Quitting Tamoxifen

kellyk123
kellyk123 Member Posts: 23
Hi All,

I started Tamoxifen (after chemo and radiation) in January 10. I was taken off of it for 3 months in June 10, because my hair was coming back in fine, and sparse with huge bald spots ant he docs didn't know why. They said I could try going off the tamoxifen to see if that was the cause. My hair stayed thin and sparse so I went back on around Dec. 10 and stayed on until end of May, '11. I started to feel more and more depressed and was already taking a high does of effexor. My hair never came back, I have gained weight despite all my exercise and healthy eating, I feel fatigued and very depressed.

I am also worried about the side effects of the tamoxifen....uterine cancer, blood clots, stroke...etc. Is it worth it to take? Anyone refuse tamoxifen? I can't go on this depressed. Plus....my hair, two years out, is not normal at all. You can see my scalp and I still can't go out without something covering my head.
Anyone else experience this??
Kelly
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Comments

  • butterflylvr
    butterflylvr Member Posts: 944
    Wow, now that's scary. I
    Wow, now that's scary. I will probably start tamoxifen next month, finishing my rads first. Don't like hearing about these kinds of side effects. Sorry no help from me Kelly, but I just wanted to give you a {{hug}}.

    Lorrie
  • mwallace1325
    mwallace1325 Member Posts: 806
    Kelly
    I'm post menopausal so never did the tamoxifen, but I had a similar experience with femera. My hair came back in pretty much same as before, but I had a whole list of other side effects. I stopped that after 5 or 6 months and went on arimidex. I quit that when I couldn't breathe. Saw my MO about a week ago and he asked me to give the arimidex one more try, since it's not supposed to cause breathing problems. After he explained again that it was at least if not more important than chemo, I decided to be a grown up and try it again. Since I've lost some weight, hopefully I won't have problems this time.

    I remember my MO giving me some sort of follicle something (sorry I can't remember what exactly it was) during my last few rounds of chemo. You might check with your onc and see if that's a possbility.

    Also, check to see if there's something you can take instead of the tamoxifen.

    Hope everything starts looking up for you.

    marge
  • kellyk123
    kellyk123 Member Posts: 23

    Kelly
    I'm post menopausal so never did the tamoxifen, but I had a similar experience with femera. My hair came back in pretty much same as before, but I had a whole list of other side effects. I stopped that after 5 or 6 months and went on arimidex. I quit that when I couldn't breathe. Saw my MO about a week ago and he asked me to give the arimidex one more try, since it's not supposed to cause breathing problems. After he explained again that it was at least if not more important than chemo, I decided to be a grown up and try it again. Since I've lost some weight, hopefully I won't have problems this time.

    I remember my MO giving me some sort of follicle something (sorry I can't remember what exactly it was) during my last few rounds of chemo. You might check with your onc and see if that's a possbility.

    Also, check to see if there's something you can take instead of the tamoxifen.

    Hope everything starts looking up for you.

    marge

    Ya know, Marge, my onc. said
    Ya know, Marge, my onc. said the same thing to me about tamoxifen, that it is more important than the chemo....so why did I get the chemo then?? I should have gone straight to the tamoxifen. I honestly don't think they know. I feel like these same treatments have been in the works for so long and they don't research to find out new ones that may work better because the drug companies make so much money off of us. I don't mean to sound so negative, but I have been reading the book, What Your Doctor May NOT Tell You about Breast Cancer, and it does make you wonder. I am just frustrated. Two years out and I am still very angry about all this. I was pre-menopausal going into this and was put into menopause with all those lovely side effects, now I have to choose between a re-bound of the breast cancer or uterine cancer, stroke, blood clots, weight gain, fatigue and depression, etc. They say it is only a 1% chance of getting the uterine cancer, but admit it does increase your chances, but that is what they said about my hair not coming back and I beat those odds too. Scream, breathe....okay.....I am not sure what to do. I just know I feel like crap on the tamoxifen and don't want to take any more drugs!!!!!
  • mwallace1325
    mwallace1325 Member Posts: 806
    kellyk123 said:

