Please Pray

2008-06-30 21:09:18

Please continue to pray for Carrie!!!
(UPDATE BELOW)
Hello Everyone!
I am getting ready to go for treatment today. I am so happy to read
all of the caring messages in the guestbook. I care so much about
everyone of you. I am feeling better. I am learning how to deal with
some of the anxiety that was bothering me so much. My spirits are
good and my attitude positive. I can't explain it, but I have a sense
of peace and good feelings about how things are progressing. I wish I
could thank each one of you in person for all of your support.
All my love,
Carrie
Please pray for My cousin Carrie and visit this site and sign my
cousin Carrie's guestbook
Please send her a Get Well Card
Carrie Debartolo c/o
Kathy Sickles
8515 Grace
Street
Highland,Indiana 46322
http://www.caringbridge.org/visit/carriedebartolo

Re: Advanced breast cancer - sister

2008-06-30 18:13:00

Hi Benny,
Sorry to hear about your sister. I was originally diagnosed in July
2006, then in August 2007 I found out that the cancer had returned and
spread to my bones and liver.
So far, I'm still doing really good. I still work full time and enjoy
life. I have had to slow down somewhat, but overall, I'm going strong
and plan to be around for a long time!!
I'm currently taking Navelbine chemo and Zometa for the bones.
What treatment is your sister getting?
Please keep us updated on her progress!
Hugs and Blessings,
Gina

Re: [Stage IV Breast Cancer] Advanced breast cancer - sister

2008-06-30 13:49:11

Benny I don't have stage IV but there are many women here who do. A lot of
the ladies live long productive lives. You sister will be in my prayers.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://www.geocities.com/chucky5741/breastcancerpatients.html
Anxiety Depression and Breast Cancer

Advanced breast cancer - sister

2008-06-30 08:08:26

Hi,
I am new here. My sister was diagnosed with breast cancer in 2005. she
had chemotherapy and radiation. We found recently that it has spread to
the bones. There is a slight indication that it is in the liver and
lungs. Anyone out there who can give me some hope?
Regards,
Benny

Re: [Stage IV Breast Cancer] Happy & Healthy New Year To Al

2008-06-29 15:34:27

Is it maybe Aquaphor (sp) I believe its by prescription only. I know some of
them are. Ask your radiation center I am sure they can give you something.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://www.geocities.com/chucky5741/breastcancerpatients.html
Anxiety Depression and Breast Cancer

Happy & Healthy New Year To All

2008-06-29 13:35:25

Wishing you all a Very Happy and HEALTHY New Year!
Velvet I hope you continue to improve, as well as everyone, here on
this site!
I have been searching the older posts back to 2004, looking for a
cream that many have spoken about to be used prior to radiation to
help minimize the drying/burning pain. I thought it started with
an 'E' or 'A', but after hours of searching, I just can not seem to
locate it.
Can anyone help me in this regard?
Thanks so much,
Be well,
Deirdre
p.s. Has anyone heard how Lorraine is doing? She hasn't posted in
awhile.
Best.

Re: [Stage IV Breast Cancer] New Year messages

2008-06-29 08:00:19

Thanks Velvet and I wish the same for you.
Hugs
Marianne

New Year messages

2008-06-29 02:08:44

Hello everyone
A New Year begins shortly and i would like to wish you all pain free, worry
free days, I wish you peace and joy, good health and prosperity.
I wish the world to be free of oppression, that all those starving are fed,
that all wars become peacetime.
Along with my wishes I think this is an ideal time to say how wonderful this
group is, how dear and sweet the members are, how caring and compassionate you
are, how informative, how sensible and how this group has given me something
extra as well as something special in my life.
My dear sweet friends be safe wherever you are, be well and be happy, Happy
New Year to you all. Love from Velvet xxx

Re: Breast Cancer Chemo: Quality of Life

2008-06-28 21:18:56

Thank you everyone who has offered to help with this. Is there anyone
else who is currently undergoing chemo or starting soon who would be
willing to spare some time? It is extremely difficult to find people
to complete questionnaires, which is understandable considering the
circumstances. However, you really are the best people to help
increase public understanding of this condition and the support that
is needed, so any time you can offer would be greatly appreciated.
Please contact me if you are interested.
Kind Regards,
Nicola (n.davies.s06@...)

velvet's progress

2008-06-28 13:31:50

Hi
Just thought i would let you all know how things are progressing.
Well it's now 4 days since the op and the pain levels are variable.
Last Friday when the femur actually fractured the pain came on quite rapidly,
volumes of pain, the kind that made me cry, whince and swear profusely but I
kept taking the breakthrough morphine doses and eventually got the pain under
control. My local hospital x-rayed me and down came the ortho bodies to discuss
my immediate admission for surgery later that night but and a big but.... that
hospital had an outbreak of gastroenteritis and were closing wards to new
admissions, restricted visiting on all wards and even the local paper had a
story about staff and many patients being infected, I think it was called
Norusvirus so when I mentioned that I had only just completed my chemo course 4
days ago and that there was a likelihood my bloods would be low I said I
couldn't possibly come in to stay until I had some oncological input on this.
The Registrar from the ortho unit told me I didn't have to have my femur pinned
at all, that it would mend on it's own in 6 weeks anyway so
I was surprised as one minute I needed to be admitted for immediate surgery,
then the next minute I am told it doesn't have to be done at all. Are you
confused? I certainly was!
I went home, had to get out of the place as everyone in the waiting room
coughing and spluttering, and why don't the younger generation put their
hand/tissue over their mouth when coughing, is it me but as a child if I coughed
and didn't put my hand over my mouth I would be given a hiding ~ well, is it
me..... getting grouchy in my old age or is it what any decent people would do?(
think I am getting grouchy~ truth to tell!)
Saturday morning that hospital rang to say they could operate later that day,
was I coming in or not? I said that I told you the night before that I will be
waiting till Monday to get hold of my onc, would not proceed until I had spoken
with him or a member of his team that I was concerned about being admitted into
a hospital with a known outbreak of gastroenteritis, my onc was on his way back
from San Antonio from a breast cancer conference, that I was being sensible,
resting, had family support etc. then he said well, you don't actually need it
pinning at all, it will knit together on it's own in about 6 weeks ~ are you
confused again?
He went on about all the pain I must be in etc. and I said I have no pain at
all, it's completey resolved by taking morphine regularly.
By Monday and after the local Sunday paper with headlines 'hospital closed due
to gastroenteritis outbreak' I was speaking to my team at my cancer unit who
rang back and said I must have the femur pinned, it won't mend on it's own
because of the cancer, can they do anything to help me get taken to another
hospital (they no longer do ortho work there ~ have to arrange it at another
London hospital.) I asked what to do to get taken at another and the one I had
in mind is Milton Keynes some 20 miles away but better than 2-4 hours in
pre-Christmas traffic getting into London some 70-80 miles away. All my local
had to do was fax a copy of the report from the emergency department (from the
Friday evening)to whichever hospital I chose. I rang the fracture consultants
secretary to ask her to do this having spoken to MK , got named person, fax
number etc. I rang at about 10 00, by 11 00 Mk had received nothing so I rang
local again, yes she was doing it but it may be Wednesday
before she got round to it, no this is urgent, now please ~ yes she would.
After 11 phone calls and by 2 o'clock still not done. By this time I had
clearly explained what was required 7 times, not a very difficult task.
I rang the receptionist at accident and emergency and asked if my notes could
be faxed over to MK hospital, this lady said she would do it this very minute
and ring me back to let me know the fax had gone through, which she did,
followed by a call from MK to say come in we have everything. When I got home on
Friday the consultants secretary had left two messages, one on the Wednesday a
day after the op and one again on Friday 3 days after the op, asking 'what was
it I wanted?'
How can a receptionist be more effective at this ( and getting payed a whole
lot less) than a hospital's doctor's secretary who is doing this kind of thing
on a daily basis is quite beyond me. It was so simple my name is... my address
is.... my hospital number is.... the A and E report copy from 17 Dec to be sent
to so and so number FAO named person. I guess it took me longer to type that
than doing the actual task.
Likewise a message from the ortho body I had seen that first night saying we
could operate etc. but it will mend if you just leave it. Don't worry about the
hospital bug and the hospital closure we can still do you. Obviously the
consultants secretary had not passed on a message to him telling him I was
having the surgery done at MK hospital. Inept, incompetent and utterley useless
come to mind. I guess he will be on the phone tomorrow, I bet you would like to
be a fly on the wall listening to my response!!!! There will be too much bad
language to reproduce it here!!!
And so to the op Tuesday morning, I saw a lovely lady anaesthetist, raised my
concerns about many cancer sites in long bones ribs, spine, skull, pelvis, had
taken a photocpoy of a scan, said I was concerned about being moved under
anaesthesia and the possibility of other fractures, she wrote her own notes
checked me over and down I went to theatre. When I got there she had the whole
theatre team in the anaesthesia room and was discussing moving techniques with
them and about my concerns re further fractures if moved badly, so I felt very
reassured. I also saw in my notes some of the cancer hospital's headed paper so
I know MK had been in touch. She had all my blood tests for the last year aswell
as other paperwork.
But strangely the whole episode was like re-living the BC scenario again, I
felt fine going in but coming out after the treatment you feel like crap. You
know when you are told you have BC and in the main we aren't alerted by any ill
effects, no pain, just a lump we have discovered and feel really quite well
physically (mentally is another issue) but having cancer is Ok until the
treatment starts (Not Ok but you know what I mean)......... then all Hell breaks
loose, painful this, painful that and painful everything. And so I woke after
the op in tremendous pain, not having got that under control and physio team are
there less than 16 hours later to get you up and walking, and not one or two
steps but up there, along there and back again. Completely daunted by this I
just went with it, went through the pain barriers, whinced a lot, cried, had a
good swear to myself, estimated the time in seconds back to my bed, counted
every one and wasn't far wrong. I understand that
there are dangers with clots and the need to get the circulation going but it
didn't help one iota. Then I got back in bed and the physio team suggesting
exercises I can do in bed. Yes I listened and did them, but it is about getting
in and out of bed that is so difficult, getting up and down from a chair. Then
my son was talking today about visiting me on the Wednesday evening and how I
kept rolling my eyes back and how he had dared to ask the ward Sister if it was
some prelude to me passing over to the other side....
Nightmare it was and nightmare at times it still is. I have never broken a
bone before or one that I knew about but when I was first diagnosed with mets
and had a full bone scan I was asked when I had broken my leg. I said I never
have. No you're wrong I was told you definitely have many years ago. Well if i
did I was never told I had, never was in plaster but was told children can break
bones and they heal but the break leaves scarring on the bone, so I guess that
must have happened in my childhood. And looking at old photos I certainly have
normal looking legs up till about the age of five and then a sticky-out leg
after that and I can remember limping for perhaps as long as two or more years,
even got bullied at school because I couldn't run like the others. But if I did
break a bone and it seems like that is so then no wonder i have no recall off
pain because it never got treated. Sometimes the cure is worse than the disease
well, initally that is.
So I am bored to tears almost, wanting to do things but every step has to
calculated. I am trying to walk so many steps each hour and continue doing my
exercises, the stitches look clean and the skin around the three incisions is
pale and normal and not overly sore but my knee and hip are something else. My
sons got my bed downstairs the dining table is dismantled and I am just so
grateful I didn't suggest doing the Christmas meal and family get together, plus
we usually have a week in the sun this time of year, I pay for it all as my main
Christmas present to my sons and d-i-law but fortune was that we went beginning
of October this year, otherwise my femur would have fractured some great many
miles away somewhere in Europe. As I am downstairs my dear little cat Babe has
been close, she senses something is wrong, where she would scratch at the door
glass to come in she sits and meows and waits, she has learned I don't get to
the door in two seconds. She has been allowed
on my bed, snuggled up on the end and pinned my feet down with her bodyweight
for a while and something she never has done before she comes into the kitchen
when I am in there and just sits on the rug. She doesn't normally like it in the
kitchen because the dishwasher scared her once, timid little thing she is, but
it's almost like she is keeping her eye on me. (Babe is a rescue cat, so her
past is unknown but I guess it wasn't too kindly)
Anyhow i shall continue with my whincing, few tears aswell, no doubt, as I do
my exercises
regulary, surely some one can tell me if you have had this type of op, how
long it takes before the excessive pain reduces, I know it's early days and can
hear myself saying it to others right now but has anyone any idea of how long it
will be before things get easier, a week, a month, two or three?
Love to you all, Velvet xxx (UK)

