more aggressive chemo (I'm estrogen and
progesterone receptor positive, herc-2 negative, if I'm saying that
right). My onc has a couple of clinical trials he feels would be good
ones for me to get into, with good drugs, but as I understand it, you
have maybe 2 or 3 shots at something like that, and then the drug
companies don't want you anymore (though I've heard that may start to
change). Anyway, don't mean to digress there.
What kind of symptoms are you having, lung-wise, if any? (I also
noticed a new lymph node or something about a week ago that has
migrated from my armpit/biopsy site up the inner tricep in sort of a
ropy way -- the onc thought it was probably a lymph node or some
spreading bit of cancer (joy), and of course I asked if we needed to go
in and get it out of there, and he said no, we treat it systemically.
That seems to be his approach -- although I've heard that there are
more aggressive schools of thought out there. I should get on the
stick and work on getting a 2nd opinion, as I have a good friend who
has offered to pay for one and I am going to take her up on it. I
don't want unnecessary surgery to get rid of a breast or breasts that
can't hurt me anymore, or to put my body through something there's no
point in doing, but even though "the horse is out of the barn", as my
onc says, I guess I need some reassurance that this breast tumor (tiny
as it is compared to the amount of metastases all over my skeleton)
isn't going to be sending out more reinforcements!
Anyway -- I'm brand new here and have been encouraged to feel free to
let it rip as far as questions and need for support. Hopefully you can
do the same and if I can help you in any way, let me know!!
Fighters, we definitely have to be. Hang in there sweetie.
Julie

Hi both Julie and Mel? I am calling you Mel because there is no name written but
Mel appeared in you email address. please let us know your name, I for one like
to address you personally, rather than a no name ( I see Julie asked too.)
Julie the difficulty walking needs to be reported in case there is any nerve
involvement which can be zapped with radiotherapy to knock it back.
Bear in mind it is early days for the Tamoxifen to be kicking in, likewise very
early days for the zometa to be kicking in too. I wonder if an aromatase
inhibitor would suit you better, arimidex, femara or aromasin or even the
injectable faslodex, maybe ask about these. Will be interesting to get the
results of your scan in 3 weeks but if your onc is taking tumour markers (TMs)
then this should give an indication of whether the drugs are working.
There is such a thing as tumour flare, it can happen when you take new drugs and
rather than your bony sites progressing they may be irritated, this is what
tumour flare is, a bit of inflammation and worsening of symptoms but short lived
~ for a few weeks only, again TMs might indicate this.
Julie there are assisted medication programmes where costs are minimal or free
in USA but I don't have the details (I am in UK) perhaps write in to both the BC
2 and stage IV group and ask for the information, a number of people have got
assistance in the past, it may help with your financial situation right now.I
believe a number of drug companies offer such a scheme ~ oh heck I wish I had an
email address i could give you but someone will come back with the details if
you entitle it 'assistance with drug costs' or similar.
Mel ~ if that is you, I am so sorry that you have been diagnosed with stage IV.
I think what Julie says in finding another onc and getting a second opinion is
the right way to go ~ I hope the new hospital offer you better care. I really
feel for you with such young kiddies but I am going to tell you in 2001 my
prognosis was about two years. I wouldn't say I am carrying on as normal here in
2008 tho' I do try, but I do almost as much as i did pre-diagnosis, i do things
more slowly now, calculate what and how I do things.
Knowledge is power so read as much as you can about newer drugs, cancer centres,
maybe post an area you live in ~ not your address, and someone may come back to
you and say they go to so and so place who offer whatever. Recommendations are
always better than leaving it up to you to sort through the good places from the
not so good.
Searching and researching can be scary too but I always turn a problem into a
challenge, this changes the way I behave towards new information, it no longer
comes across as scary but simply as knowledge, facts. I can then get some idea
of what can be done (my oncologist always says there is always something that
can be tried)
I always allow myself to get upset, have a few tears...... or more than a few,
get over the initial shock then somehow I can move on to being practical, get
back to asking questions and getting answers. I know that I know that feeling of
desperation, I too was a single parent with twins even though they were 22 they
were still at home and needing and wanting me.
