Any advice for Hot Flashes after chemo? - Page 2

Merridith · 04-08-2012, 08:07 AM

I am seven years out and still get very aggressive hot flashes - about every 1/2 hour. Sometimes I get a break for a couple of hours, then the cycle starts again.

About 3 years ago I started taking progesteron. I am ER-. This killed the hot flashes almost completely down to 2 a day. Once in the morning......and once after I have a shower. Very predictable.

There is a minority school of thought that says that progesteron without estrogen is sufficient - and in fact superior to the HRT's. There is very limited research indicating that ER- MIGHT be able to take progesterone with impunity. But no direct research as the legal risk at this point to directly investigate for the pharmaceuticals is too high. So this choice hasn't been directly explored for risk factors.

Another positive outcome is that taking progesteron REALY resolved some of my memory issues. Although this isn't an indicated outcome - I recently discovered research with mice indicates that progesterone improves their memory abilities.

I know I am not a mouse, but it certainly worked for me! In fact if I skip a day - I can tell.

rhondalea · 04-08-2012, 09:58 AM

Now that this thread has come up again, I'll add what I've learned lately. I'll never get caught up, but it's a start.

I decided to try KY Liquibeads after all (based on Maria's recommendation). Gift of the gods. Thank you, thank you.

I don't know if I'm having menopausal hot flashes or not. Everyone says, "You would know," but I've been having hot flashes and cold chills all my life because of my stupid thyroid, so how can I really tell?

With that said, I have burning ears, which I have read can be a symptom in lieu of or in addition to hot flashes. They get warm and tingly. They even look inflamed some of the time, although I didn't realize that until my internist asked me why my ears were bright red.

So, in addition to all the other supplements I pop daily, I added pine bark extract (pycnogenol), although my motivation to do so was not alleviation of menopausal symptoms (because I couldn't possibly have hot flashes, right?).

My preliminary results indicate pine bark alleviates the ear burning, some of the overly warm episodes (so I guess they must be hot flashes, after all) and (hallelujah!) tinnitus. It is not a phytoestrogen, and I can't find any contraindications for hormone positive breast cancer patients. It is an antioxidant, so it should be avoided during chemo.

Here's MSKCC monograph:

http://www.mskcc.org/cancer-care/herb/pine-bark-extract

Medline also has a few words:

http://www.nlm.nih.gov/medlineplus/d...ural/1019.html

If anyone has an interest in trying it, I'll download and post the NS monograph, which has far more information.

Oh, and here's the sage monograph I mentioned in an earlier post:

dropbox.com/sh/efvo0bbrmf9fi5h/oLVf-Yg3jT/Sage.pdf

rhondalea · 12-13-2014, 09:06 AM

I wanted to revive this thread for the conversation that occurred at the end, and then I realized I could also be topical.

First, the topical. I never really went through menopause. My last period started the day I started chemo. I never had another period after that. I've never had a hot flash or any other symptom that would normally be attributed to menopause. I was just pre- and then I was post-.

Now that my brain is better, I realize that all along, I have taken pine bark, which, when processed in a specific way and patented, is known as Pycnogenol®. Here's an abstract. I tried to get the study, but when I clicked the link, it wasn't where it was supposed to be, so I'll keep trying.

http://www.ncbi.nlm.nih.gov/pubmed/22108479

What's nice about pine bark/Pycnogenol® is that it's not a phytoestrogen, so it's safe for those of us with hormone receptive positive cancers.

I take the Vitacost pine bark. Two capsules a day. I've never actually tried Pycnogenol® so I don't know if it is more effective. What I'm using has been plenty effective for me.

Now, to the next thing. I had a bad PAP in June, so I had to go back for a follow-up. It was fine--most likely the bad result was because I am dry like the Sahara. So I asked the doctor what to do. We went over the non-starters again, and then the light bulb went off (in her head, not mine). She gave me a sample of something called Luvena (Laclede, Inc., creator of Biotene, which is now owned by GSK). Turned out that the sample box was empty (ha, ha), so I gritted my teeth and bought a package.

Recommended dosing is every 3 days but the disclaimer is that if that's too much, you can lengthen the time. I use it every 5 days. The applicator is ridiculous, and I have no idea why they made it that way. It's best applied at night when you're already lying down and not planning to get up, but you should wear a panty liner to bed, because even then, it leaks a bit. (If you stand up, it's a mess.)

The FDA is now after Laclede for labeling violations. Go FDA. <sigh>

http://www.medicaldaily.com/fda-look...ish-fry-290970

There are also sharks in the water:

http://audetlaw.com/investigations/l...investigation/

With full disclosure done, this stuff really works. It's like being normal again. No discomfort, and none of the yuck factor of Replens. (I told my doctor that Replens claims the discharge is old vaginal lining and that it will eventually stop. She just shook her head.)

Luvena is not cheap--I paid $21 at Walgreens for a box of six applicators. When I got home, I googled. The best price is available at drugstore.com--$15.99. If you order 3, you get free shipping. If you put it on auto-order (which I did), you get a 10% discount on subsequent orders. I think it's worth buying a box at retail to see if it works first, though.

