Hot Flash Forum!
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A few seconds ago sas-schatzi wrote:
TO ALL OK went to Moffit today- There are 17 NIH cancer centers in the USA---Moffitt is one-----After contact with all their people------I was undecided-----then I remembered my proactive stance the last time with going for the elective BMX which saved my life-------I then went------duh----what are you waiting for-----out it comes. ------------Now have to work on scheduling.
At one point I said to the doc "I'm tired of cancer, I'm tired of talking about cancer, I'm tired of waking up in the morning worrying about cancer," Then I think the clincher was he said if I was 30 they would remove it , but at my age(61) they would wait till it was larger. I'm thinking bad words at this point In my mind . Then he starts talking about it negatively impacting someone's life. I say" Doc If I were to ask you on a date right now and then have to say -------well , I have this brain tumor that's being watch for cancer---what would you do" Clicked my fingers as the hand waved backwards and went PHFTT with my lips. He is a serious doc -------He leaned back and laughed.He is also, the first doc that when asked this question which is important to my type of brain tumor."Can you tell me that b/c it doesn't have a mass effect or edema that it's not producing estrogen and is not malignant-----His response was "No" Only doc that would commit to that statement. Give him great credit and respect for that.
I said "I can't move on with my life till we know this is negative." One way or the other I have to tell the truth should I meet someone. Until a pathology report is in I can't do that."---------
Then on the way home, I got near a weepy spell , just then I realized I was going to Ocala and not home--------took and extra hour , but gave me time to think and resolve. Bean is going to be history. I will add to that Bean will be history before I am.
Now I am amazed that I did not end up in a trauma unit b/c the expressway traffic is crazy. It's like Miami-------Everyone exceeds the speed limits by 20 to 40 miles per limit.Weaving in and out.
Chrissy will so get this b/c we went to Miami together-----------totally nuts
I'm going to C&P this to several threads. For all that have prayed thank you, for all that cared about what I was going to do with Bean, thank you, my resolve is strong without reservation, Sometimes a wrong turn can turn out right. L&H's Namaste sheila
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(((((Sheila)))))
Glad you are making some progress, glad you are persevering to take care of YOU!
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SAS I admire your candor, and the fact that you may have shaken up your Dr. a bit (in a good way!) Thinking of you.
Wendy
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Agree SAS, good luck!!! Keep us posted.
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Thanks everyone. will keep on moving.
Has anyone noticed that the longer we are on this drug garbage the less the side effects?
Going to go off aromasin before surgery, and suggestions on how long beforehand. Rationale is it's affect on immune status. Immune status can affect recovery and leave us open to infections. So, I'm not risking that with my brain.
L&H's think of ya'll often sheila
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My hot flashes seem to have dramatically subsided. I'm not doing anything different. I've been on Tamoxifen for about 6 months now. Any idea what this means hormone-wise? I'm 14 months without a cycle now, too. Could "the change" be done? I'm only 38. Could my hormones be flowing again? I was >95% ER+ so that freaks me out. My MO says it's 5 years of Tamoxifen no matter what because of my age and apparently menopausal status can change.
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Sheila: No idea on when to stop Aromasin before surgery. Best to ask the old doc! And yes, the SEs (for me, dry skin) went away after a couple of months.
Sundermom: If you are like many of us here, our hot flashes have been reduced with the onset of winter. I noticed a dramatic decline in mine when it got cold out (I have been on Tammi for 9 months). This week, however, we had much warmer temps — and my flashes returned as strong as ever! So I wouldn't worry but mention your concern to your MO next time you see him/her!
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Anyone interested I wrote a new topic thread on constipation------ah the things we share-sheila
http://community.breastcancer.org/forum/6/topic/781867?page=1#post_2830873
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Oh Rennasus, you just poked a big pin in my balloon. I was really enjoying my la la land fantasy that the hot flashes would NOT go back to business as usual with the warmer weather that's just around the corner.
Poke - kablooey - pffffffftbblffffft.
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Well my flashes have been better during the winter but it was warm today, in the 70's and I had more noticeable flashes. Must just be better when it's cold. Sigh.
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Believe it or not, today I was praying for a hot flash. Only had a few of them. Have been SOOOO cold!!! Just to-the-core, bone-chilling cold, cannot get warm. Took my temp tonight just as curiosity - 97.8. Still curious. I am heading to under the covers with layers of fleece and blankets. Borrowed a space heater for my office at work today, which helped a little.
I have been off Effexor for almost a week after titrating it down slowly, half doses, then every other day, etc. over about 2-3 weeks. The vasospasm in the hands has really settled down, so despite being cold, my hands weren't too bad!
