Sorry to hear that your treatment is now becoming unstable…am sure there is more….our friend Andrew am sure is just going onto his 8th or 9th treatment…..and not able to have a transplant …good luck hope your new treatment is better for you ….Onwards and upwards
Long time no hear from you on the forum. Are you ok?????
Well pp is up a bit more but the team want to squeeze a bit more from Pom , but they’ve increased the dex a bit and I’ll go see them face to face in 4weeks. I asked what’s next, the answer was not a lot!!!! All trials suspended at present. They would give me cyclophosphamide as a single agent. They would like to give with other stuff but the ?nhs ?nice pathway is strict. I guess they are telling me I’ve had my monies worth from them!!!
If anyone knows how this funding stuff works to be able to get more choice for what will be 6th line treatment I’d appreciate it.
I don’t feel like giving up!!
Yes been a while since I was on here….keep meaning to pop in more often..??
Ye I am doing good thanks, but think I might be going on what you have just been through…the Pom….I am going to hull on Wednesday to see what they have concocted for my next lot…my Daratumumab stopped working…but it’s a case of what it will be I await Wednesday with baited breath…lol
Take care Mike and chat soon….if you have Facebook pop in and find me…Onwards and upwards x
Your post gives me hope! I am about to start 4th line treatment but I’m getting through them very fast (less than 4 years since diagnosis) and I am dreading the day they day there is nothing else to try. It’s very annoying that all the trials are on hold as there was due to be several C-ART trails that you might have been eligible for. Have you had Darzalex already? Although normally 4th line I did see a post where someone had managed to get it 5th line. What about Selinexor? Is this still only available on trials? I’m sure you have already checked out all the possibilities. Please update on how you are getting on. I hope you get some options.
Thanks for replying.
Yep one day they will say, sorry Mike but we have nothing else to treat the myeloma. That would be ok if I feel terrible but, at the moment, apart from some side effects of muscle pain and weakness I’m really well.
Well this week- bad and good mews.
The pomolidamide has stopped controlling the myeloma.
The good news- a trial has just opened up in Leeds and I am eligible!!!! It’s a phase 2 trial on cc 220. Lots of test/bloods after tablets and bone marrows, but it’s tablets. Not too many side effects. Works well in 33% of people- so fingers crossed. If this hadn’t been available, they would have had to offer me some quite toxic old treatments.
I have one piece of advice. Because the giving of drugs is strict now, eg if you have a holiday of greater than 4 weeks from pomalidomide then that’s it!!!!! My advice now would be unless the side effects of anything your given are severe, keep taking it as long as you possibly can until it stops working, cos you won’t be offered it again under the strict rules of nice/nhs. I hope this helps you knowing this.
I will keep you posted re cc220 !!!
Good luck with the trial Mike, I wish you every success with it. Thanks for posting, I think it’s important for all of us to keep the road ahead in sight, and to do what we can to make sure all patients have access to as many treatments as possible. I don’t think it’s always appreciated (by patients or by NICE) how well patients can feel despite having X number of lines of treatment.