Megace

[Di16]

I had a scan last week, the first since December due to Covid restrictions. They didn't want to do this one, said they still weren't doing routine scans. I told my cns I believed m]the Letrozol I've been taking since April 2008 was no longer working. She agreed to arrange a scan. I had a telephone appointment with an onc yesterday. He said I was right, & they're changing my medication to Megace. I was relieved not to be advised chemo this time. He also wants to discuss me with the surgeons at the next mdt meeting. But I think that's a waste of time. One of his colleagues did that 3 or 4 years ago, & was told I was too big a risk, & I had surgery done at a different hospital by a younger radical surgeon who was prepared to take me on for it.

Is anyone else on this forum taking Megace? I know there are ladies on one of the gct forums who've taken it. Di

[Madmarilyn]

Hello Di, sorry to hear this - what made you think Letrozole wasn't working, and what did they see on the scan? I've heard about Megace, and would say the GCT ladies would have some advice if you haven't already asked them?

If this surgeon felt you were too big a risk last time, maybe you should ask for your young radical surgeon's opinion this time, depending on what they saw?

Good luck and keep us posted.

[Di16 in reply to Madmarilyn]

I've been feeling more fullness, and more backache (although the backache could possibly be at least partly due to lack of exercise while shielding) & just a general feeling that it wasn't working. At least the hospital listened, & scanned, & saw that all my tumours had been growing.

I don't feel in any hurry for more surgery at present, feel I would like to give Megace a chance, so I don't feel too concerned about how the surgeons might react at the moment. Perhaps I'm just wanting to put off thinking about the possibility. I've had 5 operations for gct & another for a strangulated incisional hernia in the last 12 and a half years, all except 1 between 2008 & 2013 & have got used to relying on medical treatments now.

How are you now?

[Madmarilyn in reply to Di16]

Maybe there are another drugs to consider too, alongside Megace? I thought about adding Lupron or possibly Zoladex to Letrozole as my Inhibins drifted higher. In May, surgery was suggested, and I had a pelvic lymph node removed in July. I was hoping that would 'reset' me, but my July post op bloods showed an even higher reading than May, which is a huge shock. I am clingin to the hope I just took them too soon or that they are rogue, but know that I need to think f other alternatives. I will be discussing the two drugs above to see if they might help me.

Keep me posted and good luck. It seems medication has worked well for you and that your tumours grow slowly, so definitely worth trying a change. X

[Di16 in reply to Madmarilyn]

I hope you find alternatives that work for you. Zoladex unfortunately didn't for me, though I was told it was a stronger .drug. I haven't tried Lupron.

I'm definitely trying the change of medication for now, whatever the surgeons say, & if surgery does become an option again in the future, will have to decide then what to do, but not rushing into thinking about it at the moment. Di

[Madmarilyn in reply to Di16]

Goodbye plan. More search and more opinions. Seems your tumour are slow, so you can afford to take all the time you need. Hope you get good advice from GCT ladies too! X

[Di16 in reply to Madmarilyn]

Thanks Marilyn. Another reason I'm hesitating to think about the possibility of surgery is that after the last 2 operations, the beast recurred again very quickly afterwards. At least, as you say, my tumours are slow growing, & medication has slowed progress down a lot, sometimes led to some shrinkage. Di

[Caleda4]

Hi I was on Megace for a month whilst waiting for results from a biopsy. I did have nausea,but found mint tea and ginger biscuits helped. The drug did prevent my numbers going up until I started chemo

I hope it works for you x