Tuesday, June 29, 2010

I'm Had Enough: Half of BC Survivors Stop Tamoxifen Early

This is a headline that quadruples my empathy factor:  "Half of breast cancer patients stop taking hormone drugs."
      I've been there.  I did that.
      And damn, I'm here to tell you about it.
      But first, here's what was reported, from USA Today by Liz Szabo Half of breast cancer patients stop taking hormone drugs and from the American Society of Clinical Oncology Fewer than half of breast cancer survivors adhere....  from a study of 8800 women with early-stage breast cancer.  Researchers found that only 49 percent of the women completed the recommended regimen for tamoxifen, aromatase inhibitors or both.
      It boggles my mind.  Less than 50 percent of women took a proven treatment that cuts the risk of recurrence in half.
     The findings resulted from an analysis of automated pharmacy records of women with hormone sensitive breast cancer, Stages I - III.  What's especially troubling is the group with the lowest adherence rate was in the group of women under 40.
     We need to have some serious conversation here.
     One of the physicians quoted in the article pinpointed to me the huge disconnect between pharma, epidemiology, oncologists and survivors.
     "We were surprised to see that so many young women stopped treatment early..." said Dawn Hershman, MD, associate professor of medicine and epidemiology at Columbia University Medical Center, who led the study.  "Perhaps we need to do a better job of making patients aware that to get the full benefit of treatment they need to take their medications on time and for the full duration."
      Yes.  That's a problem.  Breast cancer treatment (and other cancers, of course, the breasts don't own everything) is like running consecutive marathons.  In my case marathon one:  FAC.  Marathon two: a string of surgeries.  Marathon three:  Taxotere.  Marathon four:  radiation.  Marathon five: tamoxifen.  The first four marathons are time limited.  You're going to recover from a surgery.  The effects of chemo wane until you go in for the next dose.  Then you repeat the cycles until all the doses have been received.  Radiation is x-number of days.
      But tamoxifen lasts for five years and its effects, especially on younger, premenopausal women can be and are often severe.  For the clinician side effects are lists of words on paper.  For survivors side effects mean that the thinking disarray, exploding hot flashes, joint pain and swelling make living and working very, very difficult.
      I remember sitting in my office many days wondering if my mind would ever process information efficiently again or what life would be like without hot flashes that started somewhere near my belly button and burned all the way up through my abdomen and thorax before exiting my head until it felt like every artery was about to explode.  Only a caricature image of my head with steam coming out my ears helped me cut through the discomfort.
      So after three years, with the agreement of my oncologist,  I stopped taking Tamoxifen.  He told me that the first three years following diagnosis are critical.  I made it through those three years.  I had already started intense exercise to combat symptoms of menopause and I continue to this day.  Some hot flashes still manage to squeak through.  I'm still hot most of the time.  But my thinking did not completely clear until I stopped Tamoxifen. I was so, so glad to have me back.
       The point of intervention:  let's find better ways to help young women cope other than lip service.  Let's stop denying that Tamoxifen is such a difficult drug to take, and let's get some alternatives working.  If lumpectomy and radiation are effective cures, and a woman's "recurrence rate" is say, 10%, can she take survivorship head on and manage that risk with lifestyle interventions and diet?  Doesn't that "prescription" reduce recurrence rate as well?  What if the woman is 39?  And her neighbor 59?
        I'm left with as many questions as ever:  who is following the women who did not take tamoxifen?  Will we ever know how they fared?  Do we want to know?  My cancer was such that I left no stone unturned.  But this report tells us that the case is otherwise for many, many women.
       How do you respond to a friend who skips this treatment?  

36 comments:

Debbie said...

Great post Jody. I also had read this headline somewhere. I only took Tamoxifen for just over a year before I had my recurrence and was put into menopause and switched to the aromatase inhibitor Femara. I feel like I am one of the lucky ones who so far has not had bad side effects with this drug. I have been on it for about 15 months and I am beginning to get some joint and bone pain but nothing I can't deal with.

I am not discounting the fact that many women do have strong, debilitating negative side effects with these drugs but I do want to say one thing. I think women need to be aware of the possible effects but try not to be "looking" for them or expecting them. Not everyone has them and maybe you wont. Try to avoid the "self-fulfilling prophecy" that this drug is going to make your life miserable. Carry on with life as usual, stay active, eat well and perhaps the medication will fit into your life better than you expected, or at least be tolerable to the point where you can continue to take it for the prescribed amount of time.