port inf, divertic + velvet update

2008-06-28 09:22:17

Hello.
Sorry I can't reply individaully but browsed the posts and saw a few which I
can reply to.
Port infection
I had two ports infected out of the four I have had, still have one.
I tried the antibiotics with each infection but in the end the port had to be
removed and had new. I know exactly how they got infected. That was due to my
local hospital thinking they knew what they were doing but actually did not.
Supposed to use aseptic techniques but didn't. Put the same gripper needle back
in three times ~ never allow that to happen, if they don't get access first try
then new needle always ~ end of.
It is my belief the infections don't just get in the port, but they are
introduced. I also believe that unless you catch the infection very early then
antibiotics won't do the trick. I had a temp of over 44 and still my local
hospital were saying try these tablets for a few days, when I rang my cancer
hospital they said get yourself down here straight away. Later that day I went
to theatre. I think for your own safety and well being if you are certain there
is an infection ask for its removal and re-site the new one at the same time on
the other side of the chest wall. I hope this is of some help to you.
Janine i think it was you who mentioned the diverticulitis.
One thing I have always insisted is that before any surgery, as soon as my
drinking is stopped (NIL by Mouth) to have a drip set up. This ensures the bowel
remains hydrated as fluid is still going in. Each and every op I underwent, I
had a diverticulitis flare after each until I asked my anaesthetist and surgeon
about having a drip and I have had no flares since that time.
Regularly I take lactulose, a stool softener, eat only brown granary bread,
have no white flour based foods at all and take acidophillus tablets daily which
I keep in the fridge. i only drink four glasses of water a day,(have other
drinks) but pure water, just the four, I know it should be more but water ~ yuk.
Occasionally I have some dried figs but I don't know if you can get those in USA
I too was once in line for surgery from a flare but we overcame it with high
doses of metronidazole, water, stool softener and the pills above. It came
really close for surgery to remove part of my colon, but is still with me. Hope
this helps.
My latest is that the fracture has been repaired in my femur with three rods.
I was operated on Tuesday and came home Friday ~ so pleased to be home, my own
bed, no noise throughout the night, tablets on time, do as I please when I
please. I have some pain especailly getting up and getting down but once I am up
and get into stride with my frame I am oK. It's going to take time to heal so
time i will give it. I have to say my head is not as foggy as it was yesterday
but then I have had disturbed sleep for over a week now so not surprisingly i
slept for 10 hours last night and feel so much better for it. The cancer site in
my femur fractured, I didn't fall, it just went on its' own.
It now time for mid morning break (no, wrong word) I mean my mid morning 'rest
period' so I off to get in bed for an hour. I'll be back with you all shortly
but it's actually is getting painful to sit in one place for too long. Thanks
for all the kind and thoughful messages by the way, this is such a special place
Marianne,(thank you for just being you) I feel so endeared to you all.
I will be reviewing the bisphosphonates next time I see the onc, though this
stuff was supposed to be in the body for over 10 years!!! will get back to you
on this one.
Love to you all Velvet xxx (UK)

Re: [Stage IV Breast Cancer] Navelbine

2008-06-28 05:23:09

Gina I am so sorry to hear this. You remain in my prayers.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://www.geocities.com/chucky5741/breastcancerpatients.html
Anxiety Depression and Breast Cancer

Breast Cancer Chemo: Quality of Life

2008-06-28 00:53:47

Dear Group,
I hope this post finds you all well. Most of you will probably
remember me I have been here a couple times asking for assistance
with some work I am doing on quality of life in people with cancer.
Your help has been greatly appreciated and I would like to give you a
brief update on how the work is going and the findings so far.
I looked at quality of life in terms of physical, social, emotional,
and functional well-being. The main issues people with breast cancer
are confronted with appear to be emotional as opposed to physical,
social or functional. Inevitably, physical, social and functional
well-being is affected by cancer and its treatment, but emotional
well-being is the area which is affected the most in those people who
completed questionnaires for me. More specifically, 69% of the people
in my study feel sad, 73% feel nervous, 66% worry about the future,
80% worry that their condition will get worse, and 84% worry that
other member's of their family will one day develop breast cancer.
Since 83% of the people in this study also worry about the impact that
stress will have on their illness, then it is especially important to
ease some of this emotional burden so that they can place more energy
into their health, coping, and well-being.
Another finding has been that levels of satisfaction with information
received about cancer and any subsequent treatment can actually
predict quality of life in people with breast cancer. So, those who
are more satisfied with the information they have received are also
more likely to have a better quality of life than those who are less
satisfied with the information. This is likely to be related to the
emotional impact of cancer and the need for information that will
facilitate a better understanding of the condition and possibly ease
anxieties.
I started my work with a clear focus of looking at overall quality of
life, but with the help of people like yourself I am now interested in
focusing more on the emotional aspects of quality of life in the hope
that we might be able to develop ways to improve emotional well-being
throughout the cancer experience.
With this in mind, my next step is to examine emotional well-being in
people who are undergoing chemotherapy at two points in time: during
their treatment and then two months after the treatment is finished. I
think this will give me a good understanding of how emotional
well-being changes throughout the diagnosis and treatment process.
This will hopefully also enable me to identify the prime time for
extra emotional support. Is there anyone here who is currently
undergoing chemotherapy who would be interested in taking part?
To help you make an informed decision, I will briefly explain what
your involvement would entail:
Answering three questionnaires during your chemotherapy
Answering three questionnaires approximately two months after your
chemotherapy has finished
The three questionnaires to be completed are:
A questionnaire measuring the way you think about your health
A questionnaire measuring your quality of life
A questionnaire asking you about your emotional well-being
The process can be directed by yourself and to your convenience. For
example, I can email questionnaires or send them to you via post. I
will, of course, supply a stamped addressed envelope for the returning
of the questionnaires.
I would like to highlight that any findings will not be identifiable
to you as I will be using pseudonyms in any write-ups that I produce.
Furthermore, I will be more than happy to send results and
publications to those who take part, if they so wish.
If you have any questions at all, please let me know; my email can be
found at the bottom of this letter. It would be lovely to hear from
you and to share in your stories. This is an immensely important area
of work and you are the best people to raise awareness on how we can
improve the care provided to those experiencing cancer.
Thank you for your time.
Best Wishes,
Nicola (n.davies.s06@...)

