My Tamoxifen Confession

My 2 cents for what its worth.  My chemo guy let me go off tamoxifen for 2 months to give my body a break.  At first I was delighted, but then I started thinking what if the SE start up like the first time, but I went back on it a couple weeks ago, and nothing. No hot flashes, no leg cramps, nothing.  I hate that I have to put some weird drug in my body for another 2.5 years, but I suppose thinking about the alternative is worse.  I just keep looking at the statistics and can't get past the overwhelming evidence that taking tamoxifen for the full 5 years will cut my risk by a lot.  At first I was like, mine was small, I had genetic testing done, negative on it, so am I really at risk of getting it again?  Maybe not, but I guess for me it is still scary enough to keep me on the ol' bottle of tamoxifen.  I do feel however, that it is still a very personal decision and a person needs to balance their quality of life to the possible benefits of any treatment. 

I have been on Tamox since Nov 09. The side effects for me have been the hotflashes. Try Gabepentin. My gyno prescribed it. It helps alot with this side effect. My biggest things is the weight gain. I am heavy and am having a hard time trying to get this stuff. Any suggestions? Sex is still great for me, no dryness etc. I take it twice a day at 10 mg. That is the way is was prescribed. The aches have gotten better since the weather warmed up.

That study makes a lot of sense, especially the part about women younger than 40 being most likely to discontinue using the Tamoxifen.  Most of the more bothersome side effects are things that women deal with anyway while going through menopause, so they are less likely to cause someone in the age range of menopause to stop taking Tamoxifen. 

One other issue with the study is that it doesn't attempt in any way to ascertain the reason these women became "non-compliant".  Women who develop serious side effects, who are stage IV at diagnosis and who experience progression, and some of those who become post menopausal during the course of those 4.5 years would all be switched to a different treatment by their doctors.  That isn't "non-compliance", that is a change in treatment plan. 

PatMom -- I don't know how they accounted for women who left the Kaiser system, but Kaiser is a self-contained HMO -- they pay nothing toward any out-of-Kaiser care (except for a few areas where they don't provide specialized care) and they have their own hospitals and pharmacies, etc. So using the population of Kaiser patients pretty much guarantees they would be getting their meds through the Kaiser system.

I think the longer prescription refill interval means that if you have a 30 days supply of tamoxifen, and you fill it in 45 days, you aren't taking your meds, not that you have switched pharmacies.  Maybe I misunderstand your point though.

Kaiser's meds are free to Kaiser members, and it's all electronic.  I don't think Kaiser patients use other pharmacies - I could be wrong, but I've never met one who does.  My boss and BIL are Kaiser members and they have to get their meds from Kaiser pharmacies. 

I also don't understand the thinking that the side effects are normal menopausal symptoms.  The ones I'm experiencing aren't.  I was perimenopausal when I was dx'd with cancer. I had some hot flashes but regular periods.  Within two weeks of being on tamoxifen, I began having some extreme bone pain that has not let up.  I know hundreds of menopausal women, and none of them complain about the kind of pain I'm experiencing.  I have constant hot flashes, which is probably normal menopausal and my skin is getting crepey - also normal. But the bone and joint pain, the constant all-night cramps - nobody I know in "normal" menopause has it.

I think there is a disconnect between what the medical community believes the side effects of tamoxifen are, and what some of us patients are experiencing. 

I went and read the whole study at pubmed. It is fascinating. 

The "longer prescription interval" refers to how often you have to refill -- every 30 days or 60 or 90. The study randomized women into these 3 groups.

I, too, do not know anyone who has Kaiser insurance who fills prescriptions elsewhere, although it would be possible. I think it is a safe assumption, however, that the number of prescriptions filled elsewhere would be very small. How much the medication costs can vary with your type of coverage.  During the study the women all had similar copays in an effort to control for insurance status and cost of treatment.

The researchers also do point to treatment toxicity as a possible reason for noncompliance with treatment (duh) but didn't address that issue in this study. 

I've been taking it since late april 2009 and talk about advanced aging - joints, bones, weight.  But it is worth a discussion with the onclogist because maybe you could do another one.  There are no guarantees.  That is the most difficult pill to swallow.  Not the tamoxifen.  The hardest part of this cancer thing for me is to not use it it to beat myself up with - I'm having post traumatic stress after getting through treatment, trying to resume life, not being connected the way I was before, seeing everything differently and not really the old me or a new me - more like a big fat zero. 

jkfran------I took tamoxifen for 5 years and now I have been taking evista for about a year and a half (I am high risk due to LCIS and family history of ILC); fortunately I tolerate both meds pretty well overall. Tamox is the more effective drug but it does have more SEs, but the serious SEs (blood clots and endometrial cancer) are less than 1% and generally found in people who are sedentary or who smoke.

anne

Hey there...I thought I'd stop by here and I'm sorry because I'm going to play the Devil's Advocate.  For all of those who have considered stopping or have stopped their tamoxifen...please, please reconsider.  I too suffered from the side effects all of you have mentioned.  After almost 5 yrs I finally figured I had gotten all the benefits from the drug and had the mistaken impression that after 5yrs that was it...I was done.  So, I opted to stop all together.  Well, 6 mos later I was diagnosed with extensive bone mets...pretty much everywhere in my body.  Since that time I have suffered from bone pain that you cannot imagine, flu like symptoms from my treatments, depression, regret, nausea, lack of appetite, complications from anemia and extreme fatigue....all of these on top of those nasty menopausal symptoms (hot flashes, lack of libido, insominia, nasty hot flashes, etc, etc).  I would do anything to go back and deal with the minor side effects I initially had on just the tamoxifen.   I'm not trying to scare anybody....just to share my story....whether stopping the tamoxifen had anything to do with it or not...we will never know.  

