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Hot Flash Forum!

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Comments

  • gemini4
    gemini4 Member Posts: 320
    edited February 2014

    FairyDogMother, my MO told me no black cohosh. I was very disappointed, as I've seen others here whose onc's have recommended it!  But I'm wary of going ahead with it.  Where I highly disagree with my MO, though, is her rec's for hot flash remedies -- Ativan (so I won't care about night sweats, just sleep through them) and gabapentin. I personally feel that's too much medicine for me (I'm sensitive to anything that might cause dizziness or lethargy), though I know others have tolerated these drugs well. 

    I am going back to acupuncture as a treatment for hot flashes. I found a place near me in Cambridge, MA, that does group acupuncture (meaning you're in a room with other people, clothed, just getting needles in arms, legs and feet). It's more affordable this way (sliding scale of $20-$40) vs. a private session (which was costing me $100 for one hour). I went last week and haven't had a chance in my schedule to return, but the one session does seem to have made a little dent in the hot flashes' intensity and frequency. Do you have any acupuncture practitioners in your area?  I've never read anything that says acupuncture is not safe in tandem with cancer treatments. 

  • FairyDogMother
    FairyDogMother Member Posts: 154
    edited February 2014

    I tried the 2 tablespoons of Apple Cider Vinegar to 20 oz of
    water last night. Within a 1 hour of
    drinking the stuff, I vomited. I guess
    some of the ACV was still in me, because it was the first time since being off
    chemo that I got a solid 5 hours sleep.
    I did wake up at 3ish again like I do every night/day (hot flashes and nauseous). Tonight I’m doing 2 teaspoons of ACV with ½ teaspoon
    of baking soda in 10 oz of water and drinking with while I’m eating. I read the side affects of ACV and this was
    suggested to help with the stomach issues.

    I hope all others are finding relief. I’m thankful for the suggestions on this
    thread. 

  • Amoc1973
    Amoc1973 Member Posts: 50
    edited February 2014

    I wanted to share my recent experience. I ran across some small studies on using stellate ganglion block to decrease hotflashes & I thought 'why not?'. I've been miserable w/ hotflashes every 1-2 hrs for a year. I had my 3 rd injection/block today. Since my 1st I've had a drastic decrease in hotflashes. This is after trying every drug, accupuncture, hypnosis, meditation....I've done it all. I'm not sure how long this will last but I'd do thi block for the rest of my time on tamoxifen if I need to. It hurts a bit....but not that bad & soooooo worth it.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited February 2014

    Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy

    Cam00205Bluebird144…NJJoined: Apr 2013Posts: 393

    13 hours agoBluebird144 wrote:

    Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.

    I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.

    I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.

    image

    Knitted knockers website:

    http://www.knittedknockers.info/

    Fall down seven times, stand up eight.

    Surgery 09/09/2009 Prophylactic Ovary Removal (Both)Chemotherapy 02/06/2013 Adriamycin, Cytoxan, TaxolSurgery 07/19/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left); Reconstruction: DIEP flap (Both)Surgery 08/20/2013 Reconstruction (Right)Surgery 08/28/2013 Mastectomy (Right)Radiation Therapy 10/14/2013 3-D conformal external beam radiationSurgery 01/24/2014 Reconstruction: Tissue expander placement (Right)

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited March 2014

    bump

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited April 2014

    Bump

  • gemini4
    gemini4 Member Posts: 320
    edited April 2014

    Hello to my fellow hot chicks!  Just wanted to see if we can revive this thread. How is everyone doing, and how are you all coping?  Thought I'd share ... I put myself on a hydration challenge ... Started yesterday. I read on the internets some theories that being dehydrated can bring on more hot flashes because the body doesn't have enough "coolant" to control temps. Makes sense, and there are many reasons to push fluids for health and well-being. So I'm challenging myself to drink 100 oz per day (which is four servings from my 25-oz  aluminum water bottle). I made a big pitcher of "spa water" with the juice of a whole squeezed lemon and just a splash of a delicious drink I got at Trader Joe's (watermelon and cucumber cooler -- it does contain sugar, but I'm using such a small amount that I'm not concerned). The flavor makes it easy to go down. I'll report back if it makes any difference with the hot flashes. 

  • JulieMI
    JulieMI Member Posts: 4
    edited April 2014

    Hello, 

    I just found this topic.  Just the place for me to complain.

