Hot Flash Forum!
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That is what I am wondering Omaz, do they get worse on tamoxifen?
My Onc said what I am experiencing now is what I should experience on tamox.
Edited to add: before my foray into bc, I was premenopausal and not taking any meds other than the occasional Tylenol. Since march I started metformin for pre diabetes. And as of may 24 I have now entered chemopause. Hot waves started 3rd week of first chemo and have been having interupted sleep since.0 -
Deb Rox - I am usually clock staring from 3 - 6 too ! I do not really have hot flashes much anymore since I have been taking the menopret but I still have pretty interrupted sleep. I have the "aura" feeling of the flashes, just never gets hot. Interesting, I had a very anxious couple of days and the menopret failed me. Several hot flashes... but the anxiety is better and so are the flashes. Deb Rox, it is scarry for everyone to swallow that first pill ! We are all so afraid of the horrid side effects we hear about. My SEs have not been that bad, and some people report no difference. Hopefully you will have little side effects too. Good Luck !
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DebRox----what I have learned here is that nothing is predictable. There are the four commonalities expressed previously. I am now on Aromasin, Savella for the fibromyalgia induced by the AI's. Savella also has antidepressant abilities which-------GOT depression too or more correctly PTSD. Had to go back on pain meds in May with a progressive increase most radically noted in late June >>> worse to end of july. Last Sat(on my b-day) July 30th PCP recommended I reduce my antihypertensive Norvasc/amlidopine by half b/c BP to low. Within 24-36 hours the pain and hot flashing decreased. There is a known drug interaction between the two drugs. Norvasc enhances Aromasin by 75-150%. I made all docs aware of this. No one would budge. The cardiologist threw it back in my lap. If I would stop smoking, I wouldn't need the Norvasc. (please all I know the dangers of smoking). I have posted about how I use the Fentynl patch-one patch changed every 7 days versus every 72 hrs. Inadvertently allowed myself to run out.
The importance of this complete picture is, I didn't need oxy for breakthrough Mon-Thurs. When I had no new patch to put on Thurs., I figured I'd be in trouble. No trouble. Took oxy Sat afternoon and today Sun afternoon. I did want to take one FRI afternoon, but was going to dinner and wanted to be able to have a cocktail with dinner.
This is a huge change----I had escalating pain since April. The change of Norvasc from 5 mg to 2.5 mg. Pain has dramatically changed. At this point going to just follow the symptoms and not reapply Fentanyl, until I reach that pain level that causes me to say "okay it's time". Or if I see that there is a trend of the daily need for the oxy. It's all an evaluation self study thing.
How does this relate to hotflashing------they are also less. DUH----YEAH.
DEB on a page or two ago, I wrote a TO ALL observation about stopping and starting anything that had previously shown some control for flashing, that appears to be a common thing experienced by many from page one. I'm on Aromasin since Nov 2010. Flashing had decreased, but there had been escalation in the last few months as with the pain. Now it's only since reduction of Norvasc starting last Sun. Pain and flashing has improved daily. It's only the eight day, but I'm praying hard that this isn't a fluke.
I know I have already written something here, but didn't give you all the facts. So, forgive the redundancy. If this keeps up, Aromasin is doable. Just last wed &sat talked with counselor and PCP about reaching the point of considering stopping Aromasin.
What a difference a day can make and reducing an offending drug Norvasc.
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I would try anything that could reduce my hot flashes from 12 a day , but somehow I don´t think that is going to happen . I don´t see any change since the gabapentin 12 months ago , there are definately times when it drives me to distraction !
I just wish some of the herbal preparations had worked , I definately was´nt one of the lucky ones there !
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Dang.......this has to be round number 6, 7, or 8 of hot flashes since chemo ended. Chemo ended at age 45 and am not 51. The last round of hot flashes lasted only about a month or two then stopped. i tought....who-hoo...maybe they are really beginning to end. NOPE.....back again......with more of a punch too. The last few nights I am awake at least 10 times a night with them. OHHHHHH, if they'd just stop. Oh well.....life could be worse, right?
Cool hugs to you all.....
Mary Jo
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Omaz...thanks for the link...I look forward to reading it when I have more time.