Re: velvet update Molly, shelley +++

2008-06-27 12:05:05

Velvet,
My prayers and thoughts are with you.
R

velvet update Molly, shelley +++

2008-06-27 02:25:06

hi all
I am replying to several here ~you will understand why below......
Shelley are you sure the sores are from chemo? only years ago my aunt had
internal shingles ~ just a thought.
Molly I don't think your implant will explode but there is always the
posibility that it will split and leak, you volume will just reduce gradually in
that case. I have had 5 implants due to punctures, caused by doctors none just
happened but split they did and replacement was needed. I am sure yours will be
fine.
I am going to be off air now for a bit becuase after a day yesterday in ever
increasing pain and a night at the A & E dept after exams, Xrays etc I have a
spontaneous break in my femur which needs surgery urgently to place a pin.The
fracture is right through a cancer site.
I doubt I will be on here for a bit so I am going to wish you all a wonderful
Christmas, a splendid New Year, I wish you health and happiness, I wish you
safe.
Thinking about all the troops abroad and their families, I wish you peace.
My wish for 2008 is to stop world oppression, free the people, feed the poeple
and love the people.
My very best to you, all my love from Velvet x (UK)

some new studies on osteoporosis

2008-06-27 02:04:47

hi
I was looking at the 'bbc news UK' site and found under 'health' some studies
that say coeliac sufferers are more likely to get osteoporosis, mixed reviews
that anti-depressants like seroxat and prozac can cause bone loss too. It might
be worth a look at the latest info.
Also Novartis has developed a once yearly bisphosphonate for Osteoprosis,
called Aclasta, an IV 15 minute drip which costs £300 ($600) plus admininstering
costs in USA (plus profit margin)
LOL Velvet (UK)

Palliative Radiation, to Velvet from Loraine

2008-06-26 18:26:19

Hi L
I am not sure what radioactive injections yu are having, is it Strontium or
cessium usually used for metastatic prostate cancer? If so I have asked about
them but am told they don't do them for breast mets in UK.
I only seem to have immense pain when there have been new sites developed. The
established ones seem to have settled for years although I can provoke a level
of pain if i overdo things but not the same pain as the new ones.
Over 8 years I have progressed, it began with two sites then after the AI
stopped working I developed more to about 3 or 4 new places then changed AI,
after that more progression in new places and the same pattern for each time I
progressed, changing AI until there are no more for me to use hence now the
Capecitabine, although my onc tells me i can go back to tamoxifen for a short
rest period, something to keep me ticking over whilst I get rid of the build up
of toxins from the chemo. Some of the original sites have got bigger some have
stayed the same size. There are about 54 now altogether. MY sites are in skull,
several, all of the spine 18 places in different ribs, sternum nd manubrium,
both scapulae, clavicles, pelvis both sides, pubic ramii, trochanters, femurs,
one arm, (possibly in the other too), in fact only my lower legs hands and feet
are free of cancer.
The spine ones are the most dangerous as I had to have pal rads to the spine
after the disease progressed to the meninges (the cover around the spinal cord)
as I was getting pins and needles shoot down my legs. Effectively I have a soft
tissue site there, whether it has gone now I don't know but it hasn't produced
anymore symptoms. You need to be extremely vigilant with spine mets as the mets
can progress to the spinal cord meninges and then you get peculiar sensations
according to which area of nerv it is affecting. Anything weird and new
report.That dose of pal rads seemed to stop that in about 10-14 days but
continued to improve over about 10 weeks.
Morphine did make me sick at first but I was given cyclizine and after about
6-7 days was never sick again. Pethidine can also be used for painful mets but
never with morphine and oxicondine is an opiate so not surpised to hear it made
you sick if morphine did. i don't know Tylenol, Vicodin or Norco as they are not
UK drugs, but nortryptyline (genearic name) (the antidperessant) can be good for
mets pain, though it will make you drowsy and constipated - very...
I had three new sites last time one in my elbow which gave me serious grief
as it pressed on the 'funny bone' nerve, one in my humerous and one in my radius
so my whole arm was given pal rads and I didn't suffer any serious consequences
but also I have had all of my spine iradiated over 5 weeks so it is not
impossible to give multiple areas of treatment in a short space of time. Except
anything covering the main upper torso internal organs, heart area especially.
That seems to be a different ball game.
I am surprised you are not getting treatment sooner, it seems a long time even
now to be telling you to wait till next week. My hospital had me there the
following day and pal rads began the next day. But they may give you one higher
dose to some sites so don't despair too much at that traffic queue ( and my
hospital is 77 miles away)
I really think your pain team should be coming up with better pain control,
perhaps ask them again if there is anything else you can take or could you up
the dose you are presently on?
Nag your team to get you sorted Loraine, this is dreadful that they are
leaving you so long. I never had an MRI for my arm mets only an X ray and after
the cancer has detsroyed about 30% of bone the picture is pretty accurate. If
you have an MRI ask them to check for any disease in the spinal meninges.
MRI, hey, not so bad, take a CD with you to listen to whilst in the 'washing
machine' as they call it at my hopsital.
Let us know how you get on,
LOL Velvet (UK)
"L. Mirza" <haq4u@...
The rads oncolgist has set me up for radioactive
injections first as apparently they want to see if the
very wide spread cancer-speckles can be reduced as
much as possible first. The cancer has spread across
my entire rib area, lower spine and pelvis.
One question for you. (Hope you are feeling up to
this) Was your bone cancer as wide spread as mine or
did you have specific "regional" flare ups over a
period of several years? The doctor said since my pain
and the bone scan appears to indicate mine is spread
over a lot of area and since only a small area can be
radiated at a time and I would have to wait for other
treatments as not to receive too high of radiation
doses he wants to try the injection first that will
target the cancer in whatever bones it is in. He said
the injection method is not used often, except in
cases such as mine. This should take place next week.
He said he has only used it in two patients this year
but the results were good.
Then I can try the other palliative radiation, but not
before I get an MRI scan to see and map the areas to
be radiated. My heart speeds up just thinking about an
MRI!!! And then there will be a very long ride for
five consecutive days as they only have that rad
therapy contraption at their facility 20 miles away,
thru very heavy traffic.
Oh Velvet, don't think I've ever been in so much pain!
I've tried morphine but it just makes me vomit. I've
tried Oxicodine but again it made me vomit. I'm on
Norco, a higher codine, lower Tylonal dose of Vicodine
so I can take double the dose. It works but not during
the entire 4-hours between doses.
One of the pain clinic doctors a wonderful
anesthologist who gave me epidurals for back problems
said she can do blocks (as you suggested as well) to
give me some relief as soon as my oncologist gives her
the go-ahead.
That's it for now. Regards, Loraine
--- velvet girling <osteonecrosisjaw@...

Re: PLEASE PRAY!!!!!

2008-06-26 17:56:56

Kathy,
I will keep you and your cousin Carrie in my prayers...miracles can
and do happen!!
Gina

Palliative Radiation, to Velvet from Loraine

2008-06-26 12:01:17

Loraine I am so sorry you are in so much pain. You remain in my prayers.
Hugs
Marianne

Palliative Radiation, to Velvet from Loraine

2008-06-26 02:01:09

The rads oncolgist has set me up for radioactive
injections first as apparently they want to see if the
very wide spread cancer-speckles can be reduced as
much as possible first. The cancer has spread across
my entire rib area, lower spine and pelvis.
One question for you. (Hope you are feeling up to
this) Was your bone cancer as wide spread as mine or
did you have specific "regional" flare ups over a
period of several years? The doctor said since my pain
and the bone scan appears to indicate mine is spread
over a lot of area and since only a small area can be
radiated at a time and I would have to wait for other
treatments as not to receive too high of radiation
doses he wants to try the injection first that will
target the cancer in whatever bones it is in. He said
the injection method is not used often, except in
cases such as mine. This should take place next week.
He said he has only used it in two patients this year
but the results were good.
Then I can try the other palliative radiation, but not
before I get an MRI scan to see and map the areas to
be radiated. My heart speeds up just thinking about an
MRI!!! And then there will be a very long ride for
five consecutive days as they only have that rad
therapy contraption at their facility 20 miles away,
thru very heavy traffic.
Oh Velvet, don't think I've ever been in so much pain!
I've tried morphine but it just makes me vomit. I've
tried Oxicodine but again it made me vomit. I'm on
Norco, a higher codine, lower Tylonal dose of Vicodine
so I can take double the dose. It works but not during
the entire 4-hours between doses.
One of the pain clinic doctors a wonderful
anesthologist who gave me epidurals for back problems
said she can do blocks (as you suggested as well) to
give me some relief as soon as my oncologist gives her
the go-ahead.
That's it for now. Regards, Loraine
--- velvet girling <osteonecrosisjaw@...

PLEASE PRAY!!!!!

2008-06-25 22:45:35

This from my cousin Carrie
It is with a heavy heart I bring you news today. I met with my doctor
and he told me there is an extensive amount of cancer in my spine. The
worst part is the lower thoracic region. Sadly it is heading toward
the spinal cord. My doctor looked me straight in the eye and told me
it could lead to paralysis. He discussed several options with me that
scared the living daylights out of me. We are going to start out with
radiation to the thoracic area. He will be watching me very closely.
Heaven forbid that doesn't work, the next step is to surgicly insert a
stunt into my brain and send the chemotherapy straight to the brain.
It is time to start praying for a miracle
Kathy Sickles

Re: Palliative Radiation

2008-06-25 17:25:08

Lorraine,
So sorry to hear about the bone spread and pain, I haven't had
palliative radiation...so far I've been able to keep the pain mostly
in check with Advil and Lortab. I have a co-worker who had rads for
bone mets and my understanding is that it helped her quite a bit.
Please keep me posted on your progress.
Hugs and Blessings,
Gina

