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 weeks on CDT,I then went to twice weekly for @ 8 cycles
I hag a good responce to that cycle,and achieved at end a very good partial response with the treatment,bmb neg for plasma cells,pp1.2 and normal freelights
I just started treatment 2 and i'm doing single weekly velcade with 500mg cyclophos weekly and 40m ex per week,i asked for 3 on 1 off that was shown successful in research but consultant wanted 4 on 1 off(propylactics daily acycloveir,penicillenv,fluconazole,lanseprezole)
I started earlier this time pp was only 33 but rising by 30 % each month then i fractured a rib brushing my teeth !!
Next cycle will be "nontherapeutic2 dose of 2 weeks on 1 off to allow me to get away to Wales for 10 days 🙂 then will review what for cycle 3
My first months results are better than i expected ,i realise next month may mot be as thats what this disease is like but i worry a lot about the huge doese given like 1 size fits all and it doesnt.
We have the benefit of the free light test which shows the myeloma activity occuring at the time unlike the pp test that shows what was happening 2-3 weeks ago.
i sent off my blood early because i can and after 6 days in i could see my fre lights had reduced by 50% ,gave me so much peace of mind
Lower doses have proven to be affective i don't know why so many are not offered them??
I'm 20mg 2 days a wek and now will be 10mg dex twice a week as my dex myopathy reoccured last week.
Has this leg had a venogram to see exactly whats causing it?
hugsss Dai
Sleepy Sue 🙂
So the change in dose should make u feel so much more human and also kick the myeloma s but 🙂
