My dad received his official myeloma diagnosis yesterday and has been told he will be starting his treatment in about 4 weeks as he needs to have a little operation totally unrelated rushed through beforehand so it’s done before his immune system is weakened.
We had our first chat yesterday with the Clinical Nurse about the experience during treatment and some dos and donts, in particular about how low his immune system will be in waves after each bit of treatment.
I am due to get married about 6-7 weeks into his treatment and of course am happy to rearrange/delay but he is having none of it! So can anyone tell me (I appreciate every person is totally different) how they felt 6-7 weeks in and whether they were able or willing to go out to a social function of 40 people, even if it means sitting quietly in the corner?
Hello Dido22,
I don't know what treatment your Dad will be on but this is my experience. I had my first chemo in 2018, 5 cycles of Bortezomib (Velcade®), thalidomide and dexamethasone (known as VTD). I didn't have any issues until my fourth cycle when I began to feel pretty tired a few days after my dexamethasone. I have just started a new treatment - Kyprolis (Carfilzomib), Revlimid® (lenalidomide) and dexamethasone (KRd). I'm finding this harder. I don't sleep for 36 hours after my dose of dexamethasone and I'm pretty weary on days three and four following. I can work away quietly but avoid anything physical as it just saps my energy. As your dad will have just started I'd hope he'd be fine for the wedding.
Hope you have a wonderful day and that your dad will be able to enjoy it.
Iain
Thank you so much for responding.
We yet don’t entirely know what treatment he will having, although they did mention VTD yesterday as a likely example so that sounds familiar. And I totally appreciate that each person is unique and has a totally unique reaction to the treatment.
They just scared me a little (and made my gruff Dad just think they were being over zealous) when they were talking about exposure to strangers and germs etc during chemo. But he really doesn’t want to be shut indoors at all times, he wants to at least try and get some sort of quality of life.
Are there things you avoided? Or even needed around you to ensure you were as a comfortable as possible during treatment?
I can't recall my consultant making a particular fuss about exposure to germs but I never did anything silly. I was at a wedding within a week of treatment starting and I still met friends for coffee. I lived fairly normally and visited friends, but I was never away overnight just incase there were any reactions to drugs that might need attention. I had a couple of instances that did require brief hospital stays.
I'd see Covid as a higher risk and if he is taking sensible precautions for that then he should be fine. As far as understand there is still a level of immune system function but I'm not inclined to put it to the test. You can live life fairly normally as energy levels permit. It's just a case of being sensible. Soon after I finished by treatment I did have mild shingles but this was successfully treated.
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