Here's hoping that as advances in cancer treatment happen they will find new drugs that have less serious side effects.
Debbie

Eve Harris said...

The medical profession has squandered some of my trust by promoting Tamoxifen and aromatase inhibitors (AIs)while failing to understand a few crucial things. What's the mechanism of action? Not sure. What long term effects might result from the estrogen deprivation of AIs? Unknown. And the most useful information of all for patients: how can we differentiate who will receive the most benefit? Or suffer the most severe side effects? To my dismay there is very little study aimed at answering the last question.

Jody said...

Eve,
An excellent question. I also wondered if the "overtreatment" (as I know is at least the case in this area) of early BC's might have made Tamoxifen unnecessary in the first place. Originally tamoxifen was used for metastatic BC (or so I thought) but this info: http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
doesn't confirm this)

Like you, I have more questions than answers.

Thanks for writing -- please stop by again,
Jody

Fillippelli the Eater said...

The story will not be exhaustive, but trying to answer one or two of the questions you raise in the post in a short article (aka, "research highlight") scheduled for the July 13 issue of the NCI Cancer Bulletin.

Carmen Philips

Jody said...

I'll look forward to the article! Thanks for letting me know.
Jody

BreastCancerSisterhood.com said...

Jody, like you, I read that study with interest. Six weeks ago, I stopped my five-year course of Arimidex, but did so reluctantly. I, too, have wondered about all of the unanswered questions surrounding aromatase inhibitors: the efficacy after five years, and what it does to us. Even so, it scared me to think of being without it to ride herd on any estrogen positive breast cancer cells that weren't already cut out or poisoned.

I can tell you, that after only three days of being off the Arimidex, I began to feel better. I work out regularly, which helped with the joint pains that made me feel 105 when I got up out of a chair, but now, six weeks out, I feel fabulous! More like my precancerous self.

As I move forward, one of my biggest concerns--I have many--is it would be so easy to let down my preventing recurrence guard about diet, exercise, limiting alcohol & the mind-body connection.

This week I had my yearly physical w/my regular doctor who said he couldn't be more pleased w/my progress. When I told him about my "routines," he said, "Now remember. We've talked about this before. There's no real proof diet has any affect on recurrence." I don't agree, so I just smiled and nodded. FYI, my doctor was the 3rd top doctor after the Surgeon General & President of the AMA. He was President of the Family Physicians of America Assoc.

I hope new doctors, fresh out of med school, receive better training about nutrition. It's made me wonder if I should look for a new doctor.

Brenda

Annemieke said...

Dear Jody,
Blown away by your blog. Like most peple who have been lucky enough not to have cancer I didn´t realise this. I have read and learned a lot since my family `got hit`by cancer this many times and even more after becoming a Local Livestrong Leader. I hear a lot at the oncology ward at the hospital but get even more questions and your blogs always help me to find answers or places where to look for them. I refer people to your blog or translate it for them if they don´t speak English and the always help. Up to now I never understood why women would stop taking this medication, but you made that very clear to me, as well as showing me the struggle women go through before reaching this descision. Thanks for teaching me again. big hug, Annemieke

The Carcinista said...

Jody:

As a woman who has just entered her fourth year of fighting, and eighteenth month of fighting-without-a-remission, ovarian cancer, I am amazed that there is any treatment stone that a breast cancer patient would leave unturned. I am hoping against the odds of squeaking out a fifth year and seeing my sons turn nine and seven, and looking for miracles. I am fortunate to live in a city full of cutting-edge cancer researchers and facilities, and have just started a clinical trial that I hope will work to stop the steady march of my lung metastases.

I can imagine that, like other treatments for other diseases, it's hard to soldier on in the face of disabling and uncomfortable side effects without immediately apparent benefits. Like losing weight to counteract undiagnosed heart disease, or taking bipolar meds when you're not down, the cure can be worse than the disease. Maybe if doctors are unable to find the words to help breast cancer survivors through the thorns of these horrible side effects, they could send them to speak with cancer patients who don't have so many arrows in their quivers.

To your continued health and advocacy,

The Carcinista

Jody said...