Palliative Radiation Lorraine from Velvet

2008-06-25 12:10:16

Hi Lorraine
I have had a lot of palliative radiaotherpay, some sites twice even tho' it is
said sites can only be zapped once ~ not true, but it does depend on where and
how much you had previously as to how much you can have again. It depends
largerly on what the beam covers, which other tissues get zapped at the same
time but I did find there seemed to be a great deal of planning and a number of
tiny pin prick tatoos, lots of pen marks that got on to my clothes ( so wear
something old) that did not wash out on the first wash. I also had those marks
re marked each time and could not shower them off for five days. Not a huge
problem.
Pal rads can be one dose or five smaller fractions in my experience over 8
years. The effects were never immediate but noticeably works some 10 days in
tho' each person is different. The pal rads continues to work for up to 12 weeks
so progress can be slow after the initial pain reduction, it seemed to me like
the main pain reduced in those early days then what was left reduced quite
slowly. Whether that is the nature of the pal rads or my own individual reaction
I am not sure. Scans did not show a visible reduction in the sites tho' pal rads
certainly does knock back the disease but leaves the bone scarred so the scan
picks up on the abnormal bone, the scarring, making me initally worried that it
hadn't worked, but it had because those sites that caused me to scream out in
pain were dealt with and I came down from 240mg morphine (MST) to 20mg in about
4 months but that was mostly to do with the process of reducing the morphine
rather than being in pain, You can't just drop
the dose otherwise there will be morphine withdrawal symptoms, so for a while I
was taking much too much morphine but was determined not to have a domino effect
in my treatment, you know, treating one area then treating the treatment ~ it
can be a nightmare.
So take it steady if you are having morphine, withdrawal effects are very
unpleasant and probably best to be a bit drowsy from being over opiated than
suffer the withdrawal or reduce the dose slowly of whatever you are taking. The
pain team and the pharmacy in my case were better advising me on dose reduction
than the onc, he said take its slowly but the others actually gave me direct
instructions.
It all depends on where you have pain but certainly in my femur and trochanter
by the end of 4 months that leg was visibly showing signs of muscle atrophy and
so I needed a brief visit with the physiotherapist to get my leg strong again
and did about a month of special exercise. The ribs and spine mets pal rads
definitely made me sleepy afterwards but it got to a stage of wondering whether
I was sleepy from the pal rads or from over opiating ~ it is a time of
negotiating and tuning into your own body to determine which is causing the
drowsiness.
Just one thing I will say if you drive a car, the sleepiness can come over you
quite suddenly or i should say it did me and so driving was out of the question
for a few weeks but the pal rads will work and you will be out of pain quite
soon. I know metatsatic pain can be excrutiating, especially rib pain that hits
you with every breath, spine pain with every step but take your pain control,
seek help from pharmacy or the pain team to best advise you on what is best.
Part way through my pain episodes the pharmacy suggested another pain med but I
refused, better the devil you know........ stick with what you know works and
maintain the dose preventing pain is the answer not waiting until you get pain
again.
Press your onc/rads team to get you under way with this urgently if they are
tardy with your appointments.
Just one other thing for some of the rib and spine sites I had nerve blocks
and steroid injections, taken to theatre for them as it has to be sterile
conditions, these acted well but do not always and the lasting effects can be
very individual. You don't get the swelling of the face with these shots as the
dose is so low, some it worked for me and others had no effect at all, so very
variable but worth a try.
Hope things soon settle, pain is so draining but push for immediate attention.
LOL Velvet (UK)

Radiation to control mets to the bones. I have an
appointment to meet with the rads doctor as there has
been bone spread and I am in excruciating pain.
Can those of you who have had palliative radiation
tell me if it helps with the pain and what are the
proceedures you go thru.
Thanks kindly in advance, Loraine

Palliative Radiation

2008-06-25 06:17:48

Loraine I am so sorry to hear you are in so much pain. You remain in my
prayers.
Hugs
Marianne

Palliative Radiation

2008-06-24 19:02:11

Radiation to control mets to the bones. I have an
appointment to meet with the rads doctor as there has
been bone spread and I am in excruciating pain.
Can those of you who have had palliative radiation
tell me if it helps with the pain and what are the
proceedures you go thru.
Thanks kindly in advance, Loraine

Re: How is Jan K?

2008-06-24 14:17:58

I haven't heard anything from Jan K...quite a while ago I got an e-mail
from Michele asking about my experience with Xeloda, I responded but
haven't heard back from her. I'm going to send her another e-mail
today. I'm getting worried about her...
Gina

Off subject but.....

2008-06-24 10:12:06

Hi
I was reading an aritcle in a a magazine about make-up. Did you know we
apparently absorb over 5 ounces of make-up a year through our skin? (if you
apply foundation on the face and neck + other make-up) What else do we absorb, I
wonder? All the exhaust fumes, dust from unknown sources, water supplies etc ~
it's got me thinking!
LOL Velvet (UK)

How is Jan K?

2008-06-24 04:00:24

Has anyone heard how Jan K is? I was hoping to get an email from her hubby but
nothing has come through.
Likewise has anyone heard from Michelle, Juts wondering how she is too.
LOL Velvet

Please pray for my cousin Carrie

2008-06-23 16:32:15

Hello,
I'm asking if everyone will please send my cousin Carrie A
GET WELL CARD, she is a wonderful person and she was just diagnosed
with Bone Cancer in her neck, collerbone,spine and legs, she was in
remission from breast cancer for 6 years, before this diagnoses. Please
pray for her and her family.I'm trying to get alot of people to send
her cards, so please forward this to all your friends
Carrie Debartolo
6424 Kristina Avenue
Portage,Indiana 46368
Kathy Sickles
Please visit this sight and sign my cousin Carrie's guestbook
http://www.caringbridge.org/visit/carriedebartolo

Re: [Stage IV Breast Cancer] Please pray for my cousin Carrie

2008-06-23 15:00:22

I will keep Carrie in my prayers.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://www.geocities.com/chucky5741/breastcancerpatients.html
Anxiety Depression and Breast Cancer

Re: [Stage IV Breast Cancer] Loraine

2008-06-23 02:56:35

Thanks for you thoughts. I'm finishing off my last
scan on Monday, so will have a better idea of what's
goiing on during my next oncolgosit appointment the
same week.

bone health

2008-06-23 02:39:21

Hello all
I have read a lot on these sites about bone scans and dexa scans over the
last few days. Below is some info on bone health that maybe of benefit to some.
First of all years ago when I first qualified and went into a research lab I
was told that the pattern of bone maturation develops when we are about 12 -13
years old, the way our bones develop and cells rotate are fixed by that age so
if you are going to have poor bones then at this age it is detectable, likewise
good bones. Of course measuring bone density and other properties in bone have
changed considerably since the 70 and 80's but I am presently involved in some
bone research studying ONJ and one of the oral max faxes on the team says that
the bone pattern is set around puberty. To a degree your bone health life
pattern is determined by your genes, check out whether either parent had
osteporosis or indeed grandparents as this could determine your own
predisposition. Of course those with parents of a certain age will be pre- bone
density determinents or osteporosis diagnosis but a hint might be that someone
had a broken hip or was bent over quite severely which could
indicate bone loss in the spine. Osteporosis applies to both men and women. But
along comes further research which shows we can improve bone health.
Recommendations in Uk for calcium intake are :-
calcium carbonate or citrate 1000mg to 1500mg per day in divided doses as the
body can generally only deal with 500mg at a time, taken with meals, water aids
absorption
Vit D3 400-800 IU per day
10 minutes of sunshine aids synthesis of vit D, which inturn aids calcium
absorption. Magnesium 300 -350 mg
and phosphorous but we get that very easily from our food.
A ten minute brisk walk daily can constitute as weightbearing exercise (you
don't have to take up weight lifting ~ thank Heavens)
If you are taking Fosamax or similar do not take calcium products within 2
hours.
The above regime can improve bone health by 1-2% over a two year period
Tamoxifen in a study increased bone density by 2% in one year and 19% over 5
years.
Arimidex decreased boned density by 3-4% over 2 years (no evidence for Femara
and Aromasin) (yet) (ATAC study)
If you have filtered water or a water softener you may be reducing natural
calcium carbonate, but also reducing other impurities in the water.
And Lorraine if you are reading the latest recommendation is twice yearly for
the bisphosphonate Zometa to improve bone density but interestingly the makers
dispute this ~ of course they want to sell their product.......
Hope this helps LOL Velvet (UK)

Re: [Stage IV Breast Cancer] From Velvet to all

2008-06-22 23:54:55

Velvet I am glad you are doing better. We were all worried about you. You
remain in my prayers.
Hugs
Marianne

From Velvet to all

2008-06-22 19:03:04

Hi Folks
Thank you to all who have sent such kind and touching words.
There is a slight muddle so I shall briefly explain The stepmother is not
mine. Jenny who died has a Downs syndrome daughter Katie who is married. Katie's
father re married this witch of a woman who is the step mother to Katie, (the
father died about 4 weeks in to the marriage, had a heart attack whilst driving
~ he was stopped at traffic lights and just died and post mortem revealed heart
attack but I did wonder if SM had prompted the death in any way at the time ~ I
did not know him)
I am all Katie has except for her husband, bless him, who hasn't a great deal
of education and isn't very bright but adores Katie so who am I to weigh him up,
Katie adores him and that's all that matters.
I have received a letter from the wicked witch SMother this morning and have
sent it back 'return to sender' unopened. I think she will get the message.
The funeral is now going to be on next Tuesday so I may go (the funeral people
have too many deaths so re-arrangement)
Katie has come in to her own from a timid, say nothing, person who is
following my instructions to the letter and dealing with all the paperwork
though checking she is doing the correct thing with me by phone. She is ringing
me and letting it ring twice, cutting off, then ringing me back so I know it is
her otherwise the answerphone is on all the time. Oddly enough I think her
mother's death will be the making of her, a very strange thing to say, I know
but she has taken the reins beautifully as I told her she is head of the family
now and she has to do certain things responsibly. There seems to be endless bits
of paperwork to do when anyone dies. Bless her she even asked the solicitor to
quote his fee for all the work before he proceeded ~ how's that for a timid, say
nothing person?
I have managed to get some good sleep and have got the pain back under control
from sleeping on an old uncomfortable chaise longue for three nights, each of
which were disturbed several times ~ it is easy to say I need to take care of
myself but at times like these........
Sorry I am unable to reply individually but time etc. but i thank you so much
to those who sent well wishes to me, very supporting, thank you, thank you,
thank you.
Stepmother has nothing to do with the Will, the death, me or Katie or her
husband and from last Monday I, Katie and her husband will have nothing to do
with her, will not respond to her calls or letters ~ we don't want to know, that
is the end of any relationship we had, she is bitter and twisted, nasty and sour
and that kind of person we can do well without. We will grow stronger and be at
peace. I am oK with Jenny's death, she is in a better place and I am only too
pleased to have completed each and everyone of my dear friend's wishes ~ i have
bounced back from the strain ~ I am a tough old bird ~ takes more than a nasty
old stepmother to get to me.
Love to you all, Velvet xxxx