I think you need support from wherever you can get it, family, friends or even
the hospital may have a support group, or there might be one in your locale.
I know this may sound incredibly hard but allow yourself to get through the
initial shock, don't feel bad about shedding tears but then tell yourself Ok
enough, then get proactive, maybe set yourself tasks each day, maybe start by
looking for support groups, for they are there if and when you need them, you
are not tied to them so if you feel they are an intrusion then you needn't go.
The beauty of this site is that we are here 24/7, you can rant and rave here, no
one minds but the everyday practical help needs to come closer to home. Wish I
lived next door to you!
Please let us know how you get on when you go to the new hospital, I hope they
are a whole lot more optomistic.
Take good care and love from Velvet x (UK)
--- On Mon, 26/5/08, Julie Jones <j.things@...
From: Julie Jones <j.things@...
Subject: [Stage IV Breast Cancer] My post to cancer list, thought you'd be
interested

Welcome to the group Melissa. I am not stage IV but am a moderator of this
group. I have many friends in this group and the big group that are stage IV
and have lived long past their expected time. Everyone is different and
remember that there are new treatments coming out all the time. I will keep
you in my prayers.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://breastcancerpatientssoulmatesforlife.bravehost.com/
Anxiety Depression and Breast Cancer

Hello all. I am a new member to this group. I am a 33 year old single
mom of a 6 & 8 year old, was diagnosed stage III of Inflammatory BC
last year (ER+, HER2 neg) with no history of BC anywhere in my family.
I was supposedly "cured" after a year of fighting and 2 months later
have now been rediagnosed Stage IV Metastatic BC and am scared to
death. My onc told me there wasn't much she could do for me, gave me
approx 2 years of life expectancy and I have now switched hospitals to
one I think will be much more aggressive. My cancer is in various lymph
nodes throughout my body and is beginning to attack my lung (it's in
the plura), bone scan is neg. I begin chemo on Wed. and I am looking
to find someone I can communicate with who has a similar story and has
survived this "survival rate". I am a fighter and normally a very
positive strong woman, but scared to death of my children losing their
mom. Is there anyone that can help me in this desparate situation?

Thanks again, Velvet, for the explanation of TM's and all. Like I said before,
I seem to have an aversion to studying and researching about cancer right now.
I'm into acceptance and not denial but I'm probably not wanting to depress
myself about future details. I was scaring myself when reading about others
reactions to treatments and medicines. I know that when I go through it myself
it's not as horrible as when I read about others going through it. It's like
going to the dentist. I shiver and shudder when I hear about someone else'
dental procedure but when I have to go through it myself I'm just fine.
I haven't had much reaction to taking arimidex. No sweats. I had two or three
hot feelings around my neck but that was all. I feel hungrier, too, than I used
to. And got some constipation at first but that might be okay now.
Constipation scared me. I had a horrible fissure four years ago and don't want
to ever go through that again. I take Citrucel every single morning. When I
felt my bowels being sluggish after I started arimidex I started taking two
tablespoonfuls of mineral oil in with the Citrucel and I added a stool softener
in the evening. I can probably stop doing the stool softener now. If I'd ever
have to get on some pain medicines, I'm not sure what I'd do to not be
constipated. Probably double the stool softeners. Ugh. I'm lucky not to be
having bigtime pain with the cancer. The pain I do have is from the arthritis
in my knees. I take Tylenol stuff for that and hate having to take that every
day now. But...
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Velvet, I didn't mind being included in your note, not at all. It is kind of
scary to read all about your journey in this disease but it is also VERY
informative. Thank you.
I did the dexascan and the doc says I have very strong bones. He'll do another
one in two years. I thought it might be done every year but guess not.
