"Tamoxifen Road" - Support and Encouragement
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It's possible that this side effect will go back away again. I would try naproxen if it helps and give your body time to respond.
My doctors have been moving appointments to telemedicine or phone - can you call your doctors' office and see if they can do the same?
Trying to switch to a different time of day is totally valid. Other possibilities are splitting the dose and taking half in the am and half in the pm, trying other generic brands, and trying a lower dose. If all else fails, there are other SERMs (my onc approved me doing toremifene) or OS+AI. Hopefully this side effect will dissipate on its own but even if it doesn't, it does not mean you are looking at 10 years of pain ahead!
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I've been on it for about two months and will likely go off it. The psychiatric symptoms - constant rage, constant irritation - are unbearable, and they'll likely kill me before the cancer does.
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Hi, I've been on tamoxifen for 2 months now, and I can't believe how dry the skin on my feels. Does anyone have suggestions? I have humidifiers in my main rooms, put on 2 different creams on my face each day, and drinking more water than I normally do, but I still feel like my skin is super dried out!
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I talked with two medical staff today (virtual visits aren't smooth yet so has to call in twice) and both agreed I should go on Prozac. I asked both of them in my separate "visits" about tamoxifen and both said it was fine. Went to pharmacy and asked pharmacist who also said Prozac is fine with tamoxifen. So I'm going for it! Struggling too much right now, grateful I could get this.
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Hi Mdmom, Ask your MO if you can take a Vitamin E supplement. This was recommended to my daughter for dry skin as a side effect from a medication. Tamoxifen gave me very dry eyes and I take fish oil for that. It takes a few weeks for this to help.
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Good luck, Together! I hope it brings you the relief you need.
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Yes, me too but I get them a lot less. I am 8 months post surgery though now and got my sleep and hot flashes under control with 300 to 600mg of gabapentin....this stuff has been a Godsend for me. I have always been on Lexapro 10mg for anxiety so that is a cushion too. I am surprised when I come on these boards that Gabapentin is not mentioned more. I used to be a pharmaceutical rep so I guess that is why I obsessively looked for a solution pharmaceuticals for my horrible hot flashes which seemed to be 24 hrs a day and it made my body then feel tense....could not sleep...hello anxiety. Look it up....no "high" from it. Vitamins did not work and I tried everything. Lexapro alone did not work either.
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Hi everyone .. I had lumpectomy , radiation And have been taking tamoxifen for 1.5 years now ... my periods never stopped after staring tamoxifen ... but I’m experiencing heavy flow on 1st day of my period .. I checked with my gynecologist and in ultrasound she found thick lining on my uterus .. I’m very worried .. has anyone gone through this .. looking for some advice please. !! TI
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I had Grade 1 Ductal Carcinoma in my right breast in Oct 19, I had a lumpectomy and one lymph node removed that was negative and 33 Radiation Treatments, thankfully everything went perfect and all is well. My Her2 was negative and my chance of recurrence is less than 3% and no family history, my Oncologist put me on Tamoxifen and Effexor and I am struggling with the side effects; dry skin on my face and ears, dry itchy eyes, red around my eyes, dry lips, dry mouth, scratchy throat and voice, itchy scalp, night sweats, sleeplessness, tiredness, no energy, very emotional, coarse hair and suicidal thoughts. After my Radiation treatments I felt so good, I looked really good and now I feel horrible and look even worse, my face is swollen and hot, I don't know how much longer I can take it. I am 54.
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Bless your heart Antiquejules. I took Tamoxifen for 5 years. Luckily I was able to quit taking it after I hit the 5 year milestone.
I had several of your side effects like sweating and difficulty sleeping sometimes. You apparently done very intolerable ones.
Have you talked to your doctor about it? You have to have a quality of life. Your prognosis sounds good and you do know it’s still your call to take it or not. There are a number of women who have ceased taking it for some of the same side effects you are experiencing.
Of course it’s a gamble but it’s still your decision.
Good luck.
Diane
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Antiquejule, when I started on Tamoxifen 20 mg, 4 months ago, I had hard to tolerate SEs. My MO advised to go off for two weeks and then restart with 10 mg. I've been on 10 mg for a couple of months and the SEs are not as bad as before. I am hoping they will ease off even more, as I read and heard from so many. If you would be confortable with it, see what your MO had to say about your going on 10mg. Maybe that will help. There are studies saying that 10 mg are as good as 20. Just so you know, I also had a Grade 1 tumor. Best of luck!
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A few days ago I fell and twisted my ankle while taking my daily walk. My entire ankle and a large part of my foot badly bruised, I am limping around but if I stay up too long foot swells. I contacted my oncologist office asking if this puts me at additional risk of blood clot forming and Physian Assistant told me no as long as I keep moving. But the more I move, the swelling happens. I think that I will go to foot / ankle specialist for additional information about this injury, but meanwhile has anyone in this situation temporarily stopped taking Tamoxifen while an injury heals?
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Celand, Yes, I didn't start the tamoxifen right a way because I had a knee injury and wanted it to heal. Then I stopped it prior to my hysterectomy and after for a better recovery. Even though my MO said not to stop it I feel I made the right choice for me.
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Flashlight,
Thank you for your response, I have been very worried about how Tamoxifen affects the healing process, I have a telehealth appointment this afternoon with my GP, hopefully he will give me insight on which direction that he thinks would be appropriate in this situation. Blood clots developing is what really scares me. Will post his response after my appointment.
