My Tamoxifen Confession

I haven't started taking it yet cause I'm terrified and I keep putting it off, but this is exactly what I plan on doing if the se's are too much for me!  Thank you for posting this so I know I won't be alone in playing my own doctor in real life!

Thank you for confessing.  I stopped my tamoxifen for 6 weeks after I had been on it for 7 months.  Summer was coming and the hot flashes were getting to me.  I also was fed up with the difficulties it caused to my sex life. (Inability to orgasm/lack of response to stimulation).  I never consulted my onc, just stopped it on my own, wanted time for it to completely clear my system, so I could see if things would really improve.  The hot flashes did let up and just as I was restarting on tamoxifen, things started improving in the sex dept. somewhat. And I told my Onc about it afterwards just to see what he would say.  He was somewhat horrified, but glad that I'd restarted it.

Lately I've been thinking about when I will do my next break.  In August, when I've done 1 full uninterrupted year on it, or Nov, when I'll have been on it for 2 years?  I've tried various herbal remedies as well as progesterone cream for the insomnia that is becoming really unbearable lately.  I don't like the idea of having to rely on ambien to sleep through the night and I really feel like I'm starting to look more aged lately, maybe due to the lack of sleep or maybe because I am going to be 50 on my next birthday.    It really bothers me that I could be visibly aging sooner than I would have normally.  And I agree with you MM that due to my early stage node neg tumor, and having added more healthy foods and exercise to my lifestyle, that my chances are pretty good of not having a repeat cancer.

What makes it so hard is that, if the odds go against me and I do get a reoccurrence, I might regret not having followed the protocol completely, but then again, 5 years is a long time and it feels like no end in sight sometimes.  So I think taking a break now and then is a good idea for helping to get through this.  And I suspect that many more women are not admitting the full story to their oncologists of just how faithful they are at taking their meds.

I have my own secret with regard to AI's.  I pray to God that my decision is the right one.

Ellen

I hate Tamoxifen too.  It's only been two months (and I've skipped a few myself, accidentially so far) and I'm very uncomfortable.  I have long bone pain, I have joint pain, I'm tired all the time, my skin is wrinkling, I can't sleep and I hot flash all day long.  I feel like a 90 year old lady.

I saw my onc last week and told him I didn't want to take it but he convinced me to keep at it.  Being HER2+ means my cancer wants to live and he said I'm blocking it with herceptin and if I don't block the estrogen pathway I could regret it.

I did find this:  http://www.webmd.com/menopause/news/20060915/rhubarb-may-cool-hot-flashes

ERr-731 has had some real studies done on it and seems to improve hot flashes and bone pain and other menopausal symptoms.  I forgot to ask him about it.  I'm tempted to get it and try anyway.  I don't see him until August again.

I know one thing - I'm not going to be able to do this for five years.  I'm hoping that the SEs get better.  In the meantime, he gave me percocet but that isn't the way I want to live my life either.

I too went off tamox for about 1 month, then saw my onc who talked me into trying 10 mg instead of the 20. I agreed, but I have taken "short" vacations from it still. For me, the bone and joint pain was unbearable. Every bone throbbed in pain. I was absolutely miserable...I felt like I was 90! The lower dose is better, but every couple of weeks I stop because I can feel the pain and stiffness coming on. I will take the tamox as long as I can to the best of my ability.

MyMountain,

You know, we are only human and all we can do is what we can do.  I fear that you are going to set yourself up for deep guilt and regret if you have a recurrence. 

There is a thread here about women who experienced a recurrence even while taking their tamoxifen/AI faithfully.   There is no way to know, so remember - you have done what you can do.  You have tried.

Tamoxifen is a difficult drug.  I'd rather do chemo again than continue taking it, not that I was given that choice.   So, your secret isn't one that we don't understand.  Some of us do and thank goodness not all of us do.

Please research ERr-731 and take that information to your onc.  I will. 

And, ask for the half dose.  Ask for painkillers if the bone pain is bad (like it is for me.)  Ask for celexa, for hot flashes.  Something might work and it's worth it to try these things.

But, if you cannot do it, then you can't do it.  If you need breaks, you need breaks.   Frankly, I have a pretty bad quality of life right now.  I don't want my cancer to return, obviously.  But, living this way for years doesn't sound doable it either.  I will put one foot in front of the other, and I'll take that pill.  I will hope the SE's ease, since I've only taken it for two months.  I'll hope something new comes along. 

But, what I won't do is freak out and think if I get a recurrance  that it was my fault for missing pills.  

I hope you don't either. More than that, I hope you don't get a recurrence, and that you (and all of us) can find a balance with this difficult drug.

Thanks so much for starting this topic!!!  I thought I may be the only one out there who didn't want to take Tamoxifen.  I was already hot flashing and not sleeping to the point of unbearability; I just didn't think I could handle any more of those.  My surgical oncologist, who is a friend my husband did residency with years ago, admonished me HARSHLY for not beginning it right after my double mastectomy (tried 2 lumpectomies that didn't give clear margins; ILC, 1.8 cm, micromets - I've since had a 4th surgery to remove an infected tissue expander - facing at least two more if all goes smoothly . . .) Said it was my chemo, and basically said the evidence shows it to be remarkably effective for my profile.  So out of respect for his knowledge (and for my family, I guess) I started it two weeks ago.  It does have side effects for me; muscle and/or bone pain, diarrhea, and a malaise like the flu.  But I'm hanging in there for a while - am interested in others' experiences with it too - PLEASE POST!!!

