An update post Taxol - advice needed please!

[Hopefulgal1]

Hello all - I am sorry to have been leading you all - as well as myself - up the garden path.. those half way scan results seem a long way away when I was ecstatic it had been working so well. Sadly my final scan showed it all on the move again and have more around pelvic / sigmoid colon / stomach / groin lymph nodes ( was I in denial as they were so swollen I should have known) So the consultant cheerily said “ we’ve decided on trying Cisplatin / Cemzar now..” WHOER!!! pause — I asked questions: any clincal trials? will a 5th set of chemotherapy limit my chances to get into a clinical trial? Any chance of catching my breath after a flat out year of chemo ?? ( Caelyx / Carbo also didn’t work but in fairness to her that was in another hospital...) My wonderful prof popped in and we spoke ( I went blank...) and agreed I could go on Letrozole for a couple of months to catch my breath and try to get back some energy before starting again.. PLEASE HELP anyone out there had Cisplatin/ Gemzar ? Results? Side effects? Is anyone BRACA - and plat resistant having success on a trial or “off counter” meds such as Metformin? Any alternative meds working? I am just dreaming of a long break : do you all think I’m being an ostrich here? I’m clutching at straws Niraparib would be the dream to try but it just seems impossible to get parp inhibitors.. Such a crap disease and my poor husband is losing his hair quietly ( a lot of you know this feeling !) thank you so much in advance for any responses x

[harpist_UK]

So sorry - it's tough when you go through a treatment, get a bit of hope up and then it all shatters. I'm in a similar place with some tumours on the move again and looking for the best options - Cisplatin/Caelyx suggested to me as my next cocktail, but I'm on a month's break to 'think about things', have my stent refitted (it slipped, apparently) and get Etoposide out of my system. I'd like a longer break if I could. Agree with you, seems hard to get parp inhibitors.

[Hopefulgal1 in reply to harpist_UK]

Ah thank you so much for replying. Yes our bodies are so full of chemo we must light up a room in the dark! Am so sorry to hear you’re also in a similar place to me. It’s scary how quickly it re emerges... well I’m not sure about your next treatment - I had Caelyx with Carbo so a different combo. It certainly seems to work well for some. I just wish I could now try Parp inhibitors as who knows my body might just react to something different - but how to get onto a programme with it My Prof now away ( so deserves a hols!) but feel a bit shell shocked and clutching at straws...

Love and a good break to you T xxx

[January-2016-UK]

So sorry the weekly Taxol stopped working, it’s really difficult when we have high hopes. My weekly Taxol stopped working but left me in a better position than before I started.

I’m BRCA neg and platinum resistant too. I’m currently on Cisplatin / Gem plus a trial drug called an arginase inhibitor. My side effects are few, mainly cramps, some low kidney readings.

You are probably doing the right thing by having a break to recover from chemo and gather your thoughts for the next steps. I was lucky in so much as although my nodes continued to grow, it was very slow and I ended up with had six months off.

[Hopefulgal1 in reply to January-2016-UK]

Thank you so much January for replying! I am interested where you may be having your trial? I’m still affiliated with UCH as am living half in Manchester and half London now so just need to go where I’ll have the best treatment. Is the inhibitor working for you? I so hope so. And thank you again..

I am feeling better for knowing your side effects aren’t too bad ( although of course were all different) xxx

[January-2016-UK in reply to Hopefulgal1]

I’m at UCLH. The trial is also offered by The Christie. Here are the details: clinicaltrials.gov/ct2/show...

I was supposed to be on the Taxol arm but I was having some neuropathy issues having only finished weekly Taxol six months earlier.

I am due a scan on 13th November so will have a good idea how effective the treatment is very soon. My CA-125 has dropped from 682 in Oct to 227 today do I assume it’s doing something.

All the best

Helen

[Hopefulgal1 in reply to January-2016-UK]

Thank you again Helen so appreciated and really hope it works for you! Xxx

[January-2016-UK in reply to Hopefulgal1]

Asked my research nurse before I left today and they are still accepting patients on the trial so might be one to try, especially if they are suggesting Cisplatin / Gem anyway. It's two tablets every day, and Cisplatin / Gem once a week for two weeks, with one week off. However you still have to visit the unit that week for blood tests and exam, so you need to factor in a weekly visit with some very long days at the beginning.

It's in Phase 2 now in case that's not clear from the trial info.

[Hopefulgal1 in reply to January-2016-UK]

You are amazing Helen thank you for asking. I soooo hope it does all it should and especially glad you’re not experiencing too bad side effects. I have taken down details and will ask my teams how they are going on this trial and if it would be suitable for me. Many many thanks x

[January-2016-UK in reply to Hopefulgal1]

Another trial might be worth you asking about is SRA737, a Chk1 Inhibitor. HGSOC patients were not originally included in Phase 2, only Phase 1 when it was any solid tumour. But certain genetically defined HGSOC have recently been added to Phase 2 to as a cohort replacing an originally proposed cohort of urothelial cancer patients. Your tumour needs to be checked for these genetic alterations.

It is with Gemcitabine I understand. I wanted to go on this trial but they will not accept carcinosarcoma even though I have HGS elements. It's also at UCLH and The Christie and some other places I understand.

Good luck with your searches.

[Hopefulgal1 in reply to January-2016-UK]

Thank you so much again xx🙏💕

[jools53]

Omg I’ve just been given scan results! More movement so similar to yourself! Colon/ stomach/peritium/above appendix! So avastin not working now! Manage 22! So now chemo no:3 caylex! 3c high grade seroius! Ca125!200

Big holiday for January booked includes me getting married! Hope I stay fit? Keep in touch based in Kent 💪🏿🙏

[Hopefulgal1]

I’m so sorry. It’s crushing and only going through this gives us a true understanding... Onwards we go. I so hope you can have a break to do your big hols and get married.

We got married in Cape Town in a period just after Taxol! So sending you luck wellness as long as possible and a good break before Caelyx ! Xxxx