I don't want to take Tamoxifen. Anyone else out there?
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Hi everyone - I am a bit sad today. I just met with one MO today who recommended Chemo (the hair loss type) with tamoxifen for me. My OS says to get a second opinion. I know I am definitely not doing chemo, but the Tamoxifen I am starting to warm up to...though I still hesitate.
Because they found 2 microtumors in one of my 3 lymphnodes, that bumped my status up from 1A to 1B but even the MO said she did not know what it meant in terms of my prognosis. She said, it's potentially worst than node neg, but not as bad as a real 1 positive node in terms of % survival, so all her recommendations are based on stats for someone with definitely a positive node.
My question is, for those of you on Tamoxifen, aside from hot flashes, are there any other physical side affects that are horrendous? I hear about joint pain and feeling asexual, as well hair loss -- and I'm terrified of looking older or having less elastic skin (and hooha). Tell me something that is not horrifying about the SE, please. Thanks!
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I have had very few side effects on tamoxifen and I have been taking it for nearly three years. I have some mild issues with joints, but since I had arthritis before my diagnosis, I cannot be sure that it isn't the arthritis acting up. I've lost weight and kept it off, I've had no hair thinning, no hot flashes, none of the menopausal-side effects that some women suffer. Everyone responds to it differently and not everyone has a horrible time while taking it.
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Gowanus....ahh...another Brooklynite! First off, I'm sorry to hear about your diagnosis and concerns about Tamoxifen. I have several suggestions. AnniceMD started a thread Stage 1, Grade 1 and pre-menopausal:
https://community.breastcancer.org/forum/108/topic/773534?page=45#post_3927122
There are many of us on that thread that faced the same concerns that you are expressing. I don't know what your Oncotype DX score is, however, it is one tool, among many that helps you and your medical oncologist decide what course of treatment is right for you.
Now that you've had one medical oncologist visit, I would strongly suggest that you get a second opinion and ask that your case be presented to a tumor board.
While reading annicemd's thread, you will note that many of us were offered other options to chemo. Not knowing your Oncotype DX score,many of use Grade 1 patients who had either low or intermediate scores were offered the option of Ovarian Suppression based on the SOFT and TEXT clinical trials:
http://www.ncbi.nlm.nih.gov/pubmed/24095609
Later this year, the preliminary results of the SOFT and TEXT trials will be published. Until then, no one knows how effective ovarian suppression is as an alternative to chemotherapy.
Now, regarding Tamoxifen....Recently, a landmark study, ATLAS's first preliminary results were announced, followed by tlast year's aTTom trial's preliminary results:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61963-1/abstract
http://www.medscape.com/viewarticle/805171
While others here have mentioned that one of the downsides of taking Tamoxifen is that it increases the risk of cervical cancer, both studies conclude that the benefit of reducing breast cancer risk of distal recurrence was much greater than the risk of developing cervical cancer, which for many is a very treatable disease.
Do side effects come with taking Tamoxifen? Most definitely for some patients! However, one must realize that there are potential side effects for taking all kinds of medications INCLUDING supplements! Yes, "natural" supplements come with a host of side effects as well! Read Dr. Offit's book, Do You Believe in Magic and you will enlighten yourself further...
http://www.amazon.com/Do-You-Believe-Magic-Alternative-ebook/dp/B009NG3A2M
Bottom line, I would get two or three opinions and also ask that your case be presented to the tumor board, where a group of oncology specialists give their opinions. Then, I would sit down with the medical oncologist whom you are most comfortable with and then choose a treatment plan that is right for you!
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Selena, thanks for giving a positive review of Tamoxifen. I fear the worst.
Voracious, Yes, another Brooklyn girl. WOW. Thank you for your great post. I am going to go to the premenapausal thread and read it all now.
I just got my oncotype score and it was a lowish score of 20. I am speaking with the original MO tomorrow and I have 2 other MOs to chat with in the next week or so. I've been trying to be calm through this whole thing and sort of ignoring the devastating look of my body right now. It's been a very fast process and I've had little time to mentally process this who $%!&ty series of unfortunate events. I am just glad it was caught early-ish. I am curious about the SOFT trials but I will just have to wait to hear the opinions of these other two MOs.
