anyone having trouble taking aromatase inhibitors? - Page 2

Kathy in CA · 01-02-2008, 09:59 PM

I have been on Arimidex for six months along with a year of Herceptin for Stage IV breast cancer and have experienced incredible stiffness and pain. At first, it seemed to be in my upper body, hands, and hips, but the past month the ache has really travelled to my feet and knees. I have only tried exercise ,especially walking and it helps some. I still wonder if I should try ginger tea, fish oil, vit D or glucosamine condrointin but I get disgusted and don't try anything. I am 47 years old but I feel- and sometimes look -like I am 70. And incredibly all of this has happened over just twelve months! I'm sure many of you can relate. We are all just wanting to LIVE. My Doctor's response to trying different products for relief was very non-convincing-"well you can take those things and see if it works for you."

suzan w · 01-03-2008, 12:00 PM

I "stuck out" the pains and aches when I first started on Arimidex (same time I started Herceptin, so it was hard to know which was the culprit!) Now, 2+years on Arimidex later, my thumb joint is about the only complaint! I do alot of walking...although now in the Pacific NW, the weather is miserable! I think exercise is vital to help with the aches. My biggest concern is that I had severe osterporosis before my cancer dx, and none of these treatments help that! I also have high cholesterol and take 40mg of lovastatin a day. And Omegas, and COq 10...!!

Patb · 01-03-2008, 04:01 PM

Barbara2
Barbara in answer to your question. I took Lipitor and Arimidex together
for a while but muscle aches and bone pain were terrible so my Dr. decided
to try different things and took me off Lipitor for 8 weeks and I got much
better. So that is why I ask the question of what to take instead of a
staten drug. I don't want to give Arimidex up at this point. Any suggestions. I am taking fish oil and will get my cholesterol checked in
6 weeks.
patb

dhealey · 01-04-2008, 05:21 AM

PatB, you can take fishoil, red yeast rice, or niacin sr 500 mg daily. All of these can be purchased over the counter and are found in the vitamin section. The doctor I work for prescibes theses when people have muscle aches from the statins.

Hopeful · 01-04-2008, 08:27 AM

Is anyone here familiar with The Breast International Group trial 1-07 - the Study of Letrozole Extension (SOLE) http://clinicaltrials.gov/ct2/show/N...s_ex=Y&rank=15, in which people who've been receiving endocrine therapy for 5 years are swtiched to either continuous OR intermittent (three months on, three months off) AI therapy?

Dr. Ian Smith of the Royal Marsden Hospital discusses these trials in the context of proper dosing for AI therapy in the latest edition of Breast Cancer Update http://www.breastcancerupdate.com/bc...df/BCU7_07.pdf

He states in relevant part:

"One question about the estrogen receptor becoming hypersensitized when it is reset. If the estrogen receptor is exposed to low doses of estrogen for a long time - as, for example, during prolonged aromatase inhibitor therapy - the receptor seems to be hypersensitive to minute amounts of estrogen.

Another issue is if prolonged exposure to low estrogen doses hypersensitizes the receptor, then maybe we should be administering these therapies intermittently. So the latest idea being tested in clincial trials is intermittent aromatase inhibitor therapy - for example, 3 months on, three months off."

I am wondering if the side effects of continuous therapy would be mitigated with such a regimen? With a substantial number of patients discontinuing AI therapy prematurely due to toxicity, it behooves the medical establishment to look at alternative dosing strategies, particularly when there is evidence that prolonged estrogen deprivation actually promotes a form of therapy resistance through hypersensitization. This may be a good way to maximize efficacy and reduce toxicity. What could be better?

Hopeful

TSund · 03-14-2008, 11:39 AM

Hopeful, interested in this post about estrogen hypersensitization. Has there been any followup that you know of to these studies?

Thanks
TRS

Hopeful · 03-14-2008, 12:00 PM

Terri,

I haven't come across any. The trial seems to be done only in Europe. I was hoping some of our European members may have additional information.

Hopeful

harrie · 03-15-2008, 12:18 AM

I have been on Arimidex for about 10 months now. Still have the trigger thumb. The rest of my joints feel fine during the day but at night when I get up I can feel it fairly significantly. As soon as I get up in the morning, my joints are fine.
I do yoga about 3 times a wk, some wt training and running a couple of times a week.
I had one treatment of acupunture and that seemed to open the channels in my thumb and it felt stronger.
My thumb pretty much stays straight most of the time, but in that position, I can still function fine.
During the day, so far (knock on wood), I have no joint pain or discomfort.
Harrie

jaybt · 03-16-2008, 06:13 AM

This is a timely discussion for me as I am seeing my oncologist tomorrow.
My body is so stiff that, after sitting for a while, I have to balance my weight with my arm to get up, and I have an unbelievable 24/7 left hand buzz. My feet/legs also have little feeling after sleep.
I have previously requested to switch to Femera but my onc refused, telling me that both AI's are the same. My reasoning tells me that if they are the same, what is the issue? I liked reading the San Antonio abstract. Thanks.
I think that anything is worth trying for quality of life and I don't understand why my request is not being considered.
I had not considered my ER rating and have now looked that up to see it at 50%. I am now asking my onc how that fits in with Femera and a lower dosage.
I too exercise as much as I can, take Glucosamine and Vitamin D.
And the bottom line is I am the one who is paying for the AI.
Wish me luck tomorrow.