    Ya know, Marge, my onc. said
    Ya know, Marge, my onc. said the same thing to me about tamoxifen, that it is more important than the chemo....so why did I get the chemo then?? I should have gone straight to the tamoxifen. I honestly don't think they know. I feel like these same treatments have been in the works for so long and they don't research to find out new ones that may work better because the drug companies make so much money off of us. I don't mean to sound so negative, but I have been reading the book, What Your Doctor May NOT Tell You about Breast Cancer, and it does make you wonder. I am just frustrated. Two years out and I am still very angry about all this. I was pre-menopausal going into this and was put into menopause with all those lovely side effects, now I have to choose between a re-bound of the breast cancer or uterine cancer, stroke, blood clots, weight gain, fatigue and depression, etc. They say it is only a 1% chance of getting the uterine cancer, but admit it does increase your chances, but that is what they said about my hair not coming back and I beat those odds too. Scream, breathe....okay.....I am not sure what to do. I just know I feel like crap on the tamoxifen and don't want to take any more drugs!!!!!

    Kelly
    I'm sorry you're having such a hard time with the decisions and the drugs. In spite of anything I said, I understand your frustration, and the decision is a very personal one. I'm sure you'll make the one that's right for you.

    Lots of love and support coming to you.

    marge

    ps I did feel the same way when my MO told me about the importance of post treatment drugs. I'd have gladly given up the golden opportunity to feel like I was the walking dead during chemo.
  • mjjones453
    mjjones453 Member Posts: 155

    Kelly
    I'm sorry you're having such a hard time with the decisions and the drugs. In spite of anything I said, I understand your frustration, and the decision is a very personal one. I'm sure you'll make the one that's right for you.

    Lots of love and support coming to you.

    marge

    ps I did feel the same way when my MO told me about the importance of post treatment drugs. I'd have gladly given up the golden opportunity to feel like I was the walking dead during chemo.

    Kelly
    I have been on Tamoxifen since May of last year. So, I have been on it for over a year. I have had side affects, started with tiredness, bone pain,and hot flashes.I also have had pain with ovarian cysts, and other pelvic pain along with that. I went off the tamoxifen for a month, to see if the pelvic pain would go away, it did not. I went back on tamoxifen, and after a couple of weeks, all side affects except for cysts went away, I hardly know that I am on it. I know we are all handle meds differently, I have not experienced the mood swings, or hair loss, although I do know hair growth has slowed down. I don't have to shave the legs as often as before. I feel for you not knowing what to do! Hugs to you! Mary
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    I was on Tamoxifen for 2 1/2 yrs`
    without issues...then thickening of uterus and then bleeding....just had totall hystertomy 3 wks ago today due to side effects!

    I have to miss work 2 more weeks-total of 5 wks...I go back to my oncologist tomorrow and I am 99% sure i'll be put back on tamoxifen tomorrow...

    Denise
  • kellyk123
    kellyk123 Member Posts: 23

    I was on Tamoxifen for 2 1/2 yrs`
    without issues...then thickening of uterus and then bleeding....just had totall hystertomy 3 wks ago today due to side effects!

    I have to miss work 2 more weeks-total of 5 wks...I go back to my oncologist tomorrow and I am 99% sure i'll be put back on tamoxifen tomorrow...

    Denise

    Wait a second, Denise. You
    Wait a second, Denise. You mean you had a hysterectomy because of the side effects of tamoxifen? Yes, they say for sure tamoxifen does cause thickening of the uterus in 100% of the patients and that is why it can increase your chances of uteran cancer. I had pelvic pain when I was on it and don't any more. Please post an update to let us know if you were put back on it.

    Thank you everyone for your responses and for sending all the hugs and good thoughts. I hate that any of us have to go through this. I have to believe there is a better drug or way to beat this than some of the drugs they put us on.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    kellyk123 said:

    Wait a second, Denise. You
    Wait a second, Denise. You mean you had a hysterectomy because of the side effects of tamoxifen? Yes, they say for sure tamoxifen does cause thickening of the uterus in 100% of the patients and that is why it can increase your chances of uteran cancer. I had pelvic pain when I was on it and don't any more. Please post an update to let us know if you were put back on it.

