Hello - I think my previous post didn’t work so here goes again ( apologies if original pops up too!) I have finished Carbo / Caelyx 3 months ago.. didn’t work and there are more lesions (1.9 cm on average dotted around..) and I can feel 3 months on more lumps and bumps in there. I am desperate to start something but we are waiting to hear if I am accepted into two clinical trials. One is a phase 1 trial at UCH in London my hospital ( scary new but a type of ‘targeted cell therapy’ which sounds interesting and is by oral tablets lots of blood tests etc) or 2nd choice a trial at Christie’s ( thank you Beewild!!) which starts with Taxol then adds in cedanarib and finally olaparib ( both know effective and exciting for some women!) which mean we would move up to Manchester. Scary to leave my support team daughter etc behind!
Final choice : Taxol - again - starring on 12 th June on my 60th birthday (!!)
So what do you ladies out there think? I’d so appreciate some views as you’ve all experiences these type of things. This would be my 4th attempt to keep this bugger at bay so feeling very apprehensive and confused....
Thank you all 😏❤️
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Hopefulgal1
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Thank you so much for replying Mac27 - and v good advice indeed - I am waiting to see whether I qualify for the phase one trial : I’m rather nervous as there apparently are only 4 other women at UCH who are doing this trial - and it is only a number not a named drug - but yes exclusion for future trials would be really important too. This is the only trial though they have to offer me at present. My appt at Christie’s in Manchester is next week weds so a huge hurdle to get there and then poss move up but we do these things to stay alive I guess! Thank you again x
Oh my, to move so far is a big decision. I don't have first hand knowledge of the regimes you mention. My only opinion is to say I think Manchester and The Christie are marvellous places. Good luck with your decision.
Hello there! Yes we are coming up on the weds for appt on the Thursday - we are treating ourselves to a stay at the radisson blu Edwardian hotel in town (!) as I’m too man down to do all in a day. Maybe we could meet for tea there on the weds around 5.30pm if you’re free?! Wld be fab to meet you!
All the very best and thank you for your kindness xxxx
Thank you so much for this reply.. I too was diagnosed 3c and am wishing you and your wife all the very best with your decisions too.
The phase 1 aspect is quite scary .. I have a booklet from the Marsden and basically one up from Guinean pigs however it could be a great drug - it does feel like playing poker you just don’t know what hand you may be dealt. Good luck and your wife must be happy to have you by her side caring and investigating for her. X
My first choice was actually a phase one trial because you are guaranteed to get the new drug. I had been offered a phase 2 trial but there was a 50 percent chance that I would just get caelyx. It's not really scary as you are monitored very closely.
Hi. Of course ask lots of questions and do research! But I just wanted to say I have recently researched the Phase 3 ICON9 trial starting in UK in next couple of months. This has one arm olaparib and 2nd arm cedanarib and olaparib after chemo. I'm not suggesting you do it but, I found results of ICON 6, 7 and 8 trials on Google. It might give you some idea of the results so far of these 2 drugs together. Quite a few women left those trials as side effects of cedanarib were quite toxic. But results for genetic women looked quite good. Not so good for non BRCA etc.
I also decided not to do Phase 1 trials as they don't know yet the safe dose or side effects! But we are all different and you can always leave the trial if side effects are getting bad! Hope whatever you decide, really hope it works for you. Hugs from Australia.
Thank you so much for replying all the way from ‘down under’! That is very helpful ( a bit disheartening re side effects of cedinarib though - and also I am BRCA neg.. ...)
I shall def go up and discuss the treatment plan as if it just ends up being Taxol and they do t give me the niraparib / olaparib combo then I would be better off just trying Taxol again for now here in my home city with friends and family around me.. It may work that way anyway if I’m not accepted on either trial!! I think I will definitely be asking more questions now - and will google those results too - thank you! Xxx
I am on a phase one clinical trial at UCLH called Patriot. It is 8 pills per day for 2 weeks then 2 weeks off - for as long as it is working. I have had 2 scans so far which both show stable disease. I am monitored every 2 weeks - the side effects have been a bit of nausea and retching - nothing like as bad as on frontline chemo. I travel up to London from Cornwall every fortnight. Frontline chemo didn't work for me.