    I am on tamoxifen and Effexor.  So my hot flash has been manageable until I decided to tapering off Effexor.  I went from 150 mg to about 15 mg now, and will be completely off in a week. Man, the hot flash is going wild.  I am soaked in sweat during the night.  I have hot flash like every 15 minutes during the day.  

    Now since I am on such a low dose of Effexor,  I found some of the side effects I blamed on tamoxifen are actually due to Effexor.  The nightmare and vivid dream are gone.  The tiredness, not able to get out of bed in the morning are gone.  I hope to lose the 15 lbs I packed on thanks to Effexor.

    My herb doctor, George Wong, told me he can help me to alleviate the hot flash.  We will see how it goes.

  • Sweetie1972
    Sweetie1972 Member Posts: 5
    edited April 2014

    I also am on tamoxifen and Effexor xr. My hot flashes were horrid before Effexor. They are manageable now. I have actually lost 21 pounds. I need to lose some more before my diep surgery in September. 

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited April 2014

    I'm on Femera and have amazing night sweats and hot flashes.  Good news is that winter is coming here in New Zealand, so my heating bill will be low again this year.  I had a business trip last week that ended up being extended and I didn't have any Femera for 3 days.  And guess what - no hot flashes and only  minimal night sweats.  And (off topic) my bone/joint pain was less.  What I always suspected but now know for sure - it's not just me, it's the drugs.  Looking forward to reading about the hydration experiment!

  • caroljandglory
    caroljandglory Member Posts: 2
    edited April 2014

    Hi, new to this forum, and love what I've read already...

    Just finished my 3rd surgery 9 days ago for a lumpectomy (right breast) followed by 2 decisions to get clear margins.  I'd been taking premarin for far too many years, even tho it was the lowest dose possible, and had to stop.  That was 5 weeks ago and I'm having HUGE hot flashes and night sweats.  They seem to be getting worse.  My radiation oncologist's assistant recommended evening primrose, which I'm taking as of 5 days ago.  I guess it has to build up in my system to really help.  I'm going to try the hydration experiment, it makes sense to me.  If anyone has other suggestions, I'd love them.  After radiation I'll take aromatase inhibitors - not sure which one yet, but I think it's an "A" word.  

  • caroljandglory
    caroljandglory Member Posts: 2
    edited April 2014

    Hi, new to this forum, and love what I've read already...

    Just finished my 3rd surgery 9 days ago for a lumpectomy (right breast) followed by 2 recisions to get clear margins.  I'd been taking premarin for far too many years, even tho it was the lowest dose possible, and had to stop.  That was 5 weeks ago and I'm having HUGE hot flashes and night sweats.  They seem to be getting worse.  My radiation oncologist's assistant recommended evening primrose, which I'm taking as of 5 days ago.  I guess it has to build up in my system to really help.  I'm going to try the hydration experiment, it makes sense to me.  If anyone has other suggestions, I'd love them.  After radiation I'll take aromatase inhibitors - not sure which one yet, but I think it's an "A" word.  

  • Rennasus
    Rennasus Member Posts: 642
    edited April 2014

    Hi all, long time since I checked this thread! I was on Tamoxifen for 2 ½ years, hot flashes were awful, then I developed flu-like symptoms during the last 3 months I was on it… felt feverish every day (though i didn't have a fever), very low energy, headache, just really felt sick. I switched to Femara as I am now post-menopausal and the feverish SEs of the Tamox finally went away — though it took about 2 months. My hot flashes are FAR less frequent on the Femara than with Tamox (for me, anyway). I still get hot flashes, but usually only a couple during the day (I get them more in the evenings). I am very aware they are coming on as I get really andy right before a flash hits. Unfortunately, I've got the joint pain. I get up from a chair like my 80-year-old mother! I've been on Femara 6 months now, so hope the joint thing doesn't get worse. ANyone have any insight? Also, these AI's are re-distributing my body weight to my belly, I gained 5 pounds and yet it feels like 15. Ugh.

    I'm interested if the hydration experiment gemini4 mentioned above is working and if the primrose oil is working for caroljandglory.

  • Rainonme
    Rainonme Member Posts: 7
    edited April 2014

    I have just started Femara one month.I was having so many hot flashes and cold sweats at night.Couldnt sleep of course..I took a zanax..I have not been waking in the night from this since.I would rather not have to take it, because I have to take pain med daily.I have to eat a Zofran with the Femara as well.But I cant believe the diffence .My dr is now prescribing the zanax for me.It is so much better to get a good nights sleep than to suffer through the night.It makes for a bad day.You hurt more as well.The days are hard enough .This is my 3rd medicine I finally can take something that isn't throwing me completely under the bus.I cant say more about the zanax helping .It also is combating the mental side effects the Femara is causing .

