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swimever12 Member Posts: 2

Hi I have stage 1A, est/pro positive, hers negative, low grade 1 and was having a lumpectomy on left breast. I also took radiaiton for a month in Feb. 2022. I took tamoxefin last January then in Feb. exact a month later, I got hives. I stopped pill for two days which urgent care enter nurse told me to. However my oncologist doubted that pill would cause hives. I was back on the pills and didnt get any hives. Two months later, in April, I got hives again and passed out twice within a min or so. I went to ER and stayed overnight and the doctors tested me everything. Nothing wrong wtih my blood pressure, vago (dizzy), and many tests turned negative. It is totally mystery. I suspect that i ate something that conflicted with tamoxenfin. I couldnt figure it out. I wrote everything i ate. I did not eat any new food, ZERO.

I decided to stop the pills and the dr agreed with me until I took blood test and see if I am already on post menopause. If I am, will give me a better and different mediice for that. So lately, no tamoxefin, i ate anything and feel much comfortable. I hate tamox! Has that effect cause you? I might have a second thought to take mastecomy so i dont have to take any pills.


  • buzzbomb
    buzzbomb Member Posts: 45
    edited May 2022

    Hi and wow….interesting that you would post this now as I am going through the decision to take or not take tamoxifen. When you mentioned hives I cringed as I suffer from chronic idiopathic urticaria (hives that appear for months at a time with no known cause) and it’s awful. I had a very small cancer with no node involvement and at 65 they want me to take tamo for five years….and I don’t want to. It is absolutely your choice, remember that.

    It will be interesting to see what others post. I am in no rush and continue to research why this drug is so heavily pushed (and yes, I know there is evidence of reduced recurrence but no reduced mortality). Are the side effects worth it? To me it seems wrong to block a woman’s estrogen. Men would be up in arms if we took their testosterone away….

    More research…

    Have you looked into what fillers are used in the drug you take? That might be an issue

  • cheftoast
    cheftoast Member Posts: 23
    edited May 2022

    louisville, the hives might be an uncommon reaction, but that doesn’t mean it can’t happen. My friend started tamoxifen and ended up with a full-body, poison-ivy-style rash. Her MO switched her to something else that was fine. There are lots of options with tamoxifen, including different manufacturers — can’t hurt to try some others that might not aggravate you.

    Also, someone can correct me if I’m wrong, but I THINK radiation can cause a histamine reaction in your body after a while (like seasonal allergies) so I’m wondering if you were still super sensitive in February. That should pass as things settle down Still, you’ve got lots of options so don’t feel like you have to stick it out on this one. Good luck!

  • tundra1
    tundra1 Member Posts: 1
    edited August 2022

    Hi buzzbomb, I'm going through the same thoughts of whether I want to take the Tamoxifin or not as well. Sounds like too many horror stories of side effects on this forum. Leg cramps, hives, fatigue, heartburn...possible osteoporosis, etc. I mean, good grief. I'm 51 and had a small tumor which didn 't reach the nodes either. Oncologist wants me to take Tam for 5 yrs as well. I am not a fan on being on any drug for long periods of time, much less add all these possible symptoms, PLUS throw me into menopause on purpose and not naturally. Curious if you decided to take the med or not.

    I am also wavering on going through the radiation process. Scares me more than I thought it would. waiting til after to take the Tam, but like I said....wavering on doing radiation as well... all too scary for me right now.

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited August 2022

    Sometimes it takes a while to find the right drug for you, and sometimes you can switch manufacturers and have a better experience.

    Remember that anti-hormonal drugs are used to prevent future mets and stop any stray cancer cells in their tracks, all over the body. Mastectomy treats only the one location. The AI drugs are hard, but I keep reminding myself that each year that I'm on it lowers my risk of future mets. That's what the data says.

  • sleepylibrarian
    sleepylibrarian Member Posts: 9
    edited August 2022

    Buzzbomb, there are numerous studies that have found a reduction in mortality from extended use of endocrine therapies. Just a few quick recent examples (there are many more going back to at least 2013):

    Chang et al. 2019. The duration of endocrine therapy and breast cancer patients’ survival.

    Sung et al. 2020. Association of Endocrine Therapy With Overall Survival in Women With Small, Hormone Receptor–Positive, ERBB2-Negative Breast Cancer

    Huma et AL. 2021. Assessment of 25-Year Survival of Women With Estrogen Receptor–Positive/ERBB2-Negative Breast Cancer Treated With and Without Tamoxifen TherapyA Secondary Analysis of Data From the Stockholm Tamoxifen Randomized Clinical Trial

    (In not authorized to post links, so you will need to look up the titles, but they are all open access articles.)

