Tamoxifen Side Effects

mmontero38
mmontero38 Member Posts: 1,510
edited March 2023 in Breast Cancer #1
Ok, I know about the weight gain, vaginal discharges, muscle cramps especially my calves and hot flashes, but now my finger joints are starting to swell. I had to remove my wedding ring because my fingers are swelling and the joints also. I also have stiffness and and overall achiness in the joints of my fingers. I can't make a fist because it feels like the fingers are can't close. I've been on the tamoxifen since January 2008. I will be calling my oncologist tomorrow, but those of you who have been on it a while, have you also experienced this? Hugs, Lili

PS. I haven't posted or answered much of your posts because it really hurts to type.
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Comments

  • Wibby
    Wibby Member Posts: 27
    #2
    So That's It
    Lili,
    I've been on Tamoxifen since June 2008. I've had the muscle cramps, vaginal discharge, but no hot flashes. However, my arthritis (at least I thought that was what it was) has gotten much worse in my fingers. I didn't realize that joint stiffness could be a side effect. I just assumed my aging process was speeding up. Typing is ok for me, but trying to open jars or water bottles has become very difficult. I have only one joint which is very swollen, but it throbs at night sometimes. Hmmm..
    Thanks for the enlightenment!
    Libby
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #3
    Can you stop the tamoxifen
    Can you stop the tamoxifen if it is having that many side effects on you? I am supposed to take it after radiation and now I am scared to. I don't want all of those side effects. To me..it isn't worth it. Why go thru that for 5 years? Hope you feel better!
  • beesharpe
    beesharpe Member Posts: 9
    #4
    Tamoxifin side effects
    Wow
    the side effect of hot flashes is not good since I already have hot flashes(I wonder will they get worst).I am suppose to start on Tamoxifin also for 5 years after treatment.I have one more chemo treatment to go on April 30th then I start rad.
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #5
    So, tamoxifen is really bad
    So, tamoxifen is really bad to be on it sounds. I think I will find out the percentages of what it will do for me before I actually start taking it. I want a quality life when I finish radiation, not 5 years of pain because of a drug that doesn't do that much for me. I hope you feel better mmontero.
  • rjjj
    rjjj Member Posts: 1,822 Member
    #6
    Jeanne D said:

    So, tamoxifen is really bad
    So, tamoxifen is really bad to be on it sounds. I think I will find out the percentages of what it will do for me before I actually start taking it. I want a quality life when I finish radiation, not 5 years of pain because of a drug that doesn't do that much for me. I hope you feel better mmontero.

    I am worried also
    I will also be going on this. Can the Onc. switch you to another one with hopefully not the same side effects Lilly? Please keep us posted on what you hear. and i am praying right now that things get easier for you.
    hugs
    jackie
  • Eil4186
    Eil4186 Member Posts: 949
    #7
    Hi Lilly, I have been taking
    Hi Lilly, I have been taking Tamoxifen for about 28 months now and as I do have all the other side effects you mentioned, I have not noticed any swelling or soreness in my hands. I could see that would be very debilitating. Perhaps your onc. could give you a break from taking the tamoxifen to see whether or not the symptoms go away. If they do, then you know it was the med. but what then? Maybe he/she would lower the dosage? Let us know how you make out. Eil
  • tasha_111
    tasha_111 Member Posts: 2,072
    #8
    Eil4186 said:

    Hi Lilly, I have been taking
    Hi Lilly, I have been taking Tamoxifen for about 28 months now and as I do have all the other side effects you mentioned, I have not noticed any swelling or soreness in my hands. I could see that would be very debilitating. Perhaps your onc. could give you a break from taking the tamoxifen to see whether or not the symptoms go away. If they do, then you know it was the med. but what then? Maybe he/she would lower the dosage? Let us know how you make out. Eil

    Tamoxifen
    Hi, the worst that I have had has been the night sweats....not every night, probably one night in 4, well dealable with. The only other problem I have with Tamoxifen is remembering to take it......LOL

