I was diagnosed with inactive multiple myeloma 3 years ago and my light chains are monitoed evey 3 months by blood tests. I am 74 years old and lovely haematolgist asks me every lime if I would like to start treatment as the levels continue to rise and I respctfully refuse as I don’t have any of the CRAB symptoms… any one in the same boat?
Hello @Jean-11
Thank you for taking time to send your post into the forum
I’m sorry to hear about your diagnosis.
I suppose everyone’s circumstance is different, even if we have the same diagnosis, the way we tackle it or react to it may be quite different. That said, your medical experts are best placed to advise you, never the less you have raised an interesting question. I cant comment myself as I do not have the same diagnosis (I have Chronic lymphocytic leukaemia ('CLL') and I am on active monitoring as thing stand) but I am confident there will be people with not dissimilar circumstance who may share their thoughts with you
Please remember, if you prefer, you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
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Kind regards
Mike
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Hello there @Jean-11, welcome to the forum and thank you for posting. I see dear Mike @GenesisDevice has already greeted you and would agree to keep handy the number he shared for the lovely Blood Cancer UK nurses, 0808 2080 888. If you have any medical queries then give them a free call.
I live with a different type of blood cancer to myeloma called Polycythaemia vera ('PV') and am thus not in exactly the same boat as you, but I’ll share here the great Blood Cancer UK information about myeloma for your reference: Myeloma | Blood Cancer UK and from Macmillan: https://www.macmillan.org.uk/cancer-information-and-support/myeloma
Had to look up what CRAB stands for, and just to check you mean CRAB criteria? I’m sure that’s very useful for those diagnosed with myeloma, it sounds a bit like the “Myeloproliferative neoplasms ('MPN') 10” list of symptoms to look out for with the Polycythaemia vera ('PV') I live with.
If you’d like to look around the forum for specific topics like CRAB then we can use the search box at the top. I hope you don’t mind but I had a quick search and found this thread: Is my Smouldering Myeloma progressing to MM?
For what it’s worth, I read your other post about not wanting to take chemotherapy and I understand your concerns, especially as you’ve experienced how others have been affected by chemotherapy previously. If I may say, I take a type of chemotherapy daily and it’s come to stabilise my blood cancer symptoms and so far so good with no side effects. Perhaps the same could be the case for you with your own treatment?
Keep us posted about how you get on and do keep reaching out to others around the forum @Jean-11.
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Thank you for your reply and support. Jean
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Hi @Jean-11
How are you feeling in yourself?
I was diagnosed with myeloma in 2017
I have had 4 lines of treatment
The kindest so far has been DVD
I can understand if you are feeling fine and not in any pain you are reluctant to have chemo
It is about weighing up quality of life.
If your happy go with what you want to do
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Hi, thank you for your reply. I am 74 next month and the issue I have is that I was not tested for light chain levels until 3 years ago- so I have no idea how long they have been increasing. It seems nonsensical to put drugs into by body that I know WILL make me ill when I am perfectly well. I don’t know what DVD is but the options for me are watch and wait or start chemo and steroids- which will thin my bones and open me up to infection. I completely understand why people want to start treatment but will need more statistics to know how it WILL not MAY improve my already very good health. I am lucky to have a very supportive haematologist who respects my decision. I wish you continued success in your treatment journey. Best Jean
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Hi @Jean-11
I was 49 at diagnosis with young adults
So I was prepared to do anything
I had no idea I had myeloma until I was in A&E for something else and referred to haematology and the damage was already done
It is so good to read that you are being monitored and have an understanding consultant
If I was coming up to 74 I would be looking at my quality of life and I don’t think I roiled went to be going through anything drastic
Once you start treatment your body does become different almost like it’s aged and your right steroids thin the bones and it also causes cataracts
I think your great doing what you are doing
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Hi, I’m so sorry to hear that you have gone through this and that your symptoms are tough. There’s nothing heroic about what I have chosen but at my age why make myself ill in the time I have left- I am lucky to have a lovely family and will carry on playing football with my 4 grandkids until I get hit while in goal and something breaks! I am just as likely to die of a thousand other things so I have checked the figures and am betting on me. Good luck with your treatment and enjoy life. Best Jean
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I love this @Jean-11
I am happy and living my best life, myeloma and Covid helped me to be where I am happiest at home
Out of the rat race and enjoying looking after my adult children
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Hi @Jean-11
Totally respect your decision not to move forward with treatment. The risk you are in will vary by your light chains/paraproteins and if you’ve had any bone marrow biopsies plasma numbers. If your light chains get over 1k that is when they start to cause renal issues, your consultant may have already told you this - but just in case.
Caveat! Below I’m relaying my personal experience in case it helps but I am not a doctor! xx
At diagnosis my light chains were 1200 (I’m light chain only so no paraproteins), but thankfully no renal issues. Ahead of starting induction they put me on a dexamethasone spike. This halved the number of light chains I had in the space of a week and removed the imminent risk of renal issues.
The point of me saying this is you may be able to find a halfway house rather than the full chemo journey - if you find your light chains sneaking into CRAB risk territory. Definitely worth asking your consultant to consider this, if you get to the stage where you need something, but don’t want to take the toll of chemo and the risk of immunosuppression.
I love how you advocate for yourself and have so much respect for your decision to maintain your quality of life - it is much harder to stop treatment when you have started xx
Ps I should also say I am planning to stop treatment (providing I am still in remission) after my consolidation treatment ends.
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