Hi
I read some posts about Aromatase inhibitors (AIs) thought I would share my
experience.
I have taken the range of all the AIs now, over the last 8 years, Tamoxifen
firstly then, arimidex, faslodex, aromasin, letrozole and have simply changed
drugs as each failed or started to fail (I am stage IV) I have never been
completely off the drugs until now and it's only because my chemo was delayed
that I have been off for three weeks.
I read a post where someone came off for a week and really found no difference
to the side effects, well, I could say exactly the same about one week. Now off
by three has made a tremendous difference. I don't have pain in my knees, I
don't feel sick daily as I did before, my apetite is improved, it's normal now,
my hips are better than before but big site in my trochanter (very top of upper
thigh bone) so wouldn't ever be completely better. I sleep better too. I do have
hot sweats mostly in the morning but then the AIs aren't mopping up the
estrogen. I just generally feel better all round. So the onc who said if you
haven't changed in a week then you are unlikely to (or words to that effect) is
wrong in my experience ~ it has taken three for me to see any change. I do have
some arthritis and I do have weakened bones by virtue of the fact that the
cancer is in most of the bones and the reduced estrogen due to taking AIs.
About the weakened bones because of taking AIs, (AIs mop up estrogen (that
isn't technically the way it goes about it but it will do for now) well, I feel
it is unlikely that the body, in one week can strengthen them again, even by
several weeks or even months.
Osteoporosis (reduced bone density) comes about from years of reduced estrogen
and other drugs like steroids, (estrogen adds to bone density and that is why
(as well as other menopuasal sypmptoms) women were given HRT but evidence now
supports that HRT can increase the risk of breast cancer).
Various drug companies, seeing this niche in the market, jumped on the
bandwagon and produced a bisphosphonate (BIS) like Fosamax, but others too and
given IV for BC to bones.
Now it has emerged that there is significant risk from BIS causing
osteonecrosis of the jawbone (ONJ) (I have that too) but ONJ seems to be linked
in the main with the potency and duration of the therapy.
I read somewhere that after 31 doses of BIS you are at risk of ONJ but I
couldn't find the evidence for that statement however, it is seen in people who
have had many doses and had the more potent drugs and indeed I am one who had a
potent BIS and a duration of over 5 years, at 4 weekly intervals. At that rate I
have had more than double (5years X 13per year = 65 doses) (ONJ is also seen in
people who haven't taken BIS under the conditions above and is seen in patients
after taking oral prepartions too for much shorter periods + many other
scenarios)
A friend of mine was having an IV four times a year and is so far good, has
had this now for three years (=12 doses) had orthopantograms (revolving X-rays
around jaw/skull) and Dexa scans (measures bone density) and her bone density is
normal now and she is stopping the BIS for two years, then another Dexa scan
before proceeding again. (No use taking a drug if you don't need it.)
(I recently went thoroughly over my repeat prescription and all the 'over the
counter drugs' I take (because of going on to chemo) and I found, (why I had
missed it all these years I don't know) I have been taking folic acid for 11
years and no one knew why ~ I certainly didn't. In the pack of tablets I now
read not to take if you have any malignancy ~ well I have for 11 years too.
Anyhow that has been stopped.)(maybe re-check what you are taking?)
So all in all it is difficult to know exactly what to take and what not to
take, everything has to be weighed up and balanced. If you need to take
tamoxifen or AIs then without doubt bone density will be reduced. Some to a
smaller and some to a greater degree. Calcium can be taken but must be taken
with Vit D to synthesise the calcium but the optimen age for increasing bone
density is around 12-13 years old however, that doesn't mean to say you can't
improve the bone density in later years because it can. If you need to take AIs
then, and I hate to say this but joint pain seems to be a significant adverse
event ( English medical method of describing side effects! arrrggghhh!!!) and
ideally treat this with the analgesia that works for you. Of course, not
everyone gets this reaction as we all react differently.
If you are offered BIS then ask you prescriber what he/she knows about ONJ
(still after 7/8 years doctors know little about it) get a bone density scan
before and after a year or two, compromise on 18 months if you like and stop
taking BIS the very moment your bone density is up to level. Ask for the minimum
dose, one therapy protocol is 4 IVs a year, using pamidronate (Aredia) rather
than zoledronic acid (Zometa)
In the end you have to balance, preventing the cancer from comimg back with
maintaining your bone density and preventing bone loss and possible fractures
and all that goes with those.
To be informed is to have power, some times you have to trade one symptom for
another, very, no, extrenmely hard to do, along with all the emotional aspects
of living with or after cancer. but knowledge is power and remember it is you
that pays in the end not the doctor, surgeon or nurse. Read enough to
understand, the Net can be a powerful tool as long as you read in context, look
for evidenced studies, although you may find conflicting results but then you
can discuss these with your medic or here with people who are 'on the shop
floor' we are the ones that take the drugs. But you can't make choices unless
you are fully informed. For new members or I should say those new to BC, doctors
are only human, can and do make mistakes, (I was once given a drug for prostate
cancer, didn't realise what was in the pack until I got home but as always I
read the info before taking ) ask about the drugs offered to you, ask for more
information, discuss why you/they think a, would be
better for you than b, you can make decisions for yourself even at early
stages, even with surgeons though surgeons are a different breed.
I hope the above isn't too confusing and sorry if I lecture, I've written too
many papers and lab reports over the years and go into 'lab mode' every now and
again!!!
CT and Bone scans together.
I have just checked my scans and see I have had 14 CT and 14 bone scans on the
same day. Injection for bone scan then off to CT for whole body CT scan then
back for the bone scan. Also 3 times I have had bone scans, Ct scans and MRI
scans on the same day, each with an injection of contrast medium and a drink of
whatever and no ill effects at all.
Hope this helps
LOL Velvet (UK)