Carcinista,

First, thank you for stopping by and writing. I have created this forum for all women with cancer and your perspective is essential. You might deeply appreciate the perspective of Debbie, who commented here, and Gaelen, who I wrote about earlier this year. She lives with metastatic colon cancer,appointment to appointment, scan to scan.

In fact, this post has created so many different perspectives and comments (many to me privately) that in a month or so another one will be in order. I had no desire to celebrate the fact that I did not complete the treatment; a fact of some embarrassment to me. On the contrary, I was alarmed to see the adherence rate so low.

And to see your experience, frustration and incredible fighting spirit makes me wish there were more I could do; that you a number of treatments to chose from.

I have followed the link to your blog and will visit you there as well. I hope you stop by again.

All good things,
Jody

Jody said...

Carcinista,

First, thank you for stopping by and writing. I have created this forum for all women with cancer and your perspective is essential. You might appreciate the perspective of Debbie, who commented here on this post, and Gaelen, who I wrote about earlier this year. She lives with metastatic colon cancer,appointment to appointment, scan to scan. I respect and love each and every one of you.

In fact, this post has created so many different perspectives and comments (many to me privately) that in a month or so another one will be in order. I had no desire to celebrate the fact that I did not complete the treatment; a fact of some embarrassment to me. On the contrary, I was alarmed to see that the low adherence rate (long rumored but not tested) turned out worse than any medical expert anticipated.


And to see your experience, frustration and incredible fighting spirit makes me wish there were more I could do; that you had the OPTION as I'd expect it looks to you, of treatments to choose from. Breast cancer is a conundrum in that many cases will be found to time to have been overtreated; some, untreated. I doubt if there are any cases of ovarian cancer tat are overtreated, per se. In an earlier column I'd written that we should feel fortunate that the cancer occurred in our breasts, which are exterior, and in that, dispensable.

I have followed the link to your blog and will visit you there as well. I hope you stop by again.

All good things,
Jody

Colleen said...
This comment has been removed by the author.
Colleen said...

At the risk of sounding like a broken record, the results of this study point to another lack of plain language information and clear communication in the patient-doctor relationship. People should know why they are taking a medication in a language they understand. And they need to know that they can talk with their doctor if they face challenges that make it difficult for them to continue with treatment.

"Non-adherence" and "non-compliance" are horrible sounding words that imply misbehaviour. Deciding to stop treatment is not a renegade act. It is a long process that is usually fraught with weighing the pros and cons, and then re-assessing them again and again. Whatever a patient decides regarding their treatment, they need to be supported by those around them.

I believe peer support plays a significant role in improving adherence. Dealing with side effects or changes to lifestyle that some treatments cause can be made a little easier with support from others who have been there or are experiencing similar challenges. Communities, such as the one you have built here, do help fight cancer. Thank you.

Alli said...

Last year during a stint in the hospital after my white count dropped due to chemo Taxotere to be exact. My oncologist came sat on my bed and began discussing my new regime of taking Tamoxifen for the next five years. . Before deciding I wanted to find out as much as I could as far as side effects, what to expect and just to understand what I would be taking for several years. The following day I had a visit from a gynacologist. (sp) He suggested to me since I would be taking Tamoxifen they would remove my ovaries to inhibit estrogen. I told him right there and then I hadn't made any decisions I required more info. What I did learn was if you take this drug you have a higher rate of getting endometrial cancer. OK so I just had my left breast removed, now they want my ovaries and I could be in a high risk category being diagnosed with endometrial cancer. My ONC came to visit me the next day I asked him specifically if what I learned was true. I expect honesty and yes he did confirm all of these occurances were possible. Thanks but no thanks, Find me something else I am not going down that road. When I questioned my Dr asked him why women were not being told he replied that less women would take the drug if they knew about side effects. Maybe women shouldn't be so intimidated question their Drs. You have to be your own advocate!Period...

I have been on Armidex since January 2010, just as bad bone pain in my ankles are outrageous. I've gained weight I now question myself if taking these drugs are worth it when you feel so miserable. Is it the quantity of life or quality.
I am in the process of looking into more natural methods. I believe through proper diet eating the foods that will benefit and that play a part in achieving the same kinds of goals as taking medication we may be better off. I can honestly say that I am tired of being in constant pain. there has to be something better. I can't gurantee I will stay on Arimidex. Maybe to some it's foolish to me I'm trying to help myself give myself some quality while I'm at it.

