I’m just back from the consultant. Imaging shows that I have had a partial response to the chemo and my CA125 is down to 180, not brilliant, but an improvement from 722. Unfortunately I don’t qualify for Niraparib as I didn’t achieve the required 90% reduction of CA125. However, I’m told that Rucaparib may be the next thing for me. I’m going back in a week for the consultant to tell me if I meet the criteria for it.
I wonder if there are any of you who have experience of this drug and would be prepared to share your stories.
Thanks and love to you all, Ali x
I didn’t say that I’m BRCA negative although according to the CDF info BRCA1 and2 still require a >90% CA125 reduction. Confused!
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Alifit
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I am on my 3rd dose of Carbo/ Caelyx, but probably because I am BRCA1 positive, I have had a fantastic response, with my CA-125 down to 87 from 473 at the start of treatment. I just had my midway scan, so I get thise results in 2 weeks.
I am planning to have Niraparib after this, but I really wanted Olaparib, because of all the PARP inhibitors, it has the least side-effects. I think that Rucaparib is tougher than both of these, but again, we are all so different.
I was destroyed by Carbo/Taxol, with every side effect known to man, but Carbo/Caelyx has been a walk in the park, once I round day seven.
All I can advise is that I know from reading studies that the good results possible from PARPS are the same; it is just the side effects that are different.
As you say, a partial response is worth having. After my appointment yesterday I felt a bit deflated, I think, because everything hinges on making decisions about the future - I don’t always feel well enough equipped to do that. I’m sure I’m not alone in wishing the whole thing would go away.
Anyway, thanks for the positive info about Rucaparib.
Hi Ali. Just wanted to wish you well. I can’t help with the specifics but was surprised to learn about the requirement for a 90% improvement in the CA125 figure. That wasn’t mentioned by my consultant or by Mr B in Birmingham when I saw him in September but then my CA125 has not been an accurate marker for me. Do let us know whether or not they offer you Rucaparib.
This is the paragraph from the CDF document for Niraparib, stating the criteria that is stopping me having it.
7. The patient is in a complete or partial response following completion of the most recent line platinum-based chemotherapy which must be at least second line treatment and that the serum CA125 is either normal or has demonstrated a >90% decrease from before the initiation of this most recent line of chemotherapy and is stable.
I’m going to do some research and make some phone calls to see if these are set in stone - I guess they are, and then consider the possibilities of Rucaparib. It’s not listed on the CDF - my consultant mentioned another way of accessing drugs which may fund the Rucaparib, which I have now forgotten - first call on Monday morning,
I hope you are doing well, I promise (again) I’ll get onto emailing the group about a get together.
Thanks for the information. I hope your research bears fruit. It will be good to get together at some point but your health is your priority as it is for many of us. It’s trying to find the right balance between getting on with life and allowing that it takes a good while to recover from chemo, that I find hard. Last weekend I hosted a family party, this weekend I’ve got less energy than a dud light bulb!
I’ve been watching my slowly decelerating CA-125 figure and came to the conclusion I wasn’t going to make a 90% reduction. I can’t help wondering though if a current infection may make the end figure artificially high and also wonder if an infection at the beginning may perhaps have artificially inflated the CA-125 and so show a better decrease than may be the case. Doubtless this has been given thought.
Hi Ali , Again I wonder how I got Niraparib , my end of treatment Scan showed good reduction of disease , I am counted as having stable disease .However at recurrence my ca125 was 900 ish at end of treatment despite halving after first infusion was 950 , I queried and was given a very swift “ we are not treating a blood test “ . I am really confused .Someone on here posted the criteria to get Parps , I will try to find them . Wishing you all the best for continued treatment , whatever that might be .Julia xx
Hi Ali - I can understand that you feel disappointed & uncertain about future treatment ; inspite of the positives of a partial response .
As it’s a big international group, those on Rucaparib in The Parp inhibitor Facebook group may be able to inform you more about pros and cons . Fingers crossed for you .
I have just been taken off Cisplatin Gemcitabine two thirds of the way through due to recurrence with ascites (6.6 litres drained on Friday) so no hope of the PARP through CDF for me either.
But I have been offered the OCTOVA trial which has 3 arms comparing Paclitaxal, Olaparib and Olaparib plus Cediranib. Ask your team about this trial as it may be an option for you too.
Hi Ali, In the last 4 1/2 year I've had quite a lot of carbo/caelyx with good results, I think a drop in your 125 of 722 to 18o a good response . How many treatment of carbo/caelyx have you had so far? I one a month for 8 months with good results.
If you type Carbo/Caylx in the search panel top right you can read other posts on this subject, if you would like to ask me any thing you can message me Take care Lorraine xx
I had 6 doses of CarbobCaelyx, the last one was reduced by 30% as my side effects were so bad. I’m just a bit disappointed that, having had Niraparib dangled under my nose, I was then unable to access it and also wondering that if I had had the full dose of the last chemo, if that would have brought down my CA125 enough.
I’ve done lots of reading and am fairly sure I’m not eligible for Rucaparib either. I’ll know on Friday, then will have to decide how to proceed. Without any treatment I suppose I’ll be able to get on with my life for a bit until the bugger comes back again.
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