Unable to tolerate tamoxifen.
Comments
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dtad-Couldn't agree more and wanted to post yesterday but was very busy...I didn't like the tone of some of the posts but I guess everyone can make their own decisions on what and who to listen to. I also wanted to say that no one disputes the importance of HT, but there seems to be a dispute over the validity of QOL issues while taking these drugs. These are not issues that can be meditated or positive thinking away'd.....these are REAL problems.
Anyway, blessings to all on this thread. We all have tough choices to make and it isn't always black and white.
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SummerAngel - Oh my! Yes, our stories sound a lot alike. When I did the research, I read that it's very difficult to tell the difference between a fibroadenoma and a phyllodes unless you excise and send the entire thing to pathology. And I read that fibroadenomas were more common in women under 30, and phyllodes in pre-menopausal women in their 40's. So, given my age and the growth, for me it made sense that it was acting like phyllodes, in spite of what the second biopsy said. (There are forum topics just on having to deal with phyllodes coming back - that can also be malignant.) Additionally, I read of someone else here, who was on the fence with taking their benign tumor out, and was so glad that she had, because there ended up being cancer underneath it. So, those were all reasons for me I came up with, aside from the pain, to get it out. But interestingly enough, none of the reasons my breast surgeon wanted to take it out - she didn't question that it was anything but a fibroadenoma and anything inside or underneath it - just thought it should be out for its size. And yes, both of our situations are rare. Less than 1% have phyllodes, and less than 1% of that have cancer inside it (I think there have only been about 30 cases every recorded in scientific lit. I don't know about the stats of cancer inside fibroadenomas). While I appreciate the fact that the second biopsy was done correctly with 8 random samples, in both of our cases, they're only looking at and biopsying the outside of it. At first I was really angry because the past 17 years of getting mammograms every 6 months was for nothing - they caught nothing with the mammogram. But I guess I was still lucky that it was caught. And seems as though, you have been as well.
As for the MRI, I only got one after I had already agreed to the surgery as a pre-operative measure for a more accurate view for surgery. And yes, the MRI was the most accurate to the pathology report measurements - the US was still several cms off.
Did you say that the multifocal was found only after mastectomy? Ughh. I hate reading about people that get a mastectomy and they find cancer in other areas they had no idea about. It makes me wonder....0 -
I was originally started on tamoxifen after my Stage 1 diagnosis. My oncotype was very low, a 9, but after a long discussion with my onc (and a second opinion) I decided to follow his recommendation to begin tamoxifen. Chemo nor rads (I had a mastectomy) were indicated based on my pathology and oncotype. I lasted 3 months on it. During this time, I had severe joint/bone pain. I was always very active person but tamoxifen put an end to all that. Thankfully my onc didn't take my SEs lightly and began discussing other options with me. Just as I stopped taking tamoxifen, I had a seizure. The seizure led to the discovery of a brain met. The met was there during my initial scans/work-up but had been diagnosed as cavernoma and not a met (by 3 different neuro guys). My onc theorizes that taking the tamoxifen "shook up" the met and caused it to bleed which led to the seziure...and surgery to remove the cavernoma. During my craniotomy it was discovered that the cavernoma was really a BC met. It's pathology was identical to my tumor in my breast, so it had probably been there from the start. As my neuro-onc likes to say..."breast cancer is a sneaky bastard." So I had GammaKnife radiation to the tumor bed and brain scans have been clear since (March 2015). My PETs have also shown me as NED since April 2015, from the neck down.
Once I got back on my feet from my craniotomy, I had an appt with my onc to discuss my new treatment plan. After 2 major surgeries, I wasn't up for even a "simple" one such an oomph, so we decided to try Lupron to suppress the ovaries and then I would begin taking an AI. As I was 51 at the time, the first thing he did was run a check on my hormone levels (FSH and estradiol) to see if I was in pre-menapause yet. I wasn't. After 5 months on Lupron my hormone levels still weren't low enough nor were they dropping fast enough for my onc. So I scheduled the oomph. The "simple" procedure turned out to be a full blown hyster, with ovary removal, due to extensive endometriosis and adhesions. Thankfully that surgery finally took care of my ovaries for good and I began an AI in August.
Armidex has been much kinder to me than tamoxifen was. I do have some joint/bone pain but nothing compared to the tamoxifen. I am thankful for my onc for hearing me and discussing other options. I'm also oddly thankful to Tamoxifen...if I hadn't taken it, the met in brain would have went undiscovered and just left as a "harmless" cavernoma. Thankfully the tamoxifen fought the estrogen feeding my met and caused the seizure. It sounds odd to be thankful for a seizure, but without it, I would have an unknown met in my brain. I firmly believe I was able to achieve NED and clear brain scans because of hormonals. I hope I can continue with them as my primary treatment for many years to come.
