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Remission from breast cancer on Tamoxifin, bad hot flashes

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Posted 1/1/2011 9:53 PM (GMT 0)
Hi, I am in remission from breast cancer and am on tamoxifin now. Was told that was the only one that fit me. The problem? Major hot flashes, we are talking 20 in a 24 hour period. Dr. put me in neurontin then for that, which has helped. I have a HSA which means no co-pay and we are talking like $80 a month for that alone. Besides I am already on to many drugs. Does anyone have any other ideas? The Dr. thinks I will adjust to the tamoxifin and stop hot flashes, what is the experience out there for that?
Posted 1/2/2011 1:53 AM (GMT 0)
I'm no expert, but when I was in the breast cancer prevention study (quite a long time ago), I had the same experience, plus some. I think tamoxiifim has certain parameters for usage, but I would think that there should be something else.
If your Dr. won't talk to you about something else, talk to another Dr. I just switched oncologists and I'm glad I did.
Posted 1/2/2011 2:57 AM (GMT 0)
Thanks, that thought has crossed my mind. I have liked this Dr., but I want someone willing to do research for me also, not just to say, suck it up. I can't believe there are 4 drugs only to pick from.
Posted 1/2/2011 3:34 AM (GMT 0)
A few things helped me when I was on tamoxifen for 5 years. Time (the hot flashes evened out after awhile, although they never disappeared), initially cutting the single daily dose into 2 per day, half in the am, half in the pm for a few months til my body got use to it, then taking it once a day (easier to remember a single pill). Last - exericse really helped with the severity of the flashes. Red wine in the evening, btw, was brutal - always triggererd bad ones.

I also used mental imaging - turned the flashes in my mind to curative heat that was burning any cancer cells trying to form. Not the reality, of course, but it helped me to see them as "power flashes".
Posted 1/2/2011 7:30 PM (GMT 0)
The taking half a pill at a time sounds like a good idea. The hot flashes disrupt my sleep so bad and it what gets to me so bad. I have also heard even without flashes, that tamoxifen can disrupt your sleep. Have you had that problem? Sometimes I get so tired and want to sleep so bad all I can do is cry. Thanks for your input.
Posted 1/2/2011 7:51 PM (GMT 0)
I never took any of the anti-estrogen drugs, but went into menopause from the chemo at 36. Awful hot flashes. Covers on, covers off, all night. Sometimes some of the antidepressants will help, and different ones work for different people. I know people who swear by Paxil, others by Zoloft or Wellbutrin. I tried lots of them, none of which helped, until we tried Effexor. I saw a huge difference in a matter of days. I think any of the aromatase inhibitors that block estrogen are going to result in hot flashes.

Let us know if you find something that works for you!

Hugs...
BEV
Posted 1/2/2011 8:23 PM (GMT 0)
Sleep disruption, oh boy. I'm in my late '50's, and insomnia with or without hot flashes had already become a problem for me before I was on tamoxifen. I just figured it was peri-menopause in my 40's and "sucked it up". I think it's more of a side effect of middle age, not the drug. I also hate taking meds, so the fact that I had to be on a daily one for 5 years was very unsettling, and I never tried sleep aids then (although I have tried ambien twice this year). The moderator would know better there, I'm sure.
My tamoxifen days ended some time ago, but I still am an ocasional insomniac. I don't have to be alert for employment or a young famiy anymore so I use the time to read, zone out on dvd marathons - anything I choose. The hardest thing was to keep my mind from going to dark places, which seems to be where minds like to roam in a quiet, dark house at 3am. Rotten that you have to suffer from it, whether it's your age or the drug, but it still is an awesome med to keep you in the world longer. Glad you live in an age where it's available, and glad you found a site that can help with some support!
Posted 1/3/2011 12:05 AM (GMT 0)
NE, I'm a survivor, just like everyone else here. Not a medical professional. If I give information, it is based on my personal experience or gleaned from the experiences shared by the many women I have met through the years who are also survivors. So your information and experiences are every bit as valid as mine!

BTW, my brother has had prostate cancer... he's got several years NED under his belt (no pun intended). I used to say that if men had the equivalent of breast cancer at the rate we women do, there would be a cure by now. Having seen the ongoing problems he deals with, I think it can be far worse than breast cancer, as a survivor.

Anyway... your input is valued here. Appreciate you sharing your experience!

Hugs...
BEV
Posted 1/3/2011 12:44 AM (GMT 0)
Hi Bev,
I'm more of lurker here after discovering HW when my husband was diagnosed with PCa this past spring. I decided one night just this past week to look at other sites that listed a disease my loved ones (or myself):-) had to deal with and checked out the BCa group. The PCa site was high-quality with great in-the-trenches experiences and med info. I haven't needed BCa support (thank God) in awhile, but whenever I see someone who is frightened or struggling, my heart goes out to them. "There but for the grace of God go I" puts it pretty well. The crazy-fear that "C" word can generate...
Anyway, the prostate cancer group have a "bible" - Dr. Walsh's guide to surviving prostate cancer. My own "bible" was Dr. Susan Love's breast book. I actually have her autographed copy and went with some survivors to one of her local lectures to meet her. Hope this site frequently recommends her book as a great resource. Dealing with the fear this cancer brings to women is one more item on the lousy list of dealing with breast cancer diagnosis. The book was a great help to me.
Glad to cyber-meet you. Wish all here a healthy, happy 2011.
xoNEIrish's wife
Posted 1/4/2011 12:42 AM (GMT 0)
Barky Boys, are you a dog lover? I live alone and have to support myself so being tired is a big problem. The neurontin is helping, it is just so expensive and I get tired of taking so many drugs. I will keep on that drug till my Dr. appt. at the end of Jan.. Even when the hot flashes are in check, I still seem to have problems sleeping now, I am 55, so maybe age is my problem also. I just have to keep on going cause those dang dogs just won't do anything to help support me!
Posted 1/5/2011 4:07 AM (GMT 0)
I'm 52, and I sleep like a baby! LOL Yes, I am a dog lover. Have three of my own, and two grandpuppies are here visiting right now. Every day when I head out the door, I tell them, "Momma's gotta go to work. Earn some money so we can keep buying dog food around here." It would be a sad and sorry day if we ran out of dog food!

Hugs...
BEV
Posted 1/6/2011 12:27 AM (GMT 0)
LOL. That is what I tell my "boys", after I berate them for not helping out around the house more. They always act like they never get fed when I get home. I would be lost without them though. I also remind them on these cold days how lucky they are to be so spoiled in a nice warm house and comfortable couch.
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