Alli........

Jody said...

Wow, Alli, you've been through so much and I'm sorry to hear that the Arimidex is causing you so much discomfort. There are definitely factors to weigh out as far as I am concerned, especially based on your cancer, its biomarkers and aggressiveness, the staging, and your lifestyle.

But first I can't imagine finding out about these medications when you were already in the hospital; then being told that you should undergo ovary removal in addition to tamoxifen? The entire way this happened seems unacceptable to me.

I'm so glad you were able to keep your wits and told them to slow the bus down at the next stop. Taking time to weigh recommendations, find the facts and come to a decision you are comfortable with is essential.

I hops you'll stop by again.

Hugs, Jody

Jody said...

EDITORS NOTE:

Another story on Tamoxifen/Aromatase inhibitors came out from the NCI yesterday. I'll update tomorrow.

ALSO, you need to know at the time I took tamoxifen my uterus had already been removed. I did still have my ovaries; but did not risk uterine cancer because it was gone.
jms

psanders said...

Thank God somebody is talking about this. I had a really hard time with Tamoxifen -- nausea and bloating every day, and increasing depression about having to be sick for four more years.

My oncologist seemed to be in denial. Even after I stopped taking Tamoxifen for a couple of weeks and regained both my energy and my wellbeing, the oncologist insisted that it was not due to the Tamoxifen but rather was "in my head" (caused by my emotions). I even began to think he was right, because I didn't see anything in the materials I was reading (blogs, webmd, etc.)

I got to the point where I was convinced that I had to be sick for four years or I was going to get cancer again (and in the back of my mind that meant I was choosing to be sick or to die).

I got to work to find out whatever I could about dealing with the side effects of Tamoxifen. I live in Seattle, a city with nationally renowned cancer treatment centers and hospitals. I went to the "survivorship" program (for cancer survivors who have completed their chemo, radiation, etc.) at one such center, and I was profoundly disappointed. Even though the program was supposed to be for survivorship, the focus was on women undergoing early treatments (chemo, radiation, etc.). There didn't appear to be any recognition of real issues with follow up treatments.

It turns out that I am post-menapausal, so my oncologist first prescribed femara (made me really lightheaded) and then aromasin (seems to work for me). I am really grateful that there is a medication that helps reduce my chance of recurrence that I can live with.

At the same time, I think the discussion of living with tamoxifen or aromatase inhibitors is really important. I'm hoping that oncologists will begin to recognize that these medications are not without problems and maybe that will lead to more attention on managing the side effects. Until that happens, I think the number of women who stop short of full treatment will remain high.

Ann said...

I have posted about tamoxifen on my blog several times. (butdoctorihatepink.blogspot.com.

I am 52, and have suffered severe side effects, to the point where I was giving up. My main problem is bone pain. I can live with the hot flashes and I don't have the brain situation but every molecule of my body aches from head to toe - all day long. My doctor prescribed pain medicine so at least I have something to help. But, I continually read that the side effects are likened to menopausal symptoms and that's why it's harder on the young. I know many post-menopausal women who don't have chronic bone pain, joint pain, up to 18 hot flashes a day, and the other SEs of tamox. I believe there is a disconnect between what doctors believe the side effects to be and what they actually are. It's incumbant on us patients to explain it to them. We are not whiners - this is a very, very difficult drug. The odds of me staying on it for five years are pretty slim. I'm taking it day to day right now.

Jody said...

You hit that nail on the head, Ann. We are not whiners. I didn't go through a ka-billion surgeries, chemo and radiation to suddenly become a whiner while on taxoxifen.

I think the affirmation many women have received here for the difficulties they've experienced while taking these meds (whether tamoxifen or another aromatase inhibitor) speaks volumes. We need to have better understanding and information up front about dealing with these side effects -- I'll stop over to visit your blog.

Gnger said...

Thanks for directing me to this blog, Jody. I am encouraged by reading survivors' experiences posted here.

My last chemo was late December 2009, last radiation mid March 2010. My energy level is just now picking up a bit but I am having a hard time returning to my previous high level of fitness. In fact, I'm still having periodically severe joint and bone pain and am at my lowest fitness level ever. Lack of fitness along with the hot flashes, lopsided body and struggle to regain mental faculties are really depressing. However, I do feel like the cognitive issues have begun to improve...whew! I was really sweating it at work (literally, haha), and still feel like my job is not secure.

