Hi Bridget Im pleased a decision has been made and your starting treatment, your post has jogged my memory (whats left of it) Michael is on warfarin, but thats because hes already had 2 dvts, and the other thing about the bloods not recovering very well, Michaels started on GCSF injections twice a week

I had to smile when i read the piece…[Read more]

Hi Eve Its my husband Michael that has MM, like yourself I have always been very open about what the future might hold. Im the one with all the questions, and I do want honest answers. We have been down the no more treatment road a couple of times (before Velcade and Revlimid were availiable) its a terrible place to be in but we had to deal with…[Read more]

H Eve My husband is taking part in the trial, hes on bendamustine thalidomide and dex. He started at the end of July, I did post on here at that time under treatment, i have updated a few times, but as you say there is no one else on this sight at the moment on the trial, so I dont have anyone to compare notes with.I do post if I think if it will…[Read more]

Hi Gill Im sorry to hear of your bad news but i think your oncologist is out of order. How does he know if Revlimid will work or not, Velcade didnt work for Michael (hubby) and we had to fight for Revlimid as it wasnt availiable in our area at the time, but it was never mentioned that it wouldnt work, infact Michael was on it for 18months and had…[Read more]

Hi Bridget You too have been through the mill,(just catching up) Revlimid was good for Michael I think why this treatment has hit him hard because he felt so well on it. We had a long chat with his consultant yesterday, she blames the very high dose Bendamustine for Michaels problems, shes hoping now thing s will settle down now its been reduced…[Read more]

Dear Tina Im so sorry I havent been posting over the last few weeks but this is the first time ive sat at the computer for weeks. Michael has been back in hospital with pneumonia,my daughter was rushed in about the same time (the other end of the County) and ive been doing my best to hold a full time job down, but there is a light at the end of…[Read more]

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

All My Love
Suex

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

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

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

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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

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

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…[Read more]