    Thank you everyone for your responses and for sending all the hugs and good thoughts. I hate that any of us have to go through this. I have to believe there is a better drug or way to beat this than some of the drugs they put us on.

    Whoa Kelly!
    You can get uterine cancer all by yourself without Tamoxifen. Ask me how I know. Yes, Tamoxifen does add yet another risk factor to developing uterine cancer, but so do a lot of other things (being overweight, alcohol, early menarche, late menopause, etc.). The risk of recurrence without Tamoxifen is greater than the risk of uterine cancer from it. Many women are unable to tolerate Tamoxifen or the aromatase inhibitors for other reasons and some do not want to risk side effects and would rather take their chances. It's a personal decision, but also a medical one, and it deserves careful consideration. I don't know what I'd do if I wasn't tolerating Arimidex so well. And, I do worry about the side effects I can't feel or see.

    Now, about the hair thing. I bet we could be twins. Did you have Taxotere? It has been 9 months since my last infusion and I still look like a freak. Bald was better. I've had tests for thyroid, iron deficiency, and autoimmune disorders. I'm anxious to see my oncologist in a couple of weeks because she insists it cannot be from the chemo. Right. I do know hair thinning can be a side effect of the Arimidex I'm taking, but I have actually heard of many women being stuck without hair after Taxotere. I hate it, but I hate cancer more. Like you, I can't (won't) go out without my head covered. And summer is coming. .

    Suzanne
  • kellyk123
    kellyk123 Member Posts: 23

    Whoa Kelly!
    You can get uterine cancer all by yourself without Tamoxifen. Ask me how I know. Yes, Tamoxifen does add yet another risk factor to developing uterine cancer, but so do a lot of other things (being overweight, alcohol, early menarche, late menopause, etc.). The risk of recurrence without Tamoxifen is greater than the risk of uterine cancer from it. Many women are unable to tolerate Tamoxifen or the aromatase inhibitors for other reasons and some do not want to risk side effects and would rather take their chances. It's a personal decision, but also a medical one, and it deserves careful consideration. I don't know what I'd do if I wasn't tolerating Arimidex so well. And, I do worry about the side effects I can't feel or see.

    Now, about the hair thing. I bet we could be twins. Did you have Taxotere? It has been 9 months since my last infusion and I still look like a freak. Bald was better. I've had tests for thyroid, iron deficiency, and autoimmune disorders. I'm anxious to see my oncologist in a couple of weeks because she insists it cannot be from the chemo. Right. I do know hair thinning can be a side effect of the Arimidex I'm taking, but I have actually heard of many women being stuck without hair after Taxotere. I hate it, but I hate cancer more. Like you, I can't (won't) go out without my head covered. And summer is coming. .

    Suzanne

    Hi Suzanne,You are right
    Hi Suzanne,
    You are right about the uterine cancer and other causes besides tamoxifen....I still hate being on it. The biggest problem has been the depression. I can't function if I am depressed. I am sure the lack of normal hair is contributing to the depression...it sure isn't helping!! Yes...I had taxotere! Along with carboplatin and herceptin. I will be two years out from my last chemo this october. You can see what my hair looked like last summer (and it hasn't changed at all) if you look on my personal page. I posted some pics of it. Very depressing indeed!!!
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    I never felt that I had a
    I never felt that I had a choice about tamoxifen because my tumor was large and my prognosis was bad without it. Now, 24 years later, would I take it again? Absolutely! It is an individual decision, but never, ever doubt that it saves lives. I am living proof!
  • kellyk123
    kellyk123 Member Posts: 23

    I never felt that I had a
    I never felt that I had a choice about tamoxifen because my tumor was large and my prognosis was bad without it. Now, 24 years later, would I take it again? Absolutely! It is an individual decision, but never, ever doubt that it saves lives. I am living proof!