I believe tamoxifen will only compound these issues for me so while struggling to regain some quality of life at the moment, I am going to decline this treatment.

I believe reducing my body fat is the single most effective thing I can do to reduce my risk of breast cancer recurring. This means I have about 20 lbs (15 was a post chemo gift) to lose to get to 20-22% body fat. I have a healthy diet and am eating more fresh fruits and vegetables weekly, and am striving to reduce sugars and processed foods to absolute minimal levels.

Ginger

jasmindsouza said...

Women treated with aromatase inhibitors often knowledge joint pain and musculoskeletal aching: severe enough, in a few cases, to make them stop the treatment joint pain.

MyWifeAndFriend said...

My 53-year-old wife will complete her fourth year of Tamoxifen this month. I doubt she will start her fifth. She, too, is hardly a whiner, who just doesn't like some uncomfortable side effects.

She is in constant pain, never sleeps more than a couple of hours at a time, fights depression, muscle aches, nausea, stomach pain and more. Her Kaiser onco PA also sniffed at her complaints and offered to put her on anti-depressants.

She said it best when she told me she told her GP today, "I want quality, not quantity" when it comes to life. We have both known women who had more side effects from cold pills than they did their tamoxifen. We've known others who just couldn't bear it.

I've fought with her for all these four years to keep on taking this horrible drug because I can't stand the thought of taking even a small chance in losing her, but I understand now how brave she really is to want to risk a recurrence in order to live a real life. It's made me realize that waking up every day is not life.

As to fiercely chasing away cancer with diet and exercise, my wife was and is 104 pounds, life-long exerciser who never smoked or drank much or ate much meat and lived on berries and yoga as a preferred lifestyle. Living at the bottom of the risk pool isn't risk free.

This is no easy thing, but like so many of you pointed out, neither was the surgery, the radiation, the neuropathy and the terror. It isn't as if she just can't be bothered with having to swallow a pill every day to keep from getting breast cancer again. She just can't take it any more.

BVinAZ said...

Hello and thank you for sharing your stories and concerns about tamoxifen. I am a woman in my early 40s and finished chemo for + + - BC this past December. I was put on tamoxifen so had to switch the antidepressant I had been taking for more than 10 years which was keeping me pretty stable, if not extatic, due to a drug interaction. Neither my oncologist nor my shrink mentioned possible side effects of the tamoxifen or the risks of changing antidepressants.
I almost immediately became extremely suicidally depressed. It has been 7 months now, I've tried 4 different antidepressants and have recently stopped taking the tamoxifen against my docs recommendations. Neither my oncologist nor my shrink gave me any kind of heads-up about how giving tamoxifen to an already clinically depressed person could be dangerous. I have physical, mental and emotional symptoms that are not resolving, but getting worse.
I have two teenage boys and a husband who have watched mom go through the trauma of finding and treating breast cancer. Now they get to live with a crazy lady who instead of raising kids is providing them with worries and issues from which they will never recover.
At the moment my docs are telling me that either I stay on the tamoxifen (and continue to live like a crazy woman who has to walk the streets in the middle of the night just so that I can cry out loud after trying to keep my shit together through the day so my kids aren't afraid every moment that I'm going to stick a knife in my throat). Or I can put all of us out of our misery by ending my life now - easy enough to do with the growing pharmacy in my bathroom, or I can stop taking the tamoxifen and PRAY that my mental state improves while I wait for a recurrence of cancer, and just let that take me out.
I was not given any information on side effects beyond hot flashes. I see my docs regularly and any symptoms I bring up are downplayed or skipped over. It has been through my own extensive research that I've learned that tamoxifen can cause or worsen depression. Apparently I have a very fragile brain chemistry and now I am wondering if I will ever be able to return to just a woman who has some moderate success treating her mental illness, or if I am seriously going to end up livng out of a shopping cart on the streets after my family leaves me for their own good? I would rather have the cancer return and die from that than have my kids live with the shame of having a mother who committed suicide! Living as a crazy person is worse than living with cancer. I just hope that I don't end up living with both. Obviously at this point I have very little hope that there will be any true healing for me - and unfortunately for my family.
I stopped taking the tamoxifen 2 weeks ago and was told that it could make me feel much better. My symptoms are not going away and feel like they are getting worse!
I am trying EVERYTHING to get through this! Stress management , vigorous exercise , therapy, groups, art, writing, religion - what else?? There is no healing, and I am terrified - not just for me, but for my family!