AlaskaAngel · 03-16-2008, 09:09 AM

Jaybt, I am wishing you not only luck but a wallop of determination with this. Many patients are giving up these drugs entirely because of the side effects, and sometimes it takes being very persistent with the person who is prescribing them but not taking them. For some changing from one to another doesn't help, but for some it DOES help, and it is YOUR quality of life that is important.

AlaskaAngel

dhealey · 03-16-2008, 10:50 AM

Jaybt, I have tried arimidex, aromasin and lastly tamoxifen which caused stomach distress and a rash, I stopped it for a while and started it again, same thing stomach distress and rash. I had severe joint pain with the other two. Right now I am not taking anything. I have tried to make sure I eat a good diet, I walk 5-7 miles a day and work out with weights 3 times a week. I am not willing to try another AI. I have decided my quality of life is more important. The AI's also deplete your bone density. Mine went from the high end of normal to osteoporosis in 6 months time. Putting me at greater risk for a fracture. Not good. Also cholesterol shot way up. Since stopping these me cholesterol is back to normal and my bone density is improving. For the little help the AI's do I chose not to take them. Good luck with your decision.

TSund · 03-16-2008, 07:57 PM

What IS the % of help? I understand obviously that the higher ER you are the more likely to benefit, and the more riskier your cancer is the greater percentage benefit just as with chemo.

I'd also like to know the situation with post-12 month Herceptin and Tamoxifen. Is the theory that the Herceptin will continue to enable the Tamoxifen from acting in the negative ways we know it can on Her2 cancer without Herceptin?

Hopeful · 03-17-2008, 06:18 AM

Terri,

Your question about Tamoxifen after Herceptin is a salient one. I have read nothing on any tests or studies on this. I think the combination can be safe, but I have reservations about continuing Tamoxifen without doing something to inhibit Her2, as Tamoxifen has been shown to cause Her2- bc to change to Her2+ bc in some individuals. IMO, and just MO (and I am NOT a health professional), adding something like a baby asprin a day (COX2 inhibitor) to down regulate the Her2 after conclusion of Herceptin tx would be a wise precaution.

Hopeful

sarah · 05-20-2008, 07:44 AM

Hello,
Try taking the pill at night, less side effects.
good luck
sarah

tricia keegan · 05-20-2008, 02:32 PM

I've been taking arimidex since Sept '06 with miserable side effects. Joint/body aches neck pain and of course the trigger thumb!
I have thought about switching but as highly triple pos I'm just too nervous as so far I'm still doing okay and am terrified I'd recurr if I stop as arimidex so far seems to be working.
My Onc just tells me to try glucosamine/chondroitin which I did without relief. When I told her this she told me to double the dose and most of my pain was probably from lack of estrogen due to my ooph in '06 and was basically age related!!
Unless something bad happens healthwise I think I'll put up with the side effects which are better than the alternative obviously.
I do swim and walk every day which does help for a while but I find once you stop and sit it's almost impossible to stand again without creaking!!

sassy · 05-20-2008, 09:42 PM

I had all the SE's of Arimidex, especially joint problems. My GP put me on Lasix for BP and fluid, and my joint problems disappeared! Don't know anyone else who has tried this at this point, but it worked for me.

I would be interested to know if anyone else has had a positive response to Lasix or other fluid control medication in reference to joint problems while on AI.

harrie · 05-20-2008, 11:59 PM

I was on Arimidex for almost a yr. My only real problem was one trigger thumb. Switched off it when I thought it was attacking my hip, BUT that turned out to be sciatica nerve problem. But I switched to Femara anyways. Now my thumb is almost normal. Accupunture helped that a LOT. During the night I can feel some stiffness in the joints of my other hand, but shortly after I get up it is gone.

dlaxague · 05-21-2008, 06:20 AM

I know women who have had good results with these supplements, in alleviating or at least lessening the "musculoskeletal" issues of arimidex. The latest thing is to have your vitamin D levels tested, and then to supplement with D3 (and get some sunlight).

Debbie Laxague

Hopeful · 05-21-2008, 06:36 AM

Here is some interesting new information concerning women who suffer from arthralgia while on AI's :

http://www.abstract.asco.org/AbstView_55_35282.html

The conclusion was that an autoimmune process may be responsible for the arthralgias in a proportion of the sufferers.

harrie · 06-04-2009, 12:05 AM

I want to bump this back up.
I have been on an AI for 2 yrs now. I started with Arimidex and experienced "trigger" thumbs. Acupuncture cleared it up. I switched to Femara and have been on that for over a yr. I have no joint pain and no trigger thumbs. The only side effect I feel is mild stiffening of my fingers at night when I sleep. As soon as I get up in the AM, the fingers are back to normal.
Best of luck to all of you that are experiencing joint pain.