Tamoxifen after a double mastectomy
I have had a mastectomy, chemo and another mastectomy is planned this year, was on Tamoxifen but suffered enormously from its side effects so currently taking a break and seriously considering staying...
Forum Discussion
Hi @Barks34,
Sux huh? I have had pretty much every side effect on the Tamoxifen list plus a few that aren't. I have been on and off it since August 2017. As soon as I feel too disgusting and numb, (which is normally around three months or so) I go off for two or three weeks. Not ideal but onc says better than not taking it at all. Not that he really seems to care one way or the other. Why should he I guess, there are only two choices, take it or don't. Doesn't affect him either way really. I have tried to create a third option to do the best that I can with the drug but I refuse to live like a zombie for a decade.
It messes with my head, my speech, my writing, my memory, I get frequent nausea and dizzy spells as well as back and hip pain that appears to be getting worse. I had the weeks of crying at about 4 months the first time round. I thought I would have to quit my job as I couldn't think straight or multitask.
I have been told my side effects are extreme and that Tamoxifen does not do the things I say it does. Sounds pretty similar to what you are describing I must say. You can be extreme with me :) I have read the computer screen over my GP's shoulder with words to the effect of I appear to be suffering some form of PTSD and blaming it all on the drug. True story. Strange how PTSD disappears when not taking it.
There are other options as the ladies have mentioned but they all come with their own list of side effects that may or may not occur. One of those try it and see things. But there definitely are other drugs. Zoladex, exemestane, plus the diffent types of AI's, oopherectomy etc etc
You normally stay under the oncologist care while you are on any kind of hormone therapy. However, you will never get a decent discussion about going off it completely. They will just tell you the risk factors and then it's pretty much up to you. They're not going to tell you to stop taking it, unless it's causing other major health problems, imagine the liability if they did. If you're not going to take it then they really don't have much to see you about I guess.
The lure to stay off the hormone therapy is very strong for me at this point in time as the side effects took much longer than normal to ease on my last break which is uninspiring. The breaks and time have eased the extreme hot flushes, mood swings and depressing cloudy fog of doom but the rest remains to varying degrees.
All the best lovely. Enjoy your break. xoxoxoxo
Sux huh? I have had pretty much every side effect on the Tamoxifen list plus a few that aren't. I have been on and off it since August 2017. As soon as I feel too disgusting and numb, (which is normally around three months or so) I go off for two or three weeks. Not ideal but onc says better than not taking it at all. Not that he really seems to care one way or the other. Why should he I guess, there are only two choices, take it or don't. Doesn't affect him either way really. I have tried to create a third option to do the best that I can with the drug but I refuse to live like a zombie for a decade.
It messes with my head, my speech, my writing, my memory, I get frequent nausea and dizzy spells as well as back and hip pain that appears to be getting worse. I had the weeks of crying at about 4 months the first time round. I thought I would have to quit my job as I couldn't think straight or multitask.
I have been told my side effects are extreme and that Tamoxifen does not do the things I say it does. Sounds pretty similar to what you are describing I must say. You can be extreme with me :) I have read the computer screen over my GP's shoulder with words to the effect of I appear to be suffering some form of PTSD and blaming it all on the drug. True story. Strange how PTSD disappears when not taking it.
There are other options as the ladies have mentioned but they all come with their own list of side effects that may or may not occur. One of those try it and see things. But there definitely are other drugs. Zoladex, exemestane, plus the diffent types of AI's, oopherectomy etc etc
You normally stay under the oncologist care while you are on any kind of hormone therapy. However, you will never get a decent discussion about going off it completely. They will just tell you the risk factors and then it's pretty much up to you. They're not going to tell you to stop taking it, unless it's causing other major health problems, imagine the liability if they did. If you're not going to take it then they really don't have much to see you about I guess.
The lure to stay off the hormone therapy is very strong for me at this point in time as the side effects took much longer than normal to ease on my last break which is uninspiring. The breaks and time have eased the extreme hot flushes, mood swings and depressing cloudy fog of doom but the rest remains to varying degrees.
All the best lovely. Enjoy your break. xoxoxoxo