I am sharing this because people who have a history of mental illness really need to research and DRILL doctors for all of the possible implications of messing with an already fragile brain chemistry! It sounds like most women tolerate these meds better than I do. Just make sure that you do your own homework and don't count on the docs to lay everything out on the table.
Good luck & I hope you all fair better than I have.

Sunnygirl said...

Im 47 was fit healthy ran long distances and excercised before being diagnosed. I went through 2 x lumpectomies, 1 x mastectomy and some pretty horendous chemo and was still myself. However, this has all changed since i started taking tamoxifen 8 months ago. I had no energy and have put on so much weight. I couldnt think straight, got confused, nauseaus, ached, cry and was very emotional, hot flushes, hot flushes, hot flushes and sleep deprivation so have come off tamoxifen after consultation with my BC nurse. I do agree with an earlier post that you have to have some quality of life - what is the point in prolonging a life if there is no quality attached to it. My thought process is coming back, I have more energy want to get up and do activities and spend time with my kids rather than leave them to god and providence whilst I lay in bed or sofa. I am looking to start my excercise regime again as I now have enough energy and getting up every day to go to work isnt daunting. I am getting back to being me and if that means that I am higher risk for BC returning then thats hopefully something that I will be able to live with.

Talker brooks said...

I cant believe that i have been cured of this deadly Ovarian cancer that almost took my life. This herbal man called doctor lamp is a miracle worker with his herbs. I heard about him from a family relative who talked greatly about him. I decide to take a bold step to contact him. He briefed me about his herbal medicine called some name. I took his email and mobile number from her and then i got to know he is located in india. his email is herbalcuremedicine@live.com, He prepared this herbs for me on a certain fee and gave me so much assurance and everything that if i take it i must be cured. I was almost scared of all of it, but with courage that i have suffered so much pain, I proceed and i got the medicine and a soap attached to it. This is about 10days. He gave me an assurance of 7days that if i follow his instructions i will be cured. I did follow his instructions and 2days ago been it the 8day, i went for scan and checkup because i was feeling lite like something has left me. Then the doctor found out that i was totally and thoroughly cured from this Ovarian cancer i have been treating for 6months now but no progress is what a herbal doctor just did in 7days. This is wonderful. His email again is herbalcuremedicine@live.com. I can refer anyone with illness to him now, I am fully sure of his wonderful herbal medicine because it indeed cured me and free me from pain and its complications.

AR mirza said...

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Aicar , CJC 1295 with DAC

petar son said...

Im grateful for the post.Really looking forward to read more. Cool.

tamoxifen

Tara T. said...

The only respite I have received is by reading stories online. I feel so alone. I have attended breast cancer support groups but, I feel until you have taken that pill you cannot empathize.
I was diagnosed at 31, stage I, chemo, double mx, which wasn't necessary. My dr said you will be cured. After chemo this pill was given. My onc mentioned uterine cancer but no other SE. In her defense I don't remember much, maybe she did. I'm on my 4th year and everyday I'm hoping it's my last day. The hardest SE is the foggy brain, processing information, and memory. I used to feel sharp. The hot flashes are gone. I deal with daily fatigue, naps are a must, especially after the gym, aching joints, back pain, low libido . If I push through my day without a nap my evening becomes difficult.

Luckily I have been a housewife, against my wishes, diagnosed while in RN school. It's a constant battle about going back to work, school is not an option. How will I function being so tired. So recently I took a break from tamoxifen against my new onc wishes, (he is a drug pusher) doesn't listen to a word I'm saying. He makes me feel it's in my head. Military young doctors.
So I took a break, got a job and was able to juggle, husband, kid, and learn a new job. After 3 months Of feeling great, going none stop. I decided to resume tam. That same week I quit the job (Tears) Just too tired mentally and physically, plus the job was high stress which is the # one cause of recurrence. I would pick up my daughter in tears knowing that I had to go straight to bed.

So now I'm back home. I am taking tam until I find another job. I am getting depressed, I feel empty. The side effects have intensified after my break off tamoxifen,
Home all day alone. I hate it. Effexor doesn't work for me.
The onc gave me this drug called modafinil which is for narcolepsy patients, it worked initially, but I have to take melatonin every night to fall asleep. I don't feel it working anymore, i'm back to being even more tired but I can't sleep at night. He said if this didn't work he would understand I had to quit tamoxifen that it was my life.