    One problem is that it is likely many people don't benefit from the therapy, and the extremely simplistic treatment algorithms still in use aren't doing a very good job distinguishing between those likely to and those unlikely to. The two latter articles are both examples of studies trying to zero in on those subgroups.

    One thing to keep in mind when you read a study that shows evidence of reduced recurrence but no reduced overall survival, is that only means they see no reduced mortality *within the study period*. Any time metastases are increased, there is a very strong implication that cancer-specific mortality will also be increased because metastatic cancer is incurable and usually fatal. However, that difference in mortality will lag the recurrence by several years past diagnosis. So, it might not become statistically significant until past the end of the study. When these studies look at use for 10 years and find the risk of distant metastases is halved, we can make a reasonably safe assumption that breast cancer specific mortality is also reduced by around half. That is likely to reduce overall mortality. It may not if the benefit is small enough that the toxicity of the endocrine therapy in terms of cardiovascular health, fractures, fatigue preventing exercise, etc. is enough to outweigh it.

    We can probably make a better guess at what is likely to be the case for a given individual than most doctors bother with. You can estimate the amount of predicted benefit much more specifically using age and tumor size, grade, and a few molecular/cellular characteristics that predict either success with endocrine therapy or risk of relapse. And you can guess at the predicted risks (somewhat more vaguely) by taking into account the personal risks of bone and cardiovascular events, and how the individual reacts to trialing the therapy in terms of cholesterol, etc.

    When considering quality of life, I do also think its worth keeping in mind the loss of quality of life that accompanies a relapse. Even in cases where overall survival might end up equivalent thanks to life-prolonging chemotherapy, I think we are probably all aware that those years on chemo treatments will probably be worse for most people than the side effects of endocrine blockers.

    I hope it's clear I'm NOT saying this to persuade anyone to be on these drugs. I think everyones treatment needs to be a personalized as possible to their specific risks and preferences. I just want people to make their choices understanding the implications of the evidence correctly, and to evaluate their personal risks and benefits as accurately as possible.

  • cyathea
    cyathea Member Posts: 321
    edited August 2022

    Hi swimever12, I’m not a doctor so I can’t provide medical advice, but my experience might be helpful. I had a very strange, whip-like skin irritation last year that burned and itched. My MO didn’t think that it was from the meds, but there is no way to know. It is possible that this was from my Covid vaccines, the Shingles vaccine, a new allergy, or maybe even from my autoimmune disease (Graves). I take Generic Claritin every day and this seems to help me.

    I took a break from Tamoxifen for about a month and then tried Toremifene. This seemed worse so I went back to Tamoxifen. There are lots of manufacturers of Tamoxifen and some people might be allergic to some pills but not others.

    I hope you can find a treatment path that works for you

  • swimever12
    swimever12 Member Posts: 2
    edited August 2022

    hi I decided to decline any medication ever since April. I chose to change my food diet. Im working on being vegan. I learned lot from dr. MCDOUGALL. It is his website, book, and youtube. :)

  • buzzbomb
    buzzbomb Member Posts: 45
    edited August 2022

    congrats on your decision swimever. I have had my radiation and am currently taking tamoxifen but not sure if I’ll continue. interesting that you chose veganism…I went the complete opposite, very low carb for me. I really suffer with grains so it was easy. Zero sugar and zero seed oils. There is so much info out there, sometimes I think it’s too much and it’s all contradictory! Tons of walking, yoga and heavy weights

    I am 65 and post menopausal for a long time. Apparently in Canada tamoxifen is the only medication recommended for DCIS….regardless of age.

  • themrslewis
    themrslewis Member Posts: 10
    edited August 2022

    Tundra1 - I am going through the same struggle. Everything points to low risk: Oncotype score 9, ki 10%, grade 1, stage 1, clear margins and node negative. I feel like there isn’t enough research/data available to give concrete recurrence or survival benefits of Tamoxifen vs Surgery/Radiation only. Given that I am considering declining the hormone therapy I am going ahead with radiation. And, oncologists are grounded in medicinal solutions. Soon to be 50 yo and I want to retain quality of life. Have you found any information since posting

  • mrsbeasley38
    mrsbeasley38 Member Posts: 12
    edited August 2022

    I completed Tamoxifen. It had side affects. It put me into menopause. I think that is part of how it prevents cancer. Once I stopped taking it at 48 yr old my periods came back. At that point I would have rather went back on it. My hair did get thin. My hoo dried up like a raisin. (I was able to take a small amount of Premarin to fix that) For me I am glad that I completed it with side affects and all. I found out after I completed it that I have a cancer gene, not BRCA but another one that increases breast cancer risk. Even happier now that I fought against the side affects. The affect I do not want is another bout of breast cancer.