Celand
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Ok, just had a telemedicine appointment with my GP, he is sending me for an Xray of my ankle. He did say that I needed to press down on both sides of my ankle and move it to prevent clots from forming. Also, he says it is OK to temporarily stop taking the Tamoxifen while this heals although he didn't say how long.
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Hi Celand, I stopped it for about 6 weeks. You will know more after you get the Xray done. Best wishes!
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Flashlight,
Just heard back from Dr and my ankle is fractured. So, this changes the plans for me. I emailed my oncologist to let her know that I am concerned about the possibility of blood clots forming due to my injury, and that I will not be taking it until my ankle heals. Hopefully, she will be understanding and supportive.
Celand
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YIKES! Glad you got that follow up!
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Celand, So glad your GP ordered the Xray!! When I talked to my surgeon about Tamoxifen and how I felt he said he felt since I was going to be on it for a long time a short break shouldn't hurt. I was worried about the blood clots as well. My MO kind of brushed me off saying the chance was very small and I needed to move around as much as possible after. I was also worried about blood clots during the surgery. I was given 4 injections of heparin while I was there. I wonder if you will hear back from your MO and if she will say to stay on the Tamoxifen. Take care.
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Yes, so am I! Guess the fact that I have lived for 55 years and never broken a bone is remarkable! Now, I wait to hear from orthopedic dr office, hopefully soon.
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Flashlight,
I heard from my MO office this morning. She is supporting my decision to stop the Tamoxifen until my ankle heals and I am mobile again. I am so grateful to have her as my Dr.
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Hope you're better soon Celand! Thanks for starting this exchange. It never would have occurred to me to think of blood clot risk from a severe injury, and how Tamoxifen might play into that. I'm grateful to be armed with information now.
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Miriandra,
Thank you! Finally got in to see orthopedic dr this morning, will have to wear boot up to my knee for 6 weeks, also can put no weight on my ankle, he doesn't want bone to break more. I am having a difficult time using my crutches, I think that I will get a knee scooter. That seems like it will be an easier option for me. Funny thing is this orthopedic dr told me that I could continue to take the Tamoxifen that he thought a blood clot was not likely to form, but I am not going to take it! He needs to stick to his specialty! That is what I like about these boards, we all share information and experiences and learn from each other. Then we can be our own best advocates!
Celand
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Hello! I’m new to this site. Just got prescribed Tamoxifen 20 mg and I’m supposed to start today. However I’m really scared due to all of the possible regular and “life threatening” side effects. It’s been two hours since I opened the bottled but haven’t had the courage to pop the pill. This thread seems to be more positive than others on here and I’m looking for some positive encouragement. Thanks in advance 🙂.
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SandraT09, glad you found our community, and specifically this thread! It's difficult to embark on a new treatment, not knowing what side effects you may experience. It's always about weighing the pros and the cons to your personal situation. Please keep us posted
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Hi Sandra!
I started taking 20mg of Tamoxifen 12 days ago. I was scared, like you. I had read some of the horror stories but I also read some good stories. I take mine at 9:30 at night. Right before I go to bed. So far, so good. They started me on Kadcyla the same day and for the first 5 days I had muscle and joint pain like I had run a marathon. But I can’t blame it on either one because I just don’t know.
Don’t be afraid. Just be mindful of any changes that you need to report to your doctor
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SandraT09,
I have been taking Tamoxifen for almost three years, although I did have a few side effects, it has been tolerable for me. Just remember that Tamoxifen, like other medications have side effects. As my surgeon told me, the worst side effects can happen but they are rare, so I have kept that in mind as I take this and contact my doctor if I notice anything that seems unusual for me or worries me.
Celand
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SandraT09,
We are all different, I'm not saying anything new, that's for sure. There are all kinds of stories from those on Tamoxifen. Among them, there are so many who have been experiencing very few SEs. You might be one of those, who knows? Also it might help to think that, in fact, you could stop at any time or seek medical advise, should you find it hard or intolerable. What I did before my first follow up, I read up as much as I could find about Tamoxifen's side effects. And yes, the more I read, the more questions I got. So I wrote down pretty much all my questions/worries. And boy, it was a long list! I was afraid my MO would never let me run them all. But guess what? He didn't dismiss any of them and even managed to dismantle so many of my fears by addressing them patiently and knowledgeably. The worring part is not alltogether gone, but I am convinced I have better odds by staying on Tamoxifen. (I've been taking it for three months now.) Best of luck!
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Hi. I haven't been here for quite some time, having decided up til now not to even try it. I don't see any updates to your post and am curious if the dizziness progressed or was resolved. One of the things I was worried about was dizziness, as I heard it can cause tinnitus thus would affect inner ear and I had permanent inner ear damage from one of the first non-steroidals that still causes dizziness if I drink any alcohol or too much coffee. The thought of any worse or more frequent dizziness was enough to keep me from starting up until this point (not to mention the blood clots and stroke) which is now quite some time after surgery and radiation. But now I'm getting worried about recurrence, thinking if it can still help if you have that long gap between surgery and taking it maybe I will reconsider.
I hope you are doing well.
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I’ve taken Tamoxifen for a month and am very tempted to throw it away. SE are nasty and I worry about the impact it has on the body vs the very small statistical chance of recurrence. Is there anyone on this forum who has risked NOT taking Tamoxifen? It’s going to take courage as it goes against all medical advice.
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