[rabbitParticipant]

Hi Zainab,

I am glad that you have made so much progress. I imagine that, being a teacher, work is tougher for you: being on your feet, not being able to have a nap until you get home, marking homework after the school day has finished…

I was under some pressure to return to work sooner rather than later. After a couple of months of sick leave on full pay, my sick pay had reduced. Another couple of months and I wouldn’t have got paid at all.

All the best, Zainab, and I hope that your maintainance has no side effects.

[rabbitParticipant]

Hi Mulberry,

Thanks for your reply.

I know that new treatments are on their way. Car T and bispecific antibodies have great promise, but I am aware that:
– Car T can be very tough to go through due to cytokine storms (is it similar for bispecific antibodies?)
– As far as I am aware, no drugs based on either of these technologies are approved yet in the UK, although there have been approvals in the EU and US.

I hadn’t heard of Cel mods before. Time for some more researching!

Rabbit

[rabbitParticipant]

Hi Squirrel,

Thank you for replying. All the best with your SCT.

Rabbit

[rabbitParticipant]

Hi Squirrel,

OS = overall survival in years.

I have only just joined this forum today. I have been learning about myeloma mostly from research papers, so I have absorbed some of their jargon. Sorry!

It is an individual thing. As well as having a heart condition which means that an SCT would put a lot of strain on my body, I have responded ‘exceptionally well’ (quoting my consultant) to treatment: 6 cycles of VRD-Dara (Velcade = Bortezomib, Revlimid = Lenalidomide, Dexamethasone and Daratumumub), so there has been less need for an SCT yet. Currently I am in remission (getting maintenance chemo of Revlimid and (every 4 weeks Dara and Dexamethasone)).

I only have enough stem cells stored for one SCT anyway, so for me it can make sense to leave the SCT for now.

By the way, I live near Luton: I get treatment in London.

[rabbitParticipant]

Hi Sqirrel,

I also have the t(4, 14) translocation. I have just finished my first line of treatment and I am in full remission for now.

My haemotologist advised slightly against having SCT as I have a comorbidity (basically: a heart condition). Also, he said that the latest research indicated that there was little or no difference to OS from having an SCT, at least not yet. Meanwhile, I have some stem cell frozen ready for whatever the future may bring.

[Author]

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