Best wishes to all of you as your navigate your journeys with breast cancer.
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My Oncologist told me 70% of women on Tamoxifen experience little to no symptoms and 30% experience moderate to severe symptoms, dtad, so your 'people who do well on it is hardly a big number' doesn't stand up. The MAJORITY of women do fine on Tamoxifen. I'm not discounting yours or anyones issues.. I do think everyone is very quick to blame Tamoxifen as a boogeyman, when other causes could absolutely be to blame.
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I've been reading through these replies and now years later see I was not alone with my Tamoxifen side effects. I've been wondering whether those of us with Tamoxifen issues are those women who are/were very hormone dominant to start. For example, hx of long or heavy periods, migraines, horrible PMS, other bodily issues during our monthly cycle. I mention this because for the few months I took Tamoxifen I felt like I was in a hyper-state of PMS symptoms. The depression, crying, bad nerves, trouble sleeping, bloating in my belly that made me so miserable. Then when I was dx with breast cancer (2006), it was 100% ER+, 100% PR+, HER2neg. I even had two periods during chemo and followed by my radiation treatments - I told my oncologist that it felt like my periods were trying to turn back on. I felt like I was swimming in hormones! At that time I was told hormone level testing was not done. If you were hormone positive and pre-menopause you were given Tamoxifen. So given my family hx of strokes and uterine fibroids I insisted on getting an ooph to switch to AI. Femara was certainly hard with joint pain and bone loss but mood swings certainly resolved. No regrets to stopping Tamoxifen for me. Certainly not intending to make a joke - but it got down to pick your poison IMO.
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Lisey, oncologists often discount SE -- it does not surprise me that yours has created a statistic to encourage patients; since, an oncologist's goal is to encourage you to take the pills or treatment. Mine did not want me to see an allergist regarding Tamoxifen SE because it might interfere with treatment. She insisted that there was only one manufacturer of Tamoxifen. (Dana Farber's finest
She just wanted me to take the pill. Many of us suffer in silence, essentially. There are no statistics for that. Your words seem harsh. I think each of us struggles with different SE from most treatments. Tamoxifen is easier than the AI's were for me, but I have undeniable uncomfortable SE. Check out the MANY Tamoxifen side effects listed on many medical sites... These have been documented. Thankfully, Lisey, YOU do not suffer from these. However, many of us do. Vix, I had a very similar reaction to a common antidepressant that my PCP prescribed a few years ago for my migraines. It was very scary. The doctor wanted me to take Xanax to deal with the effects from the drug. Crazy. I am glad that your oncologist listened. I had to find a new PCP after tapering the drug myself. Has your oncologist considered an AI for you? I took an AI with Lupron injections before I had my oophorectomy. There are many options for treatment... I would avoid Tamoxifen if I were you... I wish you the best.
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Yes, dtad, I am hearing you.The title of the thread and the original writer's needs are important!
I find that online communication, in general, can be frustrating for this reason.
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Goodie~ What a story! What courage you have. (Bless))
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Lisey...interesting that your doc said most women don't have SE from anti hormone therapy. Sorry but its a documented fact that is not true. You can look on the individual drug sites to check. Also my MO at a major NYC university hospital confirmed my stat of 50 percent not completing the recommended 5 years due to SE. However if just one person experienced moderate to severe SEs that would be one too many for that person. Also please don't misquote me. Again, we should be here to support what Vix is going through not discredit her!
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Tinyfrog - "Did you say that the multifocal was found only after mastectomy?" Yes, that's true. However, I did end up with another mammogram on both breasts immediately following the biopsy on the right side. The doctor who performed the biopsy examined my mammogram and MRI results and told me that he saw "many areas of concern" and that if I didn't get a BMX he would want to do biopsies on at least 4 areas. So, I wasn't surprised at the results of the surgery.
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Hi SummerAngel - Right now I'm a little more worried about what's going on here in DC and a few other things that had existed prior to and will exist after breast cancer, so just to warn you, I've been feeling very grumpy since last night. Anyhow, thank you so much for taking the time and effort to explain.
I feel as though I've explained myself so many times to my specialists (BS, RO, MO), and yet it's like they're not hearing me, even though they no their head. I met with my MO yesterday, and she forwards her very lengthy clinical notes which says: "For early stage breast cancer, we recommend the following surveillance/follow up: annual mammogram."