Re: [Stage IV Breast Cancer] Memory Box - This is a nice idea Velvet

2008-06-22 11:49:58

Hi Kathy
I found lots of info on 'winston'swish' but had started a memory box years ago
for me and my children. Tho' I have had a memory basket for about 45 years. A
piece of drift wood from Troon beach, a sand dollar from Florida, shells from
various holidays, the wristbands from when my twin babies were born, their first
babygros, their signed shirts from when they left each school, all the class
signed each others, not washed as the ink would wash out, their first money
boxes etc all with little notes attached.
But the memory box I am creating is for thoughts rather than posessions.
There are some really nice, decorative large hat boxes or even leather type
storage boxes from Argos which are reasonably priced. I am compiling a list of
prompters but you have some really good ones below Kathy which I will add to.
I'll post a list of ideas which anyone can print off because it is so easy to go
blank when doing something like this, the emotions get in the way. There are
some really nice wedding photo albums without 'wedding' written on the front and
need to add to it from the hundreds of photos with special notes attached. I
must be the only person in the world who spent over a week some while back
gathering all my photographs and putting them in some kind of order and into
albums, they take three book shelves plus loads on the computer as well.
When I have my memory box truly set up I will post with the ideas so anyone
can follow them, letting you know exactly whereI bought what in the uK. I
actually find once I have some kind of order and get it organised then I don't
get too emotional, will get back to yuo on this.
LOL Velvet x
Kathy S <kathy.sugio@...
Hmm, I think I'll get a box to hold a scrapbook or a small notebook
with removable pages that might be easier to file. I can write in
Japanese on one side of a page and in English on the other and file
with topic tabs. I'd have to keep each page simple with a single
anecdote though. There are objects that might not fit well in a
scrapbook, like an DVD of an old video tape or small objects, thus
the box.
Some of the topics:
My biography -broken into a number of subcategories like babyhood,
school years, ... places I visited with my parents etc. With photos.
What did I want to be when I grew up? An artist. I like berets (and
have a few now to cover my smooth chemo head.)
What was my most memorable Christmas/Birthday present?(I got a black
vinyl Indian Teepee when I was 6 and I took it to playdates. I and 5
friends could fit inside the easy-to-set-up tent and we had secret
meetings, which were rather obvious as a 7 foot tall black teepee in
a driveway is rather conspicuous).
My first boyfriend (when he and I were 5 years old...he was chubby
and pink, my favorite color back then altough I'm getting a little
tired of it these days :-) ...)
First impressions of Japan when I came here as a student (things I
said, embarassing moments, achievements, laughable moments).
When, where and how did I meet their father?
A summer/autumn/winter/spring day from the past. (where was I when
certain historical events took place? My mom let me have 7-Up as a
special treat the summer day that Neil Armstrong was taking his small
step/giant leap on our tiny black and white TV. I only had two
brothers then.
Who inspired me and how, then and now?
Inspirational quotes and the situations they've helped me through.
A list of songs, books, places... I like.
Nice things people have said or done for me.
Things I've enjoyed doing for other people.
Pet peeves and nice surprises.
The birth story of each child. I have small booklets for each child
that are in Japanese with medical details and their health history up
to age six and I wrote a few paragraphs about the day each child was
born. I also saved a set of coins from the years they were born.
A copy of the family tree my mom put together and the story behind
the family silver service that is in the closet waiting to be passed
to them (we use chopsticks and setting up a bride with silver service
for 12 or more is not a tradition for them.). Christmas/Birthday
cards to us from my family.
Family recipes for things I make for the children with shortcuts and
substitutes for ingredients that they may not be able to find in
Japan. The history of the recipes (from my family, friends, weird
inventions that turned out well, utter failures not to try...).
Contact information for my family (phone, address and e-mail
addresses for my children's grandparents, uncles and their famlies in
the U.S. as I think my husband won't be able to get these as he's not
interested in his in-laws).
Contact information for the children's Japanese relatives down in
Kyushuu (phone and address only, as they're not in cyberspace yet).
I hope to make some sort of family tree with their Japanese
relatives' info. too. My husband's nephew did something like this
and visited many distant relatives when he was in college, so he
might be helpful.
Photos of me and my children with various relatives from both
countries.
Instructions on how to renew their U.S. passports in Tokyo with a
link to the Embassy website.
Events in our years as a family that I really enjoyed.
Hmmm, any other ideas? Household maintentance tips?
Kathy S. in Tokyo

Memory Box - This is a nice idea Velvet

2008-06-22 00:54:17

Hmm, I think I'll get a box to hold a scrapbook or a small notebook
with removable pages that might be easier to file. I can write in
Japanese on one side of a page and in English on the other and file
with topic tabs. I'd have to keep each page simple with a single
anecdote though. There are objects that might not fit well in a
scrapbook, like an DVD of an old video tape or small objects, thus
the box.
Some of the topics:
My biography -broken into a number of subcategories like babyhood,
school years, ... places I visited with my parents etc. With photos.
What did I want to be when I grew up? An artist. I like berets (and
have a few now to cover my smooth chemo head.)
What was my most memorable Christmas/Birthday present?(I got a black
vinyl Indian Teepee when I was 6 and I took it to playdates. I and 5
friends could fit inside the easy-to-set-up tent and we had secret
meetings, which were rather obvious as a 7 foot tall black teepee in
a driveway is rather conspicuous).
My first boyfriend (when he and I were 5 years old...he was chubby
and pink, my favorite color back then altough I'm getting a little
tired of it these days :-) ...)
First impressions of Japan when I came here as a student (things I
said, embarassing moments, achievements, laughable moments).
When, where and how did I meet their father?
A summer/autumn/winter/spring day from the past. (where was I when
certain historical events took place? My mom let me have 7-Up as a
special treat the summer day that Neil Armstrong was taking his small
step/giant leap on our tiny black and white TV. I only had two
brothers then.
Who inspired me and how, then and now?
Inspirational quotes and the situations they've helped me through.
A list of songs, books, places... I like.
Nice things people have said or done for me.
Things I've enjoyed doing for other people.
Pet peeves and nice surprises.
The birth story of each child. I have small booklets for each child
that are in Japanese with medical details and their health history up
to age six and I wrote a few paragraphs about the day each child was
born. I also saved a set of coins from the years they were born.
A copy of the family tree my mom put together and the story behind
the family silver service that is in the closet waiting to be passed
to them (we use chopsticks and setting up a bride with silver service
for 12 or more is not a tradition for them.). Christmas/Birthday
cards to us from my family.
Family recipes for things I make for the children with shortcuts and
substitutes for ingredients that they may not be able to find in
Japan. The history of the recipes (from my family, friends, weird
inventions that turned out well, utter failures not to try...).
Contact information for my family (phone, address and e-mail
addresses for my children's grandparents, uncles and their famlies in
the U.S. as I think my husband won't be able to get these as he's not
interested in his in-laws).
Contact information for the children's Japanese relatives down in
Kyushuu (phone and address only, as they're not in cyberspace yet).
I hope to make some sort of family tree with their Japanese
relatives' info. too. My husband's nephew did something like this
and visited many distant relatives when he was in college, so he
might be helpful.
Photos of me and my children with various relatives from both
countries.
Instructions on how to renew their U.S. passports in Tokyo with a
link to the Embassy website.
Events in our years as a family that I really enjoyed.
Hmmm, any other ideas? Household maintentance tips?
Kathy S. in Tokyo

Re: [Stage IV Breast Cancer] a bit morbid but need to know

2008-06-21 23:53:54

Hi Velvet,
I was not aware of this. Do you have Hallmark Card/Gift Stores by you? I
think I would start at a place like this or how about asking at the hospital
gift store?
You are in my prayers.
Hugs
Marianne

a bit morbid but need to know

2008-06-21 08:31:38

Hi
Has anyone heard of memory boxes?
On UK TV channel 4, (last one next Thursday) there has been a series called
'mummy diaries' it has been incredibly sad but at the same time incredibly
informative, yet moving. For those who have not seen it, it is about families,
some with young children, some with older children who have mummies who are
coming to the end of their lives, indeed those mummies filmed have died since.
Because of the memory boxes (and the input from the counselling and the
presenter,) the children and husband/partner are dealing with their grief,
quietly, calmly, opening these boxes and being able to talk about their loss.
Some of the younger children had got it so together, tears of course but openly,
being able to talk about 'mummy' easily and with such love.
The odd thing is I started a memory box and diary for my children about 7
years ago and with my help began another with and for a friend in similar
circumstances, an old shoe box actually but recently converted to a fancy hat
box.
On the programme these memory boxes were already entitled, designed for the
purpose and seemed to come with labels and a diary. Does anyone know where I
might get these from?
LOL Velvet x (UK)

Re: brain mets?/Gamma knife surgery

2008-06-21 07:36:12

Hi, I am Stage 4 and have brain mets. Thanks to radiation. Total and
fractional that shrank the tumors and CPT-11 and Doxil after a bad
seizure. I had Gamma Knife surgery 2 weeks ago and now there is
practically nothing left in the brain but...you can never be sure when
something may pop up again. It is not a death sentence!
Good luck and keep trying!
Jamie

brain mets?/Gamma knife surgery

2008-06-21 07:33:36

Jamie,
Glad your gamma knife surgery went well. I will continue to keep you in my
prayers.
Hugs
Marianne

Re: [Stage IV Breast Cancer] Sceleric bone?

