Megace

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.

Thank you QC.  Such valuable information.

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!

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. 

MAbound said:

Every benefit seems to come with a cost

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!

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!