Car-t treatment

Hi GW2 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey you have been in and on your Myeloma diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

I am rather sure that Car-T is still only available for some types of Leukaemia’s and Lymphomas but I am happy to be corrected in this.

You could post your question to our Cancer Nurse team in our Ask an Expert section but do allow a few working days for a reply.

Thanks Mike, yes, you are correct, it’s only currently available in the UK for lymphomas/leukaemia but, outside the UK it is used with a lot of success for Myeloma. The manufacturer pulled the licence for its use with myeloma in UK  last year. It is being used in clinical trials atm but, naturally, that means you have just a 50% chance of receiving it. I reacted so badly to chemo last time, nearly died with sepsis, I am exploring options. I have asked macmillan locally but I will try ask the expert too. Thank you for replying, everything helps.

So I assume that Stem Cell Transplant is totally off the table?

Hi, no, stem cell treatment is not off the table but Car-t is more effective with less side effects, I believe. Given the choice, and I probably won’t have a choice, car-t would be my preference, given my previous history.

Ok….. when my condition became aggressive back in late 2013 Allo (donor) Stem Cell Transplant was my only option.

I actually had 2 as my first failed within 6 months. I am now over 8 years out from my second Allo and remain in remission to this day.

Until I had SCT my longest partial remission was about 9 months before I went back on treatment…… but SCT stopped this cycle in its tracks.

I did have some post treatment challenges but I am turning 68 next month and living a great life.

We do have a dedicated Stem Cell Transplant where folks from all the different blood cancer navigate the SCT journey together.

That sounds really positive, I know SCT is a lifeline and will probably be my only option. My head is in a spin over how different treatments will give me 18, 24 months etc. I still have a lot of research to do and will definitely look at the stem cell site. Thank you so much again.

Hi GW2

I have Myeloma (also diagnosed from blood test, symptom free). You might like to look at immunotherapy- isatuximab,which I received on the NHS. It’s only available if you’re not responded to regular chemo but for me has worked where Valcade and D-PACE failed. I’m now going through stem-cell therapy to try to get to remission.
Like you I explored CAR-T but realised it wasn’t available here. Fortunately my consultant proposed the isatuximab and it has worked. 

good luck 

Nick 

Hi Nick,

Thank you for reaching out to me.

I know I’m going to have to start soon as my light chains are very high and rising. I’ve just been given such conflicting advice:

Starting too soon and running out of options

Starting immediately as I’m relatively young

Wait and see if they can get me into one of the trials starting in the second half of next year which has a 50% chance of the Car-t. 

Ive been diagnosed four months now and not started anything other than bloods, BMB (confirmed diagnosis) and an MRI which was completely clear. It doesn’t help that I’m going between two hospitals that have difficulty communicating with each other because their firewalls are too strong, thankfully, I always take my hard copies. Add this to the two other cancers I’ve had in the past 18 years (breast & thyroid) and I’m feeling quite scared of falling between the cracks.  The thought of stem cell treatment, whilst potentially life saving, leaves me cold as I’ve had the experience of chemo previously, obviously, I will accept whatever is offered to extend life. 

I draw a lot of strength from the positive stories on this site and would be good to know how your SCT goes. 

Good luck and thank you again

GW2

Hi again GW2 over the past 8 years post me second Allo SCT I have talked with a lot of people about SCT both on here and also through my volunteer role with Lymphoma Action.

I am involved with a semi-regular Lymphoma specific SCT Zoom group and one of the questions I always ask people post their SCT in a way of encouraging people who are yet to go through their SCT is “was your SCT experience as bad as you thought it was going to be?”……. 95% of all the people will say that the SCT process was not as bad as they were made to believe it would be - Consultant have a duty to unpack the worst case scenario 

Hi GW2,

So I have just started  my SCT journey, yesterday they completed the harvesting of the cells from me. And in next 2 weeks I will have the chemo and the cell transplant. 
I’ve spoken to several people who have been through the process and it doesn’t sound too bad. One person was adamant that the chemo I’ve had was worse. Everyone I’ve spoken to have been really positive about SCT. 

There are lots of support groups out there from cancer research to MacMillan but also both my local hospitals have a support group (you’re not near Southampton are you?) . 

I don’t know what the NHS criteria are for starting treatment. I can only say that I was symptom free when I started but I was told that the cancer was aggressive and the MRI showed lesions in my bones. They started chemo within a month or so of diagnosis. Bear in mind the chemo you need for myeloma might be very different from the previous cancers and, for what it’s worth, the initial chemo I had wasn’t too bad (just a pity it didn’t work for me!).

good luck, 

Nick