High risk 4:14

Hi Pb,

Good to hear from you and sorry you’ve not had a reply yet. I haven’t had thalidomide or revlamid so can’t comment on those, so hopefully by bumping this back up to the top it might get someone’s attention.

I had Velcade and it was really good for me and I’m pleased that the results are heading in the right direction for you too, that’s definitely really good to read and I really hope that this positive trend will continue going forward.

Greg

thank you Greg,  few more changes due to the virus my appointments now only once a week instead of twice a week injections so the thalidomide been dropped and only sex and velcade.  Be interesting to see what changes to pp and light chains are at next meet with consultant.

Hi Pb,

I am really feeling for you having to go through treatment in the context of this virus. I hope they can get you in and out of the hospital quickly for the Velcade injections, and I hope the change in plan doesn’t have any adverse effect on your results. I was always told that it would be fine to delay or extend treatment, so I’m hoping you’ll be ok and this will be just a blip and you’ll get back onto the normal path very soon.

Greg

Hi Pb42,

I am sorry I cant be of much help as I was on VRD. So revlamid (lenalidomide, sister chemical to thalidomide) at 25mg. If I understood correctly thalidomide is given to you IV. Lenalidomide is convenient in that it was given in tablet form so no need of hospital visit except once every three weeks (start of cycle to collect them and perform pregnancy test in the presence of a nurse). I am now on maintenance lenalidomide (10mg) also in tablet form. Would be worth asking your doctor about this during your next hospital visit. 

Take care 

Hi PB I hope you are getting on well with your VTD.  In the UK, NICE protocol is to use thalidomide for induction therapy rather than lenalidomide as it is more cost effective. NICE are supposed to be discussing a technical appraisal (in Oct) of lenalidomide as post SCT maintenance, after the UK myeloma X1 trial demonstrated average PFS increases from 30 months to 58 months with it.  There is a rumour that this will only apply to be patients diagnosed after June 2020.

Currently in the UK the only ways to get lenalidomide (revlimid) are to have private health insurance, to self fund (£4000 per cycle) or to import a biosimilar.

Apologies as I have not been on here for a while so just reading replies. My DVT didn’t work and paraprotein rose before end of treatment. I have just started DVD last week for six months so hopefully it may do the trick.