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Megace

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

So I always say if the cancer doesn't kill you...the treatment will. Megace bought me 3 years of NED but I just want to let you know the trade offs. Constant hunger with a 20 pound weight gain (but that seems to be it. Dead or fat?  I'll take fat!). I developed diabetes and am on 48 units of insulin plus prandin but it's pretty well controlled. But something that was NEVER mentioned to me and is a relatively common side effect is adrenal insufficiency. My oncologist NEVER mentioned this to me nor monitored me for it. Fortunately I have a very astute endocrinologist who waved the red flag. Now I don't really understand the implications of this condition but I sure will now. Let it be a warning to all of you on Megace..it can have amazing effects but you should be monitored for blood sugar and adrenal insufficiency at a minimum. Just sayin'

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

This is why this board is as important as our doctors!  I am just finishing my 21 days on Tamoxifen and Sunday will go back to the 21 days of Megace. I am, of course, too early into this regime to see side effects, but now I know what to be alert for happening.  

I will add a note here - I have been living with my son for 8 weeks now. I was so fortunate to move before Covid19 and to get all settled. My guys are the best and we have moved into a routine that works well. I plan and prepare the evening meal which keeps me busy and helps them. As I read others' comments about this time, I know how to be grateful. We have a large yard and spring is beautiful here. I sit on the porch and just BE. I learned how to meditate 25 years ago when going through first cancer fight. Clearing my mind took forever at first, but through the years, whenever bad times came, I called back my meditation practice. For a type A gal, that is not easy, but oh the relief and calm it brings. I have been practicing it daily for the past few weeks and it helps. 

To all of you - keep calm and carry on enjoying every minute even though it may seem endless, trust that this too, shall pass.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1769
Joined: Jun 2015

Both of you ladies bring so much to our board. You are appreciated beyond words. As is everyone else that comes here. We are a family of sorts, right?!

Hey Donna Faye - please don't ever change this picture! So much pure love and happiness right there.

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

Thank you QC.  Such valuable information.

oldbeauty
Posts: 303
Joined: May 2012

Hi Cheese.  I'm sure I mentioned this a few times in my various posts over the years but if you're like me, if it's not on your radar I just pass the info by as inapplicable.  I was started on Provera when we lived overseas in a British Commonwealth country, where that drug was commonly prescribed for endometrial cancer recurrences.  I was warned at the time of the adrenal issue but was assured that the result was easy to treat.  Back here in the USA, I continued on Provera (where I had to take 40 pills a day bc they don't distribute anything but 10 mg tablets) and consulted an endocrinologist who did the cortisol testing and urged me to stick with Provera because Megace would put weight on me.  I had the full cortisol testing again one year after I stopped taking it bc of the recurrence.  There was zero production of cortisol again, and the doctor told me my adrenal gland likely would never wake up.  But the easy fix is to take 15 mg of hydrocortisone a day, 10 mg in a.m. and 5 mg in p.m.  Now, I don't have any other health issues so I say it is an easy fix.  You also have to wear a MedicAlert warning of adrenal insufficiency bc if you get very ill (like with Covid19 or a bad flu) or you are in an accident, the lack of cortisol production could put you in shock and you die.  It's because Megace and Provera are steroidal forms of the progesterone, and it tricks the brain into thinking it does not need to message the adrenal gland to respond to "fight or flight" attacks, so there's no cortisol production going on.  The longer you're on it, the more likely your adrenal gland will stay asleep even after you stop taking it.  At this point, switching to Provera is unlikely to help on the adrenal front and the weight gain is there and you've accepted it (good for you as long as it is not harmful to your health).  Have you considered Ketogenic or Mitogenic diet?  I know you are a nutrition specialist and maybe, in addition, to providing healthful intake, these diets may help you to lose some weight, especially if you feel like being active during these fine months ahead.  Don't beat yourself up; you would not have refused the Megace if you'd been warned about the adrenal suppression, especially when they would have told you they could "fix" that if it happened.  But, I agree, the big take away is to ALWAYS QUESTION whatever it is that is recommended in this cancer fight.  Best wishes, Oldbeauty

MAbound
Posts: 1114
Joined: Jun 2016

You posted while I was typing! Wink

MAbound
Posts: 1114
Joined: Jun 2016

Somebody told me about the issue with adrenal insuffieciency when my gyn-onc and I were discussing adding megace to my treatment plan while I was getting chemo. It was somebody on this board, but I'm not remembering who. I'm thinking Old Beauty or Pinky, but not sure. In any case, I learned that should adreneal insufficiency develop it could be dealt with by taking a med, so I decided I could handle that and went ahead with the treatment. Radiation was scaring me more at the time because of the potential for late-occuring side effects which have turned out to be a bit of a problem for me, but it was still worth taking the risk in my circumstances. I'm just really hoping that the higher risk for a different cancer doesn't happen. 

