Whether to stop treatment

Pennielane
Pennielane Member Posts: 8
edited October 2021 in Uterine/Endometrial Cancer #1

i was diagnosed in 2015, surgery, chemo, radiation, more chemo. A year after surgery I had a recurrence in my lungs and started taking megace (200 mg/day). I have been on the megace since then, now just over five years. No evidence of disease for several years. But I have gained 25 pounds, had blood clots, and now starting bp meds as a result of weight gain. All side effects of the megace. My oncologist would like me to take a break from the drug. I'm afraid of recurrence when things have been so controlled. I'm the longest running patient at DFCI gyn on the meds, so no track record. Anyone else been on megace this long? Looking for experiences, words of wisdom. Thanks!

Comments

  • SF73
    SF73 Member Posts: 317 Member
    edited October 2021 #2
    I stopped taking Megace only

    I stopped taking Megace only 6 months after the end of chemo. I was on a smaller dose (80 mg twice a day). Mine was also after a recurrence (though not sure if it was a recurrence or cancer that was not removed during the initial surgery) I remember being very nervous about stopping the treatment but wanted to stop because of the side effects you are mentioning. (I gained the 20 lbs that I initially lost after diagnosis and went back to my original weight after I stopped Megace but that's a discussion for another post) From your description it sounds as if it is time for a cost benefit analysis. If you have been cancer free for 5 years, wouldnt BP and Blood Clots weigh more in your decision? These are such tough decisions. Good luck! 

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited October 2021 #3
    Following in your footsteps

    My original diagnosis was in 2012.  In 2018 they discovered a late recurrence (pelvic tumor invading hip joint, and mets to both lungs).  I had radiation and chemo, after which they started me on letrozole.  About a year later (fall 2019) they changed to megace.  Started at 40 mg once a day and increased it to twice a day.  The pelvic/hip tumor shrank during treatment but is still there, though it's remained stable.  The medical oncologist says once it's been five years since finishing chemo, they'll consider stopping the megace but scanning me for a couple of years to watch for tumor progression.  The gyn oncologist said they've had people on it for seven years.  I should ask if age has any bearing on how long to take it.

    Like you, I'm concerned about stopping.  So far I've managed to avoid weight gain but it's not easy.    Good luck with your decision!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    edited October 2021 #4
    I wanted to thank you ladies

    I wanted to thank you ladies for coming and share the latest with your treatment.  Unfortunately I do not have any words of wisdom but clearly you have very difficult decisions and my prayers are with you. 

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