Finally, a little relief from THAT miserable SE!Sheila, I hope you are having a better day in general. Sending lots of hugs to everyone.
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hillck - my fingers are crossed for it to keepon workin!!!0
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Hillck hey long time now see, What dose of Effexor were you on before? Sheila
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Well, that is interesting, Cindy. It ran through my mind just yesterday that it might be a real relief to get something like that up and working before the weather starts getting hot here again. Last summer just about did me in, seriously. This winter has been a wonderful reprieve but I bet those horrific flashes will be back three short months from now.
So do keep us posted on how the Effexor goes, okay? My onc has encouraged me to take it for years now and golly I would dearly love to feel better, but to be honest I'm terrified of taking another med that causes weight gain. I've packed on 20 pounds in the 15 months since my ooph and starting anti-hormonals, enough to go from looking slim to looking poochy everywhere and having to buy new clothes. Not fun.
Does Effexor always cause weight gain?
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Hillck that's why I asked about dose. Drugs may act one way at a low dose, different at an intermeddiate dose, and then again way different at a high dose. I'm on Savella------standard daily dosing is 50 mg twice a day-------I take 25 mg twice a day doing fine.
When I started Celexa , I started at 10 mg, normal is 20 start dose-------s.e. out the wazoo.
REN saw your message about when to stop aromasin thanks will f/u
LULU was it you that asked about the pet scan and colonoscopy's I got an answer, It on the constipation thread.
To all I started this constipation thread-----and the poops hit the fan--------55 response in< 21 hrs and 465 viewing. Some are mine. I wasn't going to monitor it just let everyone put there own remedies down. But there are lots of technical poop questions., Then a few hours ago I found out my link didn't work. So, had to fix on as many threads as I could remember. What a pain in the butt. BTW puns are encouraged. What other thread would be as perfect for a pun than poop LOL.
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hillck - Makes you wonder about the first brand!
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hillck - Thanks. Can you ask for the authorized generic ?0
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Thanks for the info, hillck!
My DH is a pharmacist so I asked him about this. Here's what he told me:
Pharmacies get their generic drugs from wholesalers — they don't have control over which generic drugs the wholesalers send them. The large chain drugstores have little control over which wholesaler is used; whoever has the lower price is usually how it is decided. Not sure if a small Mom & Pop Pharmacy has it any better, but you could ask.
If the tablet or capsule looks different when you get a refill, you know it's a different manufacturer right off the bat. But to know for sure, always check the description of the tablet/capsule that is on your Rx bottle label — it describes the look of the pill but it also lists the code number that is imprinted on each pill. That's how you know for sure if you are getting the exact pill each month.
You can request that your pharmacy fill your Rx with a specific generic brand; sometimes they can special order it for you — but sometimes a certain generic is simply not available to them.Hope that helps!
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Hillck----I cannot believe the number of times I have asked the same bloody question. And got the response "A generic has to be equivalent to the primary drug" ----You found this info where?
It's majorly significant. Chicky, you should plaster it on many pages.
My drug interaction of Aromasin with Norvasc was majorly changed starting on july 31st 2011. Norvasc enhances the action of AI's by a variable but significant %. Doc reduced dosage of Norvasc to 2.5 mg from 5 mg b/c of BP. Within +- 36 hours my whole page of s.e went down. I was happy. Until next brain MRI and tumor grew. Well was there a relationship don't know . If I had a MRI the day before drug change and then a post mri that showed growth. Well, might be a consideration. I electively went back on the 5mg of Norvasc when things at the ONC's office wasn't working -------took 7 weeks -1 day to get the flipping correct order to the insurance company, they approved it , in < than 5 business days ,Moffitt call on FRI. had me in on MON. Today MO agreed that there surgeon okayed the surgery and new MRI this week.
What's interesting and haven't followed thru on is and ARNP cousin just went to a seminar on use of drugs in combination to enhance therapy. I have known from the Jan 2010 that there was a drug interaction between the two drugs,----------did the docs care --no--Won't waste your time with the responses. But All Ai's are enhanced by Norvasc, When a drug is enhanced so are s.e's. Oddly though when I went back on the 5mg norvasc the s.e's weren't as bad. On July 30th PCP and july 27th with counselor, I Talked with each about QOL issues and that I wanted to quit aromasin----didn't want to talk to MO b/c I knew his position.HILLCK now I have to question pharmacy substitution. b/c the s.e's have not been the same. SO< what changed? Body adjustment or drug substitution?---------Cluck'em---------I so hope this rant makes sense, I'll revisit it and correct for errors.