I put the tamoxifen it in the trash, I told my husband I was done. He did not agree, he felt that I should push through, that two years is nothing compared to 30 years of more life. I told him that I have been strong through chemo, surgeries, but now I am getting depressed, no one understands. I am tired of saying I'm tired. I'm making an appointment with my onc psychologist on Monday.
Is a 10% increase in survival really worth being so miserable for two more years?

Gayle Davis said...

Was told today by my oncologist that I can stop taking tamoxifen after 5 years! No fanfare. No follow up visit. Just stop. Okay with me! Never liked taking chemicals after what I had already been though with the lumpectomy and the radiation. But I was afraid NOT to take it. Anyway, now that I read of the side effects I might have had I am looking forward to loosing some weight, lessened joint pain and getting rid of the edema I seemed to have started having the last couple of years. Never knew there might have been side effects. The info with the prescription told me nothing. Good luck to us!

MargieB said...

I've been on tamoxifen for 10 months. I hate it. Hot flashes, insomnia, muscle issues, weight gain, loss of libido, dryness everywhere. It's not worth it. When I talked to the MD, he offered an antidepressant. Not gonna do it. I'm gonna stop the drug because I need my life back.

ggchubby said...

I was diagnosed with BC at the age of 41.this is my 4th year on tamoxifen. I have gained 2 stone is n weight, have a stomach so bloated, swollen and ugly, I avoid looking at myself in the mirror. I hide my swollen body from my husband disgusted at the lump my middle has become. My two children aged 8 and 6 lovingly hug me calling me snuggly mummy!! My affectinate nickname now is chubbnub. I have hot flushes, so much forgetfulness and haziness...I wonder if I am getting alzchimer's.
I too have wondered if the pain, discomfort, tiredness,body invasion of fat is worth it...I have 1 more year to go....so I will reluctantly continue knowing that I have endured all this so I can hopefully see my children grow older and more gorgeous, spend time with my husband achieving the plans we hoped for pre diagnosis...making necessary improved lifestyle choices to deter a recurrence.
I am so glad I discovered your blog, it has made me realise how we survivors are faced with such dilemmas from the moment you hear that C word, the daily challenges we experience both mentally and physically are truly monumental.
I have taken comfort from other posts that in 12 mths time, I too may return to my pre cancerous self..more energy and memory with a streamlined silhouette. Thank you

Valerie B. said...

I have been on Tamoxifen for 10 months and I am seriously considering quitting the drug. In that time, I have gained 30 lbs, have had shingles twice (I believe this is due to the tamoxifen weakening my immune system), joint pain so bad I couldn't move my hand, and insomnia. I also forget just about everything. I currently have some kind of skin thing on my leg - I thought it was shingles for the third time, but now I'm not so sure. I plan to go to my dr on Monday to have it checked out.

I should tell you that I am taking Tamoxifen as a preventive measure - I do not have breast cancer.

I am really interested in the Holistic medical approach as well as the role diet and exercise play in your health and plan to do some intense research on it.

I thank all of you for sharing your journey through this awful disease-it really helps in the decision-making process.

Valerie B. said...

I have been on Tamoxifen for 10 months and I am seriously considering quitting the drug. In that time, I have gained 30 lbs, have had shingles twice (I believe this is due to the tamoxifen weakening my immune system), joint pain so bad I couldn't move my hand, and insomnia. I also forget just about everything. I currently have some kind of skin thing on my leg - I thought it was shingles for the third time, but now I'm not so sure. I plan to go to my dr on Monday to have it checked out.

I should tell you that I am taking Tamoxifen as a preventive measure - I do not have breast cancer.

I am really interested in the Holistic medical approach as well as the role diet and exercise play in your health and plan to do some intense research on it.

I thank all of you for sharing your journey through this awful disease-it really helps in the decision-making process.

Sanderson PR said...

