[richardlongParticipant]

Hi I'm new to this forum. I was diagnosed in sept 09 and since have had thalidomide, SCT(which gave me 1yr remission), velcade and now I'm on my fourth cycle of revlimid. Surprisingly this has been the first time i have felt unwell with low blood counts, fatigue, nosebleeds, headaches and bone pain. Just came from the hospital today and they said my paraprotein is still at 66(same as when i started), but they said it is "doing its job".
I am 48yrs old now and although i seem to take treatment very easily, i do not seen to get much of a remission period. But you have to keep on going and stay positive.

[dickbParticipant]

Well, you're certainly way ahead of me when it comes to treatment but already you seem to be doing pretty well if you've got this far without any major ailments. I think, like me, you're getting pretty fed up with hospital visits, I am 49, diagnosed at the end of Feb and have already spent a total of 4 weeks in hospital. If diagnosed in Sept 09 then you've already had 3 1/2 years. Dread to think how many hospital visits that has entailed.

My wife keeps telling me that as time goes on so does research and development. Who knows what's round the corner.

[PerkymiteParticipant]

Well Hi there Richard and welcome to the forum.

I was diagnosed in July 2009. Like you I have had the SCT etc… but it gave me 2 1/2 years remission and I am just starting Velcade, in fact this is my first week. How long were you on Velcade before they switched you to Revlimid?

I am going in for a blood transfusion tomorrow, my first, for a low HB reading below 10. But the real problem I have at the moment is Bone Pain. They have switched my biophsophate medicine from oral to infusion and I was warned I would have some bone pain during the changeover but it is crippling me at the moment and the Tramadol, Paracetamol and Morphine do not seem to be helping much!!!

I look forward to your posts.

Kind regards- vasbyte

David

[richardlongParticipant]

Hi David,

Thanks for replying. I was on velcade for I think 8 cycles, although some weeks i only got it once instead of twice a week, due to tingling in hands and feet, colds, etc. My paraprotein started to rise after only a month off velcade and I went on revlimid after another 5months. Strangely doctors told me most people manage revlimid quite easily but i had no real problems with velcade compared to revlimid.
I am also back on zometa infusion and having bone pain, although i thought this was side effect of revlimid or maybe my myeloma being active.
Do you think you'll go back for SCT again?, as docs told me you get shorter remission a second time, although some patients have told me they got as long again.

[richardlongParticipant]

Hi dickB,
Thanks for replying. Well take it from me there are definitely more treatments available for you already and my doctors tell me there are currently trials being done in UK for 2 more treatments.
My doctor always says "your're not a statistic, and statistics are only for doctors prescribing treatment".
4years ago i didnt really know what lay ahead but you meet alot of positive people, patients and nurses. But i know although we are all individuals i have spoken to people who are 10years down the line.
So i think you're wife is probably right

[Author]

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