ALL clucking drugs have consequences, and some can kill, maim, harm, hurt, and fix things. B/c I chose to go back on the higher dose of Norvasc did that pervent the further growth of the tumor. Don't know but not going to risk further growth, Bean is going to be history. Except I stayed up all night on the computer. It's FRI-------In florida docs have taken to not working on fri.
Sorry, ya'll, I failed you in not contacting Freedman, been in the dumper sense growth was identified, OMAZ thanks for your follow up, medical abbrevaiation F/U--------had to clarify that in case I use it again, that no one thinks I flipping the bird at them. LOL.and serious
I so, wish none of us were here, May you all find peace Namaste sheila
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((((Sheila))))
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Weird thing about hot flashes. Mine have changed SO much - now I end up DRENCHED in sweat about every couple of hours rather than feeling so hot and ready to faint every hour with heavy sweat. Still get cold easily, drenching sweats seem to occur when I put on a sweater to get warmed up and it seems maybe the thermostat in my brain thinks I am getting TOO warm so tries to cool me down??? Well, THAT it does! So I go from cold to drenched to cold again. Grrrr. Cranky here today. But it's Friday, thank goodness!
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Neurontin 600 mg day eliminated most of my hot flashes. Was already menopausal and on .325 mg premarin when i was diagnosed. Am taking arimidex now. No ovaries.
Eating
Frozen grapes helps, too.0 -
OK...I finally started tamox on Feb 1st and so far so good. My hot flashes have not increased at all...maybe they are even getting somewhat less severe. I am 71, so how long would it take my body to adjust from going off the HRT. It's been about three months.
I'm doing the tamox vs an Al because the SE's are less, and I should be able to tolerate it well. I have a study that says that post meno women can take tamox for 2/3 years and then switch to an Al and receive the same benefit as if they were taking the Al, with fewer bad SE's. My MO agreed that this protocol was good for me.
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Well ladies -- I have not started Tamoxifen yet -- March 14th -- after one more appointment -- I am already having hot flashes and not liking them so I gather they are going to get worse once I start the meds. Something for me to look foward to. Thanks for sharing all your great ideas and comments -- I look forward in getting some sound advice and of course a few laughs too.
Joanne
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I just ordered 4 cool wick-away nightgowns from TLC on sale! They are long-sleeved, but I tried one and it really does feel pretty good. Also, I think someone on here suggested keeping a stack of dry nightgowns by the bed - I have been doing this and as soon as I wake up drenched with a soggy nightie, I change right away and feel oh so much better, don't get chilled so badly after the sweat. (seems I just am cold, have drenching sweat that is no longer hot, then more cold). *sigh*
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Linda------(sheila)----------- yes screaming as you are. Blankets on, Blanket off. Socks on -socks off. Fans on -----fans off----------I need to go play the quitar, L&h's sheila
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Lynda-----keep sheets and pillow cases for quick change. Instead of using a fitted sheet , use a flat sheet. Easy to whip off and put another one on . Don't bother tucking. works great. I still am doing it this way even though I no longer need too. I moved each rooms linens into that bedroom in a drawer. This way no searching through the linen closet in the middle of the night.
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Hi ladies! I'm from the LCIS board. I wanted to share that I started taking MACA for hot flashes and the change has been REMARKABLE! I was having 6-8 bad, long hot flashes (after going off BCP). (I am 44...and also probably in pre-menopause). I take it about 4 times a day - about half a dropper in a swig of iced tea or cranberry juice (it tastes pretty bad but these two juices seem to mask it best). I am down to one or 2 a day, much shorter in duration and milder...and NO night sweats! The brand I am using is Healthway Maca - herbal supplement. I am thrilled and just wanted to share if anyone wants to try it. Our health food store owner recommended it to me. 0
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tpup......thanks for the info on Maca. I done a little reading on Maca and it sounds like it is safe to take....I will look into it. I am still having good results on watching what I eat. I think preservatives in foods triggers my hot flashes. As long as I eat mostly natural foods I have milder flashes. But it would be nice not to have flashes at all!!0
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tpup....my local healthfood store had the MACA Root herbal supplements 525mg. I bought a bottle. I took 1 capsule last night....as a supplement the directions say to take 1 a day. Do I need to take more for hot flashes?....I read on the internet to take higher doses at first then when symptoms disappear reduce the amount you take......also take a break from them...like take for 30 days...leave off for 7 days. Funny the salesperson asked me if I was a fan of Dr OZ..LOL....yes but have not heard him talk about MACA root. These health food stores must get lots of Dr OZ fans asking for certain supplement.
I had a total hyster last summer...wonder if it is OK for me to take?
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