    Hugs Jxxxxxxxxxxxxxx
  • mmontero38
    mmontero38 Member Posts: 1,510
    #9
    Ok, I spoke to the
    Ok, I spoke to the oncologist who immediately told me to stop taking it. I stopped on Friday and already my hands are much better and not as painful. I felt like a person with debilitating arthritis, and my joints are all swollen. So far, it seems to be the tamoxifen that is causing ME to have these side effects. I want to stress that not everyone has these side effects, as medications affect everyone differently, so please don't base your decisions on my experience. I have to call him back on Tuesday and report in, I think that he may then switch me to something else. I'm not sure but I will most certainly keep you posted. Happy Easter everyone, Hugs, Lili
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #10
    mmontero38 said:

    Ok, I spoke to the
    Ok, I spoke to the oncologist who immediately told me to stop taking it. I stopped on Friday and already my hands are much better and not as painful. I felt like a person with debilitating arthritis, and my joints are all swollen. So far, it seems to be the tamoxifen that is causing ME to have these side effects. I want to stress that not everyone has these side effects, as medications affect everyone differently, so please don't base your decisions on my experience. I have to call him back on Tuesday and report in, I think that he may then switch me to something else. I'm not sure but I will most certainly keep you posted. Happy Easter everyone, Hugs, Lili

    I am so glad that you are
    I am so glad that you are feeling better Lili! I bet they can switch you to something else. I hope so as you should not have to go thru that. The only medication I can take is Tamoxifen because that is the only one that my insurance has approved to take. But, if I have those side effects, I am sure I will just stop it. Has anyone ever just stopped it forever or not taken it at all? And, what percentage does it offer of no recurrence? Is it that big of a deal?
  • mmontero38
    mmontero38 Member Posts: 1,510
    #11
    Kristin N said:

    I am so glad that you are
    I am so glad that you are feeling better Lili! I bet they can switch you to something else. I hope so as you should not have to go thru that. The only medication I can take is Tamoxifen because that is the only one that my insurance has approved to take. But, if I have those side effects, I am sure I will just stop it. Has anyone ever just stopped it forever or not taken it at all? And, what percentage does it offer of no recurrence? Is it that big of a deal?

    I'm not sure Kristin, but I
    I'm not sure Kristin, but I will be finding out. If my risk is very low then I think I will opt not to take anything because then the pros will definitely not outweigh the cons. But then again, if it reduces by chance of recurrence by a lot then I will have to take something else that does not give me such hard side effects. Hugs, Lili
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #12
    Hi Lili, sorry I'm late in
    Hi Lili, sorry I'm late in posting, I haven't been on the computer much lately. And YES, I had all those se's. Holy Moly, the muscle cramps would wake me in the middle of the night and I'd jump out of bed and stomp my feet trying to get rid of it. The joints weren't too bad but the swelling was everywhere. My eyes were the worst. Incredibly dry, burning and sore. They were at half mast most the time. I went to Arimidex and had problems after about 2 1/2 mos. So now I've been off everything for about a month now and soon will be starting Aromasin. I hope you have better luck with the AI's then I am.
    love
    jan
  • mmontero38
    mmontero38 Member Posts: 1,510
    #13
    phoenixrising said:

    Hi Lili, sorry I'm late in
    Hi Lili, sorry I'm late in posting, I haven't been on the computer much lately. And YES, I had all those se's. Holy Moly, the muscle cramps would wake me in the middle of the night and I'd jump out of bed and stomp my feet trying to get rid of it. The joints weren't too bad but the swelling was everywhere. My eyes were the worst. Incredibly dry, burning and sore. They were at half mast most the time. I went to Arimidex and had problems after about 2 1/2 mos. So now I've been off everything for about a month now and soon will be starting Aromasin. I hope you have better luck with the AI's then I am.
    love
    jan

    Thanks Jan for posting. I
    Thanks Jan for posting. I seem to have had all the same side effects as you. I had to have my tear ducts plugged because of extreme dryness, and I've had so many charlie horses in my calves that I am now being treated with acupuncture because the muscle has spasmed so tightly that physical therapy is not giving me any relief. It just seems that it all built up and decided to attack all at once. The worst was the joint pain in my fingers. I couldn't close my hand to even grab anything never mind making a fist. I've now been off them since Friday and though I'm still a little stiff in the hands it is not as painful and I can make a fist. Wooohooo! I have to call him tomorrow and we'll see what he gives me then. I'm hoping he gives me a little longer break before starting something else, maybe by then my calves will uncramp. LOL Hugs, Lili
  • Noel
    Noel Member Posts: 3,095 Member
    #14
    The side effects sound
    The side effects sound awful. I hope that you all feel better soon! It is so sad that you have to go thru this after all you have already been thru. I wonder if anyone has taken Tamoxifen with no side effects or very few? I would love to hear from them as this scares me because I am supposed to take Tamoxifen for 5 years after I finish radiation. I may just say no and not take it....
  • cruf
    cruf Member Posts: 908
    #15
    Noel said:

