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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.
And if anyone could tag Daloni, that would be super (although I completely understand if she prefers not to reply).
@daloni, see above
Thank you x
So sorry to read about your mum SootyTheBear I will just tag daloni again for you as I'm not sure the other one worked.
Wishing your mum all the best,
Hugs, Lesley xx
Thank you Lesley x
I am so sorry it’s taken so long to rouse me. Thanks for your kind words; I’m glad you found my contributions useful and that you and your mum were able to find your way to Dr K.
I am so sorry to hear about your mum. I think your question about the value of treatment when you are asymptotic is really crucial. I can’t really advise on the Copelia trial as first of all I am not a doctor and second I have a vested interest as I’m the patient rep on the study. However I can help explore what I would see as some of the pros and cons.
You are right to say your mum would have a one in three chance of getting the trial combination of olaparib plus Cediranib. She’d stand a one in three chance of getting the other two options too - paclitaxel alone (the control option) or paclitaxel plus Cediranib (the other experimental option). There’s reason to think either of the trial options is likely to be better than the control, which is the standard treatment.
So if your mum took part in Copelia she would stand a two thirds chance of getting a trial option that might well be better than the control and a one third chance of getting the standard treatment. One line of thinking would say there’s nothing to lose.
Except that all three options come with side effects and this is where your question about having treatment when you have no symptoms comes in. Is now the right time for your mum to have some treatment or would she be better enjoying treatment-free life while she has no symptoms? I can’t answer that. Maybe Dr K can help.
I hope this helps. Good luck! xxx
What is a community champ?
Thank you so much Daloni - honestly, you're a bit of a hero of mine and I really appreciate you taking the time to reply to my post. Really. thanks. I think I love you a little...
I'm surprised to hear that you are the patient rep for the Copelia trial - are you participating in it too? I recall (perhaps incorrectly) that you were less than enthusiastic about it in an older post - has anything in particular changed your mind? I would be really really interested in any information you are prepared to divulge! I know Dr. Kristeleit is the chief investigator and I suppose I'm a little concerned that she is keen to fill the places - I need to be sure that we act in my mum's interests and not the trial's however selfish that may sound.
I totally get the trial benefits versus side effects dilemma when symptom free. I don't know how trials work - are you able to start them when you choose or is there a particular start date? It would be good if we could hold off until things got a bit more advanced and then start. And if mum was allocated just the standard paclitaxel, do you know if she could withdraw from the trial?
I have, being the stalker I am, read through your background and was interested that you had SABR on your first recurrence. From what I understand, mum only has two enlarged lymph nodes so I was thinking that instead of starting chemo, would it not be better to save her chemo up for a rainy day and instead treat the two nodes with SABR?! I know you are not a doctor but just intrigued why this hasn't been suggested. And, ahem, I also read that your second line chemo was carboplatin and PLD whereas the standard is paclitaxel. I was wondering whether you thought that was more effective in your experience than just the paclitaxel? If it means mum keeps her hair that would be a real morale boost, I think, but only if it works.
Finally, I was wondering whether you had heard of niraparib? Apparently it's a trial maintenance drug that shows significant response in serous endometrial. Another one I have read about is nivolumab (why do they always end in "ibs" and "abs"?!). Both trials are in the US but I was thinking of emailing them to see if they could help on a compassionate basis. Probably grasping at straws but I need to feel that I have exhausted all options.
Anyhow, Daloni, I have taken up far too much of your time already. Please do not feel pressured to reply - it was a help simply to write the post. We had a call from Guy's today requesting mum's attendance next Monday - no idea what to expect. We had hoped to see Dr. Kristeleit before we made a decision to talk through our questions but this has been sprung on us a bit. I guess we will go and see what the craic is next week!
I see from your recent posts that you aren't feeling great. I hope that's just temporary and things start to look up.
Well. I don't think I have ever been anyone's hero before. I don't think you should put too much faith in me now, either. I am just a patient. I don't have any special powers or knowledge although I am happy to share what I do know and my experience.
So to your questions. No, I am not on the Copelia trial. I took the PARP inhibitor Rucaparib funded under compassionate use and one of the exclusion criteria for Copelia is prior treatment with a PARPi. Dr K would like to get me on the trial but right now it is not possible. I also don't think she would suggest it for your mum if she didn't think your mum would benefit and I think that's an important consideration for you as you help your mum make her decision about her treatment.
It might help you to read up about how trials work and this is a good place to start. I have taken part in three clinical trials and I took part really with the idea that I wanted to contribute to the development of better treatments for the next generation of patients. It was quite hard work, if I am honest. There were lots of hospital visits and lots of extra tests and CT scans. I have had some benefit too. Two of the trials controlled the cancer for a couple of months and my doctors at the trials unit picked up kidney infections early on a couple of occasions.
As to your specific questions, you can withdraw from a trial at any point although I'd suggest to withdraw because you are on the standard treatment would be a waste of everyone's time. You'd end up on the standard treatment anyway, but with a delay and the trial would suffer because of the withdrawal. Once you are in the trials system, you kind of hand over your life. You don't get to choose really when they start.
Now to SABR and PLD. I think you could certainly ask about SABR. I found it to be a good treatment for that single node. I almost didn't have it because the node was close to my spine and kidneys and the radiologist was worried about doing more harm than good. Recent x-rays to my spine show that there was some damage to my spine and that's still there. But the lymph node is no longer active.
As for the PLD, this is standard care in ovarian cancer and as I have a BRCA mutation, Dr K treats me as if I have ovarian cancer wherever she can. It is one of the things that annoys me. There are treatment options and trials for women with high grade serous cancer of the ovaries, fallopian tubes and peritoneum and it all excludes women with high grade serous cancer of the womb. I do not understand why because certainly there are overlaps between these diseases at a molecular level.
Niraparib is another PARP inhibitor and to be honest, I have not followed the research you mention. I think I will go and look it up. The ending on drug names give a clue about what kind of drug they are. I would have to look it up but I think the "mabs" are check point inhibitors.
I think that's it. I hope Monday goes well. If I know Dr K she will have a plan up her sleeve and it will be a good one. She's kept me going well beyond my sell by date and I trust her with my life.
Thank you Daloni.
its reassuring that you have so much faith in Dr Kristeleit after this much time. That eases my concern about the trial a bit. I’ll certainly ask her about SABR but as mum isn’t having any symptoms she may say that it’s not worth the radiation side effects.
we will see what happens on Monday. I’m not looking forward to it but knowledge is power. I’ll keep you updated on the us trials if I find out more.
hope you are well
p.s. I imagine you are a hero to a lot of people on this forum. But don’t start wearing your pants over your trousers!
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