Hi I’m new to this community but have been through 3 different chemos ( carboplatin then taxol and just finished carbo / caelyx) I got a break of over a year after taxol but this last round has not worked. Am devastated but have been offered more chemo ( cisplatin/ etospitide) but am veering towards a trial.. anyone had experience of this Prexasertib? There is also another early phase trial SRA737-01 but that sounds a bit terrifying!
Any help or advice would be so appreciated - thank you!
Hi ,Glad you found this site we have amazing ladies willing to give advice and encouragement. I think some times you need to truest your team that they will give you the best advice , is your oncologist suggesting the cisplatin/etospitde ?
I have just finished a phase 1 trial and find it the hardest of all my treatments I now waiting to go back on Carbo/Caelyx, as you know we all react differently to chemo, this is a very personal choice but I think I would go for the treatment you can also keep trials for future if needed.
I hope the treatment you have gives you good results take care Lorraine xx
Hi Lorraine - apologies just trying to get the hang of this site! My oncologist is off sick for a few months so the registrar saw me but conferred with other oncologist before - he said as I’ve had so much chemo perhaps the better choice for my body is to give it something different at this point and he wld choose the phase 3 trial drug but then couldn’t tell me much as it’s onpy been with this hospital for 3 weeks ... I think 🤔 will email the dr heading the trial and ask her regards side effects: it seems a lot of time spent in hospital having scans tests echo cardio stuff..
what was the trial you were on? I so wish you success on the next phase of your treatment and thank you so much for replying to me : it makes one feel less alone in all this x
Hi No need to apologize you will find this a very supportive site, The trial I was on was not chemo I had to come of chemo the trial if worked was to make the cancer more sensitive to the chemo , it was a first phase and was to find out the dose that could be tolerated be for going into phase 2, If this drug proves to be successful it will help recurrence for ovarian cancer. Take care keep in touch Lorraine xx
japantoday.com/category/fea...
Thank you again and good luck with the next chemo hope it works brilliantly for you..x
Are you looking for a chemo or targeted therapy?
There’s quite a few trials for grade 3 serous at the moment
LA xx
Hi Lily Anne: from what I understand there is little out there for platinum resistant BRACA neg ladies - I’ve had three types of chemo now and am getting so v anxious. Is there anything you have heard of that is having good results that I could enquiry about? Thank you so much again!! X
Hi, just to say I’m in this very difficult position too.
I was aware a few months ago that there is a trial at the Royal Marsden for BRCA negative platinum resistant patients who have had 3 lines of treatment. I don’t know about your eligibility criteria but here’s the link anyway. Good luck xxx
clinicaltrials.gov/ct2/show...
Thank you so much for replying and I am so sorry you are in the same painful place... I have tried to understand what type of therapy this one is but not sure ( targeted therapy? Immunology?) have you decided whether you are going to take the plunge or will you opt for more chemo? I am all at sea so really can’t make a decision yet... thank you so much and good luck x
I know at least one resistant person on here who's done one trial and is exploring further trials. If you make it clear in a post it's that info you're after, you may get more replies?
Thank you so much Mac for giving me this advice - I shall try this approach as suggested in truth I’m all over the place at the moment and unsure which way to turn so always good to hear others accounts - the paperwork is one thing the real experiences of women going through this is something else!! Thank you again x
I started the SRA737 trial at Guy's about 6 weeks ago. Too soon to know if it's helping. The initial dose made me extremely fatigued, but have reduced it so its more tolerable.
Sorry alison - having a bit of trouble with this site so not sure if you saw my reply - or if it got posted?! I wld love to hear how you progress on this trial - and if you know about results they are having? I have 3 weeks before I need to go back and say which I want to do - if any?! Scary stuff when you read up the possible side effects but do you find this is not really happening? Thank you thank you so much!!
Hello - yes I imagine that is also on the table again - think that as I’ve just finished my chemo they were trying to give my body something different from chemo again as I had such a rough last 6 months - but think that could be an option ( I’ve heard cisplatin / eposticide is a really hard one to experience...!) thanks again xxxx
Have you had your actual tumour tissue tested for any BRCA mutations. They call this somatic testing. There’s only a very small chance it would be positive after testing negative in the blood. But the trials team at Marsden are able to fund this for me in view of it opening up other trials and of course parp inhibitors if results are positive.
If I’m still wild type, I have decisions to make, like you, can my body take more chemo. I’ve only had a 5 month break in 18 months due to relapsing 3 months post 1st line.
I’ve read the post on here today regarding NICE and the potential use of parps for BRCA negative however another loop hole for us to get through because it’s for platinum sensitive patients.
So if I can give any info I come across I will try, if you are well, performance status at 0-1 there is also the possibility to be referred to the early trials team at Royal Marsden.
Where are you currently being treated? Xx
Ps. If you could share the info on trials running at your hospital that would be great. I know they vary so much xx
Hi Jessica - I’m at UCHL and they are very Very busy! I’ve asked now for a second opinion at the R Marsden ( I saw Dr Banerjee there once ) fingers crossed!
Think there are many trials happening but for us BRACA beg / platinum resistant patients these were the two they came up with for me : these are targeted therapies so will be getting my original tumour slides analysed as you suggest. But need to understand if the new ones are the same as original is over two years old so probably will need biopsies ?! Xxx
Hello again Jessica-d
I just wanted to say I’m not able to apply for the sage 2/3 clinical trial if prexasertib now as they have paused it for 2 months for new applicants so I’m really hoping that when I have my 2nd opinion next weds at RM they will have something else they can suggest for me.
It’s such a gamble everything isn’t it? More chemo? Or is that just going to be too much for my body to take as it’s only been nearly 2 months since last regime. I do hope you have good support and able to make clear decisions and I wish you love and good health!
Do please if you are able - keep in touch as I wld be so happy to hear from you and how things go at RM for you.
All the very best
Tracey x
I haven't had any other noticeable side effects so far apart from fatigue, though I do take an anti-sickness tablet before the main dose, which can cause constipation. But other people may well be affected differently. I don't know about any results. I'm due a scan in the next few weeks to see how I'm doing. Good luck with deciding what is the best course of action for you.
Thank you Alison and huge best wishes and luck on this trial! Do keep me posted if so appreciate it if you can.. thank you! X
Hi Alison - I am sorry to bother you again but I just had a phone call from an oncologist nurse to tell me that the prexasertib trial is now off the table for me that leaves either chemo or the trial that you are doing..please do let me know how you are doing on this trial as I am desperate to know if the side effects are increasing and of course if it’s having a positive effect for you! Did you have to have a biopsy done prior to starting? Any tips for me please?? I so wish you all the very best of luck with this. and huge thanks. If you prefer I could give you my email? I’m not sure how we message each other privately on here?! XTracey
Would there be a possibility of 3 weekly pacliataxol single agent? If you previously responded 1st line? Xx
Hi, Did you go on the SRA737-01 trial by any chance?
No sadly I decided to do yet more chemo as advised by my onc and I went to chat with Dr leading that trial( as I ha been accepted due to a gene in my tumour ) and it is suddenly off the table now as it has closed for more participants. I’m so sad - I really was keen to do it.
Anyone here on Biomarin's BMN673 parp inhibitor trial?
Biopsy trial? Anyone been asked or taken part?
Has anyone else had this?
Chemo not working but starting another trial - anyone tried 6MP?
Anyone on a clinical trial?
