Any positive or "OK" experiences from Tamoxifen?
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Finishing week 3. Having some "warm" flashes and feeling a bit tired and achy. But, I was also way too active this week so who knows. Nothing too terrible!!
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I am only on day 5, but since some people say they have problems from the beginning, i am happy to report i have had nothing nada zip do far. I am hoping it stays this way!! I have some aches and pains but they are surely self induced, tackled a bunch of yard work the last couple days that i just could not do during rads.
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kmmd: were your diagnosed with hypothyroidism prior to bc or did it rear its ugly head after treatment? I've gained a lot of weight (25 pounds) since I finished treatment. Now my TSH level is high, suggesting I probably have subclinical hypothyroidism which might explain the weight gain and my constant tiredness. My GP prescribed levothyroxine but I haven't filled the Rx yet. I'm waiting until I see an endocrinologist next week.
I'd be very interested in hearing about your experience with hypothryroidism and how you are controlling it.
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I have been on Tamoxifen for 9 months and doing just fine. No major side effects here! I had some GI issues the first few weeks but those went away. Good luck!
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MaryNY. After, and it was found trying to find why I kept gaining so much weight after chemo was over. Going off the gabepentin that I was on for hot flashes helped, but, getting started on synthroid for the hypothyroidism made the biggest difference. I'd have to say it was probably about 6 months after chemo maybe a little longer, started subclinical for me too. It progressively got worse and we had to keep going up on the synthroid. I've always felt like the chemo just did too much damage to the thyroid and it slowly stopped working. At least that's what it felt like
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Kate: I think the same thing about there being a link to chemo. I started to gain weight as soon as I finished chemo. At first I didn't really notice as I was just so happy to have my appetite back and that food was starting to taste like food. Then there were the days of exhaustion during rads, still eating but barely getting any exercise. The tiredness continued after rads though I'm not so bone tired and I try to do a good bit of walking, but still the pounds keep piling on.
How long were you on the snythroid before noticing an improvement.
I can't blame the weight gain on Tamoxifen as I didn't start that until I finished rads.
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Hi. I've been on Tamoxifen and this November, it'll be two years. Iv'e had no problems on it. I had to switch to Tamoxifen after starting on Arimidex right after chemo. Then I was having really bad joint and extremity pain and weakness, so they switched me to the Tamoxifen. Gradually the pain and weakness got better.
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Thank you-Thank you-Thank you Cyborg for your post. It is wonderful to read some many postive replies. I was so scared to put that first pill in my mouth. Now I take my Tamoxifen pill every morning and sigh a breath of relief knowing I am doing everything I can to keep that cancer as far away from me as possible. If I've had side effects, I can't tell if they are from the Tamoxifen or just from being 55 and recovering from 7 months of breast cancer treatments.
Wishing everyone here good health and much hapiness!
Sheri
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MaryNY: it took about a month to notice a difference. When SIL was hyperthyroid and went through ablation then started on sythroid they told her to expect a year before they found the right dose and had things stabilized.
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I started Tamoxifen in Nov 2011. So far the only SE (that I am aware of) is that I have some hot flashes. The frequency of them is less then at the begining.
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Hi Cyborg,
I'm glad I came across this Tamoxifen thread you started. I read through the posts and gave me a lot of feedbacks,
I started Tamoxifen on Dec. 29th. I was irritable, extremely tired and sleepy for the first two weeks. Perhaps, the side effects have started levelling off by mid-January.
I am still feeling tired but then, I also started work and school three weeks ago. I am in constant monitoring of how my body feels.
Hope you are well:-)
Laureen
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Almost finished with third month and no terrible SEs. I actually think I woke up with night sweats more often BEFORE the tamoxifen. Go figure. I did notice I was very cranky the first month but that also could have been from returning to work after surgery, etc. I notice a different discharge but that's it. For anyone feeling scared about starting tamoxifen I would suggest giving it a try and then you are more able to decide if the SEs you experience are worse the the benefit you get from taking it.
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Hello everyone...I started taking Tamoxifen 4/14/12 and in the beginning, aside from some chills, I had no noticeable side effects, but I realize it's only been a little over a month so that may change...my appetite isn't great, but I had been on Wellbutrin for a while before my dx, which curbed appetite, and I lost a lot of weight, but had to discontinue that before starting the Tx...I stopped that in February and dont know how long that takes to get out of one's system...distaste for food is a listed s/e for tx....I had been on Depo-Provera injections for years after having fibroid surgery, and had to stop those, but my cycle hasn't returned ( frankly, I hope it doesn't, but I may not get that wish )...believe me, I was scared by all the stuff I was reading too...I wish my appetite was better, but overall, so far so good for me..
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Hi Cyborg,
I have been on tamoxifen since the beginning of April and am happy to be on it. The studies show good benefit for taking it so I feel that I am doing all I can do to prevent a recurrence.
No serious SE's, just the expected hot flashes (I was premenopausal before starting). Major benefit - no more Periods!! I do have some pimples I did not have before starting it, but not bad. My breasts are now also softer as I am off the Pill and on the anti-estrogen so the fibrocystic areas have gotten much better. Overall, I am quite happy to be on Tamoxifen.
Good luck and hope this helps you make a decision.
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Hi - been taking it since March and other than hot flashes not to big of a deal. I do get the occasional leg cramp but believe it or not drinking Tonic Water when I feel like I'm going to get them helps - onco told me that!
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Hi - been taking it since March and other than hot flashes not to big of a deal. I do get the occasional leg cramp but believe it or not drinking Tonic Water when I feel like I'm going to get them helps - onco told me that!