    I have been reading
    I have been reading different posts here and being on it does seem like the better choice. I go back to my Dr. June 22 to figure out what to about the depression. Thanks for your responses everyone!
  • pattimc
    pattimc Member Posts: 431
    kellyk123 said:

    I have been reading
    I have been reading different posts here and being on it does seem like the better choice. I go back to my Dr. June 22 to figure out what to about the depression. Thanks for your responses everyone!

    Kelly
    Are you on any type of anti-depressant? Many of us are and there are certain ones that do interfere with Tamoxifen and those that don't. I'm on Celexa and I think Effexor is another one you can take with Tamoxifen.

    It might be time to ask for a little help....no shame in it!

    Best to you!
  • kellyk123
    kellyk123 Member Posts: 23
    pattimc said:

    Kelly
    Are you on any type of anti-depressant? Many of us are and there are certain ones that do interfere with Tamoxifen and those that don't. I'm on Celexa and I think Effexor is another one you can take with Tamoxifen.

    It might be time to ask for a little help....no shame in it!

    Best to you!

    Thanks for the input, yes I
    Thanks for the input, yes I am on effexor...pretty much the highest dose I can be on. I was on zoloft and didn't feel the same depression, but they switched me to effexor because it interferes less with the tamoxifen. I feel more of the depression now though :-(
  • pattimc
    pattimc Member Posts: 431
    kellyk123 said:

    Thanks for the input, yes I
    Thanks for the input, yes I am on effexor...pretty much the highest dose I can be on. I was on zoloft and didn't feel the same depression, but they switched me to effexor because it interferes less with the tamoxifen. I feel more of the depression now though :-(

    Kelly
    Sorry, Kelly...hope things get better for you soon!

    Patti
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    pattimc said:

    Kelly
    Sorry, Kelly...hope things get better for you soon!

    Patti

    just put BACK ON Tamoxifen
    after being off it 3 mths and post hysterectomy...
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member

    just put BACK ON Tamoxifen
    after being off it 3 mths and post hysterectomy...

    Tamoxifin
    My biggest fear was blood clots(have varicose veins) and hair loss.No clots so far and the hair is thinner.Was before but I it is getting thinner.I roll my hair with small rollers and use herbal essence volumizing shampoo.My hair looks thicker than it is.BUT I do worry about it not coming back like yours if it gets that bad.I have been on tamxo for 17 months.


    I have depression(dx is enough) and my doctors wanted me on effexor.My fear thing for me with effeor is it's habit forming.My friend refused it too. For stress I am a driven person.I keep going going and going.Never stop and I have to deal with alot of problems with people.What one person doesn't do the next does.Busy body peoeple who need to not worry about me and where I go,what I do or how I do it.It's my daughter in laws.

    I think you did the right thing by going off tamox but think you should take something.Maybe that new drug that has no side effeects compared. I will continue taking it.Your hair was thin before like mine.You have me worried now.I always thought if I needed chemo would my hair EVER come back.I Didn't need it but tamox may take it toll.Has somewhet already.

    Hope you find something for added security. My 16 year survivor friend wants something else even though she took tamox and something else for 10 years.She always had thick hair.Hasn't hurt her any. I told my doctors about hair loss and they didn't eeem to mind.Like I said my shampoo and rolling my hair does make a big difference.

    You know how we feel after dx,hair loss, weigh gain or loss etc .Well the other day a guy walked up to me at the store.Said he Liked my perfume.I thanked him.Then as he was getting ready to walk away.He said out of the blue,.Pretty lady. Even with this thin head of hair.

    Lynn Smith
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    Tamoxifin
    My biggest fear was blood clots(have varicose veins) and hair loss.No clots so far and the hair is thinner.Was before but I it is getting thinner.I roll my hair with small rollers and use herbal essence volumizing shampoo.My hair looks thicker than it is.BUT I do worry about it not coming back like yours if it gets that bad.I have been on tamxo for 17 months.