You must follow your heart but please think through your decision carefully.  Good luck and best wishes to all.  

Hugs,

Cat

Ladies, for all of you who are on the fence about whether or not to stop Tamoxifen, I would like to share something.  I am on my 6th year of Arimidex and already being post-menopausal and having osteoarthritis and back and joint pains, I was terrified of what that drug was going to do to my body. However, I could not understand why being on it did not increase my pain problems until I read a couple of posts here referring to Gapapentin (Neurontin).  Years ago I was given Gapapentin 3 times a day (just 100 mg. each) for panic attacks I started having after a brain operation.  My bp which I could not get under control suddenly got controled and it helped my panic attacks and a lot of the pain in my body.  My doctor told me it was a "miracle" drug and like aspirin, they have no idea how or why it works for so many problems.  Diabetics I know take it for their severe neuropathy pain etc. etc.

What I am getting to is, if you really want to try to continue with the Tamoxifen or Arimidex but don't want to cope with the pain SEs, why don't you talk to your physician about taking Gabapentin with it and see if it makes the other pill more bearable for you to cope with.  I would try it for a few months and if nothing changes and you are still miserable, you can always decide to quit the Tam then. It's just another alternative I am suggesting.  There has to be a reason my Arimidex has been bearable for me and I think it can only be the Gabapentin I take daily.  The great thing about Gab is that it is a GENERIC!   

Tamoxifen has been shown in studies to cut the chance of recurrence in half. It's no cure-all. Even women who take tamoxifen sometimes have recurrences or worse...I believe it's more to do with your personal "environment" (i.e. what is going on in your cells) and that some cancers are more aggresive than others.Tamoxifen can help...but as others have said, even with tamoxifen, they have had recurrences.

Susan Love says: ... the relationship between cancer cells and the cells and tissue that surround them. In the past, we blamed everything on the cancer cell, as if it were a criminal that functioned autonomously. But we now know that the neighborhood (stroma) that the cancer cells live in also plays a critical role in determining whether a cancer or even a precancer like ductal carcinoma in situ (DCIS) will remain dormant or become invasive. Think of it this way: the stroma is like soil; cancer is a seed. In soil that support the seed (cancer cells), the seed (cancer cells) will flourish. In soil that is inhospitable, the seed (cancer cells) will never grow. Estrogen and progesterone are two of the major influences on the stroma. As soon as a woman starts taking HRT, her breasts will appear denser on a mammogram. And as we know from the WHI, breast cancer increases as well. This is because of the impact the hormones have on the stroma, making it more inviting and supportive to cancer cells. In essence, the stroma is providing a nurturing environment for the cells to function criminally. Likewise, as soon as a woman starts to take tamoxifen to reduce her breast cancer risk, her breasts appear less dense on a mammogram. That's because tamoxifen is keeping estrogen away from the stroma. And, in this case, the stroma is providing an environment that is, in essence, rehabilitating those criminal cancer cells.

http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=1&L3=4&L4=0&PID=&sid=130&cid=1200 

That trial included women who used Tamoxifen for significantly less than 5 years.

10-year outcome data were reported for 29,892 women in 40 randomized trials of adjuvant tamoxifen using doses of 20-40 mg/day for 1-5+ years (median 2 years).

The small overall survival advantage was based on a group of women who were not all ER+. 

Fifty percent of the tumors were estrogen receptor (ER) positive (>/= to 10 fmol/mg), 18% were ER poor (< 10 fmol/mg), and 32% were ER unknown.

Even within that group, the recurrence free advantage among node positive women was 8.8%, and among node negative women, it was 5%.

As has been stated before, the 40% to 50% is a relative risk advantage, so the higher your personal risk, the greater your potential benefit. 

We each have to balance the risk/benefit ratio that applies to us in our unique personal situation, and make the treatment choices that are the best for us.

Relative risk doesn't mean your personal risk, but it applies to your personal risk. 

Someone who has DCIS, and has a small personal risk of distant recurrence, would get a much smaller benefit from taking Tamoxifen than someone who has numerous positive nodes and a much higher personal risk to begin with. 

50% of 5% is much smaller than 50% of 30%.  Women at higher risk stand to gain a higher benefit.

We each have to decide for ourselves (with Tamoxifen, on a daily basis) whether the risks associated with any treatment are offset by the potential benefits based on our own diagnosis, prognosis, and health history.

I just came off of tamoxifen a couple of months ago and am having the opposite problem:  more joint pain and stiffness rather than less.  Is this possible?