[stressedParticipant]

54 female
Diagnosed Nov 22
SCT July 23
Maintenance April 24
Been at 0 since.
Reviews 8 weekly
Just had pet scan July 26 all clear
All bloods normal apart from
Paraproteins crept up to 4 since April
Been advised BVD if next months bloods rise further
Can any one give advice no one at my hospital has been on it it
Do not want dexa as I really struggle with effects insomnia fluids etc when urgently 5ft there is nowhere for it to go
Anything positive about it.

So upset n stressed!!!!

Helen

[rabbitParticipant]

Hi,

On Belantamab, there have been quite a few posts. See: https://forum.myeloma.org.uk/forums/topic/belantamab-mafodotin-antibody-drug-conjugate-adc/

I know dexamethazone can be tough. I had the insomnia too. As you are 5 feet, could you ask for a dose proportionate to weight? (it’s done for other chemo…).

Alternatively, you could simply ask for a smaller dose or take it at a different time.

I know that this is not much help.

Regards
Rabbit

[blobgobParticipant]

I’m just switching to BVD, currently on my second cycle. I only take dexamethasone on Friday and Saturday, as Friday is my chemo day! Can can you really not cope with the steroids for two days, or are you having to take them more often than I do?

I was on Lenalidomide for almost 5 years, but it’s stopped working and my blood markers (lambda light chains) are rising.

• This reply was modified 2 weeks ago by  blobgob.

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