    The side effects sound
    The side effects sound awful. I hope that you all feel better soon! It is so sad that you have to go thru this after all you have already been thru. I wonder if anyone has taken Tamoxifen with no side effects or very few? I would love to hear from them as this scares me because I am supposed to take Tamoxifen for 5 years after I finish radiation. I may just say no and not take it....

    Tamoxifen
    Noel, I took Tamoxifen for 5 years and can only complain of hot flashes and vaginal discharge, both tolerable. I did have some joint pain in my elbow but I blamed tennis for that. Once finished with Tamoxifen, I took Femara for 8 mos. then Aromasin for 1 1/2 years and it was pretty bad. I won't go into it now but I have been off them since Oct. 2007, and I still have pretty bad joint pain etc... So for me, Tamoxifen was pretty easy! Good luck and feel better. HUGS!! Cathy
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #16
    No Side Effects from Tamoxifen
    Hello, Lili. I've just read thru everything here... So sorry you had such a hard time with the Tamoxifen. Am also glad your doctor is working with you to find something else that will diminish your risk of BC recurrence, without all the discomforts. Heartfelt best wishes to you, dear.

    To everyone else who posted here, and because someone specifically asked: I took Tamoxifen for 2 years, following surgery/chemo/rads. Experienced NO side effects, whatsoever. Could've been taking a "sugar pill" for all I knew. Even asked my onc at one point if it was "working"!?! Then, got switched to Arimidex - 3+ years now, and counting. (A whole different story...) Do these drugs "work"? For me, so far, at least - yes - since I'm still here.

    Please - to all who may have Tamoxifen in their future treatment plan: Do NOT say no to this medication because you're afraid of it based on the experiences of others. That could be a very dangerous & life-threatening decision, indeed. At least TRY it, if it's strongly recommended by your doctor. Everyone is different. Not everybody has the same symptoms. Remember that there are POTENTIAL side effects with ALL medications - even OTCs, like aspirin & Tylenol. When the appropriate time comes, make your own personal decision based on your own risk of recurrence % at the end of all invasive treatment and how much lower that % gets with Tamoxifen. Please base your decision on that knowledge, not fear of something you haven't even tried.

    For me, almost 6 years out from diagnosis now (surgery/chemo/rads) - and WITH & INCLUDING the Tamoxifen/Arimidex "combo" medication - my current risk of recurrence level stands at 20%, as I was told just last month. And it's going to stay there, for a long time. Personally, I think I'd do just about ANYTHING to get that #% even lower. There's simply nothing else out there for me, and others like me, at the moment.

    Kind regards, Susan
  • mmontero38
    mmontero38 Member Posts: 1,510
    #17
    Christmas Girl said:

    No Side Effects from Tamoxifen
    Hello, Lili. I've just read thru everything here... So sorry you had such a hard time with the Tamoxifen. Am also glad your doctor is working with you to find something else that will diminish your risk of BC recurrence, without all the discomforts. Heartfelt best wishes to you, dear.

    To everyone else who posted here, and because someone specifically asked: I took Tamoxifen for 2 years, following surgery/chemo/rads. Experienced NO side effects, whatsoever. Could've been taking a "sugar pill" for all I knew. Even asked my onc at one point if it was "working"!?! Then, got switched to Arimidex - 3+ years now, and counting. (A whole different story...) Do these drugs "work"? For me, so far, at least - yes - since I'm still here.

    Please - to all who may have Tamoxifen in their future treatment plan: Do NOT say no to this medication because you're afraid of it based on the experiences of others. That could be a very dangerous & life-threatening decision, indeed. At least TRY it, if it's strongly recommended by your doctor. Everyone is different. Not everybody has the same symptoms. Remember that there are POTENTIAL side effects with ALL medications - even OTCs, like aspirin & Tylenol. When the appropriate time comes, make your own personal decision based on your own risk of recurrence % at the end of all invasive treatment and how much lower that % gets with Tamoxifen. Please base your decision on that knowledge, not fear of something you haven't even tried.