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Hi everyone,
I'd like to add my positive experience to the list. 7 weeks in, and the hot flushes were so mild today I did't even notice them. There is so much hope and so much to live for. Please don't let the fear limit you when there is so much to take pleasure in life. I've decided to share my positive experience of post-treatment experience as a way of sharing hope with many others going through this process. http://pinkandapple.wordpress.com/2013/05/18/day-of-miracles/
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Hi, I realize this is an older thread, but it has helped me very much. I started Tamoxifen this week for therapy for lumpectomy last month (atypical lobular hyperplasia ). My doctor was reassuring, but ALL I've seen until now has been posts of nightmares. I was really starting to wonder if I had made the right decision. These posts about mild SE or none at all are wonderful to read. I know this can be a very negative experience for anyone, but please, post more positive notes. "Let us build each other up..." Romans 14:19
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Hi. Joy_1 I too just started Tamoxifen last week and was so relieved to come across this post, even though it is older. All the posts are so positive and reassuring. Lets keep it going!
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Just wanted to say to all the contributors to this topic thank you. Great to hear non negative experiences.
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bumpagab---I just wanted to post and say that I did fairly well on Tamoxifen. I just finished 5 years in Feb and had the BCI test which showed no benefit from continuing so I'm done. I had the usual joint pain which was 90% relieved by taking Gaia turmeric and a ginger supplement per my holistic breast doctor's recommendations. I also took magnesium which helped with the joint pain, stopped my constipation completely, helped reduce hot flashes and actually helped me sleep as well. Per my BS and MO, I added a good fish oil with high (+1000mg) DHA/EPA, 5000IU of Vit D (which most women who get BC seem to be low in) and a baby aspirin that I ended up taking twice a week instead of daily due to excessive bruising. My MO feels that dose is just as good as daily. I walked into a gym for the first time in my life (exercise helped stop SEs more than anything), got my first massage and now thanks to overhauling some aspects of my life, I feel the best I've ever felt in my 54 years! Tamoxifen can be doable. Maybe not for everyone, but with the help of folks here, I think you can do it.
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I am on week 6 of Tamoxifen and so far the side effects have been fine. Warm flushes, pelvic heaviness which resolved, tiredness, bleeding gums which resolved and not much else. I take magnesium, calcium, d3, Glucosamine, fish oil, and the odd iron tablet.
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Thanks to all the many contributors to this thread. I read lots of the early responses and after scanning the signatures, I see very few have since had recurrences. This is HUGE, ladies. I will start on Tamoxifen as soon as radiation is done in two weeks and I am looking forward to getting on it and staying well on it.
My plan is to continue exercising regularly, eating well and continuing taking the supplements I take (Vitamin C, B complex, D3, Iron and magnesium). I will continue to watch this space
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Sorry to be a party pooper. However this just shows that everyone reacts differently.
I started Tamoxifen in January. I have off and on nausea - it seems to vary depending on the manufacture of the drug, leg cramps, yucky vaginal discharge - yet strangely enough, also very dry external tissue that is very tender and raw - it even hurts to just walk sometimes. Happily, only very mild hot flashes. I'm not a fan of the drug but am too scared to not take it.
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Honestly, if it weren’t for the hot/cold flashes, I would not be able to tell I was taking anything. Had discharge for maybe a week at the beginning, but that went away. Skin is kinda dry, but I could chalk that up to winter. Joints are stiffer, but I need to be exercising, and I’m not really. Oh, there is the facial hair...that’s definitely from Tamoxifen, but there’s creams to take care of that, and plenty of women who need them Without being on it! So I had to suck it up and buy some. Totally manageable.
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I’ve only been on it for a month. My hot flashes from chemo never subsided, so I’m assuming it’s the Tamoxifen. Definitely not as frequent or as intense as with chemo - I can handle them without any medications. I can feel a bit of nausea in the morning if I don’t drink enough water with the pill . I find if I exercise and drink enough, I feel almost normal!!
I’m hoping things keep going this way for me
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I was given Tamoxifen by my oncologist yesterday and still hesitating to take it although it is in my hands now. It is because I was told about its potential side effects, so I am very scared. I hate to get any health troubles that are caused by Tamoxifen. I was diagnosed with BC at 32, underwent a single mastectomy and will have reconstruction surgery in June. Although I am a BC patient and having a tissue expander in my left breast, I have been feeling well and healthy, just having some emotional problems regarding to being a BC patient but struggling to beat it.
My oncologist encouraged me to try Tamoxifen as I showed him my hesitation. He said he would keep his close eyes on me and will stop if any serious side effects happen to me. Yesterday was supposed to be my first day of taking Tamoxifen but I didn't. I wish its side effects will stay away from me when I take it but who knows.
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TammyKTam---I felt the same as you. It took me about 2 weeks of looking at it before I finally convinced myself that a 50% reduction in recurrence risk was worth any SEs. I started on Feb 1st so you could start April 1st! Make it like "new month, new life!" I did have SEs but all were doable and everyone on here will help with ideas to mitigate them. Many woman do just fine. You just won't know till you start! Try to look at it as the little white pill that could save your life down the road!
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Hi lala1,
It's interesting that we are on the same boat. I also share with you the same idea of taking Tamoxifen as I started today, April 1st to make it like "new month, new life!". Plus, it is easy to remember
Because it's just my very first day, I still haven't been through any SEs yet, but I will let you guys know if they happen to me.
Wish you all the best lala1
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Thank you, Cyborg, for asking the question, and to everyone who responded. I googled "positive user responses" because all the user responses I found online were so scary!!! My cancer has already metastasized and I've been taking Ibrance + Femara for 18 months with very few side effects. Now that treatment has stopped working, my onco is recommending Tamoxifen or Faslodex.... I feel so much more optimistic having read all your posts!!! Thank you.
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