I can definitely understand not wanting to take treatments and not wanting to take Tamoxifen....I hate every treatment I have had to have and the ones still ahead. My comments are not meant to be any kind of criticism.  This is one tough road for everyone, and I definitely believe everyone experiences it differently.

But here are my two cents. I was diagnosed with Stage 3 BC and it was quite a shock (after yearly clear mammograms, etc.). For the first month after diagnosis I was not very optimisitc about my future. Then a great friend who has Stage 4 lung cancer told me,   "Don't think about how you are going to die, think about how you are going to live." After being on chemo for almost 6 months, and seeing the people at the transfusion center who are really struggling while I feel mostly pretty good and occasionally crummy, I have a new perspective. So, I think perhaps getting a higher stage diagnosis really confirmed my desire to take all the treatment currently available. That said, I haven't started taking Tamoifen yet, but I will after BMX and radiation. I hope it goes O.K. As we can see from reading these posts, it really seems to cause suffering to many women. I wish them the best in figuring out if there are meds that will help them through. I hope they continue sharing their experiences so we can all help each other.

Taking tamoxifen is such a difficult and very personal decision!  You have to weigh all the factors and decide what you can live with.  Whatever any of us decide about treatment, I'd strongly encourage you to come clean with your doctor(s).  You have a right to make your decision about your body, but they'll be able to do their best job if they have all the facts.  A doctor doesn't have to agree with you, but they should be respectful of your decisions.  If your current doctor isn't respectful of your choices, find one who is.  We have enough to deal with!

 Isn't it nice to have a place to confess and not be judged?  Seems like just about all of us who have had to make the decision about tamoxifen take a while to decide.  Took me months because it was recommended even before my dx, so I'd been researching it for a while.  Another one of those decisions where there is no "good" choice.

Hi mymountain -- Thanks for talking about this with us.  I've never taken Tamoxifen, but I've been on Arimidex for 4 months.  I was terrified of the possible side effects and how it might affect the quality of my life and delayed starting it for as long as I could.  But when I finally started I found that I had very minimal side effects -- some increase in hot flashes, and a little weight gain (which I'm working on with exercise and diet), but nothing really.  Still, I think I can imagine how difficult it would be to tolerate the stronger side effects and how tempting it would be to stop the medication.  But I fear for you, MM!  The fact that your cancer is receptive to estrogen has given you a powerful weapon to kill any stray cells in your body and to prevent a recurrence.  (My oncologist quoted a whopping 40% reduction in risk with the anti-hormone meds!)  You must figure out a way to use this weapon to the best of your ability.  If you tell your doctors how miserable this medication makes you, surely they could help you find an alternative, or additional meds/activities that would minimize your side effects.  Please try to find a way to achieve that optimal state, won't you?                                                                    

I haven't started, I haven't even gotten through chemo yet.  But, I would say that it's probably better to look at the 10 year, not the 5 year projections.  For me, stage 1, IDC, node neg, ER+ (dreaded grade 3), without any chemo or tamoxifen, my relapse rate was 37% likely.  That's a lot, and chemo and tamoxifen brought that down in tandem 20%.

I too play a doctor in my real life and am currently on a break from Tamoxifen.  I have not told my Onc, GYN or my PCP.  I know what the lecture will be.  Trigger fingers (3 now), bone pain, pelvic pain, hot flashes and major hair non-growth since chemo has prompted the break.  It has been two months and I feel better, have energy and my hair is growing back.  Every day I question if my vanity is more important than recurrence.  I would not be taking a break if not for my hair.  I think I could deal with all the pain and fatigue. I just can't be the bald woman.  Chemo has been done and over with for 15 months.  I know that since I'm still not sure that this is the right thing to do, I know I'll go back on it.  Eventually.  I am an excellent metabolizer as well.  I read that excellent metabolizers metabolize it too fast and you don't get the full benefit.  I feel damned if I do and damned if I don't.  I take Dim which is supposed to block estrogen and balance it out and do the same thing Tamoxifen does.  If only we knew for sure.  Take it and end up stage IV, don't take it and end up stage IV.  Or cancer never comes back whether we take it or not.  Sometimes I could just scream.

MM:  you are not whining!  At all!  You are simply using these boards for what they are here for.  To talk to others that KNOW how you feel.  And we do.  All of us, from stage 0 to stage IV.  There is no "right" answer to any of this.

Hope cutting the dose makes it manageable for you.  If it doesn't, no one will judge. 

Sorry if my post to you earlier scared you.  Wasn't my intent at all.  I was just in one of "those moods" that I find myself in sometimes. 

hugs to you

Lisa

Not sure if this will help you but I take Effexor (which I think helped the hot flashes maybe a little bit) but the biggest thing that I think has helped my hot flashes become mostly nonexistent has been walking on my treadmill at least 30 minutes each day. It really has helped me. Hope it can help someone else.