2008-06-20 20:22:43

Rosalyn I will keep you in my prayers.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://www.geocities.com/chucky5741/breastcancerpatients.html
Anxiety Depression and Breast Cancer

Re: [Stage IV Breast Cancer] Another Velvet update also Cealy

2008-06-20 14:07:29

Wonderful news Velvet that your markers are down. So happy for you.
Xeloda did not work for me. I have been on Abraxine and after my next
treatment they will do scans to see if its working. I sure hope so.
Nancy

Sceleric bone?

2008-06-20 12:47:31

Hi, I was diagnosed with mets in July 2007 (after the original
diagnosis of IDC in July 2006) and just had my first 90 days scan. The
mets in July was in my ovary and I had a hysterectomy and the ovaries
removed. Am on Arimidex.
We are in a watch and wait period it seems.
My onc said that the CT scan shows scleric bone areas on my pelvis
which he says are how a bone looks after it has healed after being
broken. That is may be nothing or could be where there was cancer but
not now. It has not changed over the last PET scan from July in size,
location or number.
He said if something does change in 90 days he will want a bone biopsy
(had one before when originally diagnossed, not fun) to double check
but if it doesn't change then no worry of active cancer there.
Really glad that nothing new has shown up but this is worrying...

Another Velvet update also Cealy

2008-06-20 01:52:09

Hello
Just to let you know I am sitting here munching on a chocolate bar as a way of
celebrating.
Yesterday at my hosp appt with onc I learned my tumour markers are down to 47,
the lowest since Feb 2005. 35 is the target. As a result I have changed my chemo
management to 14 days taking Xeloda and 14 days rest rather than 7 days rest. As
my bloods were dropping a fraction each time the onc thought I might recover
some blood quality and build up my strength to tackle any winter bugs. The last
cycle I found I was frequently drained of energy so this regime suits me very
well. Also my pain levels have settled and seem stable though a question mark
hovers over my elbow which is giving me a bit of grief with holding things like
the kettle if too full or pushing round the vacuum cleaner. ( excuse there not
to do too much housework, me thinks!!!) But due a scan soon so we will see what
is going on in that area.
Cealy my love
I have been in the garden this morning and picked four spikes of delphiniums,
heaps of red pink and white carnations and cut some shrub the name of which I
haven't a clue but quite glaucous in colour so the grey shows off all the
colours and the fragrance in the lounge is just wonderful. Hope you are OK.
LOL Velvet x (UK)

Re: Another Velvet update also Cealy

2008-06-20 00:24:17

Velvet,
I am celebrating with you. That is such good news from someone who
has been such a blessing to me. I don't post often but read a lot
and you always give us such good information. Congratulations on the
markers and may God Bless you with strength.
Kathy

Re: brain mets?

2008-06-19 16:30:28

Hello Beyza,
I am very sorry to hear about your mother. I don't know much about
brain mets...but there has been a lot of recent conversations
regarding brain mets and treatment options on www.bcmets.org . You
might want to join that list or just search the archives.
I do recall just reading about a woman who was diagnosed with brain
mets ~3years ago and is still going strong.
I will keep you and your mom in my thought and prayers. Please keep
us updated.
Gina

brain mets?

2008-06-19 05:36:56

Hello All,
My mom was diagnosed with invasive ductal carcinoma in 2002, at which
time the tumor was removed, and she was treated with chemo and
radiation. Then in 2005 it came back in the same breast, as well as
the left breast, lung pleura and liver. She was treated with taxotere
but the results were minimal. Then she was treated with Herceptin. The
tumors dissappeared in a very short time and she has been tumor free
since the begining of this year, according to the PETscan. Her doctor
stopped Herceptin after 72 treatments and put her on Aromasin. We have
been worried since in the past, her mets came back when she was On Femara.
For the last 2 weeks, she has been suffering from neck and headache.
Finally yesterday a brain MRI was taken, during which she had a sudden
blood pressure drop due to the injection of IVKM (i understand
something that aids imaging). So they had to cut it short.
The results indicate 2 tumors showing pathological contrasts are seen,
one of which is 11mm in the supratentorial level, and the other is
7mm in the right parietal region, and they consists cystic and solid
components.
Also 27x35x29mm lesion which consists cystic and solid components,
causing slight tonsillary herniation and pressurizing the IV.
Ventricule and the pons, is seen in the left cerebellar hemisphere.
We will go for lung x-ray and abdominal usg tomorrow. I am hoping that
the doctor will ask for PETscan. Her blood work is ok, with cancer
markers below the upper limits and almost are the same as her previous
results from the time she was tumor free.
And my question is... now what?
Does she have a survival possibility? or is this the last step?
Can chemo help this or is radiation the only solution?
Can she use Herceptin again, would it help?
Can she have surgery?
I appreciate your help, especially if you have gone through similar
experience.
Thank you,
Beyza

Cancer Discussion

2008-06-19 05:14:02

Come check out a new website called Cancer Discussion,
Its a non profit and scams are not allowed, strict actions will be
taken.
Thanks
CancerDiscussion.com

Re: [Stage IV Breast Cancer] good news about sharon in UK

2008-06-18 14:39:58

Excellent news! If you talk to her please tell her I am happy for her.
Hugs
Marianne

Re: good news about sharon in UK

2008-06-18 12:41:03

Wow...that is great news! Thanks for passing it along! Those are
the types of positive messages I love to hear!!
Gina

good news about sharon in UK

2008-06-18 12:32:16

Hi
Just for those who remember Sharon in the uk. I am pleased to let you have
some really good news.
She had Bc then three years later devleoped some symptoms and was told she had
liver mets. She did chemo last year then the liver mets came back again but this
time she has had chemo and herceptin and she emailed me at home to say her
tumour markers are 36, the huge site in her liver is way down, she finishes
chemo next week rather than going on for 5 more cycles tho herceptin continues
for a while, all her bloods are good, heart OK and Ct shows huge reduction in
sites, nothing else anywhere else.
I thought you all would like to hear how well she is doing, I am of course
over the moon for her I am certain she won't mind me spreading the good news to
you all, time to celebrate now so if you have a glass in hand, a toast .....to
Sharon.
LOL Velvet xxx (UK)

drug companies list

2008-06-18 03:02:49

Hi all
for anyone wanting to look up companies research and development programmes
clinical trials etc here is the list I search especially for oncolgy drugs in
the pipeline.
NOVARTIS, ASTRA ZENICA, BRISTOL MYERS SQIBB, BIOTECH, GENTECH,GLAXO SMITH
KLINE, MERCK, WYETH, ARENA, PFIZER, ROCHE.
here is a site listing a huge number of companies
www.pharmacychoice.com/marketplace/drug_manufacturers.
Marianne what do you think to keeping a list of drug companies on file, once
we/I sort out the major oncolgy companies?
Happy reading Velvet (UK)

Triple negs+ future drugs

2008-06-17 14:28:13

Just for others here I noticed among the many sites I looked at, one of the
companies is developing a taxol/taxotere (exactly which I cna't remember) oral
tablet but I can't find which company now ~ that probably isn't terribly helpful
but I think the next major advancement in chemotherapeutic agents could be
towards oral chemo in the form of tablets as the costs of IVs, staffing, along
with ever increasing demands on chemo units is getting higher and higher ~ we
will see ~ just my gut instinct at the moment. But chemo managed at home sounds
better already. Also my gut instinct tells me less toxicities/side effects, but
longer courses of less potent drugs. Perhaps drug companies have been listening
to patients at long last, who knows?
LOL Velvet (UK)
ginaleeusa <ginaleeusa@...
Hi Velvet,
Thanks for passing this info along! I'm also interested in what's in
the pipeline...for all bc, but especially triple negatives!!
Thanks again,
Gina

Re: Triple negs

2008-06-17 08:44:01

Hi Velvet,
Thanks for passing this info along! I'm also interested in what's in
the pipeline...for all bc, but especially triple negatives!!
Thanks again,
Gina

Triple negs

2008-06-17 08:22:35

Hi
I was looking up the company Bristol Myers Squibb website and saw under R and
D, clinical trials that they are recruiting for a trial of Dasatanib for triple
negs patients. Periodically I look up companies to see what is in the pipeline.
When you get on to the clin trials page look for breast cancer on the left of
the list and see 5th one down in BC for details. Scroll down in 'details' to see
USA (and elsewhere) recruiting.
(Go into R and D (Research and Develoment) and follow links to clinical trials
disclosure registry.)
LOL Velvet X (UK)

Re: [Stage IV Breast Cancer] FDA Approves IXEMPRA(TM) (ixabepilone) For Treatment Of adv bc

2008-06-17 03:20:39

I read the article and while I'm not going to get too
excited, since the side effects appear to be the same
as with Taxotere, I suppose it would be worth a try if
the Taxotere stops working.
I'll mention the drug IXENPRA (IXABEPILONE)to my
oncologist.

