[jeapal23Participant]

Well not been around for a bit. Mike was getting over his near death experience in April, we have been on a great cruise to Norway and I gave up my job, I had just had enough, handed my notice in and left all within a week. I am waiting to get my pension from the BBC and I have a nice part time job 15 to 20 hours a week. So life is getting better. Mike started pomalidomide on Friday and he is exhausted and getting weak. His stroke doesn’t help. They are see him on a weekly basis so we will talk to them on Thursday about his symptoms. He has been told if his PP level doesn’t half by two cycles they will stop and they are only going to give 6 cycles anyway. I am feeling a bit paranoid about germs and him getting ill, my new job is a primary school and they are just full of germs, hand gelling all the time.

Hopefully I will keep in touch because you are all such a lovely bunch and supportive
Jean

[andygParticipant]

Hi Jean.

They seem very strict criteria for Mikes PPs. Though I think I achieved it and I’ve just started my 12th cycle I guess it depends on the criteria by which you qualify for Pomalidomide. Is Mike on a trial?

My wife still works and is sneezing all the time but remarkably I’m doing ok.

I hope everything goes well.

Every day is a gift.

Love Andy xx

[jeapal23Participant]

Hi Andy, No Michael is not on a trial, he is very tired on this treatment at the moment, this is his first week. He is back at the hospital tomorrow for bloods.

Michael had a stroke 12 years ago so I think this plays a part in the treatment, they held off for a long time not treating Michael. His PP level has been as high as 70 but at the time he had no other issues they left it along. they only started treating when the lesions started. Hope he does alright on this im just a bit protective at the moment about germs.

I am glad I stepped away from my stressful job and doing a little part time one now.

[bandityogaParticipant]

Hi Jean

Good to hear from you and glad you are now only working part time. It will take away some of the stress as we all get anxious when things start going wrong. Hope the treatment works for Mike and he gets into remission . Ian is on 4th cycle of revlimid and so far so good but we all know how quickly things can change.

Take care

Maureen x

[jeapal23Participant]

Well after Mikes first cycle he got a very bad chest infection. He was given a 10 day bacterial antibiotics to take and I’m pleased to say got rid of the infection. His Pp level went to 29 from 38 but jumped back up to 33. He is now in the third week of cycle 2 if his PP Level does not come down to 19 they will stop treatment. Pray for a miracle mikes level have never been that low with any treatment.

[bandityogaParticipant]

Hi Jean

I’m sorry you are both having a rough time again. I will pray that Mike’s pp come down to 19.

Ian is is on cycle 6 of revlimid and dex and so far all is well but still waiting on results from last week.

Stay positive

Maureen

[andygParticipant]

Hi Jean.

Infections can effect the results of blood tests and to only give Pomalidomide two cycles and expect a fifty percent reduction seems a bit harsh. Having said that I only had two cycles of Velcade for similar reasons! When I was on Revilimid my PPs didn’t show a reduction for four cycles till they added Cyclophosamide to the mix. I ended up having twenty two cycles eventually.

Only Revlamid and Pomalidomide have ever worked for me.

Every day is a gift.

Andy xx

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