[bandityogaParticipant]

Hi Vicki

What a worrying time for you both. Ian had revlimid and dex for 5 cycles before it stopped working. I think if cyclophosphamide had been added it might have worked but the consultant didn’t agree.

Ian is waiting on a SCT which has been delayed as he had to have 2 teeth extracted and now waiting for gum to heal. He had a strong dose of cyclophosphamide before stem cell harvest over 6 weeks ago and his FLC have come down from 660 to 300.

Has the consultant not suggested pomalidomide? Andy is on cycle 18 of pomalidomide and hasn’t too much side effects. Get a second opinion if needed or phone myeloma nurse.

Hope all goes well, I’ll put up a prayer for you both. Look after yourself Vicki and take one day at a time.

Maureen x

[andygParticipant]

Hi Vicki,

sorry to hear Bendamustine isn’t working for Colin. It’s a horrible feeling when the consultant says any treatment isn’t working. Hopefully in a month or two Colin can go on to Rev and Dex and get some longevity out of it. I got 22 cycles of moderate stability out of Rev before it stopped working for me and if Colin can get something close to that there will be other options by then.

Both Bendamustine and Melphalan have been mentioned as future options for me but hopefully not too soon.

I hope everything goes well for Colin and for you as well.

Every day is a gift.

Andy xxx

[Author]

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