[WolfParticipant]

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 was very high and I had a serious onset of myeloma symptoms including collapsing sternum and 2 cracked ribs which may have been preventable. I wondered if there were budget implications or some other non-medical reason for holding back…one never knows and my lot are very tight-lipped if you ask "political" questions!!

[WolfParticipant]

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 my paraprotein count to the lowest it had ever been but a month off saw it climb again quite rapidly. Resumed Revlimid at 15mgs + Dex at 10mgs. This stabilized things and lowered the pp count. Then my white cell count went wrong so we cut Revlimid to 10mgs, same Dex and this has working well for 4 months with pp count steady at an all time low.

Side effects: bad for 4 days of Dex,hyper in the morning then insomnia, and worse for next 3 days with a steroid hangover (but I've always reacted badly to Dex) then nothing worth mentioning for the rest of the cycle.

[WolfParticipant]

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 hear others' experiences.

Wolf.

[WolfParticipant]

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 Monday, which raises another point:

When I go to the clinic, they take quantities of blood, but some of the tests take up to a week in the lab so although the consultant sees them, she cannot discuss them with me until my next visit. I have raised the question of giving a blood sample say 1 week in advance… they would do it but not at all keen! What happens in other hospitals?

Best wishes'
Wolf

[WolfParticipant]

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 with Revlimid the first cycle is the worst. My own experience was that after the initial 4 days with dex. it was OK until the 3rd cycle then unbearable in the 4th which is when I had the dose reduced. How are your husband's PPs on 10mg with no dex?

Best wishes to both,
Wolf

[WolfParticipant]

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 initially then I had to report the symptoms of what turned out to be clots in my legs when my usual haematologist was away. I ended up with a pulmonary thrombosis after being told to ignore the symptoms and get on with it!

Spongy foot is a good description. I still get this but the Pregabalin controls it and I no longer have the needle stabs in the feet and related insomnia. This was all down to Velcade: on other drugs I'd only previously had slight numbing of fingers & toes.

I hope the results today are excellent and will earn you a long holiday from treatment.

[WolfParticipant]

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 neuropathy, in the hands particularly. I couldn't write or sign a cheque!!

I also believe there's a deal whereby if a patient completes 24 or 26 courses the drug maker supplies further courses free of charge to the NHS.

Wolf

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