From my reading of all the experiences so far, it seems my diagnosis is one of these "gray" ones where survival ratio is high no matter what I do. It puts the deciding factor firmly in my court -- which is good and bad at the same time. I just hope, I can live the with decision, no matter what it is
I will report back when I've finished reading all your links. Thanks!
FondlyGG
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I'm 44 and I have been on Tamoxifen for almost 2 years now and I had a VERY hard time starting it. In fact, I started a thread on here at the time about "staring at my Tamoxifen bottle." I did finally begin on June 1, 2012 and it has been a bit of a ride for me. After a year, I had tremendous issues with my reproductive organs (ovarian cysts, severe endometriosis and enlarged uterus). My whole team thought I had developed a secondary cancer, possibly due to the Tamoxifen...but all pathology came back benign ~ Thank God!
After the surgery they put me on AI drugs, but it caused such severe pain in my bones and joints that I couldn't function, so I'm back on Tamox now. My biggest complain is weight gain, hot flashes (every 30 minutes for two years now) and joint pain. Even with exercise, I cannot seem to lose the 15 - 20 lbs I've put on. I hate the extra weight so much that I am thinking about stopping Tamoxifen with 3 years left on my 5 year regimen. I am going to talk to my MO about it at our next appt, but my guess is that she won't agree with me. She has told me more than once that it is as important to my recovery as chemo. :-\
Best of luck - you've gotta do what's best for you.
Sandy
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I don't want to take it, either. I am 47, diagnosed March 4, 2014, and had a right breast mastectomy with immediate reconstruction on March 18, 2014. I wasn't given options concerning treatment...only protocol of Tamoxafin. I have a history of a possible stroke, my father died of massive stroke, and I have severe endometriosis. I also own a bakery/cafe that keeps me working 12-18 hour days on my feet. I'm not seeing where the risks and side effects of taking the Tamoxafin are worth it. I'm not getting any help from doctors.
Still confused as what to do. 0 -
Hi I've just registered on this site as it is the only one that had a load of women talking about aching limbs and cramps taking Tamoxifen, thank you for your comments, I now know I'm not the only one who's suffering. Thanks for the predict tool it's interesting and its from the NHS in the UK as well (I'm in London) I have been on various hormonal therapies since 2009 diagnosis, surgery, chemo (no taxotere) and radiotherapy. I'm now 56 and was not menopausal until I had chemotherapy which induced menopause. I have had nothing but bad side effects from Tamoxifen, Letrozole, Arimidex, Examestane and back to Tamoxifen. The initial Tamoxifen made me seriously suicidal so I was taken off it for a month. The subsequent aromatase inhibitors rendered me hardly able to walk without a stick with leg and hand cramps which gave me fallen foot arches after 18 months. Being back on Tamoxifen is marginally better and I can do the 'day to day'. I have now been on it for nearly two years. I've tried having leg massage, physiotherapy, wanted to try acupunture but was running out of money so had to stop.
Personally I'm afraid NOT to take it, however looking at this prediction chart gives a certain amount of hope (with unknown is the K167 box and 3rd in the chemo box?. Do you know what a K167 status is, also Gen chemo regimen? I'm going to forward this chart to my consultant and see what she suggests. I've already had conversations about my side effects with her but don't get any information to help only that I must keep taking it. I am starting the train of thought to stop it though, although I don't have long to go before my 5 years are up......
I am glad to have found this site in my hours of achiness, thanks
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Dilly45
Ki67 is test that sometimes is requested by your MO and appears at your pathology report. Above 10% is considered positive for Predic tool. Values above 10 or 20% can indicate that you cancer was growing faster and was more aggressive.
If you received taxane class of drug during your chemo , taxol (paclitaxel) or taxotere (docetaxel), then you had third generation of chemotherapy.
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im doing fine on tamoxifen so far, but its only been a week. i take it with supper. it does make me feel tired and a little dizzy so that works good with taking it in the evening. i have noticed some mood swings but feeling great the last two days. hope it lasts!!