There is one thing I'm wondering about. Can you tell me how your doctor finds
out when the latest pill you are on isn't working anymore? The blood tests,
right? Do you know how the heck that works? Or is there something else. I was
told that a blood test will show if it's growing or not. And if the blood shows
the cancer is growing then an MRI will have to be done to look at closer.
Jo H.
-- War does not determine who is right, war determines who is left.
*********************************
Jo's Journey: http://jomammatee.no-ip.org/
BLTS: http://jomammatee.no-ip.org/blts.html

Hi
I have just returned from holiday in Cyprus and there were absoultely hundreds
of posts to go through on my return, hence I may have included Jo H here and got
the wrong person.
Anyway there were a few questions I can answer.
Just to let you know I am stage IV and diagnosed in 2001 ~ there is another post
of mine somewhere from yestreday.
It all started with pain in the pubic ramus, (pubic bone) and sternum just the
two sites in the bones. I was on aromatase inhibitors for some years as they
controlled the disease. Unfortunately the cancer becomes resistant to these
after a while but i have been through(tamoxifen first) arimidex, femara,
aromasin and the injected faslodex. Some lasted about 20 months some less than a
year before the disease progressed again. I see a research institute in wales is
now working on anti resistance drugs.
I now have sites to the skull, all of the spine, most ribs, sternum, manubrium,
pelvis, pubic rami, femurs, shoulder blades, clavicles, arms, in fact I think my
feet and hands and the lower legs are the only bones not affected. I think there
are about 64 different sites. I worked up until two years ago in a prison here
in UK five days a week and did four evenings teaching in the community but
carrying all my materials in and out of the car beat me in the end ~ folders for
teaching are just so heavy!
Then I was offered retirement and jumped at it. Now i think when did I ever have
time to go to work. I carry on much as usual and do most things but generally
slower and carrying anything heavy is out of the question. I don't move
furniture now either. I have always been active, have a go at anything, built a
house years ago, do most of our DIY, in fact just re-painted 4 rooms even though
my sons have to finish the bits around the light fittings i still have a go and
have a sense of achievement too.
Now i have finished with all the aromatase inhibitors and they no longer work I
have been on chemo for the first time ever last year. My original hospital
'forgot' to give me chemo when I had the primary ~ long story so I will leave
that part out save to say I don't go to that hospital now.
The chemo was tablet form, no hairloss, no sickness and controlled the disease
for about 7-8 months but my femur spontaneously fractured just before Christmas
and i have to have surgery to pin it, hence stopping the capecitabine chemo
tablets and then I progressed a bit more.
I am about to start Vinorelbine, a chemo drug that says hair loss in minimal ~
will get back to you on the effects of that at a later point.
Chemo is my only option now as I have been through all other types of treatment
available.
Radiotherapy for the bones is quite different for mets than for a primary
tumour. I have had some sites zapped with just one shot, biggish shot, some have
been five smaller doses, it all depends on where the site is and what might be
included in the beam pathway. But for pain relief it certainly helps to reduce
and gain control again. It also kills off cancer cells though they do come back
after some time.
Julie I think you asked about what happens to the bone ~ the cancer penetrates
the cells in the spongy looking network of bone inside. The cancer replaces the
minerals (calcium) and as it grows weakens the bone ~ that is how my femur came
to break on its own, the site quite large and on a weight bearing bone too where
a lot of stress takes place. I have had so many ribs fractured for the same
reasons and probably others I haven't noticed.
There are drugs called bisphosphonates that strengthen the bones by preventing
osteoclasts from breaking down. These are the parts/cells of the bone that say
enough! we are strong enough don't need any more or can remove excess mineral
and are part of the natural turnover of bony structures. Osteoblasts build bone
so they carry on and what with the clasts now prevented from destruction then
strength in the bone is maintained. These drugs are also used for osteporosis.