Well, that's actually worse "surveillance" than I had before, as I was getting mammograms every 6 months since I was 29, and that failed to catch anything. As I mentioned the mammogram was 2 cm off in every direction, and the MRI - which was the most accurate, was still 1 cm off in one direction. I had mentioned during our brief 15 min meeting (had to talk so fast to get all of my questions out), that I would like to get 3D instead of 2D, and periodic MRIs instead, which she nodded but didn't update in the notes. She said something like, they do the 2D first and then if there are areas of concern, a 3D to get a better view. Well, does that even make sense? In my case, you have never seen an area of concern on a test to warrant any other test, because the first test doesn't see anything. Also, she seems to think that it doesn't matter if they missed a mass anywhere else, because they're just going to give me the chemo. In addition, the original pathologist, who ran the IHC and FISH has now changed his answer and said per the notes, "that her tumor was actually HER 3+," since an outside lab performed the probe test and concluded HER2 +. Again, a bit ridiculous that you get to change your answer, after you get the answer key. Good Lord.
It sounds as though you have a really awesome doctor, who is really using his experience well and going to bat for you. I really hate the fact that I've had so many horrendous experiences with health care, that I'm in a rightful place of skepticism and doubt. I feel as though my innocence as been stolen.0 -
I'm sorry things have been so rough for you, I would be frustrated, too!
I was lucky, all of my doctors were excellent. I found out during treatment that the hospital and associated doctors is in the process of becoming a certified breast cancer treatment center, which may be why they were so attentive.
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Hi SummerAngel - I just had a good cry, so now I think I'm better. I really want to go to the March in DC on Sat, but I had the two back to back surgeries and my energy levels are way down. I don't think it would be safe for me to go, and it's really upsetting for me that women are mobilizing all over the world, and I'm right here in DC and can't participate. I had symptoms of chronic fatigue for almost a decade at least - probably about when the cancer started growing. I didn't want to burden anyone else with the CF, so I stopped making plans socially for fear that I would have to cancel at the last minute, not be fun, or be in a place I couldn't get home from if I got tired. Of course, after all of this time, I am realizing that so much withdrawal, and lack of stimulus doesn't help at all. Not to offend anyone, but for me the cancer thing is straightforward - you just follow the treatment, and it's a legitimate concern in other people's eyes - while the CF is not and has destroyed every aspect of my life, without taking it. Sorry, I finally got was really bugging me off my chest.
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Survivorship Care Plans. I approve of this message.
http://www.breastcancer.org/research-news/untreate...
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great study, thanks for posting. At least the beginning of addressing long term SEs of BC treatment! We need to speak up for better treatment options...
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Yes, dtad. Of course, this conflicts with the pink proganda.
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Vix1970, I had pretty much the same horrible experience. About 2 weeks after starting tamoxifen I became very anxious and depressed. I had constant panic attacks. I let my Oncologist know after it persisted for more than a couple of weeks. He told me to stop taking it immediately. That was in August. I'm willing to try again but this time take Effexor too I just haven't done it yet
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Vix,
Although 95% ER+, I went off it two weeks ago, mainly due to the cognitive symptoms you described above.
I have had some relief but I am reading that it may take a month or so before I am clear on it.
I am still trying to figure out which side effects go with different treatments and the BC experience in general.Very frustrating, painful and heartbreaking. I am on the verge of losing my teaching career. Fortunately, I have a disability policy that will support me for a while till this gets figured out.
Best wishes to all.
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gardengypsy I am feeling so much better the cloud has totally lifted and I've now got me back again. I would also have lost my job in education had I stayed on it. I am currently looking into zoledax injections and AI's but not sure my oncologists will ok it as I am over 45 just! They only tend to use zoledax for under 45's here alongside tamoxifen which is a no and because I'm premenopausal they don't want to do the AI's even with the ovary supression due to the possible SE and bone issues. I feel totally caught in no man's land pretty much been there the whole way through with every test result being ambiguous as to definitely plan of action. It's driving me nuts.
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Vix~ I am thinking of you and hoping that a solution comes your way soon. Is it time for a second opinion?
Now I am afraid to start the Letrozole because of all the new unkowns!!