You can also buy it direct. Here's the website with more information and a "Buy Now!" link at the bottom. They offer free shipping, but the price is higher ($19.99) than drugstore.com (still cheaper than retail).

http://www.luvenacare.com/

The doctor also gave me a sample of the wipes. Don't waste your money.

Catia · 12-14-2014, 11:34 AM

Hi,
I was 43 y.o. when the "chemopause" hit and I had crying spells and hot flashes. Onc said to take vitamin E supplements and they went away within a few days,...

rhondalea · 12-14-2014, 04:35 PM

How much Vitamin E did you take, Catia?

Catia · 12-14-2014, 07:46 PM

I don't remember how much Vitamin E but do remember they were gel caps and I took three of them daily (lol, I realize that's not much help).

IrvineFriend · 12-14-2014, 10:01 PM

I found the hot flashes to be almost as bad as the treatments as I threw up at the onset of the flash and had them about once every 5-10 minutes. I spent months throwing up from them. I did go on Effexor I believe it was 150 mg in the end. It helped considerably. I'm so thankful I have them now about twice a day only since I turned 50. They are mild and don't involve puking. It's just an annoyance now.

I believe when you're young, pre-menopausal and thrown into menopause, it's so much worse. The thing is, we can't predict it or even get other's experience. We're all going to be different.

I do hope you get some relief. I fought Effexor, but I couldn't function w/o being on something heavy duty.

Hugs,
-Julie

Coux92 · 01-21-2015, 05:32 PM

I have decided to wean off the Effexor, 75 mg has not been much, if any help. I'm starting the pine bark extract with the blessing on my doc. I know Rhondalea uses it, anyone else out there that can offer some encouraging results with this. Doc wants to try nerontin but is ok with me tring this first. Started 100 mg yesterday.

IrvineFriend · 01-21-2015, 05:52 PM

I did not like the side effects with Effexor but my hot flashes caused me to vomit and I was a complete mess. Neurontin did nothing to help me, but Lexapro has been a godsend. Very minimal hot flashes and no side effects (boyfriend sees a very positive change). Most of us hate to take more meds, so keep us posted on how its working for you. Good luck!

rhondalea · 01-21-2015, 08:22 PM

I hope the pine bark works as well for you as it has worked for me, Coux. I started it before I started Tamoxifen, so I have no idea how long it takes to work, but this abstract says 8 weeks. They were using Pycnogenol®, but it really is the same thing. The difference between them and me is that I take 100 mg twice a day.

Supplementation with Pycnogenol® improves signs and symptoms of menopausal transition

Pine bark also gets good reviews for improving cognitive function. Really makes me wonder what kind of mess I'd be without it.

v-ness · 03-10-2015, 11:51 AM

hated Effexor and it's a bear to get off of. takes a long time (you get head rushes). i researched this issue heavily. i found that Ditropan has helped me. it real purpose is for women for bladder control, off-label is that it can decrease hot flashes. and that's what it did for me. i was suffering horrendous numbers of hot flashes and night sweats - i remember i counted 40 once - and they weren't flashes either, they sometimes lasted a while (especially at night). Ditropan cut them down to about 10 per day. i was seriously on the verge of going off Tamoxifen, i was so distraught. i also have a hand fan in my purse and fans bedside and on my desk. i am supposed to finally end Tamoxifen in june and i pray that the hot flashes subside or if it's not too much to ask, resolve completely. i got my first one during my first chemo, only 5 minutes in. i asked what the hell was that? joy joy. that, my friend, is your life from here on out. i can find the ditropan study if you like. valerie

v-ness · 03-10-2015, 11:55 AM

here is the article. 70% of the women responded positively to varying degrees. it does not have a lot of side effects (bonus) though you need to drink more water because it's drying, but again, water is great for you so no big deal. ditropan is oxybutynin: http://www.ncbi.nlm.nih.gov/pubmed/17204995

valerie

Coux92 · 03-13-2015, 08:16 AM

V-ness, thank you for the information on Ditropan. I can not open the link to the study but I will look into it. For now, I have been on the Pine Bark ~ 7 weeks, increased to 200mg daily ~ 3 weeks ago. I think I'm seeing some minor improvement but I'm still hopeful that it will continue to improve. I had 3 "fair" nights in a row twice since being on the pine bark, I get all excited, then a horrendous night like last night... for ~ 3 hours I broke into sweats about every 20 min.
I'm planing on sticking with the pine bark for now, daytime flashes seem a bit less intense as well. I will explore ditropan just in case.

rhondalea · 03-13-2015, 09:36 AM

Just wanted to follow-up about my mention of Luvena for dryness.

Back in January, Leclede entered into a consent order with the FDA that allows them to continue to market all their Luvena products so long as they remove the unproved claim (that it's a prebiotic) from the labeling. That's done, and Luvena is widely available.

FDA Link:
http://www.fda.gov/NewsEvents/Newsro.../ucm432505.htm
Leclede Link:
http://www.luvenacare.com/letter.html

The body wash is also nice.

Note to Coux re pine bark: I'll try to figure out what else it is I'm taking. It seems to me there's something that makes the pine bark work even more effectively, but I don't remember which something it is. I'm glad you're having some success with it, but I do hope it starts to work a little better for you. Random relief would drive me crazy, because I hate not knowing what to expect.