Advice for second line treatment after first line chemo - serous endometrial carcinoma stage 4

FormerMember
FormerMember
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Hello all

Like many, I have stalked this forum for a long time trying to glean advice and information. Your posts have made something confusing and scary far more lucid and "workable". For that, I think you all so much but, in particular, the forum's resident superstar Daloni who has helped me more than she can know!

Actually, I am a bit of an imposter as it is my very much loved mum that I have been gleaning information for. She is 74 and was told last April that she has stage 4 serous endometrial cancer. It was - as you can imagine - a massive shock as she had never had a symptom and it was only discovered on a routine ultrasound concerning a pessary (no idea what that it is...). Mum was really quite heavy with disease apparently including a few small spots on her lungs which of course meant stage 4 and incurable.

Anyway, thanks to Daloni's eloquent posts, I was able to get her to see Dr Kristeleit as a private patient. She is a calm, matter of fact but quite reassuring oncologist at the forefront of many of the clinical trials so we felt quite safe in her hands. Mum went through the 6 cycles of carboplatin and paclitaxel with almost no side effects and we were very hopeful when Dr K said after the third cycle that her CA125 had come down to almost normal from 175. Indeed, after the 6 cycles had finished, mum was in complete remission and had had an excellent response to the chemo. Her CA125 was 25. Great. Fabulous. What an amazing result. I imagined given such a response we would have at least a year all clear... but 7 months later Dr K has said that there are two "small, suspicious lymph nodes at the base of the spine". It was a real blow. Bizarrely - and here's the twist - her CA125 has gone down to 23!

So, now the battle starts up again and I don't know what course to follow. Mum is BRCA negative, hormone negative, MSI stable and no Lynch. Dr K is suggesting mum participates in the Copelia trial but my concerns are: 1) there is only a 1 in 3 chance of getting the trial drugs; 2) olaparib is a parp inhibitor and I thought parp inhibitors only worked with a positive BRCA status 3) she has no symptoms whatsoever, she is likely to become chemo resistant somewhere down the line (and treatment options will then be limited so i want to push that day as far into the future as possible) - ultimately, does it make sense when you are incurable using a valuable chemo when you have no symptoms?

So, I just wanted some advice as to the best course of action. I don't think there are any other useful UK trials on offer - there is a great one in the US of niraparib which is effective irrespective of BRCA status but, of course, a little bit of trek to participate in that one! Keytruda is effective only in MSI-H women so I understand so what alternatives are there?

I would be so grateful if any ladies out there with stage 4 serous and a recurrence could tell me what they did next and how it worked out for them. I just want to take all this away from my mum and make her better - i don't know what I'd do without her.

Cath x

  • FormerMember
    FormerMember in reply to FormerMember
    • Hi ! 

    How nice to hear from you. You’re not the only person to ask the same. I think people thought I’d become invincible. Sadly not.  This cancer is still a killer and prevention is still better than cure. 
    Thank you for your kind thoughts for my daughters. They are young. But they’ve been surrounded by love their whole lives and they will be ok. They will never fully get over the loss of their mum but they will be ok. Yes I do truly believe that and it feels good to write it down. 
    How is your mum now? I’d say don’t spend the time fearing. Enjoy each day now and find the joy it has to offer. Plan for the day she needs care. Even if this hospice experience is not quite what I’d had in mind (I’m in an unexpected place, Covid is making life difficult) it’s something I planned for and that helps. 
    xxx

  • Hi   I want to echo SootyTheBear's good wishes to you.  All the very best to you.  LR.  xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Daloni. My mum seems fine. Her ct scan last week shows that the two lymph nodes may have increased in size (but they can’t find the previous cat scan so can’t be sure Flushed) but no spread to other organs. Mum was wrong about the location of these two lymph nodes - she said spine but it seems they are para-aortic which sounds a bit aorta-y for my liking! Still, she’s symptom-free and since the shock of learning about the incurable diagnosis has sort of sunk in after 15 ish months, it’s bau and she continues to annoy me as ever. Feel a little bit bad being annoyed but then think she’ll probably be pleased I’m treating her normally so relish the annoyance!! As no symptoms, she’s not in the Copelia trial and not doing any chemo either. I guess we are waiting for the symptoms to start which is unsettling.

    Did you ask the dreaded how long question? I don’t think I would in that position because I feel once you’ve been told your body is inclined to work to that deadline. And you could be here a while longer than prescribed. Would you like that? Or have you had enough and want to wave the white flag? Either way, you sound very peaceful and that’s something most of us non-ill rarely achieve. I certainly feel more restless with the (my) world’s problems than ever. I often think life is t really worth it actually and it seems very unfair that people who love life die when people who live downright miserably live on and on... something not right there!

    anyhow, see you’ve been chatting on the forums today so pleased things are included control and you can have some stimulus. Hope you’re ok. X