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had a meeting today. The MDT seem to think that based on all my pathology results that my risk of a recurrence local or regional is very minimal they don't expect it to come backand that the hormone therapy will only make about a 1.7% difference if I take it for 10years so I've decided not to take any ongoing therapies. It's just not enough for me to warrant going through all the side effects. As of Wednesday when I finish radiotherapy that will be it. Just ongoing mamorgrams once yearly and self referral straight to breast team if I am concerned about anything.
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Fabulous news, Vix!!! I am so, so happy for you...
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I am so glad I found this thread! I started Tamoxifen in August of last year. The side effects emerged fairly quickly with hot flashes being the most prominent. Since then I have had 1 period and that was it. The weight gain is real. I workout 7 days a week and eat as healthy as possible but the pounds are still adding up. In the last 3 months, the depression and anxiety have really ramped up and I have very noticeable memory loss. I wanted nothing to do with the holidays or with family. I have to force myself to do everything. I want to just stay in the house and do absolutely nothing which is so not me. I am typically a very Type A person. I like keeping busy and working. Forget it now. I have been thinking about going off the medication but everyone keeps telling me I have to stay on it. I am not convinced that this is going to be a life saving drug for me. The other thing that bothers me is that I am already at higher risk for ovarian cancer since my grandmother died from it. Any advice or comments are welcome. Thank you.
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radonlady, I understand. The only thing keeping me taking the medicine is the fact that I had a hysterectomy in June because I already had bleeding problems and ovarian cyst problems. I had to push for it. I already started the horrible hot flashes and insomnia prior to starting the tamoxifen after the surgery and medical menopause at 42. I now have lots of hip and back pain and horrible memory. My mind gets so bad, it worries me with my job, but it may just be the messed up hormones, I might would have had those difficulties without the tamoxifen. I'm glad I had the surgery and am not sure what is causing all of this because I would maybe quit the medicine too. I now take ambien for sleep, effexor for depression and hot flashes along with turmeric with black pepper that helps a lot, and calcium and vitamin D. Cancer is the gift that keeps giving. ###CANCERCANKISSMYASS!###
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Absolute Benefit for Early Hormone-Positive BC
5 yr Anastrozole = 3% Absolute Risk Reduction
5 yr Letrozole = 3% Absolute Risk Reduction
2-3 yr Tamoxifen & 2-3 yr Anastrozole or Exemestane
3% – 5% Absolute Risk Reduction
5 yr Tamoxifen & 2-3 yr Letrozole 6% Absolute Risk Reduction
April 2006 (Table 1)
http://www.bcmj.org/article/new-guidelines-treatme...
…...........................................................................................
IBIS-I – High Risk Women
5 yr Placebo = 350 out of 3575 = 10% failure
5 yr Tamoxifen = 251 out of 3579 = 7% failure
3% Benefit (Absolute)
(Click on SUMMARY OF RESULTS)
http://www.thelancet.com/journals/lanonc/article/P...(14)71171-4/abstract
…...........................................................................................
IBIS-II – High Risk Post-Menopausal Women
5 yr Placebo = 85 out of 1944 = 4% failure
5 yr Anastrozole = 40 out of 1920 = 2% failure
2% Benefit (Absolute)
http://www.thelancet.com/journals/lancet/article/P...(13)62292-8/abstract
….............................................................................................
If anyone has more accurate and recent trial data (absolute), please post. Best wishes to all.
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BCMJ is a an 11 year old article. Maybe find some updated sources from Harvard or Brigham Women's Hospital?
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How are you all finding your recurrence rate without Tamoxifen? I have a dx score of 17- Thanks!
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Fe_Princess, if you mean the oncotype score. Your recurrance rate is on your sheet. I am a 20 and my recurrence score is 13%. All of these percentages is assuming you take hormonals such as tamoxifen. If you refuse hormonals, you have to double the percentage.. so mine would be then 26%.. I think an oncotype score of 17 is 11% with Tamoxifen and 22% without.
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Recurrence, well you will see from my history that I have had three recurrences. I tried tamoxifen twice and couldn't tolerate it due to anxiety and panic attacks. I made the decision that quality of life was more important. Yes my cancer came back but who knows if tamoxifen would have made any difference or not. I don't regret my decision. Remember you are only dealing with statistics. It is my belief that you should concentrate on the present and enjoy the life you have now so make the decision that is right for you now.
Funnily enough I am now on Letrozole and have virtually no side effects and there are lots of women who have a terrible time with it. Each of us is different and I respect every persons right to follow their own path.
Good luck to everyone xxx
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Thanks so much Lisey, before I even had the dxonco test I was told by my oncologist that I had a 36% chance of recurrence. I wonder why the numbers vary so much.
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