There is a risk with Bisphosphonates(BIS) that they have been linked to the
problem of dead jaw ~ osteonecrosis of the jawbone (ONJ). I have the condition
and though it is supposed to be a rare side effect I have done some research
with three oral max faxes and we found it was misdiagnosed, not diagnosed at
all, is under reported and so the true extent of the condition is not really
known. Once the jaw is dead there is no treatment and I have lost five teeth,
had infections and the pain
from that is the worst ever. Anyhow it seems the ONJ is linked the the strength
and duration of BIS, Zometa is the the most potent. I had Zometa and pamidronate
for over five years until ONJ developed then had to come off it tho' truth to
tell no one knows if coming off it makes any difference at all. My theory is if
the bone is dead then can you kill it anymore by having the drug? Consequently
becasue I wasn't on it my bones became weaker and the femur fractured on its
own. I am now back on pamidronate alternate months and just seeing how things
go. There are some that say four times a year is better than the 4 weekly
recommended dosage. It certainly helped with strengthening my bones originally
and reducing pain but you need to be aware of the possible side effects if ever
you are offered the drug. I need to be on it really because I am worried that
with so much disease in my spine, fractures can take place or bones crumble then
I get nerve issues.
BIS do not profess to prevent cancer in the bones, this has not been proved tho'
a number of oncs seem to tell patients it does. I understand that it makes the
bone so hard that the cancer cells have difficulty penetrating the bone cells,
tho' this hasn't been proved either. Tamoxifen is supposed to improve bone
mineral density but the aromatase inhibitors (AIs)reduce it, I am told about 5%
per year but i can't find those figures on a search now but if you go on to AIs
you need to be aware of this also. A bone density scan should be done for you ~
its called a dexa scan and will give you a base line even tho' you may not neeed
treatment to enhance you bone mineral. The NOF (national osteporosis foundation)
have lots of info on bone health including a section on cancer in the bones.
Believe me I have never had a broken bone before other than the cancer so when
my femur fractured it was the surgery to go through, the inconvenience of being
on a walking
frame after wards, not being able to drive for several weeks, not being able to
get my panties on myself!!! get things out of the oven, get upstairs ~ such an
inconvenience but it got me thinking that if that huge bone in the leg can break
on its own what about the smaller bones especially those in my spine. Christmas
was postponed for a few weeks tho' my family came here on the morning then took
me up for a meal but I wasn't really up to much as surgery only 6 days before.
I have just re-read this and a, I feel like I have lectured you a bit, that's
the teacher in me but b, feel I may have alarmed you to a degree. I hope i
haven't.
It is always better to be informed than not, knowledge is power but remember
everyone reacts differently to drugs, I read and research everything now, having
been given tamoxifen with the primary believinng it was chemo and not saying
anything. I had too much trust in an inept oncologist, those two components were
my undoing, (and his and the hospitals to a degree, when he/they received my
complaints)
I am aware that I ramble so sorry about that ~ hope you haven't fallen asleep!!!
Take good care and love from Velvet x (UK)

Hi Julie
I am in UK so things might be different with the driving licence authority in
USA or other countries. Julie I am not sure where you live.
The first thing I did was to notify the DVLA (UK diving licence authority)that
I was taking morphine as it is stipulates on the licence that any major changes
in health must be reported. I wrote (or emailed) and they replied thank you etc.
and said I could continue driving with my current licence i.e no change. Maybe
check out the web site of the driving licnce authority and just see what you
should report or be aware of.
From a personal rather than a legal aspect I asked my onc and he said after a
few days you become quite tolerant to opiates, (that is why addicts find it so
easy to get on to) and when you feel awake and responsive there is no reason why
I should stop driving.
