Re-Visit Hot Flashes

[Yorkiegirl]

Ok I know this has been discussed many times. I am ER/PR NEGATIVE.

I am have taken many things mentioned here to try and control these damn Hot Flashes over the past 5 years.

They are so bad especially at night with the Night Sweats, I have to change my sheets every day because I sweat so much, not to mention that I only get about 4 hour's sleep.

So, my question is has any one here who is ER/PR NEGATIVE ever resorted to taking HRT at a low dose to help. I'm really desperate for help here. I guess the next thing would be to take me out behind the barn and shoot myself. LOL

[Becky]

Neurtonin or Effexor are supposed to be helpful and I think some on this board are taking these. I would have a chat with your onc about it. You'd think you'd be over it or know what makes them worse. For example, I was never plagued badly with them (even when having my ovaries removed while premenopausal) but I have rough, rough nights when I am already hot (a warm night) or if I have had too much wine (I drink only wine so I cannot comment on other alcoholic beverages) but if I overdo while out on the town (and have 3-4 glasses - you can scold me later) I am sure to pay with hot flashes all night long. Some women get them eating spicy/hot food. Do you have triggers too? If not, you need to talk to your onc. Even have your FSH, LH and estradiol levels taken. Were you in menopause before? If not, you might not be over the edge but may not be making enough estrogen to ovulate and have a period but too much is flucuating to cause the output of FSH (which is what really causes the hot flash) to stimulate the ovaries to put out more estrogen.

Call! You really seem to be suffering and there are things out there a doctor can have you try.

[Yorkiegirl]

I was in Peri menopause before cancer dx, but when I started chemo it put me into menopause. My last period was May17, 2005 ( 5 yrs. ago) I have had my FSH, LH and estradiol and all show me to be very into menapause.
I have tried Effexor, Paxil, Plus natural suggestions. I have asked and asked my Onc and PC to please, please do something for me and they each tell me to see the other. I have begged for for hrt low dose to see if it will help and neither wants to be responsible for a possible reoccurance ( which I guess is why they won't give it to me).
I have no triggers at all set these off, I don't drink and don't spicy food, they have continued to get worse, so I'm at loss as to what to do.
I guess I'll keep searching.

[PatriceH]

Look into a book called What Your Doctor will not tell you about Breast Cancer. Same Author: What you Dr will Not tell you about menopause.

Lots of technical stuff, but VERY interesting in discussing HRT using synthetic substances....estrogen dominance which is NOT the same thing as ER/PR+; but seemingly a cause for cancer and playing with synthetic hormones possibly cause for recurrence.

[sassy]

Yorkie,

I am triple positive. I have been taking neurontin for several years and it really does help with the hot flashes. I still have some, but they are not nearly as severe while taking neurontin. I have been able to lower my dosage since having ovaries removed and stopping Lupron shots last November. Nights do seem to be the worst, but I take a neurontin prior to bedtime and make it through fairly well.

You may want to talk to your doc about this possibility. It is more than worth it for me.

Best of luck,

[Merridith]

I am ER/PR negative as well and after chemo had horrific continuous hot flashes. So I did a lot of research, (this is a few years ago now so I no longer have the links to what I found) but the upshot of the research was that if you are ER/PR negative, your cancer isn't driven by hormone production the way the positive ones are. The solution I found was to take progesterone by itself. HRT involves taking estrogen in small doses.

Progesterone acts as an antagonist to your body's natural production of estrogen. The hot flashes are caused by a momentary surge of production.

Taking progesterone kills the flashes. Dead in their tracks. I went from a flash every half hour to about 1-2 a day. Instantly. A side benefit was that I started having normal sleeps at night again and the dryness in my skin improved. (these are normal side effects)

I had to find an endocrinologist who would prescribe it, but that wasn't hard. There are basically no studies about taking this drug in this context. But there are studies that imply that this might be low risk for ER/PR negative survivors. Certainly it is lower risk than taking HRTs.

At any rate, if you have more questions feel free to contact me through this site. It will take as long as a week to get back to you as I am currently traveling in an RV across Canada.

I am six years out of initial diagnosis, and have been NED since the initial mastectomy and chemo. I've been taking the progesterone for 2 years.

[Jackie07]

Vicki,

It's been very, very hot in Texas so far this year... Drink a full glass of ice-cold water before you turn in. And keep that air conditioning going...

[Yorkiegirl]

Yep Jackie it sure has been very, very hot here. I'm so tired of it all (well actually my yard is. LOL)
I drink lot's of water during the day. Night and Day I have the AC running (set at 70 always) as well as the ceiling fan and another fan going on me at night.
I have resortd to using Ice Packs on the back of my neck, but they get warm very fast.

[pibikay]

You are saying that it was hot in Texas.What anout Chennai (India) In May and Early June it was >100F.My wife had cold shivering in her legs followed by profuse sweating in her head and the pillow covers had to be changed.I feel it is apart of the side effects of Chemo Herceptin Combination

[jhandley]

Hi
Go to a doctor who will test your saliva levels of progesterone and estriol..then get a script for these. It works. Dr John Lee's book is a good guide.
Jackie 9down under)

[Catherine]

Here's a useful crutch until you get the right meds. Go to a golf shop and buy a high-quality neck "tie" with beads. Looks like you are wearing a rolled up cowgirl banddanna (sp). I have had 2 really good ones. You soak them in water and then dry off a bit and tie around your neck. A good one works 6-8 hours.The special beads have a cooling affect. Do not get the cheap imitations that are sold at Saturday markets. I bought my last one at REI in Portland, Oregon.

Hope this helps a little bit, Catherine

[v-ness]

i had chemo-pause induced hot flashes and night sweats totally under control with neurontin. i was just about totally free of them. then i started tamoxifen and WHAM, the related hot flashes overcame my neurontin barrier. so i take more neurontin. i began to think maybe it's not doing anything to help anymore, but my mind changed when i was out in utah a couple weeks ago and i forgot the neurontin at home. hot flashes doubled in intensity so i called my doc and had him fax an order to the zion pharmacy. phew... relief. the univ of rochester study said 2400 mgs of neurontin is the equivalent against hot flashes to hormone therapy. i don't take that much, maybe if i did i would not have any hot flashes at all. just seems like so much, especially when i have other meds i have to take. v

[Westcoastgirl]

I also have hot flashes but am afraid to take anything at all for them so suffer quietly...well, not so my husband says. I keep a spray bottle handy and spray it on my feet esp and in the air to fall on my body often during the hot nights. I also find that the more distressed I feel the more I suffer from hot flashes but controlling that is easier said than done. Good luck.

[CoolBreeze]

I'm er+ but the hot flashes are awful - continual too since I started tamoxifen.

I saw a study in the journal menopause about a supplement called err-731, http://www.ncbi.nlm.nih.gov/pubmed/16894335

I'm going to ask my onc about it.