Mets to adrenal glands, anyone?

[Gemmyw]

Hello All,

I had scan results yesterday which weren't great news. My second line treatment of carbo/caelyx has utterly failed and I've had progression whilst on it. Platinum resistant, oh great. I had a terrible time on treatment so I'm incredibly disappointed to know that none of it was worth the bother!

Part of the progression is to my adrenal glands. Does anyone here have experience of that? I'm super-curious though as I can't find much info on adrenal mets really. My back is jolly painful.

I am currently being handed over from my current onc to a different one and am waiting for an appointment with the new one to discuss treatment, which I'm guessing will be weekly single agent Taxol.

Thank you for listening xxxx

[Fred22]

I’m so sorry and I haven’t had that progression but just wanted to reply to say I’m thinking of you. I know it’s different but I seem to be having progression to para aortic lymph nodes- rescan on 26th to see if it’s worsened and make decision re treatment. I have the worry that they will suggest chemo and it won’t work because I have clear cell - and to go through all that again for nothing. So I really feel for you and hope they can do something to sort it out. Sorry I don’t think this is really very helpful but really hope there’s someone out there who can share a similar experience. Fionax

[Neona in reply to Fred22]

Hi Fiona, just read that you have clear cell. Please be aware that there is a clinical trial for clear cell called Atari. The drug is the same as the one that I’m on- it is an ATR inhibitor called AZD 6738 plus Olaparib. I have been on AZD 6738 monotherapy since December 2017 and my tumours have reduced from 13.6 cm total to 5.2 cm total so far. I am on the Patriot trial but it is closed to new participants now but the Atari trial is recruiting .

[Gemmyw in reply to Fred22]

Thanks for your reply, Fiona. I have mets to lymph nodes too, including para aortic. They think it's spread from there to my adrenals. I had a hard time in carbo/caelyx and I'm pretty devastated that I went through it all and things got worse anyway. Of all the unfairness of this disease, this feels like the harshest thing I've had to deal with so far.

Wishing you the best of luck for your scan. Such a nervous time and there's little anyone can say to make it feel better, but we're here to try to anyway. Not having a plan is a horrid place to be and I hope that you aren't left hanging without one for much longer. x

[Neona]

Yes I had adrenal nodules but they are absent on my scans now. I am on a clinical trial. The adrenal nodules are not target disease on the trial but are mentioned on the scan reports . I don’t really know what they are. Most of my disease is peritoneal and hepatic but I don’t have a picture in my head of where it is really. I am platinum resistant and have clear cell.

[Gemmyw in reply to Neona]

Hi Neona,

After posting on a few boards, you're the only person with adrenal involvement I've found. When I googled it, I did get the impression that it wasn't that common for ovarian mets there.

My mets are over 3cm on both sides and I'm getting a great deal of pain in my back as a result.

Good to hear that your nodules appear to have been cleared by the trial. May I ask which one you are doing? Guessing it will be clear cell specific for you. My consultant said it was likely that I'd need to look at them if the weekly Taxol doesn't work.

[Gemmyw in reply to Gemmyw]

Silly me! Just seen your other post and can see it's Patriot!

[Neona in reply to Gemmyw]

Yes Patriot. It is closed to new participants but was a phase one trial for solid tumours in general. Now there is a phase 2 trial with the same drug for clear cell and other rare ovarian cancers. Are you high grade serous? My adrenal nodules were probably small as they were not included in the targeted lesions.

[Gemmyw in reply to Neona]

The pathology of my tumours was a bit of a jumble, but the consensus was high grade serous as I recall. There was a suggestion that it might be endometroid ovarian, but HGS won out in the end. I guess, if it ever comes down to thinking about trials, my consultant will review.

I might be getting Avastin alongside weekly Taxol. A gather that there is some evidence that they enhance one another.

[Neona in reply to Gemmyw]

Well the Atari trial has an arm for endometriod which has similarities to clear cell so probably worth making a note of it for the future.