Hi Davina
I’ve just seen your post.
I’ve never heard of anyone as young as your son with myeloma.
The anxiety of not knowing what’s ahead I can be debilitating. Both for your son and yourself and I’m afraid I haven’t any bits of advice that could take this anxiety away. Talking does help especially with other myeloma patients.
I can only give you my summary. I was diagnosed 7 years ago age 50 following broken vertebrae. I had cdt then stem transplant. Was then drug free for 3 years, but each time I was due in clinic experienced the anxiety of thinking/expecting the worst.
Then I relapsed and have been on various regimes since then. But I’m currently on daratumumab and my paraprotein are steady. I feel very well but the only hiccup is I need a vertebrae fixing by an operation.
The treatment of myeloma has got so much better in even the last 7 years it’s untrue. The daratumumab is now licences for 1st relapse and again this is going to improve our quantity and quality of life immensely. Myeloma is now regarded by most people as a chronic illness that can be kept in check rather than a ‘hopeless’ diagnosis. The specialists also seem optimistic that myeloma May have a cure as a possibility.
My anxiety approaching each clinic day has lessened over the years, but it is still there. I do find that this forum is very helpful and also seeing and talking with others waiting in clinic is good. I’ve not been to an info open day but some people find these useful.
I’m rambling!
I do hope all goes well for your son and you.
Kind regards
Mike
Mikejanulewicz 5 years, 6 months ago.
