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I have a question ..I need help

melm
Posts: 105
Joined: Jan 2001

Has anyone taken Tamoxifen or Arimidex and found the side effects too intense to continue? After bi-lateral w/ 2 lymph nodes involved in Dec. 2000,and reconstruction, 6 mos. chemo and a year and a half on Tamoxifen (arimidex the last 6 months), the side effects, especially the HOT FLASHES are uncontrollable. My onco had me on Megace and it worked wonders on the hot flashes but developed a bad discharge so she took me off of it. That was in March. Since that time I have been battling the flashes and nothing seems to help. She has switched my anti-depressants around and found I couldn't tolerate Effexor or Paxil. Now I am back on Prozac, which I have taken for a long time and had no problem...it just doesn't help with the flashes. I am depressed and sick and tired of this. I have a call in to my onco and hope to see her this week. In the meantime, I took my last arimidex on Sunday night...this is Wed. and haven't had a hot flash since yesterday morning. I have been averaging 10 a day. Help. Does anyone know of another treatment that i can try in concert with the Arimidex or Tamoxifen that will help? We have already tried Clonidine & Bellagral(?). Has anyone stopped treatment due to the side effects and what have been your results???
I am so thankful to be alive and to be cancer free and I know that I shouldn't stop treatment. But, where does quality of life play into this??? My days are spent miserable. I work 8 hours a day and commute 2 hours each day. By the time I get home I am not good company..I'm mean as a snake and miserable due to the sweating and naseau associated with the flashes.

God bless you all...If anyone can help I sure would be grateful.

Mel in AR

jmears
Posts: 270
Joined: Jul 2001

Mel I take Tamoxifen ... about 18 months now, I do take Effexor and it has worked well for me. Prior to the Effexor I was having a lot of flashes and I found Black Cohosh to work great for me at a rather high dose ... 500mg twice a day. It is a natural plant estrogen and my Oncologist didn't know enough about it and asked me not to take it. But I have hear from many ladies that there Doctors are okay with it. You may want to discuss it with your Onc. It also seemed to help me with my mood and flexibility ... good stuff!!! Good luck. Sorry you are going through this. Jamie

hummingbyrd's picture
hummingbyrd
Posts: 965
Joined: Sep 2002

Hey girl I feel for you. All I have to do is say "momma's having a hot flash" and my boys race to the Air Conditioner! Thankfully though they don't happen very often. First things first, pray for them to go away, ahhh the power of prayer. Then thank God for the other meds that are available for instance Femara (don't really rec that but it is an option) and Aromasin. I take aromasin and have very little side effects, I've also had a hysterectomy. Now your doc may say these meds r for postmenopausal women, but if I'm not mistaken that is what is rec w/ Tamoxifen. How old r u? Do u have kids? email me if u want more info. The other suggestion, which u probably already do is dress in layers, lots of them, sports bra, tank top then shirt. I've stripped, in appropriate places down to sports bra! Hey if I wasn't 42 I think I've gotten good enough to table dance! LOL The other thing is carry a cooler in your car w/ an ice pak in it, place it on the back of your neck, it will cool u down. As for anxiety/antidepressant ask MD about Wellbutrin, but if she changes to another med u may not need it. Good luck I hope this helps. God bless. Hummingbyrd

ksfc
Posts: 252
Joined: Apr 2002

My oncologist has me taking Celexa and 800-1000 mg of Vitamin E. The flashes aren't completely gone, but they are much milder and the night sweats are infrequent. Vitamin E seems to help some women quite a bit, and others not at all. Good luck - Diane

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Hello Mel!

Ok, here is what I have found in my books... BTW, I use herbs, vitamins and homeopathy. If you are not interested in any of these, stop now. *smiles* My hot flashes have been *very* mild and even becoming infrequent. (I am on Epirubicin/5FU/Cytoxan chemo and have Zolodex pellets implanted into my bum to chemically suspend my ovaries during chemo- since Aug. '02).

