Dear Eve

Thats awful,times like this i feel so helpless.. sending you strength and my thoughts i can understand he feels need to delay asct.
I go in tomorrow for my first ,melp on weds i delayed till first relapse
sending a mega tight cyber hold

love Suexxxxxx

Hi Terry

Well it depends how they do it ,my hospital gave a cannula in each arm one takes blood out then it passes through a machine scoops out the cells then back in to body in the other arm so i had 0 movement had to keep both arms straight for hours !! others have a hickman line or similar and would be able to move i think.

Just take them…[Read more]

Hi Kay,
Sorry SCT hasnt been as successful as hoped and you have the bone pain.

After trying numerous analgesic I started matrifen patches 12.5mcg/hour(fentanyl)
I had tried to get a longer lasting analgisia to maintain the level in blood and be more consistant.
I also managed to have a tooth absess the same day I started it ! so have had…[Read more]

Hi John

I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses…[Read more]

Hi John

I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses…[Read more]

Dear Eve

Thanks for your response that is appauling .

When I had my first treatment ,lasted 12 days on cdt..then had 7 cycles of Velcade , cyclophosphamide,dex ,I chose this i was offered VAD and pushed for VCD/CYBOR-D as it had shown to be more effective than VAD and i was in a mess from CDT and VCD and more tolerable than VAD ,my old…[Read more]

Hi Dai

Thanks for doing this for us 🙂

I don't know if these are relevant but these are a few of my questions

1/ when and how can we get fish genetic testing from bmb more universally done ,rather than if you are at a forward thinking hospital ie the marsden?
(we are so far behind america who are already making treatment plans more…[Read more]

sending you big hugs

keep taking the thinners and takecare shaving 🙂

Sue

Hiiiiiii Dai,

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2…[Read more]

Hiiiiiii Dai,

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2…[Read more]

Hiiiiiii Dai,

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2…[Read more]