Which of you has tried Effexor? I have a script for it, but haven't filled it because doc said it can cause sleep disturbance, which I already have, so maybe not my best option. But I'd be interested in hearing how others are doing on it.
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Mouse...I tried Effexor. Didn't work for me. (I wrote about my experience on page 3 of this thread) Everyone is different, maybe it will work for you? Let us know!
PS hillck, I too used to be on Wellbutrin, loved it, but had to go off due to the interaction with the Tammy. ;-(
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Hillck-please don't forget to wean of effexor for several weeks with lowering doses. Some may experience minimal s.e. with just stopping SSRI's and SNRI's. others can be disastrous
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Hmmm...food for thought. At this point, I'm trying to weigh options. Can I put up with hot flashes every 1/2 hr to hour, or do I put another drug in my body. Right now I'm not taking any meds on the daily, which makes me feel liberated..not sure I'm ready to give up that feeling!
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Well I have used the clonidine for two nights and no change. I remember someone else asked how long to try it, my understanding is that it works pretty fast so I am thinking it isn't going to help. I also dries my eyes and mouth.0
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Omaz-give clonidine three weeks
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Hillck-------- my DH's was disasterous-----completely went against what I told him. He weaned off zoloft 50 mg in only one week. Should have been no more than 10mg a week. He lost all feeling in his arms and legs. Instead he listened to an ONC that didn't understand the seriousness of these class of drugs UHG.
TO ALL--------weaning off any of the SSRI's and SNRI's should be in small increments over several weeks i.e Effexor150mg>>>110 mg>>>75mg>>>37.5 mg at a time 7-10days. Then last 37.5 mg break in half approx 18mg for seven to ten days. I would even take the last 18 mg and halve for 7-10 days. If that's not clear PM me.
I've maxed out on PM's for today
Anyone who has been to OMG THEY FOUND A CURE FOR STUPID-------THERE'S A PARTY OVER THE NEXT FEW DAYS. It's a comedy classic. The party will last a days then it may quiet down again. TAKE THE TIME TO READ FROM PAGE ONE IT WILL make you laugh and laugh. best read with an empty bladder
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I don't check this thread that often, but I have been on the Effexor (for FM) for a month now. It has definitely reduced the number and severity of my flashes. Went from 30-40 head-trapped-in-a-sauna flashes a day to 15-20 warm flushes a day. I am on 75 mg. time-released caps. It has decreased my appetite, and the five pounds I could not lose on the Tamox. have come off. It gave me a headache the first two days, but not since then. It's constipating, but the magnesium I take helps. Gives me dry mouth and that is annoying. I take it in the morning and I think I am sleeping better at night because it is helping with the FM pain. It took about a week to feel I was maintaining a therapeutic level in my body.
I've said it before and I'll say it again...everyone is different. Neurontin did not work for me, but Effexor does. Unfortunately, it involves the trial and eror method to find what works.
"Guinea Pigs R Us"
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------THERE IS A HEN HOUSE PARTY in OMG THEY FOUND A CURE FOR STUPID. iT'S BEEN QUIET FOR AWHILE. VEGGEY HAS KEPT IT GOING
http://community.breastcancer.org/102/topic/765586?page=122#idx_3635
EVENTUALLY TRY AND READ FROM PAGE ONE, IT IS A COMEDY CLASSIC------WORTHY OF THE OLD SATURDAY NIGHT LIVE. MAKES FUN OF EVERYTHING. AROUND PAGE 40 SOMEONE CALLED US A BUNCH OF CACKLING HENS. that WAS GOOD FOR ANOTHER 50 PAGES OF TOTAL NONSENSE-------YEAH.
PETERED OUT AFTER THE HUNDRED PAGE PARTY. PASS THIS ON TO WHOMEVER YOU WOULD THINK MIGHT ENJOY IT. AND GET YOUR SILVER HAT READY
sent this to people and threads did however get confused at times and may have had wrong names it------oh well it's them drugs LOL ------invite whomever you would like. I think I will make a knew hat.
