[susannahParticipant]

Dear Min Ive written this post several times, but in the end what can I say.
God Bless you

All My Love
Suex

[susannahParticipant]

Hi Paul Im Sue carer for my husband Michael, hes had MM for 15years 45 when diagnosed, hes now on a clinical trial for Bendamustine.
We have always taken one day at a time, and that seems to have worked for us

Good Luck with the trial

Sue

[susannahParticipant]

Hi Min so sorry Peter is still in the wars, hope they find out what it is soon. Sounds a bit like C-dif.
Michael picked that up last time he was in hospital

Best Wishes
Sue x

[susannahParticipant]

Hi Chelle So sorry youre hubby is having such a bad time,I know how helpless you must feel

Big hugs to you both

Sue

[susannahParticipant]

Hi Debs so sorry to hear about Velcade, Michael had a terrible time with Velcade only had 3 cycles as it caused terrible PN in his feet and lower legs. He stared on gabopentin but the pain clinic have put him on high dose pregablin he also takes codene 3 times a day. He says some days are better than others but at night finds it unbearable. He has thought about using a tens machine Ill let you know if he does

Take care
Sue

[susannahParticipant]

Hi Gina So sorry to hear Velcade has not worked for your mum, it is the only treatment Michael has had that didnt work for him, and also caused him lots of problems including PN. He took Revlimd after that with a good result

Best Wishes Sue

[susannahParticipant]

Hi All The Bendamustine is given two weeks on two weeks off, but he takes Thalidomide everyday, he has only had 1 cycle 2 has been stopped until his bloods recover with no medical intervention, once they recover he starts cycle 2. His consultant has told us if he has platelets the trial stops.

It seems to be Velcade and Revlimid all over again ( which we had to fight for as he was refused first time round) I know Bendamustine is used in other parts of the country, so why cant Michael have it without the trial.
This is what we need to ask next Friday if there is no change in his bloods

Hi Min hope Peter is feeling a little better

Take Care All

Suex

[susannahParticipant]

Hi Min Your post reads like a breath of fresh air to me, it made me smile, you sound just like me and Michael. He hates hospital he talks about nothing else but going home before we even get there, and its always my fault when they keep him! Its got to the point now where he says Ill wait a while longer to see if my temp goes down. I love him to bits but sometimes ah——-

Sue x

[susannahParticipant]

Hi Bridget hope you are keeping well. Just back from the hospital Michael still cant have the Bendamustine as his platelets and neutraphils are
still very low, he cannot have anything to help him , platelets or GCSF injections as this is a condition of the trial. The worrying thing is how long do they wait, and what next. So we now have to wait until next Friday to try again

Take Care
Sue x

[susannahParticipant]

Hi Sorry havent posted for a while but Michael only came out of hospital yesterday Hes been really poorly there still unsure why but his blood pressure has been dangerously low 70/54. The infection seems to be under control but there keeping a close eye on him. The trial has stopped for the moment to see if his bloods recover still neutropenic and his platletts are very low , hes already had 2 units of blood, so its a matter of wait and see.

I just wanted to add how sad i feel in reading about Gaye passing away,
the site seems all bad news at the moment,I find it hard to read some of the posts, everyone seems to be having such a bad time and I feel as though i should have more to offer, but I can feel myself getting lower and lower

Enough

God Bless you All
Sue

[susannahParticipant]

Dear Gaye Im so sorry,i think the only comfort now is that you are free of pain and can now rest. When I look back at some of my postings, who was one of the first people to reply,Gaye.
Thank you to a brave lady

God Bless You
Sue

[susannahParticipant]

Hi So pleased to hear Peter is doing ok. How are you? I think every hospital should have a bed for cares, after my experience with hospital this week, a couple of hours to destress, have a sandwich cup of tea (or whatever)and a nap. Then we would be refreshed to start all over again!

Good luck for Monday
Suex

[susannahParticipant]

Hi All Thank you allfor your kind replys. Michael still in hospital but the antibiotics seem to be working, they seem to think its because they caught the infection in its early stages. After a chest x ray the problem seems to be with a shadow on one of his lungs.

Thanks again
Sue x

[susannahParticipant]

Dear Gaye How lovely it is to hear from you. I am sorry to hear you have been having such a bad time. I always talk to Michael about you ,and your post has moved us both. We both respect your decision to stop treatment, it takes a very brave lady to do that.
God Bless you Gaye and thank you for all the love and support you have shown to myself and Micheal

All our Love
Sue and Michael

[susannahParticipant]

Hi Just thought Id update you on Michael, he was admitted to hospital today, I rang the trial team at 9 am this morning as he had a temp of 39 and was shaking, they told us to report to the day centre which we did. After a very long day they found him a bed at 6pm i returned home at 8.30 this evening Michael is neutrpenic and has an infection somewhere? which is very worrying as this was said just over 2 years ago and he developed bacterial meningitis, He should be having his second cycle of Bendamustine next Friday, but it doesnt look as if it will be going ahead now so we will have to wait and see what happens next

Take care
Sue

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