Initially you feel very drowsy when taking morphine, maybe sicky too and this
can be dependent on which type you take. There is what I call instants, tablets
that act as soon as you take them, usually you take them four hourly, also
liquid which is slightly faster acting. Then there are slow release morphine
tablets that you take 12 hourly or some that work for 24 hours. I waited before
driving till I was converted over to the slow release. I worked in a prison at a
time and had to speak to security about bringing in opiates (as indeed I would
do for any medicine in case it got stolen then used by the inmate/thief or used
as currency)
I remember the first few days of starting morphine, i was admitted for pain
control for a week or so. They tried just about every drug in the book to find
out which one controlled my pain.Some people simply do not respond to opiates
and I am now in a study that is helping find out why some respond and others
don't. Gabapentin made me shake, Oxycodone made me have hallucinations ( I was
walking along the street chatting girlie talk with Bette Midler in this
particular one, and had to ring home to ask if I knew her as the hallucination
was so so real~ I didn't know her at all! Another made me completely paranoid
doubting the food, drink etc, (convinced they were poisoned)
I digress......sorry.
After a day or so I was given morphine liquid and whilst it controlled the pain
I slept about 20 hours on and off, the next day I was given slightly less and in
tablet form, pain was controlled and I slept a bit less, by the end of the 5
days I was being converted to the slow release type tablets, sleeping less and
pain controlled except as I slept less and became more active the pain levels
were not so well controlled but the doctor upped the dose slightly. At that time
I was on 240mg of morphine per 24 hours. (it is down to 50 per 24 now) I think
by the middle of the following week I was quite tolerant to the drug and slept
well, deeply and for a full 9 hours at night but wasn't sleeping during the
daytime. Initially I was quite sicky with morphine but cyclizine soon put a stop
to that and haven't taken it since for morphine related nausea.
I have a feeling it was towards the ten day mark that I felt OK to drive, my son
took me down late one night to a deserted car park and I then drove around,
parked, reversed, did all the road type manoevers and was fine.
The only problem I have now is I have instants for breakthrough pain so can top
up my slow release dose whenever I need to, now if I am away and some distance
from home I have to calculate taking the pain relief so I get home before I
begin to get drowsy, though I found once you have been on morphine the
drowsiness is minor when topping up, much, much less than when I first took it.
I notice if I have pain and go to bed and say take 20 mg (its Sevredol here in
UK ) it could be I am asleep withing 30-40 minutes, if i haven't topped up and
just taken my night time slow release tablet then i fall asleep anything from
1-2 hours later, depends on how good my book is, how good the TV is, I can fight
the drowsiness to a degree.
As everyone responds differently to drugs I think you might have to tune in to
how you feel, maybe note the time when you take and how much you take and keep
records for say a fortnight, that I think would be a good indication to how you
are going to respond. Just as a reminder if you don't mind me saying, driving is
one thing but also if you cycle or use any kind of machinery, even the oven
could present problems as your response time can be impaired, even crossing the
road might be a problem it very much depends on how quickly you tolerate the
drug, how you respond to its effects.
Usually with cancer patients the oncs leave the dosing to the patients once the
drug is established, you make the decisions on whether you are getting enough
pain relief. Although I was on 240mg initially once I was on other drugs
(Aromatase inhibitors) for the cancer and they kicked in some 4-5 weeks later
the pain levels reduced and coming down from high doses is as critical as
beginning the drug. Don't just stop taking or reduce the dose level too quickly
as you could end up going 'cold turkey' and suffer withdrawal effects. Sneezing
aches in the muscles, runny eyes and nose and a little change in the ratty
department. I know when I dropped too much I was so ratty, knew I was being
unreasonable but unable to prevent it. From 240mg I dropped 20 mg every five
days but the lower I got the less in drop I needed, when I got down to about
70mg I dropped in 5 mg increments.
You can tell if you are over opiated as you become drowsy, a level of drowsiness
that stays all day.
Morphine can potentiate other pain relief tablets so often paracetomol is taken
as a top up because its effects are that bit stronger than without morphine.
Just one more thing, constipation....... oh constipation... all opiates do it.
Find a good stool softener. I use Lactulose. There are various types from those
that empty the gut by increasing peristalsis, the gut motilty that moves
contents on, to those that just prevent water/fluid from being re-absorbed. Also
anti nauses tablets can constipate as thay can often decrease gut motility
causing the contents to stay put. That is how a number of anti nausea tablets
work by just stopping the muscle action so food cannot be ejected ~ others empty
the stomach downwards and some work on the brain sensors... I digress again....