I'm pretty sure that adrenal insufficiency from prolonged use was also pointed out in the literature that came with each refill of my Megace.

Cancer is a tough beast to battle and unfortunately I don't think there are really any treatment options that I can think of that don't have some serious potential downsides that go along with their benefits. No one thing is going to work for everyone and they often do more harm to some and not others. It's a crap shoot whatever you do, that's for sure! I had a lot of regular blood work while on Megace, so it surprises me that CQ wasn't being watched for this, especially given what it did to her blood sugars. The impact of Megace on me was much milder, but I was taken off of it after 18 months by my new gyn-onc when I moved, so I escaped developing adrenal insufficiency.

I gained back the weight I lost during chemo while on Megace plus a few more, but lost a chunk of that again when I developed diarrhea for over 6 months just before stopping the Megace. The medical consensus was that it was from the radiation after putting me through a bunch of tests. Having got past that, there is now suspicion that I may have a stress fracture in my right hip from repetative exercises I do for stability and muscle strengthening. I'm still walking, but with a pronounced limp, pain, and not very far. It's hard to sleep with it, too. This, again, may be a late occuring side effect of the pelvic radiation. I had a normal bone density scan months before my cancer diagnosis, showed osteopenia in both hips 2 years afterward, and now waiting to see what a a scan I have scheduled for June shows, if I get to have it. if nothing shows up on the density scan, then it's on to an MRI to determine what the heck is going on. It's always something, isn't it? But, hey! I'm still here and I'm NED!

MoeKay
Posts: 329
Joined: Feb 2004

In 2007, I was in the middle of a Mortal Combat class when I started to have considerable pain in my right hip area.  When the pain didn't subside after a few weeks, I had an MRI.  The impression was a stress fracture of the right mid-anterior acetabulum, osteoarthritis, and insertional tendinosis of the gluteus medius.  I was put on crutches for weeks, got relief and was able to make it another year or two before the problem resurfaced.  I had repeat MRI's many showing a possible right hip stress fracture.  (I haven't gone through all my reports now because it would take the better part of the day there are so many).  Once again, I was put on crutches for weeks, but this time when I came off, the pain was still there.  I tried physical therapy several times, without improvement.  I had a limp and pain, but as things progressed, I became unable to get my right leg into the car without picking it up with my hands.  At that point, I went for a second opinion at a major orthopedic institute in Philly.  The happy ending of the story is that I needed a new right hip.  I had the surgery one day and was home the next.  The orthopedic surgeon, who reviewed my piles of MRIs from over the years, said that his belief was that I never had a stress fracture, but that what was showing up as a stress fracture was actually the inflammation from the hip osteoarthritis. 

I checked my DEXA scan results and I too have left hip osteopenia (that's the hip they measure).  My T-Score was minus 1.1 in both my 2012 and 2018 DEXA scans.  You might want to try using crutches for a few weeks to see if they give you any relief.  Also, sleeping with a pillow between your legs might be of some help.  I'm not sure what if anything my radiation had to do with the above saga, but my sister had a hip replaced at 46 without ever having cancer or radiation.  I was 64 when I had my hip replaced.  So who knows?  I was back doing whatever type of exercise I wanted within 6 weeks of surgery, and compared to my radical hysterectomy, having my hip replaced was a breeze! 

I'm not saying that I believe you need a new hip, but I just wanted to alert you to the fact that in my opinion, orthopedic scans can have considerable limitations and things are often not what they seem. 

Good luck, MA!

MAbound
Posts: 1114
Joined: Jun 2016

Your words about hip replacement are just what I needed to hear because, of course, that is where my mind is going. I'm in no hurry to have surgery as things stand right now. I'm managing, but a bit concerned about doing anything that would make it worse. For now, I'm hoping it will resolve on it's own, but I want to know for sure what I am dealing with before I go back to anything that puts all of my weight on one leg or the other again. I think I'm more of a walker than crutches kind of girl. I was such a klutz on crutches 30 years ago when I shattered my ankle on the same leg that I shudder to think of using them again. A walker is kind of like crutches with training wheels, isn't it?

Mortal Kombat? Wow! You are really badass!!

Thanks for always being here for me.

Pat

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Truer words were never written - it is a crapshoot and we all roll the dice as we decide what we hope works. But thank you all for every word you write. I tell everyone about how much I depend on this site for support and knowledge. 

Fridays Child
Posts: 207
Joined: Jul 2019

Thanks, y'all, for posting this.  Sometimes I read the potential side effects and wonder how many I'll get.  Cheese, did you have symptoms or was it something that showed up on a blood test?

On a related note, did it make anyone else's hair thin? When I was on letrozole, after about 9 months mine started thinning a lot.  They changed me to Megace for other reasons and the hair loss slowed, but hasn't stopped.  May have picked up some recently (they doubled my dose in late December.)  I'm wondering if I'm going to have to go back to scarves and wigs.  So far it's maintaining "stable disease."

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