[susannahParticipant]

Hi

Michael saw his consultant today and unfortunately she has had to take him off the trial as his plateletts are still to low. His PP levels are still the same as when he started the trial, so the treatment has not worked for him. She has referred him back to our local hospital for care, as there is nothing else for him at the moment. We are in a daze as we thought there were lots of treatments in the pipe line.

Love
Sue x

[MariParticipant]

Dear Sue and Michael,

So sorry to hear your news,it must be a real knock back for you. One of our friends in the local support group had the same problem with bendamustine, he was very poorly. Since then he has been having low dose of melphalan and this has helped him hugely. He had his last treatment in September and has been well since then, bloods are looking good. I dont know if this is an avenue you could investigate with your consultant? Our friend was being treated at Kings College in London,

Much love,

Mari xx

[GeorginaParticipant]

Dear Sue and Michael

I'm so sorry to hear your news and have my fingers crossed that there are other options.

Low platelet counts does seem to be an problem with the bendamustine as the same thing happened with my mum.

Thinking of you
Georgina x

[brochoParticipant]

Hi Sue and Michael so sorry your platelets couldnt get back to safe levels . I hope your doctors can come up with another treatment plan very soon It goes against the grain to be told there is no futher treatment when you have gone along with all the treatment so far If your doctor cant see any other way perhaps it would be a good time to ask for a second opinion love Bridget x

[eveParticipant]

Hi Sue
Do not give up,you said your self you both have been in this position before not just once,so I would agree with Bridget,Ask for second opinion.
I know it is Michael and your decision,but he would not be here today if he was not a fighter.
I wish you well what ever you both decide Love Eve

[mhnevillParticipant]

Hi Sue and Michael

So sorry the Trial hasn't worked for you – you will have had such high hopes. I know you won't give up and I have read that refractory patients often respond to drugs that have worked for them earlier in their treatment. Has that been suggested. It maybe that your local Consultant with come up with something, but if not, I agree with others, do get a second opinion.

At least you might have a treatment free Christmas – enjoy!

Very best wishes.

Mavis

[TinaParticipant]

Dear Sue,

So sorry I missed this post and to hear your bad news, I have just replied to both you and Bridget on another.

Isn't Pomalidomide an option for Michael? I have also read that low-dose melphalan has been successful. I would definately ask for a second opinion.

Do not lose hope just yet I am certain there is treatment out there.

Thinking of you both
Tina XX

[MinParticipant]

Hi Susanah and Michael.
OMG you must have both been devastated at this news, but perhaps by now you have had time to digest it and got over the shock and realised that this is not the end.
If Michael is up to it you must enquire about whatever else is available. On the plus side the fact that the numbers have not gone up. Is a good thing because bendamustine is obviously holding it in abeyance. Otherwise his numbers would have gone thru the roof.
Take some time out to gather your thoughts do some research and chat to Ellen on the helpline if your at the end of your tether.
Never say never and I hope you find some answers and some peace as I know how disturbing news of this nature , I will cross my fingers and say a pray to your guardian angel for Michael.
Love MIn

[susannahParticipant]

Hi

Just wanted to say a big thank you for all your kind replys. We are both seeing things diffrently today, Michael looks and feels so well at the moment, so we have decided to look forward to a drug free Christmas, the first in 4 years. We wont be seeing his old consultant again until January so were going to have some family time.

Thank you all once again
God Bless
Suex

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