Here I am again. Disappointingly struggling to find a suitable option for taking up arms to defeat this thing.
This week I met Susanna Banerjee of the Royal Marsden to discuss possible trials on offer for the likes of me.
BRCA1 positive, yet now classified as PARP resistant. It was good hearing this from the horses mouth as Dr Banerjee has been overseeing most of the trials of all the PARPS, from Olaparib, Niraparib, etc.
She is positive that neither a stronger dose, nor changing to a different PARP, will prove to be effective for me.
My choices right now, are to go on weekly Taxol at my beloved local RUH, or take the DICE trial, which would either be weekly Taxol combined with a targeted drug called TAK228, or plain old weekly Taxol.
It’s a randomised study, but pretty easy to know which arm you are on, as the TAK228 is given as tablets.
I still am holding out for a second surgery, but my Scan results will not be available until next Thursday, when I will see my Oncologist to discuss my options. If I get no joy from my local surgeon, I will try to get a speedy referral to Christine Fotopoulou.
I am now off the Niraparib, so I have no safeguards in place to stop a speedier progression. So I hope a decision comes through quickly.
My questions:
Anyone else joining the DICE trial?
Any other BRCA1 or 2 ladies found to be PARP resistant?
Thanks for listening,
Laura
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Lindaura
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Hello Laura and thank you for the update. I had been wondering how you were getting on. Sadly no advice as l am brca negative. Feel sure some of our ladies will be able to offer informed feedback. Stay positive. Sylvia x
Yes Laura I'm on the ICON9 trial. I got the Olaparib only arm. Just been issued with my second months tabs. All good so far, although I seem to be feeling rather fatigued again. That would be a small price to pay if it works. What we all want is longer with our families, far too many of us are too young to think of leaving! One day at a time and live life is my new motto. XX
Hello Laura - sorry no personal experience as I am BRCA negative. Just wanted to wish you all the luck in the world! I am confident that your team will come up with a suitable plan very soon. Keep fighting! x
Hi Laura , so sorry that your in this position, can’t offer any advice , just wanted to let you know I’m thinking of you . You are a strong determined lady , always so supportive to us all , I think I would be going to see the lady professor that everyone speaks so highly of . Good luck xxx
I was recently offered the DICE trial as a choice but I chose CEBOC because it wasn't randomised and cediranib is akin to Avastin which worked well for me in the past. I'm not BRCA +ve but am platinum resistant.
DICE seemed to be giving great promise though in phase 1 when I was researching it. I spoke to a lady in the waiting room who couldn't remember her trial name but thought she was taking Tak228 with weekly Taxol so I presume she was on DICE and she was having a great response.
Even before the cediranib was introduced I was having a great response to weekly Taxol which surprised me as I'd only (unsuccessfully) completed carbo/taxol four months before.
You're in good hands down there but it's still scary eh?
That’s really helpful. I am not able to qualify for any other trials. I can’t have drugs like Avastin and I have to be off PARPS for 6 months to qualify for anything really interesting.
But, just the weekly taxol sounds like a good idea, so I am willing to go for the whole enchilada.
I am not on or joining the DICE trial but I am BRCA 1positive , platinum resistant and olaparib resistant. Susannah Banerjee is my Onc. I have done several trials that she has run/overseen and have also been turned down for a few as well but always will good reason - even if I didn’t think that at the time 🥴.
The DICE trial may be fine for you, I do think the targeting drugs are getting good at stabilising.
I was on the Octova trial which was 3 arm, offering immunotherapy and a base arm of taxol. Well I usually get the base and I did lol. I did get 8/9 months before growth and 98% shrinkage of the tumours so not bad in my books.
I have been offered a phase one trial but it requires an ultrasound Biopsy ( that’s if they can get into a tumour that isn’t hiding lol) so fingers crossed
Hi Laura, I have done phase 2 and 3 and as I am getting resistant to a few chemos now , So my onc thought I would be a good candidate for the phase 1 as I am in relatively good health apart from the obvious lol. They have lots of trials ongoing and others starting all the time so I do hope to try something, you are closely monitored and I know that it may not work but then some of the regular treatments haven’t either - so I will have a go , nothing to lose and if it moves treatment forward then I think it is worth it 😁.