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I just finished radiation after I did have 4 rounds of chemo. I am suppose to start tamoxifen but I don;t want to. I relate to your post. For me it isn't about the % or numbers it is about what it represents. I am 47 and was physically fit, active and feeling better than ever before my diagnoses. I feel like Tamoxifen is the beginning of the end for me. (silly I know). I have been crying for 2 days because I don't want to take it. So, now I am reading boards for the first time since I began this journey and hoping I can find ladies that relate. I am having some side effects from chemo hot flashes, neuropathy not sleeping as well as I use to, so reading about these additional side effects is making it worse. I am ready to feel good and I am so afraid I am going to feel worse.
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Hello All,
I went to my MO in April and basically force her to let me stop taking Tamoxifen for at least one month...she okayed it for 6 weeks.
I stopped Tamoxifen after one year of taking it (I am sure I will not come back to it).
I hope it is a right decision for me...however, I can not deal with the SE anymore... Last December I had ruptured cyst in my right ovary...and on May 15, I went to my GYN, she told me that there is another one was growing 2.5 cm.
I stopped taking it on the same day...got my period after one week (10 days earlier). My joint pain almost gone...headaches, mental fog and many others SE not as bad anymore...I hope they will disappear soon. I start feeling myself again.
Good luck to everyone!
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Hi AK1971 -- I am guessing by your handle you are 42 or 43? I am 40 and I told my onco I would take it for 2 years and then get off to see if I can have another baby naturally. I am hoping I don't get many SE, but so far, from the many complaints on this site, I'm not that hopeful. If I get ANY medical side effects, I'm out. No blood clot, no uterine cancer/cysts/polyps...no thank you.
The MO did say that as a "young" woman, my body should tolerate it better. If I don't chemo and just do the tamox, I should get my periods back. Christy, I can totally relate. I don't want to go into menopause or have those effects at age 40. I got 10 more years to go man!
But the fear of distant mets looms (and I read those stories too and get freaked out). I think a couple of years of tamox, if I can stand it, will be enough for me. Fingers are crossed.Matsgirlie, let me know how it goes in month or so. I am curious.
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I am 53 years old and have been on Tamoxifen for about 3 weeks now. I do experience hot flashes, but I can not blame it on the T as I was having those prior.
The only thing I really notice different is the leg cramping, since reading this board, realize I am not the only one with this. It is not the jerking, ow-ee kind of cramp, but more like if I'm sitting in one position for too long, I need to stretch. Kind of like a long car ride.
It's still a little early for me, so time will tell.
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Hi GowanusGal, yes I'm 42... But since taking tamoxifen I feel much older. I got to the point where I absolutely can not tolerate this medication. However, there are many women outthere who can... And have little or no SE.
Every visit to my oncologist, she was trying to convince me that all the symptoms I have, it was in my head ... never in my life I had ovarian cysts.. Now it is there.. Back in December it was bad.. I went to ER, had 2 MRI, us, ct scan...finally in February they were gone... And now in May...I got them back.
But this is my own experience, I really hope you will not feel any of SE I went through.
I guess I will continue with gym and healthy diet, and hopefully this cancer experience will never come back.
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Did you read this? Aspirin? This was also talked about in the book Anti-Cancer. I am intrigued...
http://www.nytimes.com/2014/05/20/opinion/a-cancer-treatment-in-your-medicine-cabinet.html?_r=0
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Just read...Interesting. Thank u for the info!
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AK1971 -- If I can't tolerate the tamox, I will go on the aspirin. Hell, I might do both. The more I read, the more I realize for those of us with smaller tumors, there is just no telling since either the tumor surgery was the cure (the end), or it metastasized and chemo/hormones MAY help (or the cancer may change). So it's a mindset thing. And no matter what you believe, a healthy anti-inflammatory lifestyle is key to keeping things at bay. Please keep me posted on your progress. And let me know if you end up feeling "young" again -- since this is a BIG deal for me too (I am a very "young" 40 and people still mistake me for someone in my early 30s...so my energy and appearance are important parts of my quality of life).
Be well,
GG
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Interesting, thanks for the information about Aspirin as I'm thinking of stopping at 4 years of Tamoxifen. I was interested to read that Grade 1 cancer had a higher survival rate so that's me .....I have posted on the Hormone therapy - Tamoxifen different brands? There is lots of information on the Cancer UK web site link below
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anyone seen the full report? http://www.nature.com/bjc/journal/vaop/ncurrent/f...