That sounds v hopeful Neona - I guess I wouldn’t qualify for that trial or they would have suggested it ( I’m BRCA neg and platinum resistant..) but I shall def enquire about it. Good luck and long may you remain stable! X
I am also brca neg and platinum resistant. My onc did not suggest it either but I decided to go for a consultation at the London Clinic and the consultation, who was very knowledgeable, happens to run phase one trials. I am keen on phase one trials because you are guaranteed to get the new drug.
Sorry for the long wait Neona I have had a ‘bumpy time’ ending up being admitted into the Christies for nearly theee weeks (!) I only went up to diScuss the trial!! So am just on regular Taxol againup here as an outpatient now ... hoping for clinical trials to arise in the future if this doesn’t work!! Hope yours is going well 🙏
I'm also at uchl and being considered for the numbered phase 1 trial with tablets. Lots to research still and tissue has to be sent to N.America for compatibility so I'm hoping for a pause in treatment for me to recover from the Taxol regime I finish next week. On a positive note the drug company has established correct dosage already. It will be my 6th regime so I'm still looking for that one drug that sorts out my unresponsive strain of cancer. I couldn't even contemplate moving on top of dealing with fatigue and the like but good for you for considering it as one of your options. Good luck Gina
Oh Gina this sounds like the one they are investigating for me too.. I await results from my tissue sample - hopefully soon!! Yes moving would be quite exhausting but if it sounds like it could be the best option I’ll possibly give it a go. Good luck Gina for the treatment that works for you too xxx
I agree it sounds like the same trial. I have become a follower of yours - I hope that's OK, because then we can keep in touch. Good luck with finding the right treatment for you Gx
Yes of course ! I will keep you posted re which treatment I end up with - it needs to happen quickly now. I am so uncomfortable I definitely need something to happen soon and so wish you luck too x
Hello! Something odd went on with my tag name here and I suddenly became “hopefulondon” instead of Hopefulgal! Hey ho - I’ve also been sick as inpatient in the Christie but they’ve been managing my pain and giving me Taxol so fingers crossed Taxol is working - i have no 4 on Thursday! and we are looking for a house or garden flat now to move up while treatment is happening... the care here is worth it to me! So hope your trial is working??please do let me know how things are working! Xxx
Oh goodness I am sorry you are in the same boat - I have a referral too to the R Marsden clinic but decided that’s one more on top of the other two trials I’m waiting on... I almost just want to say let’s just go for the Regular old chemo again!! Taxol - so that could start on the 12 th if I want to go ahead with that - and have a port operation booked in the day before (!) which I’m also nervous about!! Well something needs to be done as this hanging about with tummy pains is not good - I so hope it all gets better for you quickly and something comes up that fits perfectly for you! X
Hello - I am in France, just starting a Phase 1 trial, it’s fine. My advice would be to aim for the trial and have the Taxol as back up. I found Taxol tolerable and used cold cap to keep my hair. Not sure about moving to Manchester, that’s a tricky one. Hopefully the situation will decide itself soon. Chemo doesn’t work for me anymore. So glad to never have to have again, but makes the future harder. For me having options helps. Good luck - N
Hello Ordolini I’m sorry the chemo is not working for you any more - but here’s to your phase one trial working and keeping you stable and well as possible! Good luck xxxxx
Hello all of you that replied to me! Thank you!! I am now in Manchester and just on the regular Taxol ( the trial was soooo close but fell at last hurdle - so upset ..) but fingers crossed it’s workibg well. Still in lots of pain meds but will be over the moon if I can cut back on those S the tumours shrink 🙏🙏. The next step is to find somewhere to live up here until November!! It’s a little mad but so worth the care I think..
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For those who have been through this, questions to ask?
Have treatment now or what for clinical trial?
OCTOVA Trial - now open to BRCA negative women
End of trial drug imgn 385.. start of weekly taxol
difficult decision