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Three weeks for the clonidine Sas? OK.0
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Mouse, I'm sooooo with you. I know I could take something for these hot flashes but the thought of putting a drug in my body doesn't thrill me either. I take no meds at all and keep telling myself this is the normal process of things. Wishin' though, that the process would END. Oh well, in the whole scheme of things, this is small stuff, right?
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Hillck-----I so wish OMG hadn't petered out. It was so funny. Did you make a silver hat? The questions I got about the hat were just too funny b/c I couldn't really explain. No one gets it, without reading all the pages. I'm hoping that some new funny people will stick around and keep the thread going. The latest is chewing wheatgrass while smoking asparagus. Spitting the grass chew and exhaling the asparagus. We are going to bid on this really cute rooster that veggy found.
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Been off BCO for a bit...I saw my ONC a few weeks ago and asked for gabapentin and she said she never heard of it being used for hot flashes! Mind you, I was prescribed g back 10 years ago when I went thru menopause the first time...Now with the AI's the hot flashes are really bad at night - wake up in a sweat - well, you guys know all about that! Anyway, the only thing she could prescribe was Effexor - she gave me a 90 day supply for 75 mg and told me to take only half and if it didn't do enough, then to go to the full pill...I had to send away for it and got it on Monday...Forgot to take it Mon and Tues then DH had to go on a business trip Wed...the night I decide to take a new medication without anyone but my 17 year old dog in the house...I took it before bed at 11 and woke up at 3:30 (after having weird, strange dreams) with nausea, tummy ache and feeling the most strangest feeling I've ever had...I was having cold chills, tunnel vision, anxiety and dizziness...I actually considered calling 911 to just make this STOP!! I finally got back to sleep in a couple of hours and woke up groggy...and I was groggy all DAY...I called the ONC's office - she had said to call after I started the script and told them about this...The nurse said that I had had an allergic reaction to Effexor and not to take it anymore - DUH! So, now I'm off to my PC Dr on Monday to beg for Gapapentin because it had worked for me before - dammit!
Beware of Effexor - It's EVIL!!!
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hillck and Ritaz - I am sorry you guys are having such stuff with Effexor - my onc offered it to me like it was no big deal, now I feel happy I didn't take him up on it! Have done 4 nights with the clonidine. Haven't noticed too much help. The thing that helps me the most so far is chlortrimeton 4mgs at bedtime (antihistamine chlorpheniramine, a very old medication).0
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Hillick: I too am concerned about whether or not this ONC stays up with the "latest" research - especially when I had been prescribed this medication 10 years ago...When she prescribed Arimidex a year 1/2 ago she had really downplayed the SE's. I've learned most of what I know about the SE's from these discussion threads...Such as going gluten free for the joint pain...the ONC had never heard of that either...I dunno, I'm a stage 0 and stage 1 survivor...no chemotherapy either time...maybe I'm just off her radar?
Oh, one one more thing, this same ONC had me do a bone scan before I saw her and she non chalantly mentions that I'm in osteopenia...when my bone scan in Oct 09 showed I was fine! Thank you AI again...and then no mention of what I should do about this...it's a good thing my PCP is a cancer survivor himself...another thing I'm going to address with him...
Think I need a new ONC?0 -
hillck - I have been thinking about that too and did a little reading. I think some of the studies on HER2 and tamoxifen were tissue culture rather than clinical trials. What did your onc show you? I would like to see the original studies. I can look them up if you have the PMID (pubmed ID).
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Thanks hillck - Some light reading for the weekend! 0
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Well I am on gabapentin for nerve pain but helps nicely on the other SE's for arimidex. The second night on arimidex, I thought I would burn my house down from the heat I was radiating. I started the gabapentin 2 days later.... then called the Onc with a constant headache for 7 days....Onc took me off arimidex for a week saying my SE (headache and blurry vision) wasn't an SE but go without it a week to see my headache would still be with me...LOL... headache was completely gone on day 4.. I know he will be telling me to go back on it Monday and that is ok with me, I just wish he would listen to my request to cut the pill in half and let me get used to it for a week or two before taking the whole thing..
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Hillck my repost to you must have been abducted by those bloody aliens. Love the hat idea darling. (voice inflection of anthony hopkins).
