Tamoxifen side effects

krisrey
krisrey Member Posts: 194
edited March 2014 in Breast Cancer #1
I have a question regarding tamoxifen. I wondered if you may help answer some of them. I am 6 months diag and had lumpectomy with 1 node positive. I have just finished 8 cycles of dose dense chemo and will start radiation next month. My onc wants to put me on tamoxifen and i an trying to weigh the benefits with the side effects. I work out heavily and worry about weight gain and hot flashes, etc.(crazy I know)I am looking for others that can share information on their experiences with it. Also I begin radiation next month and wondered what others have experienced as far as the breast changing size. Any information would be greatly appreciated. Thanks so much.

Comments

  • garfield1956
    garfield1956 Member Posts: 6
    I will be starting Tamixofen in January and am worried about the same thing. Hopefully we will get some answers
  • cruf
    cruf Member Posts: 908
    Hi! I have been on Tamoxifen for 3 years now. I didn't put on any weight until I had my gallbladder out in July. I have put on a few pounds but I had lost 20 pounds prior to my mastectomy and so I guess a few pounds is ok. I have had hot flashes and night sweats for 3 years but I don't have cancer any more so I feel it's worth it. Not everybody has problems and as far as I'm concerned, I wouldn't do it any other way! I also work out everyday as well as play tennis. I'm almost 52 and plan to continue on the meds for another 2 years . Good luck in your decision. I can be reached here or at [email protected] if you have any other questions. HUGS!! Cathy
  • badger
    badger Member Posts: 23
    Hi - I am a bc survivor - was diagnosed July '02 - stage three, 23 nodes positive, mets to liver and spine --and had been on Tamoxifen for two years as a cancer preventative. Very, very rare situation. I had no side effects from the drug other than hot flashes (and developing cancer, of course!), and the doctor prescribed Paxil for that, which helped a lot. Ask your doctor about taking Faslodex instead of Tamoxifen - it's a new anti-estrogen drug which has had good results. I didn't have radiation, so I can't help you there. I don't mean to frighten you any more than you already are, but I did want you to know that Tamoxifen isn't always a good thing. Email me at [email protected] if you have any questions.
  • Diane26
    Diane26 Member Posts: 14
    I was diagnosed in 4/03. Had lumpectomy, re-excision, and then 4 rounds of CMF chemo. I then did 30 rounds of radiation and was scheduled for 4 more CMF treatments. It now looks like, due to complications with chemos #4 and 5, I will not be able to finish all 8 rounds. I see dr on Tuesday and will be starting to discuss hormone therapy and am sorely underinformed on risks/benefits of all the various options out there. Tamoxifin side effects seem to scare me. It's nice to be able to communicate with others here regarding our shared issues. Regarding the effect of radiation on my breast, while I had to deal with some serious burns toward the end, they healed quickly (I finished 3 weeks ago and would never know I had any trouble at this point)and if there's any residual effect, I would say my breast might be slightly smaller. I don't know that the lumpectomy didn't contribute to that also, however. That side was bigger before all this started so I'm more even now if you don't count nipple alignment! I had also been concerned about leathery skin, etc. but have had none of that. I'd have to say that 3 weeks post radiation, my breast looks the most normal it's been since this whole thing started. I hope you'll be pleasantly surprised as well. P.S. I worry about weight gain and hot flashes too. While we all know the big picture and where these items should fall priority-wise, I think it's natural to want to avoid them if possible. We're dealing with enough other stuff. I'm sure none of us would sacrifice our long term well being for these things- we just want it all!!
  • jmears
    jmears Member Posts: 266
    I have been on Tamoxifen for two + years. The chemo put me into menapause with all the hot flashes which have long since gone away. I gained a lot of weight while on chemo ... go figure but leveled out on the Tamoxifen. I stopped most of my activity and that was truely the reason I gained. I have not been able to lose any of the weight I gained and that may be the Tamoxifen. The only other side effect I have and it is very mild is some vaginal discharge. My radiation treatments went well and I actually shocked the techs ... I am a very fair skinned person and I did not burn. My breast did get pink and a bit firmer. Now two years later it looks fine. It is smaller than the other probably due to the lumpectomy. My surgeon was great and the lump was in the top right side of the right breast and it wasn't so big. Back to the Tamoxifen ... I fought it hard with my Oncologist but finally gave in. I still hassle him about it everytime I see him but I will continue to take it. It isn't bothering me and it gives me a little comfort in that I am still fighting back against the cancer. Best of luck to you. Jamie
  • llange
    llange Member Posts: 54
    I've been on Tamoxifen for 13 months and I've had no side effects at all, except for very mild hot flashes (I call them warm flashes) about once a day, and my periods now are less frequent and very light. I haven't gained a pound and my energy level is fine. If you're premenopausal, there's not a lot of choice in hormonal treatments at this time, if you're post-menopausal then Arimidex is an option. I was diagnosed at 37, lumpectomy, 2 nodes pos, 1.7 cm tumor, 4AC, 4 Taxol and radiation.

