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Hi all, been a while since I’ve been on here, tbh I’ve been trying to forget about my condition for a while, it was taking up every minute of my life, really needed a break.
However, my wife came across an article in the New York Times about a possible cure, or extended remission at the very least. Here’s the link, though it is behind a paywall, we managed to get it open and read it, very promising.
It was developed in China and was taken up by Johnson & Johnson in the US, where they have been doing trials, initially on patients at the end of treatments with very good results and are now organising trials on patients at earlier stages.
Basically they extract white blood cells and then genetically alter them to kill Myeloma cells, and then infuse them back into your blood. The results have apparently been astounding and they are indicating that this may be a cure. If so there is hope for us all.
Here are a few other links regarding this procedure.
https://www.prnewswire.com/news-releases/early-results-from-johnson–johnsons-trispecific-antibody-show-promising-response-in-heavily-pretreated-multiple-myeloma-patients-302471267.html#:~:text=Single infusion of CARVYKTI®,relapsed or refractory multiple myeloma
https://www.drugtargetreview.com/article/155770/cilta-cel-a-new-era-in-multiple-myeloma-treatment/#:~:text=New cell therapy%2C Cilta-cel,cell in the bone marrow.
Not sure if a couple of these links are for other MM treatments that J&J have developed, the detail confuses me a bit, but there are a couple that definitely relate to this new treatment.
Hi, I was diagnosed in 2022 and have been very hopeful for the Car-T cell therapy to come. However, its approval in the UK could not be completed because the manufacturer did not have confidence in NICE approval process and withdrew from the deal. This new era of cell therapy treatments for myeloma has been used in the USA and non-brexit Europe for some time now. Write to your local MP as I have done to keep knocking on the thick gate. I have written to NICE and they were not helpful, just a factual ‘no’.
Thank you both for your replies and info.
I live in Scotland, I believe the approval for new treatments is a different body here, not NICE, so I’m not sure what the situation is here re this treatment.
After doing a bit of googling I found this info.
Scottish Medicines Consortium (SMC):
The SMC, which approves treatments for use in NHS Scotland, has not yet approved cilta-cel for broader use.
I am not sure if NICE has an involvement in approval in Scotland, i.e. does it first have to go through NICE approval before being considered for approval in Scotland. This has not been the case for other treatments so I would assume it is not the case for Cilta-cel.
The link below would suggest that this is not the case, as one of the new treatments in the link was approved in Scotland before NICE approved it in England and Wales.
https://hcp.myeloma.org.uk/news/two-new-myeloma-treatments-for-scotland/
I was diagnosed in 2021 and have undergone initial chemo followed by a SCT 3 years ago in March 2022. I am currently in remission but unfortunately my condition was fairly advanced when first diagnosed, so I have quite a lot of initial damage. I had a follow up MRI this January as I was experiencing a lot of pain in my back. My initial MRI at time of diagnosis was 3 compressed vertebrae and significant damage to both my humerus bones, I had a pin put into my left humerus to prevent it shattering.
The MRI in January showed I now have 6 compressed vertebrae, one being at the bottom of my neck which has been giving me pain, and also damage to a rib. My Consultant has emphasised that this is previous damage which is coming home to roost despite Zoledronic Acid infusions and not new damage as Myeloma cells are not yet detectable in my bloods.
Anyway, discovering this new treatment has given me hope as it will have to many others. Hopefully this will he sorted out and introduced. However, the other new treatments look promising for extended remission, so we’re getting there.
Again, thanks for the info, much appreciated.
I meant to add that I may be able to have car T via a trial in Birmingham when I next relapse which will be for the second time.
That’s good news, hope it works out for you.
I was diagnosed one year later than you, in January 2022 followed by autologous transplant in June 2022. My disease was caught early, but I had one small lesion on T4. That lesion has healed after treatment to form a fatty tissue in the hole. The appearance of my bone marrow has changed from variegated to smooth. So, the medicines do work, but at what side effects and for how long. I would imagine your bones also healed, but because during the healing the bone does not regrow unfortunately, you must take extra care. I am still in remission, but it’s called very good partial remission. It reminds of school grades. It means I have a constant ‘safe’ amount of paraprotein left (if it goes up, I relapse), I take lenalidomide maintenance which isn’t easy. To be honest, I am disappointed how fatigued I am, and nothing can be done about it, I have found out that doctors can’t really treat this type of fatigue. I returned to work full time after one year, nearly two and a half years ago. In my measures, I have been lucky to have returned to work, but no one would bat an eye lid if had not. What concerns me is the lack of innovative potentially low side effects treatments in the UK, such as the CAR-T therapy, which also provides a deep remission to many. I am aware that bispecific have been approved on NHS, but these have huge side effects probably incompatible with working. The recent Trojan horse treatment, aka belantamab mafodotin is the latest addition over here after it has been retested and dusted off the shelf. It can cause a severe vision damage, so it is working, but at a very high cost of harsh side effects. It is a very unkind medication selection. At the end of the day the UK is lagging most of the world in Car-T treatment, it is a sad fact, no trojan horse will make it look better. Three specifics maybe on the horizon, as they are being tested in a trial by Dr Poppat, London based professor. There are three Car-T trials in the UK- all of which are randomised to standard type of medication, so 50-50 chance that a patient will get Car-T. One is with added chemo in both groups; one trial is for newly diagnosed only. I hope that ice will thaw on Car-T approval, I also hope that it will get approved in Scotland, it might get approved first in Scotland, however Car-T is not yet licenced in the UK for treatment of myeloma. These are sad times.
Oh, and regarding Scottish medicine approval system, I have checked information available on the net. It appears that before a medicine can be prescribed in Scotland it has to be accepted by Scottish Medicine Consortium SMC, however the licencing of medication falls under the UK licencing body for the UK, the Medicines and Healthcare products Regulatory Agency (MHRA). SMC cannot approve a medication unless it has been licenced in the UK. I think SMC is equivalent of NICE in Scotland.
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