[susannahParticipant]

Hi Bridget Your post is not boring at all,a bit long (only joking) Michael seems to be in the same boat as yourself, he has also had none stop treatment for the last 4 years and he has been on Thalidomide several times, so it could be over use. Hes back tomorrow to see if he can have his Bendamustine, will let you know how he goes on.

Take Care
love Suex

[susannahParticipant]

Hi Tom Happy birthday to all of them

Suex

[susannahParticipant]

Hi Bridget and Tina, Michael hasnt had any treatment for a month his plateletts are still to low, we go back this Friday, we asked why they were still going down when he hasnt had any treatment apart from dex, she says it is such a powerful drug it stays in the system for weeks.

Regarding the Thalidomide Michael has felt much better since he came off it,
he still gets very tired mid week, but we think this is when he is coming down off steriods.
love
Sue x

[susannahParticipant]

Hi Bridget Like Helen just wondered how thing were going

Love Suex

[susannahParticipant]

Dear Chrissie Im so sorry to hear David is so poorly.I just wanted to send you both a big hugx

Love
Suex

[susannahParticipant]

Dear Gina and Linda

I am so sorry to hear about your mum

God Bless
Sue x

[susannahParticipant]

Hi Chelle I know just how you feel. I wish it were me with the B….. illness, its just so hard to watch your hubby so poorly. Theres no easy answer as hard as it is dont ever give up hope. When Michael was first diagnosed there were no drug treatments around and when he relapesed after his second SCT Velcade was on trial, but we were told we couldnt have it, and to go and enjoy what life we had left together, cant tell you how we both felt. But I didnt give up,I wrote to my MP the Prime Minister made myself a complete nuisance with the PCT and eventually he got the drug, and guess what, it didnt work infact it made him really ill. What im trying to say hes been through all the drugs on offer, at the moment that is. Hes now on a clinical trial for Bendamustine, hes not doing very well on it but last Friday the clinical trials lead spoke to us and said MM is having more money put into trials than any other cancer and there are a couple more drugs in the pipeline, so please please as hard as it is never give up

Big Hugs
Sue x

[susannahParticipant]

Hi Chrissie My name is Sue its Michael my husband who is the MM patient. I know you must feel so helpless watching him suffer, I know I do, but things do get easier. New drugs are always a problem with side effects etc but once the treatment gets underway the side effects become easier to deal with. I know im not the patient but im sure alot would agree with me.
As for treatments not working, well some do and some dont everyone is different but im sure your hubby will find one that does.
Try to stay positive and deal with one day at a time

Much love to you both
Sue x

[susannahParticipant]

Hi Gina Im so pleased your mum saw you get married, even if it was at home
Im sure that memory will stay with you for ever

God Bless you all
Sue x

[susannahParticipant]

Hi Bridget Pleased to hear your ok. Michaels back at hospital today, and guess what, still no Bendamustine, his plateletts have gone down again, seems to be one of the major side efffects, but the good news is he isnt nutropenic, so back next week to try again, at least I get to go into Nottingham to do a bit of retail therapy

Take Care
Suex

[susannahParticipant]

Hi Jo so sorry to hear the beast is back, but there has been alot of positive news on Velcade recently, so good luck

Love
Sue

[susannahParticipant]

Hi Bridget Sorry to hear of the rash Michael hasnt had any rashes, but he has had lower leg burning from the knee down, his consultant stopped Thalidomide as she thinks it was aggrevating his PN, and she said that there were no other side effects of this kind reported by anyone taking just Bendamustine

Take Care
Sue x

[susannahParticipant]

Hi Stuart Ihave noticed this is happening to me , I have posted a few things over the weekien and they have vanished. When I have posted it gives the option for anyone to edit or delete can you helpat all

Sue

[susannahParticipant]

Hi Gill Pleased to hear Stephen has started treatment, Michael was on Revlimid and Dex, he had brilliant response to Revlimid with little or no side effets (total remission) the only down side to Revlimid is that while it is working you stay on it. As for the dex Michael has always had a really bad time with it, but they reduced it and hes not been to bad, he now apologises when he has shouted at me, (only joking) but yes he does seem much calmer

Good luck to you both
love Sue x

[susannahParticipant]

Hi Eve Its so good to hear good news!

Love to you both
Sue x

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