With a bit of luck and a following wind (no actually forget the wind) Mike will be discharged tomorrow. I'm not going to bore you all with the details of the ups and downs of the last few days, all I will say is that it was me who bought Mike an ice lolly, which in my opinion was the turning point. I just hope his treatment when he has his SCT is better than he has got some of the days.
Update: Mike has been told this morning that they are stopping the Velcade. (I'm not happy.)
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No hint of a diagnosis? Do you feel comfortable with Micky being discharged? I am sorry the treatment he has received was not the best. And you know that we are praying for a successful SCT. Rebecca Weber
ReplyDeleteHe is quite well now, so not worried about him being discharged.
ReplyDeleteGood news! Stock up on those frozen treats NOW!
ReplyDeleteYeah buy a shipping container. I had hospital ice lolly and although I had a few big mouth ulcers they did not bother me that much the gullety thing which is all part of the same thing though was, well agony bascially! Sorry - so lots and lots of frozen stuff.
ReplyDeleteHi Lorna ,
ReplyDeletejust read message om myeloma uk.........
I have kept up with whats happened to you both.
May I ask what specific reasons they gave for stopping Velcade?
How are Mikes kidneys at the moment?
My body was unable to tolerate after CDT 12 days ,Im now cycle 5 Velcade,possibly about to plateau :( at last PP 10.36
I would get all info I could now as I don't want to use Revlimid yet ,I want it up my sleeve if at all possible.
He started a few new drugs last week didnt he .
Have you asked for a second opinion,I've been referred to Mark Cooke at QU partly to see their SCT protocol .Ive spoken to him on the phone and hes a straight talking guy I'm told and cares about the individual case /human being :)
Have you contacted the international myeloma foundation? based in US but they have a great helpline,I recommend calling Mon,Weds OR Fri and asking for Debbie birns shes a gem and knows her stuff and contacts Dr Durie with any puzzles etc hes a very very knowledgable sensible,caring myeloma specialist in my opinion.
She has a folder of research and great listening and evaluating skills and a sense of humour you could email her also ?
http://myeloma.org/Main.action
Hotline:from uk 001- 818-487-7455 theyre 8 hrs behind us time wise .
So glad Mikes feeling bit better and hopefully home soon but feel unsettled /uncomfortable over stopping Velcade .
When people have had difficulties on Revlimid for example Dr Durie in a video stated it doesnt always mean can't take drug ,when revisited at lower lose all is fine .
Im'm on the mid dosage of Velcade there are 3 strengths 1.3mg/m2 thats by body mass,1.0mg/m2 ,0.75mg/m2.
Theres alos the dex to continue is Mike 40 mg a week or pulsed dose 40 mg days 1 t0 4??
Sorry so many questions Lorna when I bet your worn out and worried ,just want best for you and Mike and can feel how I would feel .....
Sue
I'm so happy he's going home. He's had a rough time. Thanks for taking the time to write updates.
ReplyDeleteGlad to hear Mike is coming home - bet you are so happy. My husband's Velcade is being stopped after one more on Thursday, as he has not reduced the para protien enough! must be 50% according to the NICE regulations after four cycles ( I expect you know all this )
ReplyDeleteWe will know the final readings next week I expect. The weather being so lovely perhaps Mike can enjoy more Ice lollies. All very best wishes.