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited April 2014

    Hi all,

    I haven't been on the thread lately either.  Rainonme - what mental side effects are you experiencing from the Femera?  Just curious as I can't decide how much of what I'm experiencing is "normal" menopause versus Femera.  I take my Femera in the morning and only have one or two hot flashes during the day now (been on it for just over a year).  But it seems like about the time I get ready for bed (like now), I start getting hot flashes like mad.  The night sweats aren't as bad as they were when I started taking it, but still getting them.   I was taking it at night before and it was even worse.

    In addition to the joint pain, I'm getting really odd muscle stuff going on too.  I find that my muscles are just totally tensed up, especially in my legs.  And then they ache.  I'm not tense (mentally) or upset; just will suddenly realise that I'm totally tensed up muscle-wise.  Anyone else experiencing anything like that?  The end result is that my legs just ache like mad.  

    And Renasus, I have the same 80-year old thing going on as well as the 5 pounds feeling like 50.  My clothes don't fit and my weight is redistributed.  Not that I was thin before, but this is really not fun.

    All that said, it's kept me in remission for 14 months, so I can't complain too much.  

    Hugs to all,
    Terre

  • gemini4
    gemini4 Member Posts: 320
    edited April 2014

    Hi ladies -- I'm a little ashamed to say that I dropped the ball with my hydration challenge!  I stuck with it for almost a week and then started slacking again with my water intake.  So I'm going to try again. I didn't do it long enough to see if it made a difference with the hot flashes. I can say I felt good with the extra hydration!

  • Rennasus
    Rennasus Member Posts: 642
    edited April 2014

    Rainonme, my sleep has also improved on the Femara (vs. when Tamoxifen). The reduction in hot flashes helps.

    Kiwicatmom, I kinda know what you mean about the muscle tightness, I feel it in my legs. It's the same feeling I have when I work out hard, but I still feel it when I don't. I think the total blocking of estrogen (which is what the AIs do) contributes to some cognitive issues, like memory stuff. I really have trouble recalling things both recently and long ago. Sometimes it's like I have no memory of minor things at all. Example: My DH will mention a restaurant we went to and he'll remember what we ate, and I don't even remember being there let alone what we ordered. He always had a better memory than me but I feel like the mental deficit is greater now on the Femara than on Tamox. The weight redistribution is the biggest SE for me. Five pounds didn't used to mean the difference between being able to button my pants! Menopause is bad enough but pulling the plug on what remaining estrogen we have ain't fun. And let's not even get started on the mojo SEs!

    I take Femara at night. Wondering when most women take it and if they notice less flashes at night like Kiwicatmom if taken in the morning?

    Gemini4 let us know if you notice a difference with more hydration!

  • lindacam
    lindacam Member Posts: 97
    edited April 2014

    When do people take Tamoxifen.  I take in am

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited April 2014

    Thanks Rennasus.  I take mine in the morning and ti seems better than when I took it at night.  I understand the memory thing.  I think part of it is menopause but I read an article that said that women doing chemo and Femera were studied and that a lot of the reported "chemo brain" was actually "Femera brain."  I feel like I have holes in my memory.  It's a bit scary!  I've always been a bit ADD, but it's worse now than it used to be.  You're undoubtedly right about the zero estrogen thing.  The muscle thing is odd; it's like when you've had a big fright and all your muscles are tensed up and you don't even realise how tense you are until you finally relax.  That's how I feel muscle-wise.  But I'm not mentally tense.  I see my GP on Friday and am going to ask him about it.

    Take care,

    Terre

  • farmerlucy
    farmerlucy Member Posts: 596
    edited April 2014

    Ladies  - After a year of tamoxifen with Effexor (75mg) the hot flashes are here. I'm hoping it is a temporary soon-to-be-in-menopause kind of thing.

    At night I think of the Karate Kid movie - you know - wax on, wax off - except the mantra is covers on, covers off.

    Also my DH and I just had a discussion about My Fitness Pal.   I think I should get more calories per day, cause all this heat I am generating must be burning up more calories! SillyHeartWinking

    PS I take mine in the morning.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited April 2014

    Hi Ren haven't been here forever, but saw that you posted. Check in on the 2d6 thread it was started by Jelson in re: to Tamox , but has evolved. I'm on a soapbox about getting people tested for the CYP450 enzyme pathways of 2D6, 2C9,2C19, 3a4, 3a5, 

    Start with my posts in FEB 2014. Regretfully, even though I tried to make the posts simplified the CYP system is just plain work. 