I think it is about trial and error at first and I guess allow 7-10 days to find
your thresholds for everything you are taking. A chat with the pharmacist will
tell you which affects which if you take a list of all the medication you use.
Sorry about the ramble but thought i should include all aspects, hope this
helps.
Take good care and love from Velvet x (UK)
--- On Thu, 22/5/08, Julie Jones <j.things@...
From: Julie Jones <j.things@...
Subject: [Stage IV Breast Cancer] Driving and narcotics question

Hi everyone,
I wonder what's considered the reasonable cutoff for how much one can
take, narcotics-wise, and still responsibly drive?
I used to take Vicodin for back pain before my cancer dx, and even
then, some people said to me that I shouldn't be driving. (It didn't
seem to have much effect on me other than pain relief.) But now, with
morphine, my oncologist says there is no way I should be driving with
the amount of narcotics I'm on. I wonder: Will I be able to get to a
point where I won't need as much, and how much is OK for driving? I
see him tomorrow and will ask, but just wondered if others had
considered this or were dealing with it. I obviously don't want to
take any chances with my own passengers or anyone else out there! It
is really hard, though, not being able to drive, I must admit.
Many thanks, in advance. :-)
Julie

Well, when I did work, I worked for five years at The Ohio State University at
a word processor specialist. I did some secretarial work, too. I was a
stay-at-home mom till I got divorced in 1990. I picked up a little freelance
work from the university. I did a couple of thesis's and a dissertation. I
worked parttime at a book place and retyped all the editing done on the
manuscripts before OSU. I love to type. Still do. Now all my typing is for
e-mail and HTML.
So, yes, I'm in the U.S. My husband is Canadian, though. We are currently
living close to Cincinnati, Ohio. I'm a native Ohioan and grew up for 45 years
in Columbus. I take it you are in the U.S., too.
How was my mastectomy? It was fine, actually. I really didn't have much pain
from it, unbelievably. I didn't take pain meds in the hospital except Toruadal
(spelling?) which is a heavy duty type of ibuprofen they said. And at home I
took a pain pill to help me get to sleep one night, the day before I got the two
drains out, but only because the drains were irritating me so damn much. It was
the drains that got to me. Ugh. A week later I got a bit of infection and the
skin around the incision was red and felt a bit hot. So, the doctor started me
on a round of antibiotics. It persisted and I went through two more rounds of
antibiotics. He thinks that actually it may have been cellulitis. I think the
stitiches inside reacted badly for awhile and then maybe it got to be cellulitis
the second time. But it all seems to finally be dying down. As for pain there,
except for the drains for five days, I can't say I had pain. Besides the slight
infection, it healed very well.
I don't know much about how the cancer acts on the bones either. Usually I
dive right in and find out all I can about a new disease that I've come up with
but this time I rather avoided doing that. Maybe because it's so much more
depressing but mostly because the little bit I did read scared me more than what
I was actually going through. The treatment for this disease, the usual
treatment of chemo and radiation, was too overwhelming to read about and made me
worry more than I needed to. But then I ended up not having to do chemo and
rads so, see, I avoided freaking out over nothing. Not to say that chemo and
rads might not be down the road for me but for now I didn't overstress about it.
A good book that was recommended was "Crazy Sexy Cancer Tips" by Kris Carr. I
loved this book I loved her attitude and approach. She went totally vegan and
may be a bit fanatic about the eating regimen but if it's working for her and
her rare form of cancer hasn't grown in five years then more power to her. I
can't be that fanatic. But what she says about eating might ring a bell for
you. Take what you like and leave the rest, is what I say.
Oh, and you probably can get a copy of your PET scan. I have a copy of my CT
scan and my MRI. I couldn't make sense of where the cancer was on the CT and I
haven't looked again at the MRI once I found out where the cancer is.
Jo H.
-- War does not determine who is right, war determ