[rabbitParticipant]

Hi Morweena.

This was roughly my experience. Initially the side effects weren’t so bad. However, it got worse (accumulating toxins in my body?) over the first couple of cycles.

The fatigue can be tough to deal with. For me, I had serious sleeplessness for months, which made fhe fatigue worse. Then a friend of my wife’s recommended CBD oil. It has helped me enormously with sleep from the very first night.

Beyond that, I suggest:
– Ask for help from those around you. I am so grateful to my family for everything that they have done (and continue to do)
– Make the most of when you have most energy.
– Follow the Frozen philosophy. If something to be done is not so important, then ‘let it go’.

[rabbitParticipant]

Hi Squirrel,

Thanks for your messages. After being told that I had high risk myeloma, I also went through serious depression. However, I have bounced back both physically and mentally. Now that I am in remission, I am rebuilding my strength and cardio fitness, I have had holidays and am generally getting on with life.

All the best, Squirrel.

[rabbitParticipant]

Hi Rebecca,

Thank you very much for your messages and information.

Much as I appreciate your comments about not trusting statistics, that’s difficult for me to do – I am a mathematician / statistician!

However, the percentiles beyond the median overall Overall Survival period are high (in plainer English, people can live far, far beyond the life expectancy quoted), and the new treatments coming in can change everything!

All the best, Rebecca. May you continue to defy the stats for many decades to come.

[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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