    I have depression(dx is enough) and my doctors wanted me on effexor.My fear thing for me with effeor is it's habit forming.My friend refused it too. For stress I am a driven person.I keep going going and going.Never stop and I have to deal with alot of problems with people.What one person doesn't do the next does.Busy body peoeple who need to not worry about me and where I go,what I do or how I do it.It's my daughter in laws.

    I think you did the right thing by going off tamox but think you should take something.Maybe that new drug that has no side effeects compared. I will continue taking it.Your hair was thin before like mine.You have me worried now.I always thought if I needed chemo would my hair EVER come back.I Didn't need it but tamox may take it toll.Has somewhet already.

    Hope you find something for added security. My 16 year survivor friend wants something else even though she took tamox and something else for 10 years.She always had thick hair.Hasn't hurt her any. I told my doctors about hair loss and they didn't eeem to mind.Like I said my shampoo and rolling my hair does make a big difference.

    You know how we feel after dx,hair loss, weigh gain or loss etc .Well the other day a guy walked up to me at the store.Said he Liked my perfume.I thanked him.Then as he was getting ready to walk away.He said out of the blue,.Pretty lady. Even with this thin head of hair.

    Lynn Smith

    I didn't realize Tamoxifen
    I didn't realize Tamoxifen could cause depression, and I hope you can find a medication that won't interfere with it so you can take the T or at least not have depression a factor in your decision.

    Now, about the hair . . .it's difficult to tell with me right now, but I think you have more hair than I do. My hair is gray, so it might be that your darker color and greater length camoflages somewhat. Nonetheless, I so feel your pain about your hair. A woman I know said her sister had the same issues after her treatments and it took her over 2 years, but she did get her hair back. So maybe there's hope for us. I'm not giving up yet.

    Suzanne
  • dyaneb123
    dyaneb123 Member Posts: 950

    I didn't realize Tamoxifen
    I didn't realize Tamoxifen could cause depression, and I hope you can find a medication that won't interfere with it so you can take the T or at least not have depression a factor in your decision.

    Now, about the hair . . .it's difficult to tell with me right now, but I think you have more hair than I do. My hair is gray, so it might be that your darker color and greater length camoflages somewhat. Nonetheless, I so feel your pain about your hair. A woman I know said her sister had the same issues after her treatments and it took her over 2 years, but she did get her hair back. So maybe there's hope for us. I'm not giving up yet.

    Suzanne

    I didn't realize Tamoxifen
    I didn't realize Tamoxifen caused hair growth problems. I learn something new all the time on here. I've been on Tamoxifen for a year and my hair looks pretty normal now as far as thickness goes, but it is very fragile and breaks off easily on the ends.It wasn't getting any length because the ends kept breaking off. But it's better now. I'm 2 years out of chemo, so maybe it just takes that long to normalize.
    I also take effexor which seems to work for me. Hang in there, your Onc. should be able to find something to help with the depression.
    Dee
  • Kylez
    Kylez Member Posts: 3,761 Member

    Wow, now that's scary. I
    Wow, now that's scary. I will probably start tamoxifen next month, finishing my rads first. Don't like hearing about these kinds of side effects. Sorry no help from me Kelly, but I just wanted to give you a {{hug}}.

    Lorrie

    I got the prescription, but,
    I got the prescription, but, I still have not taken it. It is my choice, and, for now, I just don't want to.

    Hugs, Kylez
  • Alexis F
    Alexis F Member Posts: 3,598

    Kelly
    I'm sorry you're having such a hard time with the decisions and the drugs. In spite of anything I said, I understand your frustration, and the decision is a very personal one. I'm sure you'll make the one that's right for you.

    Lots of love and support coming to you.

    marge

    ps I did feel the same way when my MO told me about the importance of post treatment drugs. I'd have gladly given up the golden opportunity to feel like I was the walking dead during chemo.

    There are several on this
    There are several on this site that aren't taking tamox for their own reasons. We all must decide what is best for us, and, us alone.


    Good luck!

    Lex