    As far as radiation, I had very few side effects to the breast, only mild redness. I used a prescription ointment called Biafine, you might want to ask about it. It's the same active ingredient as Aquafor (an over-the-counter ointment) but it's much less greasy and uncomfortable. The one side effect that I wasn't prepared for from radiation was the fatigue. By about the 5th week, I got really, really tired, even more so than with chemo. So make sure you take it easy and give your body time to rest.
  • krisrey
    krisrey Member Posts: 194
    Diane26 said:

    I was diagnosed in 4/03. Had lumpectomy, re-excision, and then 4 rounds of CMF chemo. I then did 30 rounds of radiation and was scheduled for 4 more CMF treatments. It now looks like, due to complications with chemos #4 and 5, I will not be able to finish all 8 rounds. I see dr on Tuesday and will be starting to discuss hormone therapy and am sorely underinformed on risks/benefits of all the various options out there. Tamoxifin side effects seem to scare me. It's nice to be able to communicate with others here regarding our shared issues. Regarding the effect of radiation on my breast, while I had to deal with some serious burns toward the end, they healed quickly (I finished 3 weeks ago and would never know I had any trouble at this point)and if there's any residual effect, I would say my breast might be slightly smaller. I don't know that the lumpectomy didn't contribute to that also, however. That side was bigger before all this started so I'm more even now if you don't count nipple alignment! I had also been concerned about leathery skin, etc. but have had none of that. I'd have to say that 3 weeks post radiation, my breast looks the most normal it's been since this whole thing started. I hope you'll be pleasantly surprised as well. P.S. I worry about weight gain and hot flashes too. While we all know the big picture and where these items should fall priority-wise, I think it's natural to want to avoid them if possible. We're dealing with enough other stuff. I'm sure none of us would sacrifice our long term well being for these things- we just want it all!!

    Diane, thanks for replying. While I can see the big picture and want to do everything it takes to get well, I always struggle with taking drugs. I guess I shouldn't being all the chemo I was on. I had lumpectomy, then a re-incision for more margin, and while the doc was in there found another small tumor. I had 3 nodes removed only to later find out that one node was positive and then had another surgury to remove all nodes. I have 8 rounds of chemo 4 A/C every two weeks and 4 taxol every two weeks, otherwise known as dose dense. So after all that, I guess I should not let tamoxifen scare me too much. Although I know there are other cancer risks, the doc says the benefits far outweigh the risk for my situation. I was desprate to talk to other women who have been taken it for a few years to see how their bodies responded, so I thank you for sharing your experieces. If you think of anything else please feel fee to share it, thanks
  • krisrey
    krisrey Member Posts: 194
    llange said:

    I've been on Tamoxifen for 13 months and I've had no side effects at all, except for very mild hot flashes (I call them warm flashes) about once a day, and my periods now are less frequent and very light. I haven't gained a pound and my energy level is fine. If you're premenopausal, there's not a lot of choice in hormonal treatments at this time, if you're post-menopausal then Arimidex is an option. I was diagnosed at 37, lumpectomy, 2 nodes pos, 1.7 cm tumor, 4AC, 4 Taxol and radiation.

    As far as radiation, I had very few side effects to the breast, only mild redness. I used a prescription ointment called Biafine, you might want to ask about it. It's the same active ingredient as Aquafor (an over-the-counter ointment) but it's much less greasy and uncomfortable. The one side effect that I wasn't prepared for from radiation was the fatigue. By about the 5th week, I got really, really tired, even more so than with chemo. So make sure you take it easy and give your body time to rest.

    Thanks so much for the info..I am 42 years old and I wondered if tomxifen would stop my periods all together. I have not had one since June this year from the chemo. Sounds like we had the same type of treatment plan. I had 1 node positive, and my chemo was the dose dense, so I had treatments every two weeks. Thanks for the information about radiation, they did tell me about the tiredness, which I am already rebelling against. I think I have already had hot flashes from the chemo, did anybody else? It has been four weeks today that my chemo ended, and I am suppose to start tamoxifen today,,eek..If you would like to email me I can be reached at [email protected]. Thanks for taking the time to respond.
  • krisrey
    krisrey Member Posts: 194

    I will be starting Tamixofen in January and am worried about the same thing. Hopefully we will get some answers

    garfield, looks like we are getting some good information here. Where are you in your treatment?
  • wingingit
    wingingit Member Posts: 48
    krisrey said:

    Thanks so much for the info..I am 42 years old and I wondered if tomxifen would stop my periods all together. I have not had one since June this year from the chemo. Sounds like we had the same type of treatment plan. I had 1 node positive, and my chemo was the dose dense, so I had treatments every two weeks. Thanks for the information about radiation, they did tell me about the tiredness, which I am already rebelling against. I think I have already had hot flashes from the chemo, did anybody else? It has been four weeks today that my chemo ended, and I am suppose to start tamoxifen today,,eek..If you would like to email me I can be reached at [email protected]. Thanks for taking the time to respond.

    krisrey, initially I thought I was having hot flashes the day after my Taxol treatments. My cheeks and neck would become red and flushed, and I felt slightly dizzy. I later realized that it was a side effect of Decadron, a cortisone-like medication which was given to me as a premed. Good luck on your decision about the Tamoxifen. I have been on it for over nine months now and do not think I have had many side effects--I too work out and just have occasional hot flashes and an inability to lose weight, but some good points have been raised here and I think I will be questioning my oncologist in February about other options, which he has never mentioned.
  • TylersMom1
    TylersMom1 Member Posts: 57
    Hi,
    I have the same diagnosis as you with lumpectomy and one node positive. I had 4 rounds of AC, 4 rounds of taxol then 33 radiation treatments and now on tamoxifen. I am fair skinned and my breast became tanned and my nipple burned alittle. The doctor gave me some cream to put on it and it was fine. My breast is now firmer than the other and larger. I also do not sweat on that side. I am pretty active and it feels really weird when I work out and am dripping with sweat everywhere exept under my left arm and around my left breast.

    As far as tamoxifen, I have been on it for almost one year and have not had any side effects. There is a history of osteoporosis (sp) in my family and my onco tells me that a benefit to tamoxifen is it helps with bone loss. I will take whatever benefits I can get! Hope this helps. Take care and good luck with your decision...Cheryl