Val: I don't think using Tamoxifen as a preventative measure is a good idea. I do know I quit it about 5 months short of my end date. I figured I took it for 4 and a half years and its side effects were not as terrible in my last year but you DO gain weight, have memory loss, hair loss, which I couldn't stand having had very thick hair and it came back in only half and stayed that way and continued falling out from Tamoxifen, joint pain and worse, couldn't take Prozac with it which I had been on for 30 years. I felt the depression was a bigger threat in the end than remaining another 6 months on tis drug. It's meant to save your life. I would NOT take it if I didn't have to. Just exercise (i am bad at that too busy) keep weight down and don't eat a lot of red meat and get digital mammograms, not ordinary ones. Even if you need to pay extra. You can't catch it in a regular mammogram until it's been in you for a while. They don;t tell you that!!

Patti Woodall said...

I ran across this post when I googled "What if I don't want to take Tamoxifen?". I have been considering the same statistics: If DCIS post lumpectomy and radiation has a 10% recurrence rate, does the benefit of tamoxifen out weigh the risk? It's not just hot flashes, it's not about discomfort; it's uterine cancer, stroke, ovarian cysts, UTI's, blood clots, severe and chronic vaginal infections, a constant headache and ringing in my head with loss of hearing in my right ear. Then the doctor wants to chase side effects with other prescriptions, one being topical estrogen which is what we are attempting to block with the tamoxifen!

I stopped taking it 2 days ago. I have to wonder why 10% chance of recurrence, monitoring regularly with scans, is not enough.

Patti

Patricia Cano said...

I've only been on Tamoxifen for 4 months and I've had enough. Stage 1B bc with lumpectomy, chemo and radiation. I'm more miserable now than when I was on chemo. My husband and I discussed and determines it's just not worth it. Why prolong my life if it's not going to be a good one? My onc. Told me to be on it for 10 years! He also said the pains and all my complaints were in my head! My pcp and I decided to get off for 1 week and see if side effects go away. I'm going for 2.

Shannon said...

I am so glad I found this blog! I've been on tamoxifen for 14 months. They really should have a warning label that says "will alter your life" on the bottle!!!! I had stage 1b BC ER/PR positive at age 38, did not reach my lymph nodes, thank god, no chemo or radiation. I quickly became depressed after I started taking the tamoxifen, I thought I was going through depression due to all the fear & scare I had gone through. Plus my reconstruction had been very painful & couldn't find any answers as to why it was so painful, so I was depressed. My period was normal until I took the tamoxifen, it changed to every 5 to 6 weeks instead of 4 & was very light. Over time it went back to my regular flow & time. I decided to start a period tracker app on my phone, thought it would be a good idea. About 6 months after taking tamoxifen I noticed that my mood was like a light switch & the depression was so bad, plus cramps body aches,loss of sex drive, fog you name it. The brain fog is the worst for me I can't function some days. It's scary because my mom has Alzheimer's . One day it was so bad I thought I was going to get my period so I checked my app & it said I was ovulating, didn't pay much attention to it, but it happened again! I have now narrowed it down. When I ovulate I feel like the sky is falling, it's the worst feeling EVER! When I get my period I go through it as well but not as bad. My body aches are mainly in my hips. My Onco looks at me like I'm the only one to complain about this & said he can give me an antidepressant. I told him I don't want to take one, I am not a depressed person the medicine makes me this way. He suggested I change manufactures, I did & it pushed my period to 5 1/2 weeks & the worst depression ever. I can handle the hot flashes like a champ it's the other side effects I cant. I've read about tamoxifen detox, but I'm scared that when I have to get back on it, it will be like starting all over again like when I changed manufactures. I have a high tolerance for pain & not a shiner but I don't know what to do. My cousin had stage 2 triple positive & it is back with a vengeance its all over her body now, she was on tamoxifen for 3 years. Just like in previous posts I too have said the quality of my life sucks being on this. I tell my husband all the time I'm scared about my future, where will I be in another 9 years from taking this medicine. I feel like it's not fair to my husband & kids 2 weeks out of the month I'm a basket case, crying, & just want to be alone :( I really want to stop taking it but I'm scared, I'm trying to make it to at least the 2 year mark. It's so frustrating trying to explain what I go through to people who are not going through it. My friend recently had A-typical hyperplasia, they got clean margins from surgery & they want her to take tamoxifen. I told her I wouldnt, but it is her choice. She decided not to take it. Getting cancer put a huge financial burden on me, but tamoxifen has almost bankrupted me because I'm self employed & I can't function. I'd love to hear back from people in previous posts about how they are doing

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