[MariParticipant]

Thats great news David I am delighted tohear you are doing so well. As for the PP's well i understand that sometimes they can take time to change. The paraproteins in your blood may be old ones as some of them have a longish half life, so the levels take time to go down,

I hope you continue to feel well

Mari x

[MariParticipant]

Hello David,

I remember reading Sarah writing about Gordon wanting to get out on his tractor despite still being very fatigued after his second SCT.

I do know exactly what you mean though, I knew Steve was getting better when he started to play his guitar again. The house had been too quite for too long, it was a good sign!

Mari xx

[MariParticipant]

Happy New Year to you David, and to everyone that is part of this community. I wish you all hope strength and love for the coming year,

Mari xxx

[MariParticipant]

Hi Deb,

yes I thought I had seen that you were getting revlamid on a trial, maybe our consultant just meant they were not doing any trials at the moment. I hope it all continues to go well for you and you dont suffer too badly with any more side effects. I agree that revlamid does not seem as bad as thalidomide. Steve felt awful on that, depression, anxiety and extreme lethargy, all most unlike him, but they cleared up pretty quickly once the therapy stopped thankfully. You are quite right, we just have to think of the alternatives i.e not getting treatment, and look forward to the benefits that hopefully come about after treatment,

All the best to you and yours for a Happy 2011,
Love Mari xx

[MariParticipant]

Hello Sarah,

Sorry I have only just picked up on this thread. I hope that now time has passed and Gordon is starting to pick up. I only have experience of Steve's first SCT but his recovery was very slow at first and sometimes it seemed as if he was going backwards at times. I dont want to 'teach my grandmother to suck eggs' cos you guys are all so much more experienced than me but I am hoping that he is feeling much better and the blood levels are getting there. Those Hb are always the hardest to get back,

Lots of love to you both and Happy New Year,
Mari xxx

[MariParticipant]

Hello Amelie,

Steve's consultant was not really happy with Maintenace treatment mainly due to the toxicity of the drugs used. He was talking about thalidomide, not revlamid and he said there was no trial for revlamid as a maintenance therapy in this country. He said he could not use it for maintenance as it was not licensed in that way over here. He also said that the benefits of maintenance treatment were uncertain and no trial had given conclusive evidence. He said there might be some benefit to some patients who had received a partial response after SCT. It left us feeling very uncertain and I have a feeling that the medical profession have a range of differing views on how useful this treatment is. I think it comes down to what Roz has said, this is a very individual disease,
Love Mari xx

[MariParticipant]

Great news Shirley, hope things just keep on going well for you,

Mari xx

[MariParticipant]

Dearest Roz,

My deepest condolences on the loss of your beloved Michael. You and your family are in my prayers and thoughts at this difficult time. I do hope you can find some peace now, knowing that Michael is now also at peace and not in pain any more. You have done all you can for him over the past months and as others have said you must look after yourself now. Please stay in touch,

Love Mari xxx

[MariParticipant]

Dear Sharon,

Sorry to hear your news, it must be a shock after hearing that all was going so well. I do hope they can get to the bottom of it and sort something out for you soon,

Love Mari xx

[MariParticipant]

Dear Bridget,
I am glad to hear you are getting over your chest infection but so very sorry to hear your other news. I hope the RT helps relieve your pain and you are able to enjoy Christmas and take stock before moving on to whatever comes next,

Lots of Love Mari xxx

[MariParticipant]

We are off to see the consultant for Steve's three month check tomorrow so i will report back after that,

Mari x

[MariParticipant]

Dear Roz,

I am so sorry to hear your news my thoughts and prayers are with you both, I hope that there will be some light at the end of this very long tunnel for you,

Love and Hugs,

Mari xxx

[MariParticipant]

Dear Bridget,

I think a moan is perfectly justified, I would be miserable without my washer so I hope you get fixed up soon. We still have a few days before Christmas so with any luck there is time for you to feel better before the big day. I hope you can find a little time out to indulge yourself and feel better, keep warm and I hope we dont see to much of this snow we are threatened with,

Love and hugs,

Mari xxx

[MariParticipant]

Thank you Amelie, I am very interested in this, I think there is a trial going on with this at the moment, see a recent post from Gill Pearce following her SCT. My husband has just had his SCT but as his paraproteins went up in the time between finishing his CDT and having the transplant his consultant said he may need some maintenance treatment. He was talking about 3 to 6 months on thalidomide but was not totally convinced that this was always a good thing because of the way myeloma develops resistance to some drugs and also the toxicity of thalidomide causing side effects. Its a difficult one to be sure,

Love Mari xx

[MariParticipant]

Good luck for the SCT Shirls, hope all goes well for you, Mari xx

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