Gma wrote a post on Arimidex/femara/and aromasin recently and a drug interaction. It may help a little. It's within the last 2 pages I think. From a s.e. standpoint, with Aromasin I have everything listed on epocrates.com, but the s.e are a bit less than Arimidex. Yet the drug interaction with Norvasc was greater. I have no explanation. When I cut the Norvasc in half 2 weeks ago s.e. improved, but now back on pain med. I just decided I wanted to be pain free for awhile. I will take a close look at the gluten free diet when I next go shopping. With as little as I eat. I don't think i'm getting much anyway. But will concentrate on it.
Bevin I have noticed when I have stuff with corn syrup in it i.e. gatorade --I flash. Thank you b/c of our conversation I picked up and association I may have missed.
Omaz---micardis -an arb was associated with BC. I was on it for 3 years before BC dx'd. Info was on the news in the beginning of 2010. I just went off it versus doing any research. What ARB are you on?
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sas -diovan0
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Rita, I had the same thing happen to me when I tried the effexor, that is why my Onc put me on gabapentin.....and it definitley helps! Hope you are feeling better.
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Omaz --doc tried to switch me to Diovan-------I completely forget why it didn't work for me. I have this bag of drugs in the drawer that for some reason were dc'd , didn't work etc for both Greg and I. I have trouble throwing things out until expiration date. It fills a publixs bag. Standard plastic shopping bag. I wonder how many dollars that bag cost us. I know they all should be disposed of , but.................. I'm a hidden hoarder of everything. I did start to declutter, one space at a time. Decluttering the gift wrapping box, I came across an anniversary card from Greg, why it was in that box I have no clue. Below the sentiment was a hand written note that said "I can't imagine my life without you". Decluttering may again begin sometime.
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Omaz -you have come across the most useful evidence based research , I think I have ever seen. BUT OMG the study of what they have put together would take a really solid mind to do all the reading. They have sited all the articles with links and then given their opinion of each article. They site the article which may have a different reason i.e cardiovascular, then relate how it effects us as BC people. This is huge. The bounty of information is formidable.
The Crete diet supersedes the Mediterranean diet
Omega 3 discussion.
The fishoils which have been my soapbox item for years is supported. Obviously makes me happy b/c i was a flaxseed supporter for years b/c I only bought from proven organic farmer sources. My argument in an earlier time was that producers of fishoils wouldn't guarantee that there were not contaminats in there fishoil products. Then fishoil providers that guaranteed no contamination started to provide a product. Then took both b/c I couldn't find something to change me . So, I split the difference and took both. But then for some reason fell off using them for several years. Don't know why. Then restarted with Bc.. Then got off the fence and took fishoil. Still flax got us here for centuries in populations where fishoil was not available.. A citation further down in the reading gives solid research supporting evidence for fishoil as a benefit in BREAST CANCER WATCH as well as cardiovascular.. I keyed in on that section as it is a particular focus of mine. I am not a believer in "There is only one answer". This site reviews so many different aspects of research and how it relates to BC and other diseases.
But there is so many sections to this whole site. Crips. It would take each of us taking a particular section and reading and making a report. I sound like my Dad handing me a book and saying i want a report. I just don't know what to say.
What I did learn a long time ago, 10 years plus. Is that research in Europe/Britain/Sweden/ Denmark/ Italy etc, it is different than here. They do research on things that they may not get a patent on. It is government based in certain countries . They do it b/c it's the right thing to do versus money driven. Many /most are socialized medicine----they have a vested interest in finding solutions in order to keep medical costs down. Many have integrated there data bases to track of trends and pull info when they come up with new questions. B/c they keep such extensive data bases on their populations, when they decide to do a study, they can gather info really quickly b/c of the databases. So, rather than starting from ground zero on a project, they can identify whether they have been tracking it for years . We here have two long term studies. The Farmingham study which is basically men, And the Harvard based nurses study. The nurse study, I always thought what a joke. Nurses take care of other people, but don't take very good care of themselves. So, I felt any info gleaned from the nurses study was skewed.
Omaz back to your link------please go back and do an overview and make a suggestion as to how we approach it. ----it is too much for one person to handle. So, so ,glad you found this.
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