[shellchic57Participant]

Hello, I’ve finally decided to reach out to you all in the hope I can start the new year connected to “friends” who are going through something similar to myself. As a lady in my early sixties who was following a fairly healthy lifestyle I have been thrown into total dismay after being diagnosed with Multiple Myeloma (Feb 22). Im a fairly classic case of someone diagnosed with a back fracture (out of nowhere) then osteoporosis was diagnosed after which came the diagnosis of Multiple Myeloma. Tests show lesions in my back, arms & head. Treatment started very soon however I had never heard of Myeloma before and I certainly did not expect to have any say in my treatment. With some haste I made the decision not to opt for Stem Cell Transplant which was an option. This means that since Feb 22 I have been taking Lenalidomide & Dexamethasone coupled with a monthly bone density drip. I also have to take Zomorph for back pain plus Calcium vitD and stuff for side effects. I have responded to the treatment (Paraproteins came down) & the Consultant says he is happy with me, however as I’ve learned more about Myeloma, at the stage I’m at, I am starting to think that I may have reduced my chances of a longer life by refusing SCT. Is there anyone out there who has made similar decisions with their treatment (not opted for SCT) and what has been the outcome? Sorry for the length of this, hopefully I can gain some insight with the help of someone who has a lot more experience of this awful situation we find ourselves in.

[robert0439Participant]

Hi and good morning. Go for the SCT as although it takes around 9 months to recover from it – well, it did me anyway it gave me 5 years of remission with no medication at all. I’m now just on a maintenance dose so all on all, pretty good under the circumstances. So, in a nutshell, go for it. Wishing you well and sending you my very best wishes for the New Year.

Kind regards,
Robert

[rosaryParticipant]

Can’t answer your question directly but I did not want to have an SCT and in the end I did (mainly because I had the option and my consultant pointed out that as I got older that would not necessarily be the case ) as it transpires I managed the SCT fine but it “did not work” so in some sense I am where your question is – spent days and days researching this question and there is no clear answer , just different opinions. I am 3 years post SCT on Revlimid maint and stable – I believe the future lies in CART/ BITE and in the US that is a big change for myeloma patients but that’s going to take a long time to become available in the UK NHS ( out of trials ) and so SCT remains the recommended treatment in the UK
for myeloma patients – keep us posted on your thinking

[mulberryParticipant]

I too was a fit and active woman diagnosed suddenly when I was 60, nearly 5 years ago now. Welcome to the forum.
In the UK it is standard practice to encourage patients who are younger than their early 70s to have stem cell transplants, if they are fit enough. However in the USA there is no such standard practice and some consultants rarely advise SCT in the light of the range of targeted drugs now. If you do regret not having a SCT it is worth asking your Dr if it would still be possible to collect stem cells and to do the procedure. Lenalidomide is known to impair stem cell production so this may not be possible. However as rosary has pointed out, not all myelomas respond to stem cell transplants, and some patients do not benefit, or not for long.
My guess is that you made the best decision that you could at the time, with the information that you had. Try not to regret the decision you made, no one knows for certain how myeloma will respond to any specific treatment.
New drugs such as bispecific antibodies may become game changers for us with myeloma, in the meantime there are a number of good drugs approved by NICE for NHS myeloma treatment. By the time you come to need new treatments, novel treatments may be approved & available which may outweigh the collateral damage done by melphalan during SCT. It may turn out that those of us who had SCTs then feel that you made the right decision.
Best wishes, Jane

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