If I could determine the inefficacy of tamoxifen in my specific luminal b type cancer, then why expose myself to the potential side effects and quality if life issues, and just pop a couple of aspirin a week. Take some I3C and just live healthier lifestyle.
Also Thinking I can live with a little internal bleeding caused by aspirin after what I have been through.
Makes you really wonder why it has taken to 2014 for someone to bring up regular aspirin use as a potential cancer treatment, when it costs like $10 for a year supply.
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That is a great story. My great grandmother lived to be over 100 years old, and the only medication she took her whole life was one aspirin a day.
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Hello,
I wish I had seen this post earlier. I was diagnosed last year 5/2013 (age 48). I chose a lumpectomy of my left breast because my tumor was also 1cm. No family history of BC and chemo was not recommended, so I also chose not to have that. I was supposed to start Tamoxifen in Oct 2013. I really didn't want to, it made me sick to think of having to take it. I too am premenopausal. When I told my OC I wasn't taking it, he pretty much said, "well there is nothing I can do for you then". So then my husband talked me into it. Mostly because he wanted to increase my percentage of non recurrence anyway we could. I changed my oncologist. I started Tamoxifen Jan 2014. So have been on it for 6 months. My blood pressure is really high. I am not on meds for it, because my primary is not concerned about it right now. I have noticed weight gain, increase is sweet cravings. But that is the only side effects for me. I tried to find others that felt the same way as me, but most people were older than me and their stage was higher. So basically I went on it, because I didn't have anyone in my corner.
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I had UMX with DIEP in January and started Tamoxifen in April or May.
No problems for me that I can tell - so add that to the not-a-horror story column.
FYI, GowanusGal, in your first post or so, you asked if there was a thread for those going thru DIEP.
Hopefully you found it, but it not and you are still interested, there is a thread under breast construction called DIEP 2014. Luckily I found it a month before my surgery, it was such a help. Its basically an ongoing discussion of people going thru it - including decision making, what surgery and recovery is like, and every day questions "should it feel this way?". I found it so comforting to know that others were going thru it too,and to get feedback from women who already went thru it. Learned a lot!
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Hi everyone,
Just checking back in after a few weeks off. I have been on Tamoxifen for 1 month now. So far, I haven't notice huge changes, but there are definitely some changes.
I've had some mood changes and fatigue. Also, I feel everything is drier. My skin looks a little wrinklier and drier and so are my eyes. The changes are so subtle, I can't tell if it's the Tamox or if it is my mind. The mood swings are definitely the drugs -- but the hair and skin I am not sure about yet.
My DIEP foobs are good at least. I am still un-sold on the Tamox, but willing to give it another 5 months. I will continue to check in! I hope all of you are doing well.
XO,
GG
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I'm having real doubts about starting Tam. I did 6 neoadjuvant cycles of TCH (at full strength, not a single dose reduction); lumpectomy with wide margins; SNB showed no cancer & no chemo effect; and just completed 30 rads. My staging per MRI was IIa (2.5cm tumor). At biopsy, my BC was 15% ER+ <5% PR +, so-called "weakly" hormone +. Not possible to test at surgery since cancer had shrunk to the point that the largest cluster of cells was only 3mm. Again, at biopsy, cancer was very strongly Her2+. Will be taking Herceptin for one year.
I am thinking that I will not start Tam (if at all) until I finish Herceptin. Wondering if anyone out there can share their thought process on whether to take Tam under similar circumstances.
I'm 43 and was premenopausal before dx. I'm scared of SEs - both becoming "old" before my time & because I have a history of ovarian cysts.
