Dear Fran
I’m sorry to hear that your husband is in hospital, though as you say, he is being well cared for and obviously in the right place.
It’s a hell of a lot to take in at this early stage, but I think if you read some of posts in this forum, you will see how well many people cope with myeloma and it’s treatment. There’s a ‘treatment’ thread which may be helpful too.
The three drugs you mention are standard treatment, although usually with the addition of Dexamethasone. I was diagnosed c. 2 years ago and started treatment via a trial in January this year. My induction was 4x 3 week cycles of a five drug regime: Velcade (Bortezomib), Lenalidomide (similar to Thalidomide), Isatuximab (similar to Daratumamab), Cyclophosphamide (chemotherapy drug), and Dexamethasone (steroid). In general, I coped well during treatment and had minimal side effects. The worst for me was dealing with the steroid as it wears off and tiredness/fatigue kicks in. As you know, myeloma is a very individual disease and no consultant can predict how each patient will respond to treatment. I was a pretty healthy and reasonably fit 59 year old woman at diagnosis (in my case it was picked up incidentally), and I started treatment at 60 (I was smouldering at diagnosis and chose to delay treatment until necessary, also because my partner became seriously ill that year and underwent major bowel surgery, then my father’s health declined and he died). My haemoglobin was borderline for treatment when I started. General health and fitness is said to help to cope with the treatment, but I think how we each respond depends on so many factors.
Re. continuing life as normal, I know that a lot of people continue to work or go back to work after a break. When I was diagnosed, I was in a sort of transitionary period moving from projects ending to new projects starting. I couldn’t continue with my normal work life which involved travel to far-flung places, including fieldwork in remote areas. I wore many different hats with a range of professional commitments. I did a bit of consultancy work over the past two years, but have now given up all my planned projects and other responsibilities. I never thought I would give up work as it was central to my life, but putting aside the fact that treatment and the associated monitoring and ‘admin’ (emails, phone calls etc) takes up a lot of my time and energy, my priorities have changed completely now that I have myeloma.
I hope this is of some help and wish you and your husband well with your ongoing journey. I do hope you have a good consultant and good care. It’s so important to feel confident that you’re getting the best care available.
Best wishes
S
PS It’s good not to think about the SCT until further down the line. I did the same.