FDA Approves IXEMPRA(TM) (ixabepilone) For Treatment Of adv bc

2008-06-16 23:57:56

FYI..FDA just approved a new drug for treatment of Stage IV BC!!!
http://www.medicalnewstoday.com/articles/85726.php
Gina

Computer probelms

2008-06-16 14:47:35

Hi
Is anyone getting what I am getting, read a post, click to the next and then

Bad oncs and others

2008-06-16 09:27:58

Hi folks
Talking about bad oncs and how they treat you at consultation... well I am
just appalled.
Once an onc had me strip naked, I asked did he really want everything off and
yes he did but I wasn't given a gown to put on so I left my pants on and a
cardigan over my shoulders. No female nurse was present and I asked for one to
come in, his immediate reaction was 'have you heard I can't be trusted?' Cogs
started to move in my head, 'have you heard' not 'don't you trust me then'
which would have been my immediate reply, so I said 'yes I have actually' rather
than give him the benefit of the doubt and just in case it was a joke. So he
said no nurse was available without even checking and then got quite stroppy,
said, 'I thought I told you to take ALL of your clothes off then he picked up
his camera and held it at the ready. At the same time I did the buttons up on my
cardigan, weave my arms through the sleeves, then grabbed my trousers and put
them back on. I said, I can't do this today and walked out but on the way he
grabbed my arm and told me I was a silly little
girl. I said 'let my arm go, that constitutes assault and he did and then I
told him that his behaviour was entirely unprofessional.
But he had not said I want to examine you, ask me how I was, ask if there were
any problems and I hadn't told him anything about me, it was simply come in and
then said pop in there and take all your clothes off. I spoke to the nurse after
and told her and she immedialtely went in and I could hear raised voices. When I
saw my records he had put 'extremely nervous woman who refused treatment today.'
I had that removed from my records and enclosed a letter of complaint about the
manner inwhich I was spoken to and how strange and unprofessional the
consultation was.
That same afternoon I had to take a friend to see someone else and no joke, as
we came in he put an alarm clock on the desk and said you have 10 minutes. (well
it took 5 of those to get over the shock) No 'Hello' 'Good afternoon.'
'What's wrong' was the first time he looked up. Now my friend had a blocked
tear duct, not major but it has been a problem all her life and tears run over
on her cheek and she is permanenetly raw and sore. And it was my idea to get her
to see a professional so I felt awful, as you can imagine. He looked in her eye
and then drove a 4 inch long needle type instrument down her tear duct without
telling her what he was going to do and out spurted this muck and blood then he
gave her some gauze and opened the door, cue to leave. No goodbyes, just as an
after thought he yelled pay at the desk. (The procedure didn't work and later
she had a mini op) My friend complained to the girl at the desk and said how
rude he was (personally, I would have told him to his face) and the girl just
said do you want to see him again or don't you? Make your mind up now. ...... we
walked. No thank you!
A breast surgeon friend of mine has had some time off because his wife has had
BC, rads, chemo and reconstruction and he told me how amazingly different it
was being on the patient's side of the desk, (umh..... eyes opened then!) he
had no idea how the manner inwhich you are greeted and treated in the
consultation room and the information bestowed upon the patient can affect the
healing process, or aggravate it. And this is supposedly from two people who
know what they are dealing with albeit not their/her own particular disease.
He couldn't believe the response he got from some doctors, I hasten to add
they did not get treatment at the same hospital they work at. He was completely
horrified at hearing his wife (a doctor) being told 'crying is a thing babies
do', which means 'I don't know how to handle tears.. or even want to know;
being scared .. 'it's all in your head' which means I can't handle this either;
being told not to research at all as 'it will only make things worse for you'
this means worse for him; 'understanding is not the way forward' and 'don't
bring questions with you as you can get so confused' means I might have to
spend some time explaining things and i wish to continue with the (imagined)
power I have over you, and 'just leave it to us, we want to take over and deal
with this' means ask nothing as I can't be bothered to answer. In some ways I
think it was good that they had a bad experience, it taught them both something
~ let's hope they pass this on.
For anyone being put under pressure to have this, that or another type of
treatment, they need to state clearly that 2-3 days to think things through is
not unreasonable and has to be left alone to consider the plans and make a
decision. A doctor/surgeon calling you at home and expecting you to make a
decison there and then must constitute harrassment, if not, it is definitely
pushy and unprofessional. And I would say that to them. Fair enough if it has
taken a couple of months but immediate life changing decisions should be thought
through carefully, heck you don't buy a house without looking around and then
thinking it through. Breast cancer treatments are major life changing decisions
we are expected to make, if only some of these doctors be willing to sit and
explain carefully with a small degree of courtesy it would be so much easier.
LOL Velvet (UK)

Re: an assortment from velvet

2008-06-15 21:08:37

Velvet, I had to take a break from this board and another one for
women with BC, sometimes I think it's a heathy thing to do. I'm back
on now but just a bit. I want to be able to offer info about the
chemo's and the Gamma Knife surgery I had on Monday...no fun! BTW I
lurk some and do try to read your posts.
Take Care,
Jamie

Re: [Stage IV Breast Cancer] lymphodema massage diagrams didn't come through

2008-06-15 14:48:52

Re previous post of mine: the diagrams didn't come through so go into
cancerbackup UK and click on Lymphodema for full info, sorry I didn't consider
the diagrams might be deleted ~ what a shame, you need them to follow. Velvet
(UK) PS lymphodema is spelt slightly differently here (still use a lot of greek
and latin) but still the same thing.
velvet girling <osteonecrosisjaw@...
across this and thought it may help those affected by lymphodema. This is only
part of the chapter. It is from 'cancerbackup' uk which you can get on the Net.
A Uk site, this is full of sensible, easy reading, not overly technical
information on many aspects of breast cancer. It is also current. Please refer
to the full chapter on lymphodema, quite a large entry, before commencing any
massaging and for the full instructions and advice and if necessary consult your
lymphodema therapist or oncologist first. You can print off too.
Not seen diagrams anywhere before.
Hope this helps LOL Velvet (UK)
About MLD A very specialised type of massage called manual lymphatic drainage
(MLD) is an important part of the treatment of lymphoedema. To be effective in
treating lymphoedema, it is important to use the correct technique. The aim of
the massage is to stimulate or move the excess fluid away from the swollen area
so that it can drain away normally. Massage also encourages and improves
drainage in the healthy lymphatics (which helps keep fluid away from swollen
areas).
Manual lymphatic drainage differs from ordinary massage - it is very gentle and
aims to encourage movement of lymph away from swollen areas. MLD is particularly
useful if there is swelling in the face, breast, abdomen, genitals or elsewhere
on the trunk.
As this is a specialised form of massage, it should be given only by a trained
therapist. There are some other different techniques including the Vodder,
Földi, Leduc or Casley-Smith methods. Therapists should be trained in at least
one of these.
Increasingly, MLD is provided by the NHS at lymphoedema treatment clinics.
However, it is not yet available at all centres. If you are having difficulty
finding a qualified MLD therapist, you can contact MLD UK, who keep a register
of their members.
back to top
Simple lymphatic drainage (self massage) Once you have been taught the
techniques you can do a simplified version of MLD yourself at home. This is
sometimes called simple lymphatic drainage (SLD). You use your hand very gently
to move the skin in a particular direction. The massage is done without any oils
or creams. If your skin is sticky and your hand does not move freely, a little
talcum powder may be helpful. If you find that the skin is red when you have
finished, then the movement is too hard.
It is often easier if your partner or a friend also learns the technique, so
that they can help you in any areas you cannot reach. Your lymphoedema
therapist, physiotherapist or nurse will be able to show you or your partner (or
friend) the technique.
The diagrams and explanations below should also help. They are intended as a
guide only when you are doing your SLD. You must be properly taught these
techniques before you start.
Massage 1 - for both arm and leg swelling
The massage aims to stimulate the flow of lymph in the body generally.
Place your fingers, relaxed, on either side of your neck at position 1.
Gently move the skin in a downwards direction, towards the back of your neck.
Repeat 10 times at position 1, 2 and 3.
At position 4 (on the top of your shoulder) use a gentle movement around the
front of your neck in towards the top of your breastbone (where the collarbones
meet).
Repeat 5 times.
If you have a short neck you may not be able to massage the neck in four places.
If this is the case, miss out position 3.
Massage 2 - for swelling of one arm
The aim of this massage is to stimulate the lymph channels on the trunk to clear
the way ahead so excess fluid can drain away.
The skin is always moved away from the swollen side. You will find it easier to
start with one hand, and then swap to the other as you move across the body.
Starting in the armpit on the non-swollen side (position 1), use light pressure
to gently stretch the skin up into the armpit. Your hand should be flat and not
slide over the skin. Repeat 5 times.
Next, at position 2, use a light gentle movement with the whole of the hand to
slowly stretch the skin towards the non-swollen side, with a slow rhythm. Repeat
in the same area 5 times.
Repeat the same movements at position 3.
Swap hands, and repeat the movements 5 more times at position 3 with your other
hand, as this position is very important for lymphatic drainage. This time, the
movement with your fingers is a slight pull to move the skin towards the
non-swollen armpit.
Repeat movements 5 times at position 4, then 5.
If you have the help of a partner or friend the massage can be repeated across
the back, starting again from the non-swollen side (position 1).

Re: Starting chemo

2008-06-15 12:45:10

Tee, I hope your 1st chemo was ok. It hurts to be poked and the bags
hanging over your head is a tad intimidating. I have had over a 100
infusions and it has become "normal" for me but the feeling of fear
never goes away. Breath! Breath in Good through the nose and breath
out the fear through the mouth. It does help.
Much peace to you,
Jamie (stage 1V mets to lungs and brain, diagnosed 1/05)--- In

