[jeapal23Participant]

Well Michael has had a second chest infection since he has been on pomalidamide. An infection after the first cycle and now an infection after the third cycle. They said that they would stop treatment after the first cycle if Michaels PP hand not reduced by 50% that would make his PP 19. well at best after the third cycle which I argued for as at the end of the second cycle they where not working on the right results so they agreed for a third go. Last Thursday they stopped treatment as the level just is not moving it is at best 30 from 38. So the next step is to take a bone marrow sample to look at the whole picture. But after reading about hot spots and cold spots this could also give a false reading. Oh well you have to put your trust in the medical people.

Mike is having his test on Tuesday and he is back in clinic in 10 days for the result. I feel I need to be up to speed on what is the next step for Michael will be. I think they are thinking bendemustine. I need to do some reading up on this drug.

We have booked to go on a cruise in August so he better be well for that.

[VickiParticipant]

Hi there

Colin gas just had the first cycle of bendamustine. It certainly has hit him hard, so if feeling rough is anything to go by he should be in remission again! The positive is they only give it to him for two consecutive days once a month with prednisilone steroids, so less trips to the hospital. The bed bits are that he has been rough all together.

What other treatments has your husband has? How is he in himself?

Vicki and Colin x

[jeapal23Participant]

Mike had tried velcade pomalidomide and revlemed. Only every had three or four cycles of any of them.

Mike is a fighter. He had had quite a few chest infections the worse being last year when he was in hospital for 28 day. 11 of them in intensive care. They thought he would pull through from that infection. They never did work out what it was.

[bandityogaParticipant]

Hi Jean

Has Michael been offered a STC?

We returned from a week’s holiday in Lanzarote yesterday and met with the consultant today to be told that Ian’s FLC are rising and are now 685 after 7 cycles. They did come down to 329 from 1200, but no treatment at moment until we see a consultant in The Beatson in Glasgow on Wednesday to discuss SCT but Ian would need DTPACE or similar to get his FLC in range. I believe this is quite invasive so if we don’t go down this route it will be pomalidomide. He has also to get a BMB next Monday. Quickly running out of options and I am in panic mode.

Like Mike Ian had 4 cycles of Velcade which didn’t work for him.

Hope they find something that works for Mike soon.

Love Maureen x

[dickbParticipant]

Hi Maureen ,
Good luck with Wednesday, you’ve just got to hang on in there. easier said than done I know.

Richard

[bandityogaParticipant]

Thanks Richard

I didn’t think that they would stop treatment when FLC are 685, all bloods are ok. Hope we get good news tomorrow.

Hope you are doing well.

Maureen

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