According to my books- Organic fats (especially olive oil, fresh butter and goats' milk cheeses) can help. In moderation, of course. Are you on a low fat diet? (According to this book, arthritis, insomnia, infertility, hot flashes, irregular menses and PMS symptoms can be worse on low fat diets)
Next- hot flashes due to tamoxifen- 25 drops (once or twice a day) of milk thistle seed tincture (take upon wakening and as desired during the day), dandelion root tincture or motherwort tincture. (I have been using the milk thistle almost daily thru' chemo to protect my liver and now that I read this, perhaps my quiet, infrequent hot flashes are due to this? When I had stopped it, they were worse. Never connected the two before! *laughs*

3rdly- Tincture of oats used as above. "... favorite ways to help ease hot flashes, upset nerves, and a variety of other menopausal symptoms."

If you are comfortable with trying any of these and want to chat with your Dr. about it, go for it!

I wish you well, may everything even out and may you be happy (and comfortable) again!!
Be well,
Marty

iris48's picture
iris48
Posts: 92
Joined: May 2002

Hi Mel,
I too was going crazy with 15 -18 hot flashes/night sweats. Bellaspar is working for me but you said it didn't work for you. I also take Carlson's Lemon Cod Liver Oil which is a very very pure form of Omega 3. This works for lifting your mood, also as anti-inflammatory, but also seemed to have a position effect regarding hot flashes. I also take 800 I.U. of Natural Vitamin E oil. I like to vary my sources of Omega Oil so when I don't take the Carlson's form, I take Borage Oil 1000 mg. Another Omega oil is Evening Primrose. The hot flashes that sneak through are of a shorter duration. Sometimes I take a hand towel, soak it will cold water and tie it around my neck. As the water evaporates, I get cooled. I've also learned to use a small wash cloth and put it inside my sport bra, so if I'm out and start the hot flash, the wash cloth keeps me drier and I can then remove it. It also helped me prevent prickly heat rash.
If that happens, they have a whipped form of destin cream in a underarm deodorant style dispenser and a little goes a long way to keeping me rash free. Hang in there. Hugs, Iris

nasa2537
Posts: 317
Joined: Apr 2002

Hi Mel...my hubby read in Dr. Susan Love's Breast Book about trying 800 IU of Vitamine E daily for the flashes. I tried it, and after about 2 weeks, I was down to a couple flashes a week instead of 5 or 6 a day. It doesn't work for everyone, but is just a vitamin, & I would think your onc would ok it to try it. Good luck! Cyndi

geral
Posts: 132
Joined: Sep 2002

Hi Mel!
I can definitely relate to your extreme hot flashes!
I was diagnosed w/Stage 2A infiltrating ductal carcinoma 6/00, had lumpectomy, 3 out of 18 pos. nodes, 8 chemos, 33 rads.
I started with terrible & very frequent hot flashes soon after chemo started because the chemo forced me into an early menopause. In between the hot flashes I had cold chills. I was miserable!
After I started taking Tamoxifen (3/01), these symptoms got even worse! I took it for 9 mos. and had to stop because of these symptoms and nausea and a terrible taste in my mouth. That was a year ago, and I'm STILL not taking anything to replace the Tamoxifen which does concern me. I considered taking Femara (a neighbor gave me info on this which was fairly new at the time) and discussed it with my oncologist who gave me samples. But I never did take them.
I've had so many health problems since the cancer that I was trying to wean off of meds to see if I'd feel better.
My hot flashes are alot better-less frequent, less severe, my bed stays dry @ night. Sometimes, I still have to change my gown and turn my pillow over because of dampness, but at least I'm not totally soaked like before! Before, I had to sleep on towels, and during the nite, change the towels & my nightgown. It was awful! So I know what you're going through.
Things I tried individually which were unsuccessful in treating my hot flashes were Black Cohosh, combo of (800 mg VIT E + 50 mg B6 + multi-vit), bellamine-s. I was also on Elavil (anti-dep) for joint pains, but this did not help the flashes.
A week ago, I started taking 300 mg Neurontin @ nite for chronic breast pain. So far it hasn't helped the breast pain or my hot flashes. I am experiencing some side effects from the Neurontin-headaches and tingling in my foot and hand, so I'm not sure if I'll be able to continue it.
Recently, my neighbor gave me an old-fashioned paper hand fan which really helps! I'm gonna try to find one to put in my purse too! A friend sticks her head in the freezer! It's ashame what we women have to go through with menopause, and cancer on top of that-WAY TOO MUCH!
I'm sorry I couldn't really give you any helpful advice re:your hot flashes, but I thought it might help to know that someone else KNOWS WHAT YOU'RE GOING THRU!
Take care...Geral

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