lymphodema massage

2008-06-15 12:28:28

Hi folks, I came across this and thought it may help those affected by
lymphodema. This is only part of the chapter. It is from 'cancerbackup' uk
which you can get on the Net. A Uk site, this is full of sensible, easy reading,
not overly technical information on many aspects of breast cancer. It is also
current. Please refer to the full chapter on lymphodema, quite a large entry,
before commencing any massaging and for the full instructions and advice and if
necessary consult your lymphodema therapist or oncologist first. You can print
off too.
Not seen diagrams anywhere before.
Hope this helps LOL Velvet (UK)
About MLD A very specialised type of massage called manual lymphatic
drainage (MLD) is an important part of the treatment of lymphoedema. To be
effective in treating lymphoedema, it is important to use the correct technique.
The aim of the massage is to stimulate or move the excess fluid away from the
swollen area so that it can drain away normally. Massage also encourages and
improves drainage in the healthy lymphatics (which helps keep fluid away from
swollen areas).
Manual lymphatic drainage differs from ordinary massage - it is very gentle
and aims to encourage movement of lymph away from swollen areas. MLD is
particularly useful if there is swelling in the face, breast, abdomen, genitals
or elsewhere on the trunk.
As this is a specialised form of massage, it should be given only by a trained
therapist. There are some other different techniques including the Vodder,
Földi, Leduc or Casley-Smith methods. Therapists should be trained in at least
one of these.
Increasingly, MLD is provided by the NHS at lymphoedema treatment clinics.
However, it is not yet available at all centres. If you are having difficulty
finding a qualified MLD therapist, you can contact MLD UK, who keep a register
of their members.
back to top
Simple lymphatic drainage (self massage) Once you have been taught the
techniques you can do a simplified version of MLD yourself at home. This is
sometimes called simple lymphatic drainage (SLD). You use your hand very gently
to move the skin in a particular direction. The massage is done without any oils
or creams. If your skin is sticky and your hand does not move freely, a little
talcum powder may be helpful. If you find that the skin is red when you have
finished, then the movement is too hard.
It is often easier if your partner or a friend also learns the technique, so
that they can help you in any areas you cannot reach. Your lymphoedema
therapist, physiotherapist or nurse will be able to show you or your partner (or
friend) the technique.
The diagrams and explanations below should also help. They are intended as a
guide only when you are doing your SLD. You must be properly taught these
techniques before you start.
Massage 1 - for both arm and leg swelling
The massage aims to stimulate the flow of lymph in the body generally.
Place your fingers, relaxed, on either side of your neck at position 1.
Gently move the skin in a downwards direction, towards the back of your neck.
Repeat 10 times at position 1, 2 and 3.
At position 4 (on the top of your shoulder) use a gentle movement around the
front of your neck in towards the top of your breastbone (where the collarbones
meet).
Repeat 5 times.
If you have a short neck you may not be able to massage the neck in four
places. If this is the case, miss out position 3.
Massage 2 - for swelling of one arm
The aim of this massage is to stimulate the lymph channels on the trunk to
clear the way ahead so excess fluid can drain away.
The skin is always moved away from the swollen side. You will find it easier
to start with one hand, and then swap to the other as you move across the body.
Starting in the armpit on the non-swollen side (position 1), use light
pressure to gently stretch the skin up into the armpit. Your hand should be flat
and not slide over the skin. Repeat 5 times.
Next, at position 2, use a light gentle movement with the whole of the hand
to slowly stretch the skin towards the non-swollen side, with a slow rhythm.
Repeat in the same area 5 times.
Repeat the same movements at position 3.
Swap hands, and repeat the movements 5 more times at position 3 with your
other hand, as this position is very important for lymphatic drainage. This
time, the movement with your fingers is a slight pull to move the skin towards
the non-swollen armpit.
Repeat movements 5 times at position 4, then 5.
If you have the help of a partner or friend the massage can be repeated
across the back, starting again from the non-swollen side (position 1).

Re: [Stage IV Breast Cancer] an assortment from velvet

2008-06-15 01:00:28

Velvet I am glad you are have decided to stay. Your posts are always very
informative. You are in my prayers.
Hugs
Marianne

www.clarian.org/portal/patients/healthyliving;jsessioniddemonstrated that
patients lived longer. I have always thought stress and

an assortment from velvet

2008-06-14 17:01:10

Hi folks
I shall write about stress later but I think it is interesting to note that
after 8 days away on holiday and no computer (and not here) I noticed I could
not respond to many posts, I felt rather down reading all the problems and
though I wanted to respond to many I just felt it was too much for me. There
were some 'good news' posts but they were outnumbered by the problems. I even
considered leaving for a few days but then thought how members had helped me in
the past, I had helped them in retirn and wondered if I could still do that ~
the answer was yes.
(so you are stuck with me for a while!!!!)
The title of this is 'assortment' because I can not respond to individuals at
the moment but I expect I will gather momentum sooner or later.
Stress
There are a number of studies that demonstrate extreme stress causes cortisol
changes that can lead to depressed immunity. One 'advanced BC' study in 2000
www.clarian.org/portal/patients/healthyliving;jsessionid demonstrated that
patients lived longer. I have always thought stress and immunity were connected
but it doesn't account for people who have the most stressful lives and do not
get life threatening diseases. Zoo animals are a good source of examination.(In
latter days when zoos were pretty poor) I read a book recently about Mr
Pierpoint, UKs last registered/licenced hangman, if any job is stressful then I
guess this is it, but he lived to a good age, so stress and the dangers of
contracting life threatening diseases does not automatically go hand in hand,
far more research is needed.
When I looked back at the records of my stage IV cancer, I could see the
biggest progression out of all the progressions was about 2 months after my
father died.
Nausea
In Uk we have different medications for this.
Anti nausea meds work in a variety of ways. Some stop the peristaltic waves of
the stomach and gut. (these are the contractions that force the food through the
system and stopping this can cause constipation) Some meds are antihistamines
and can make you sleepy. Some meds empty the stomach rapidly so there is nothing
to bring up but my problem with this is that a person can still maintain the
'vomit mode' and heaving on an empty stomach can be painful. Some drugs work
only if you catch it early, once vomiting begins the drugs then fail to work. So
it is important to read the pack info leaflet and/or ask what the drug does to
you or research fully on the Net by simply typing in the drug name. I read that
some onco centres don't automatically give anti nausea meds, because of a, cost
and b, you may not be sick ~ just how cruel can prescribers be? Anti nausea meds
aren't the biggest cost in the world!
Unfortunately people without the Net cannot research things and here in UK
there are many, especially the older generation so a good deed for the day might
be to look up somethingfor those who do not have access to the Net.
Just to let you know what is available in Uk and maybe available in USA, I
have tried many over the years : domperidone, metoclopramide, cyclizine and
prochlorperazine, the last one causes sleepiness and dizziness rapidly in me but
can be taken at any time during vomiting, comes in tablets, injections,
suppositories the latter ideal if you have already started vomiting and can not
keep a tablet down. Maybe you need help with 'placing' suppositories and you can
ask about this.
I think the best adivce is to know what type of anti nausea meds you have been
prescribed, which forms they come in and know when to take them as well as
knowing all the side effects that may happen. Most tablets here in UK can be
given in suppository form, suppositories are common amongst the French by the
way. (you wanted to know that didn't you? !) Most pepole feel awkward about
using suppositories but believe me when I have been in 'vomit mode' and can keep
nothing down they have helped me enormously. (Ask fo a supply of rubber gloves
and cut off one finger at a time to use, then one glove does five times)
Bisphosphonates and other IV drugs.
My biggest grumble in UK and maybe USA is that if you are given a drug in
hospital (or chemo unit) you are often not told what the drug is or what the
side effects might be. Ask for a drug info sheet and get blank looks. Usually
you are not given the drug info leaflet, that is, by the way, filled with
information on just about every aspect of the drug. Well you should be given it!
How many people are given a full run down of the drug they are given in hospital
by the person prescribing or delivering it? Very few is my estimation.
Which leads me to bisphosphonates, pamidronate, zoledronic acid, ibandronate,
clodronate etc. Why, after the first reporting of osteonecrosis of the jaw (ONJ)
in 2000 are patients still not being fully informed about the risks? I read a
post today from someone who mentioned 'norcrosis' I presume you meant
osteonecrosis. I am doing some research with three oral max fax consultants and
a number of students and daily I recieve emails from patients worried about ONJ
and the problem of not being warned about the risk, 'no one told me anything
about it' 'not informed' I see on a regular basis. Further I see 'my dentist
knows nothing about it' yet the dental profession were warned about the risks of
ONJ in 2004 in UK.
If the lady above writes in again I can give you lots of info on the drug (i
did a huge delete session this morning after about 2000 in the trash box)
We are supposed to be fully informed about any drug or procedure we are to
take but in view of the medical profession's inability to respond to patients
needs, because of time or that they simply don't know, or can't be bothered, it
is in the main down to us to research the drugs we are expected to take. It
shouldn't be like this but unfortunately it is. I suggest you read the pack info
leaflets, question anything you don't understand, insist on answers, research on
the Net and if necessary email the drug company concerned to clarify areas you
don't understand. Generally they will not give medical advice but will willingly
explain other areas. Insist on drug info sheets of all drugs given to you as IV
preparation, injections, insist on knowing exactly what happens during a
procedure. And keep the info sheets for future reference. If the doctor hasn't
time to do this then he/she should point you in the direction of someone who
can. Here in UK just about every hospital has
a medical drug information service that you can ring or email ~ ask about this
service at your hospital pharmacy ~ they can give you evidence of trials and
studies, advice about any drug including over the counter drugs and most herbal,
homeopathic,supplements, vitamins and minerals etc. It is a free service in UK.
Perhaps someone can tell me if this exists in USA Oz or anywhere else.
Off label prescribing.
I noticed in today's posts some tamoxifen questions.
With any drug your doctor can prescribe off label. This means if he/she has
reasonable cause to believe that a drug will work for another condition besides
that which it is designed for, here in Uk a doctor can do that as long as he/she
takes responsibility for the consequences and the patient is fully informed. (I
am not saying tamoxifen was prescribed off label ~ tamoxifen can be used for pre
or post meno patients) (A friend off mine is being given arimidex off label even
though she is pre menopause just as an example)
I honestly believe that you can't be over informed, research, find out what
you medication is likely to do to you ~ all your medication, that is, be your
own advocate, insist on knowing every aspect of every drug you are given. But
don't get alarmed at every adverse event (side effect), drug companies by law
have to note every possible effect but you won't necessarily have them. Be
wise!!!
If this helps just one person then it has been worth while writing this.
LOL Velvet (UK)

Re: [Stage IV Breast Cancer] Hello everyone (long post, sorry)

2008-06-14 14:40:29

Lisa,
I had a friend with cancer who after a long fight felt the same way you do.
Everyone has a right to feel what is right for them. I personally would not
go back to work. I will keep you in my prayers.
Hugs
Marianne

--
Breast Cancer Patients Soul Mates for Life
http://www.geocities.com/chucky5741/breastcancerpatients.html
Anxiety Depression and Breast Cancer

Hello everyone (long post, sorry)

2008-06-14