    For me, almost 6 years out from diagnosis now (surgery/chemo/rads) - and WITH & INCLUDING the Tamoxifen/Arimidex "combo" medication - my current risk of recurrence level stands at 20%, as I was told just last month. And it's going to stay there, for a long time. Personally, I think I'd do just about ANYTHING to get that #% even lower. There's simply nothing else out there for me, and others like me, at the moment.

    Kind regards, Susan

    Hi Susan: Thanks for your
    Hi Susan: Thanks for your comments. I did stress that you shouldn't base your decisions on my experience, since not everyone reacts the same. The doctor is now putting me on arimidex and we'll take it from there. Reading the side effects is a little scary since they seem to be worst then the tamoxifen, but I'm willing to try all the meds out there to give me a better chance at fighting recurrence. I was on the tamoxifen for 15 months before the side effects became intolerable. It affected me from the start but I was able to tolerate it until this past month. We'll see how I do with the arimidex and if not we'll try aromasin and see how that works too. Hugs, Lili
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #18
    mmontero38 said:

    Hi Susan: Thanks for your
    Hi Susan: Thanks for your comments. I did stress that you shouldn't base your decisions on my experience, since not everyone reacts the same. The doctor is now putting me on arimidex and we'll take it from there. Reading the side effects is a little scary since they seem to be worst then the tamoxifen, but I'm willing to try all the meds out there to give me a better chance at fighting recurrence. I was on the tamoxifen for 15 months before the side effects became intolerable. It affected me from the start but I was able to tolerate it until this past month. We'll see how I do with the arimidex and if not we'll try aromasin and see how that works too. Hugs, Lili

    I just want to wish you well
    I just want to wish you well on the Arimidex Lili! Tamoxifen sounds so scary and so horrible. I will probably try it, but, if I have bad side effects....I will stop. Good luck to you!
  • lynn1950
    lynn1950 Member Posts: 2,570
    #19
    Late reply
    Lili - You are always so positive and supportive of everyone who writes. I am so sorry to have missed your post earlier and am so late to say that I am saddened that you have experienced so much trouble! I have been on arimidex now since October, but aside from tolerable? night sweats and some shoulder joint pain, it has been OK so far (I know 4 1/2 years to go). I just want you to know I wish you the very, very, very best. Love, Lynn
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #20
    mmontero38 said:

    Hi Susan: Thanks for your
    Hi Susan: Thanks for your comments. I did stress that you shouldn't base your decisions on my experience, since not everyone reacts the same. The doctor is now putting me on arimidex and we'll take it from there. Reading the side effects is a little scary since they seem to be worst then the tamoxifen, but I'm willing to try all the meds out there to give me a better chance at fighting recurrence. I was on the tamoxifen for 15 months before the side effects became intolerable. It affected me from the start but I was able to tolerate it until this past month. We'll see how I do with the arimidex and if not we'll try aromasin and see how that works too. Hugs, Lili

    Good luck, Lili
    I'm glad you're going to try Arimidex. And I'm truly hoping it won't affect you so terribly that you'll choose to stop taking it.

    Sincere best wishes for good luck with it! Hoping you'll experience no or minimal side effects!

    Kind regards, Susan
  • mmontero38
    mmontero38 Member Posts: 1,510
    #21
    lynn1950 said:

    Late reply
    Lili - You are always so positive and supportive of everyone who writes. I am so sorry to have missed your post earlier and am so late to say that I am saddened that you have experienced so much trouble! I have been on arimidex now since October, but aside from tolerable? night sweats and some shoulder joint pain, it has been OK so far (I know 4 1/2 years to go). I just want you to know I wish you the very, very, very best. Love, Lynn

    Thanks girls for all your
    Thanks girls for all your encouragement. I will be starting the arimidex as soon as I'm off all these muscle relaxers I'm on for a stiff neck. LOL. What else can go wrong???? But, I will keep you posted as to the side effects. I'm hoping to be able to say that other than night sweats and vaginal discharge, there are no other side effects. You girls are all great. Thanks and many hugs, Lili

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