Can't complain…I'm 73 now. Yes sct in my 2nd year. This gave me nearly 3 years no treatment. Then had Velcade for 4 courses: stopped when I developed really bad peripheral neuropathy which left me permanently on Pregabalin. Again I had 18 months without treatment, then started Revlimid. With hindsight I should have started sooner. My pp count…[Read more]

Hi all,
Just goes to show how differently we all react. I'm on my 17th course and over 8 years since diagnosis. Started last year on 25mgs + Dex at only 10mg. I was on a strong pain relief regime at the same time which may have confused my consultant as to the cause of my severe disorientation attacks. Anyway the 1st 3 months had dramatically cut…[Read more]

Hi John.
Sounds exactly the same system my hospital has. As I said before, in principle they would send me away with blood forms but they are really not keen so I haven't pushed it, especially as I have only once in 8 years been hauled back between normal appointments. It's the PP count that takes the longest, I believe.

Just interested to…[Read more]

Jen,
Im interested to hear of advice to start Revlimid in the evening. This is quite contrary to my experience, especially for the early days in the cycle when you also take insomnia inducing Dex, so I've always breakfasted om the therapy with no sleepy problems.

Just taken my last of this course…week off from tomorrow and clinic next…[Read more]

Hi Susannah,
Your husband's side effects are comparable to mine. he could ask about Pregabalin if Gabapentin no longer works for him. My GP was anti-Pregab because it is apparently much more expensive, but the pain clinic recommended it and it certainly works for me (coming up for 3 years now!)

I'm interested in comments in other threads that…[Read more]

One thing I am seeing already is the variation in treatment across the country. In my 8 years there have been new drugs coming out at quite regular intervals and I've been lucky enough not to have a problem in gaining access to them quickly though not without subsequent problems.

I had Thalidomide (CTD) before my SCT. It was very effective…[Read more]

Hi Jen,
Well good luck. Sounds as though you are starting on the standard dose. The length of treatment depends on how well you tolerate it and you need to be aware of the option to reduce the dose before abandoning it. So the nurse gave you the right answer.

The side effect I forgot to mention when I was still on the full dose was peripheral…[Read more]