I hope you can get your head round it all and find a treatment that you are happy with, let me know what you decide. I attend both Sutton and Fulham hospitals and would love to meet up if you get on treatment at the Marsden. Onwards and upwards 🧗♀️
Hiya, I’m BRCA negative too so sorry I have no relevant knowledge or experience. But just want to send you best wishes and lots of positivity for your results and whichever course of action you decide on. xx
Sorry to hear that, like me, that a parp did not work you. As Braca 1 and just coming off Olaparib, this has been a major disappointment to me. I am interested in what you say about the DICE trial. I understand that you would remain on weekly taxol and TAK until progression hence it would seem that one has to live with permanent hair loss , or is that not the case? I really hope you get some promising news with regard to secondary surgery. In the meantime I shall be enquiring about the DICE trial, hoping that it won’t mean weekly trips to London for treatment and that the treatment can be done locally with visits to London for reviews. Good luck Laura.
The DICE trial is kind of, “what do you have to lose?” Sort of situation.
Possibly, your hair, but not always.
The two arms are randomly selected, so at worse, you get weekly Taxol which is highly effective on its own, but possibly better would be the second arm, a combination of weekly Taxol and the TAK228, which could make the taxol twice as effective or make you have unbearable side effects.
Susanna Banerjee of the Royal Marsden is recruiting ladies for this trial and being PARP RESISTANT will probably be good.
It does mean weekly trips to London as it is not offered anywhere close, south of Manchester.
Thanks for your reply Laura. I have just read an interesting article that I know will interest you also. Not quite sure how to include the link but go to medpagetoday.com and search - When PARP Inhibitors Fail in Ovarian Cancer
Study identifies subgroup for whom another go could be worthwhile.
It is certainly worth discussing with your oncologist. I’m certainly going to with mine!!
Sorry to read from your up-date the news was not as good as you hoped but I am wondering although your numbers were going up was it not possible to stay on Naraparib until you had a decision regarding your next step?
I am also on Naraparib and have been since last September but on my last 3 blood tests CA125 had risen from 24 to 29 and then 36. More blood tests next week and not feeling hopeful. My last chemo only brought my number down to 53 but oncologist decided to give me Naraparib and initially it worked very well quickly reducing CA125 to 21. I am BRCA negative.
Wow, it was great that the PARP worked for you for almost a year!
Anyway, the story is that one needs to be off the PARP for 4 weeks before starting any treatment, so it is best for me to simply stop it, so I can do whatever is necessary afterwards.
I din’t Like being without a sword against this disease, but in the other hand it is fun to see what side effects disappear and what were leftover chemo effects.
One thing for certain is that I am sleeping better.
Also today, just 4 days later, I am not dying of thirst all the time!. My mouth feels moist and no longer like the Mojave.
I hope you find your next treatment works as well. Have you been on weekly taxol yet?
Yes I feel lucky to have had nearly a year and I am thankful for that but I think I am heading for my third recurrence and that's a bit depressing. My treatments so far have been carbo/taxol and I was told by my previous oncologist it would be Caylex next should the PARP stop working. I had a scan about a month ago and there was nothing to note so this last blood test was disappointing. My previous oncologist left to have her baby and I now have a man and so far he has not mentioned further chemo but he did say unless I had symptoms even if CA125 got to 100 they wouldn't do anything. So many different views on when to treat.
Hope you get the trial if that's what you think is best for you.
I think I am fortunate in that my Oncologist prefers to act before growth gets out of hand.
I was in Carbo/Caelyx and found it quite tolerable, although I gave myself a week in Bed after every infusion - then up and running for almost 3 weeks in every month.
I hope you get some treatment options soon, or ask for another opinion?
Don't know how I missed this earlier. I look for you Laura! This Thursday you will know if surgery is an option so that will allow you to make a decision a bit easier than you can right now. I was also told that although we all feel we are progressing rapidly when we do, there is time for us to make decisions about next steps and that waiting a few weeks has not proven to change the outcome of the next treatment over starting immediately (two hospitals told me this when I was a bit panicky about waiting). Thinking of you! oxoxJudy
I can't offer any advice on your situation as I mine is a bit different. What I would say though is that if you can...hotfoot it to see Christina Fotopoulou! She is amazing and does radical things and she gave me a chance at life again, when my local hospital had pretty much given up hope. It truly will be a great decision to see her.
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OCTOVA Trial - now open to BRCA negative women
anyone become platinum resistant and on weekly taxol? 
