I have been living with Multiple Myeloma for over ten years and I am very grateful for this, especially considering I was predicted to live for about three years all that time ago (for newly dx people, I think stats have improved since then and , of course, vary from person to person).
Initially I had CDT treatment and a stem cell transplant then seven years later I had DVD and a second stem cell transplant. Recently my consultant observed a small spike in my paraproteins, although everything else is fine, which maybe suggests it could be on the move again.
Does anyone have experience of treatments after two stem cell transplants that they could share? I’ve never been offered maintenance therapy. I’m also interested to know if the next line of treatment cuts in more quickly or if there is still a period of watch-and-wait for the paraproteins to increase.
I have a follow-up appointment in December when I hope to learn more, but in the meantime I am interested to know of other people’s experiences to have some idea of what the treatment options might be.
It has come as a bit of a shock this time round: maybe because I had a nice long time of remission after the first transplant or maybe because I’ve been quite cautious throughout the pandemic and hoped if I was patient there would come a time to do more things…and maybe that wasn’t the best approach. Before the pandemic, I definitely ‘seized the day!’
Also I have been wondering if CAR-T is available on the NHS for Myeloma patients yet and if anyone has experienced it?
Hi @Coastgirl I have not got your blood cancer, but I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses in case they can help at all.
You have got time to write down all your questions for your appointment in December.
I know when I was diagnosed with a second cancer it hit me more than the first diagnosis. I think it is because my thoughts and emotions are still on high alert from the first diagnosis, 18 yrs ago.
I hope someone will be able to help with their experiences.
Please let us know how you get on.
Look after yourself
Hi @Coastgirl . As @Erica said, the blood cancer Uk nurses will be helpful with your questions. I’m hoping that others may also be able to share there experiences. It must be a worrying time for you.Please keep us updated on how you are doing x
I was talking to my consultant about what is available when my second transplant stops working. I’m on maintenance dara at the moment
QE in Birmingham started I believe Car T cell therapy in June this year for Myeloma
Hi @2DB. It’s good to hear there are follow up treatments available. So many new developments happening all of the time which is so positive. I hope you are keeping well
Hi @Nichola75
It is good to know there are more treatments inc monoclonal antibody treatments being developed
I like to know what’s next down the line treatment wise as it gives me hope
Hi @Coastgirl it’s so understandable that this is a shock, I do hope you’re doing okay - it’s good to hear you’ve got a follow up appointment coming up. Our Clinical trials support service team may be able to speak to you about clinical trials into car-t if that might be useful for you? You may want to speak to them before your next appointment so you know the sorts of questions to ask - How our Clinical Trials Support Service can help you | Blood Cancer UK
I also found this webpage from Myeloma UK which you might find helpful, though I’m not too sure how outdated the info is now - Ask The Nurse: CAR-T cell treatments - Myeloma UK
Dear @Alice_BloodCancerUK,
Thank you for posting these useful links. I think the MUK one is pre 2022 but has a really helpful explanation of what CAR-T is (what is involved and how it works). Thank you for the link to your Clinical Trials Support Service as I didn’t realise this was a ‘thing’. It will be a while before I find out any more but I will let you know how I get on.
I’ve now booked an appointment for an hour’s session on Zoom with a nurse with expertise in blood cancer and clinical trials later this month so I can find out more. What a great service! (The Clinical Trials Support Service.) Thank you @Alice_BloodCancerUK for drawing my attention to this opportunity/resource.
I have just looked up CAR T to see what exactly it is and what cancers it works on.Strangely despite the T it seems to work on B Cell Lymphoma and Multiple Myeloma (as I understand it MM is B Cell derived) the articles don’t mention Leukemia but again most are B Cell.However sort of irrelevant for me as my Lymphoma, Mycosis Fungoides,is T Cell derived and apparently CAR T doesn’t work very well against any of the Cutaneous T Cell Lymphomas or Peripheral T Cell Lymphomas.
Hi @Coastgirl . I think we met on here when I was first diagnosed in 2021. I’m so sorry to hear the update but hang on in there . I think I had CAR -T but it didn’t work for me . Then I had carfilzomib which started very well but then stopped working . I’m on a new treatment regime - first cycle - can’t spell or remember what it’s called now … it’s 7.00 am Sunday morning and I’ve had a rough three days . I will write again soon .
This seems to be the way of things - stemming the tide for a while and then going onto a new treatment. Thank goodness there seem to be plenty of new ones out there, but won’t it be wonderful if/when one day a cure is found?
I’m sorry that CAR-T didn’t work for you. So did you have it as part of a trial?
I think I’m over the ‘shock’ now: not that it should ever be a shock because we always know another relapse will be coming at some stage. Now I’m playing the waiting game to see what will have changed after 8 weeks.
This afternoon we planted out some spring bulbs. I saw some orange crocuses (yes, really) in the garden centre and decided to give them a try. I wonder if they will really come up orange?
I really hope that your new treatment regime will soon settle and that you find yourself feeling a whole lot better and I look forward to seeing you again on the forum.
PS Thank you @Kevan7 for the scientific info’ about CAR T and I’m sorry it doesn’t seem to be applicable to your kind of Lymphoma. Hopefully there are similar - or even better - treatments available for you.
I said I would let you know how I got on… I’d like to say a big ‘thank you’ to BCUK for your Clinical Trials Support Service. I have just had a really informative and reassuring conversation with a Clinical Trials Specialist Nurse (see link posted above by @Alice_BloodCancerUK ).
If anyone else is in the situation of wondering whether to consider taking part in a clinical trial or not, I really recommend this service. The nurse explained the difference between Phase 1, 2 and 3 trials and how trials can be very useful earlier in the Myeloma treatment journey than I had realised. She also reassured me that there are a certain of stages of gathering information before you are necessarily accepted and before you have to give your final consent.
I now feel there are more options open to me on second relapse than I had previously imagined, which is a good feeling.
