dont hate me please. i am desperate
I am miserable!!! let me start out with that. I am stage 1, grade 1, right at 1 year out from diagnosis. My oncotype number was 19. Please don't judge me, I've had enough from doctors. But I want my hormones back. My body hurts, I continue to have chemo brain, my sex life six. Ive tried natural stuff. Hot flashes, night sweats, etc. I am on a antidepressant that's suppose to help with this but its not working. No Dr will see me to even consider HRT. What options do I have besides being miserable. I'm 51 too young to be feeling like this
Comments
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Sounds like you might be a candidate for not taking it what was your ER/PR?
There are many who quit using taxomifen and AI drugs. I am 3 years out on my prison sentence. Two more years I am trying to put up with it. I don't want any more drugs to counteract symptoms.
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I just finished chemo 5 weeks ago and I'm hot flashing CONSTANTLY! I have 5 kids at home and am having a hard time know how to dress them every day because I'm either sweating and its only 50-some degrees or I'm freezing and its 80! Night sweats constantly. Normally I'm a cold person, using heavy blankets even in the summertime. Now I'm naked all night and throwing the blankets off the bed. LOL
I can't take tamoxifen because of stroke risk. I'm 47 and had a partial hysterectomy at age 29 (uterus and cervix taken, ovaries left intact.) I'll be having BMX on Sept 12 and ovaries out in Oct. I guess I don't expect this to get any better.
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I don't have the hot flash thing as a problem just headaches and achy body.But I was already 9 years post menopause I think the forced menopause must be dreadful your body is thrust into it yuck.
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Kathie100 - so sorry to head you are feeling miserable! That is not a good thing. Have you been to or considered going to a Naturopath or Medical Herbalist as such?? There may be some treatments they could suggest for you.
The good thing is they can test you on whether or not some supplements would help, or find out what you may need.
It certainly isn't an easy path - and I was thrown into instant menopause too with my treatment. Still learning to adjust to all my aches and pains too.
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Thank you all for your input. I even tried going to a natural doctor but as soon a they find out I'm only 1 year out from breast cancer they say they can't help me. Looks like I have to be 5 years out from diagnosis. I have been diagnosed at 98% ER positive and 97% PR positive. What about any thing over the counter? At this point I will try anything
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Kathie - Have you tried increasing your exercise? Works for me. Just a thought.
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Kathie100: I have pretty much the same cancer profile as you except I am a decade older and post-menopause, of course. Although not bothered by hot flashes I've had a number of other side effects like severe foot, leg and hand cramps and spasms and difficulty sleeping. Last month I decided to take a one week break from tamoxifen for a little relief. At my oncologists' urging I decided to give it another try. But I researched a bit to see if there was something different I could do to lessen the symptoms.
I started taking 250 mg of magnesium each evening and also switched taking the tamoxifen from morning to evening. So far, it has made a big difference for me . . . rarely a leg cramp and I am sleeping so much better. A little googling on the importance of magnesium levels might be helpful for you. Other than that I'm continuing to take calcium and vitamin D3 each morning and a low-dose aspirin every other day. Also, walk 3 miles each day.
What your body needs or can handle may be totally different, I know, but sometimes it can help reading what other people have tried. I'm sure it's harder going through this at a younger age.
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Kathie,Twelve years ago I was 51, Stage 1, ER/PR+ and HER2 positive and I felt the same way. I had done the hard time with chemo (CAFx6) and then rads, and then did tamoxifen for 1 year at full dose and 3/4 year at half dose before stopping it. The hot flashes were one thing and I put up with them, but the loss of libido after spending almost 3 years without any while doing all these treatments was not okay with me. Unfortunately, even though I quit taking it, and used the Estring for better lubrication, my libido was permanently gone. Nothing has helped for me, but maybe one of the psych drugs may help you. I've never recurred even though I have not had trastuzumab for the HER2 positivity. I'm so sorry you are dealing with all the anger and frustration.
Try looking at the study being done by the Karolinska Insititute about breast density and tamoxifen. They are trying to determine how best to measure breast density in hope that decreasing density as shown by mammogram is a reliable indicator that the drug is working well. That could mean that some people might be able to take the drug for a shorter period of time, or it could help to show who is not benefitting from taking it. google it and see what you think. For me, I had a mammo after completion of chemo and rads but before starting tamoxifen and my breasts were still very dense. Then had another 3 months later, and the density had disappeared.
A.A.
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Kathy, i saw a naturopathic doctor only three months after diagnosis, so dont understand why you ne.ed to wait fuve tears, something does not sound right
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Thanks for everyone responses. I'm still not sure what to do, however just posting and reading everyone responses has helped. 😇
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Aches and pains r a sign u need estrogen. U need to see an herbalist or a naturopath. Or u can experiment on your own. The folks at whole foods, if u have one near by, are usually knowledgeable. I know I worked there for 9 years. You don't need to suffer. Lots of things to try, that don't have the side effects.
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Kathie100: I hope no one on this board would EVER judge another. We are here for information and support.I did not take Arimidex, and I don't know how it compares with other anti-estrogen therapies. Plus, we all have different side effects, of course. But I was on Tamoxifen for 2-3 years and was so miserable. Slept nude with a fan on me all night long, my forearms and lower leg bones ached constantly. But then, at some point, my blood tests showed I'd actually gone through menopause. I didn't know it because my first and only chemo treatment stopped my period IMMEDIATELY and it never returned. At that time, I was able to switch to Aromasin. While it was still not easy, my side effects did improve compared to taking Tamoxifen. At age 51, I believe you're right at the average menopausal age. I just wonder if you've had blood tests periodically, and if you might be able to switch to a different but similar medicine. ???
FYI, none of the suggestions anyone had to help my side effects helped me at all. Also, I took a "drug holiday" of about 2-3 weeks but it also did not help. I found that, when I finally stopped these drugs, it took about 6 months for my body to drop the side effects.
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