Quitting Tamoxifen
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
Comments
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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}}.
Lorrie0 -
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.
marge0 -
Ya know, Marge, my onc. saidmwallace1325 said: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 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!!!!!0 -
Kellykellyk123 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!!!!!
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.0 -
Kellymwallace1325 said: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.
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! Mary0 -
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...
Denise0 -
Wait a second, Denise. Youdisneyfan2008 said: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 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.0 -
Whoa Kelly!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.
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. .
Suzanne0 -
Hi Suzanne,You are rightDouble Whammy said: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 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!!!0 -
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!0 -
I have been readingCypressCynthia said: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 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!0 -
Kellykellyk123 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!
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!0 -
Thanks for the input, yes Ipattimc 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 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 :-(0 -
Kellykellyk123 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 :-(
Sorry, Kelly...hope things get better for you soon!
Patti0 -
just put BACK ON Tamoxifenpattimc said:Kelly
Sorry, Kelly...hope things get better for you soon!
Patti
after being off it 3 mths and post hysterectomy...0 -
Tamoxifindisneyfan2008 said:just put BACK ON Tamoxifen
after being off it 3 mths and post hysterectomy...
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 Smith0 -
I didn't realize TamoxifenLynn Smith said: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 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.
Suzanne0 -
I didn't realize TamoxifenDouble Whammy said: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 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.
Dee0 -
I got the prescription, but,butterflylvr said: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 still have not taken it. It is my choice, and, for now, I just don't want to.
Hugs, Kylez0 -
There are several on thismwallace1325 said: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 site that aren't taking tamox for their own reasons. We all must decide what is best for us, and, us alone.
Good luck!
Lex0
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