[suenevParticipant]

Have just completed first cycle of treatment with cyclophosphamide, dexamethasone and Revlamid.  Had a very good response with IGg levels down from 46 to 18 but experienced a lot of side effects.  These included alternating diarrhoea and constipation, breathlessness and two different kinds of rash which coincided with the two bouts of diarrhoea.  First one was red and purple blotches and spots which didn’t itch and was followed by a chest infection.  Second one was in the last week of the cycle and is thought to be an allergic reaction – like hives and very itchy.  Ankles and feet then swelled up and liver function is just out of range!

Has anyone else had similar experiences.  I don’t want to come off this treatment if it is working so well – side effects aside!

[susieParticipant]

Hi suenev.

I was on Myeloma X1 trial and was randomized to the same as you. I too had side effects, tho no rashes. I had the severe diarrhoea, visual problems, leg muscle cramps, breathlessness, and some others too. All I can say as the cycles went on I became more able to cope with these problems. They had to stop the cyclophosphamide in the end as it seemed to make me faint, and in the early cycles the drugs made me feel very ill.

It all was worth it though as it brought my PP’s down from 63 to undetectable. So stick at it. Revlamid is a brilliant drug for MM. It will all be worth it in the end.

Good luck to you

Best wishes

susie

[suenevParticipant]

Thanks Susie

 

That has definitely given me hope.  I was so pleased when I got the version of the trial I had hoped for as I had done a lot of research and decided it was my preferred option.  My consultant says he has never come across this reaction before and is talking about swapping me to Velcade off the trial.  I am hoping he might let me try at least one more cycle to see if the same thing happens.

 

Sue

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