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I struggle with staying on Tamoxifen. This August will be 3 years and I have had a lot of Side Effects (SE). First few months I lost weight and had severe headaches, leg cramps, and chest pain. Wanted off and was persuaded to give it time. It got better about 6th month, helped that I got on anxiety meds. At month 15 the hot flashes were embarrassing I would stand and talk to people and sweat just poured off my face and armpits. At night the sweats would drench my clothes and bedding, I was losing sleep and becoming very cranky. The flow of my cycles were extremely heavy and passed quarter size blood clots. I was extremely fatigued and depressed. At month 18 I was taken off anxiety meds and put on anti-depressants and that seemed to help, it lessened the hot flashes and night sweats and I could finally get a full night sleep. The cycle flows gradually went back to normal. About month 24 started gaining weight for no particular reason, was on a healthy diet and working out 3x week. By month 30 I had gained 30 lbs and stopped taking anti-depressants thinking that was the cause of weight gain (previous experience). No change and went to weight dr. Now at month 35 have lost the 30 lbs., my cycles are reduced to spotting, and occasional night sweats, but have been told have Insulin Resistance (pre-diabetic) take meds for it and as of last week told my testosterone level is high because of the estrogen being blocked and my hair is thinning and balding at the crown, and growing whiskers on my chin and neck. I have an ultrasound schedule for Aug. 5 to see if cysts are growing on cervix due to Tamoxifen usage.
Don't mean to scare anyone thinking of starting Tamoxifen but I was told SE would be "tolerable." Well I must have a low tolerance because I am worn out with all this. It seems that I get one SE under control and something else comes up. Aug. 16 marks 3 years - I see Onc on Aug 25, am considering getting off, but it does scare me too. I would like hard numbers to help me make the decision, but can't find any.
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Welcome to BCO EnuffZEnuff
We arev sure you'll get feedback regarding how others have coped. The hormone change swings you've described sound like you've toughed it out for a long time with a whole range of SEs, none pleasant
We hope you can gain
lots of valuable info on other's experience on Tamoxifen.
Often just having someone who understands can help in some small way.The Mods
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so sorry to hear of your side effets Enuffzenuff. Have been reading up online and some do share horrific experiences. I've yet to start, and considering probably won't.. though, one friend started few months back and she is taking it superbly well. Almost no side effects.. combined with yoga, exercises and healthy diet, she is now much healthier, slim and fit post-lumpectomy and as she is about 50, she is hoping it'd get her to menopause faster. She is probably one of the rare few who's happily taking it!
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enuff - Sorry that you are having so many issues. Maybe talk to your onc about a Tamoxifen vacation for a month to see what side effects disappear. I didn't do it for a year (not advisable) but when I started I knew for sure what was the T and what wasn't. I don't know if you are anywhere close to menopause, but that certainly plays a number on us as well.
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for my situation which was young diagnosis and high grade cancer, tamoxifen is a clear benefit. It is important to consider the science. I could get uterus cancer from tamoxifen but I am so much more likely to get cancer of the breast or metastatic disease this is a purely logical exercise. Really no se from it other than war news and possibly cessation of periods but that may be my chemo regimen. I am far more concerned about the mounting evidence that it can cause triple negative contra lateral cancer. But again given my profile the 10 years will give advantage.
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Well, I've been trying to stay positive on the Tamox, but so far (1 month + in), I've started noticing the following SE and I really don't like it:
1) Hair loss - my hair is coming out in clumps...it's disturbing -- good thing I have lots of hair and it is not super noticeable yet. But my questions is, will it stop?! I don't want to go bald on this stuff.
2) Moodiness - I rarely cry. For the last week, I've been weepy and super angry. To the point where even though I know I am being a little crazy, I can't seem to control my mood. Today, I am depressed. I hope this ends too.
3) Un-sexed - I have a fairly good libido and right now, I have zero interest in men at all. I feel weirdly old, like someone's grandma suddenly. I don't look that different from just 2 months ago and I know men still look at me at times --but I feel nothing. Very very little towards them (and my husband). It's like I am genderless suddenly.
4) Hot flashes & weird sleep - it's been fairly tolerable, but last night I had such a rough time of it. I hope it does not increase in intensity.
5) Dryness - EVERY where. If you catch my drift
And more wrinkles too...I would love to know that these SE will stop or decrease as I've been told by my Onc that it will usually even out in 6 months. I just don't want have permanent hair loss/wrinkles/ achy joints from this thing.
Advice? Commiserate? Show me some light at the end of the tunnel please!
Thank you -
GG
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