    The reason I suggest you read, is consider hogtying your doc till he gives the order for testing. My doc is way into after I introduced her to it. So, is my counselor. I stopped all the AI's b/c of QOL issues. The problems caused by each took many months to clear, not sure there all gone ---who know's what kind of residual damage they do. 

    But what I found out in jan 2014 is that 3A4 &3A5 are abnormal.

    All the AI's go through 3A4, I'm an intermediate metabolizer. I should have had a reduced dose on all three. To late to do any good for me, but it may help someone else that has continued therapy. 

    L&H&P's sas

    REN BTW just working through my 2nd primary cancer--thyroid. Pathologist screwed up on bx last July. So, 10 mos behind in treatment. Took RAI-131 April 21s, 2014. GLOWING LOL. Basically, when I stopped posting here I was working on the brain tumor. Remember when I called it " Little Bean". Kayb reminded me of that recently. I'd almost forgotten that name. Did a near miss on a precancerous colon polyp last summer.  Brought up about the thyroid b/c I didn't want you to get a shock if you read on 2D6. I started the discussion then pop off for the surgery. It's always sumpin.

    Bad bad bad gene from paternal grandmother. 

    Here's the link to 2d6, again start with Feb 2014 posts

    https://community.breastcancer.org/forum/73/topic/...

  • _Ann_
    _Ann_ Member Posts: 448
    edited May 2014

    Hello, sweaty sisters! Just wanted to share some good news. I've had horrid flashes since chemo, chemo-pause, then Tamoxifen. Recently they're way better. Went from one or more per hour to one per day. Also noticed that last summer I used needed to set the A/C on 70 to avoid flashes, and now I can tolerate 74-75, even higher outdoor temps if there's any breeze. Plus I can wear long sleeves in the car without flashing. I'm at about my one-year anniversary on the tamox, so I'm hoping I've finally adapted.

    Hoping that AI's don't bring on a whole new level of hot flashes. I'm tired of sweating!

  • uds17
    uds17 Member Posts: 100
    edited May 2014

    Hi ladies!

    I'm new to this forum and have questions for you.

    Chemo threw me into menopause and things are no better since starting tamoxifen a month ago. I saw my gynae yesterday to discuss management of the menopausal symptoms: hot flashes, sleep disturbance, and vaginal dryness. I'm going to start taking black cohosh- have any of you had a good response to this? He also prescribed Ambien as needed. The biggest problem is the Sahara down below, as the options to manage this safely are limited. I've been reading about Vit E suppositories.... have any of you used these? If so, what has your experience been?

    Thanks!!

  • jramick
    jramick Member Posts: 30
    edited May 2014

    EVENING PRIMROSE OIL capsules!  They are a miracle.  You can take up to 3 a day.  When I started them I immediately stopped the flashing and night sweats!!! My breast surgeon say they also help soreness/ pain locally on affected breast too.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2014


    Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you Winking.

    The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

    Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out.  The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

    All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

    The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

    There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

    For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

    How to find the info besides from the link above?  FIND the SOCIAL WORKER(SW).  It's there job to know these things :)  Talk to all of the following 1. cancer center SW,  2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

    I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta  for $4000.00.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2014


    Bump

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2014


    bump

  • Alive4Five
    Alive4Five Member Posts: 2,225
    edited May 2014

    I've been meaning to post on this... I am looking for some relief as well. I have never sweated like a man, lol, until now! And it's not just off and on throughout the day; but waking up drenched....eeek...I am totally sick of it. 

    Doesn't seem to matter what I am wearing either. The 'only' bright side, is I do have an occasional 'dry' morning... 1xwk Maybe..ugh

    Then I am depleted of hydration, and so thirsty. Does this crap ever stop??

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2014


    Alive, it does end , but it's different for each person This thread has kind of run out of steam(pun intended?). Basically, it's been covered. I suggest reading from the beginning. There is orthodox, there is alternative, there's scientific studies, there's guesswork. I am sure you will find some pearls in here. :) When your done if you still haven't got an answer PM and I will see if I can help. :) sassy

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2014

    Alive - took mine about a year to settle down.  I still get them a bit, but nothing like it was.  

    Good luck!

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