[regineParticipant]

Dear ianmac,
I hope my positive experience of your forthcoming treatment will give you some hope: I started it last December after my previous one had stopped working, and within 7 weeks my paraprotein levels fell from 33 to ‘too low to measure’! And I am not experiencing any side effects.
Of course everyone is different, and no-one knows how long it will continue to work, but I am just very grateful for it and enjoying my reprieve.
I wish you all the very best,
regine

[regineParticipant]

Hello Millie 12,
I have been on Lenalidomide and Dexamethasone since last October and would highly recommend it. It is my first treatment, so I don’t have any other experience, but apart from slight constipation and one night’s sleeping difficulties a week I can lead a normal life and just go for a blood test every four weeks.
You obviously need to weigh up the different pros and cons, and I wish you all the best for your future treatment(s).
regine

[regineParticipant]

Hello Colin,
as I mentioned in my previous message, I was advised against SCT by my cardiologist, but then my cardiomyopathy is probably more serious than your ‘minor heart damage’.
I don’t know if anyone can say that remission times were shorter with different treatments, as it all seems to be so individually different. I am 69 and so near the cut off age anyway, which makes me confident that the ‘milder’ treatment is best for me! But you are younger and fitter, so it is different….
You can only listen to the doctors and then go with your instinct…
I wish you the very best outcome,
regine

[regineParticipant]

Thank you, Graham, for your suggestion. The same idea had crossed my mind, too. However, when I met my consultant last Monday, she told me the cardiologist who is treating my cardiomyopathy (diagnosed a week after the myeloma!) advised against the stem cell treatment, which meant I didn’t have to decide in the end.
I started my Lenalidomide/Dexamethasone regime a week ago, and after such a short time am (still) feeling ok.
I am sorry I can’t really answer your question, but wish your wife all the very best, whichever route she takes,
regine

[regineParticipant]

Hello Val,
Thank you very much for your reply. We seem to be in a similar situation – you are just a little ahead of me.
I (think) I have decided against the stem cell therapy and for the lenalidomide and dexamethasone and will start treatment tomorrow. It is a bit scary, but I hope I will tolerate them reasonably well, and if not, I know there is the option of reducing the dosis.
I wish you all the very best on your new regime and hope it will work for a long time,
With kind regards, regine

[regineParticipant]

Hello Colin,
Thank you very much for taking the time to reply to me. Yes, the diagnosis was a shock, as I don’t feel any symptoms yet, but am getting used to the thought ….
My treatment is supposed to start next Monday, and I think I will opt for the lenalidomide and dexa…, but the third part in your treatment has not been mentioned, probably because my cancer is stage one?? Or because I have cardiomyopathy as well (thickened heart muscle).
I am sorry you had a short remission and hope this treatment will help you for a good while yet, and the side effects will not get worse.
With my best wishes, regine

[Author]

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