[EvaParticipant]

Hi David,
In Scotland, the rules are that Revlimid is available after the second relapse. However, if someone couldn't tolerate Velcade, then I guess that the doc would try to organise special provision. Maintenance Rev is not yet covered by the MHS.
What's so odd is that it is claimed that we haven't had time to do enough studies or for the 'studies' to mature. That might be the case in this country, but there are multiple studies from reputable institutions from all over the world. My impression is that NICE seems to want the studies to be carried out on home territory. Is this a way of stalling for time and thereby lowering costs, or is it an attempt to protect the patient?
There is a history also for research scientists to repeat studies( with perhaps the tiniest variation) rather than accepting work done overseas. Given that myeloma is not a common cancer, this doesn't serve us well. I'm not an expert on this, but I believe it even applies to areas such as vivisection- animal experiments – and I have heard that results that the scientific community were well aware of have have been duplicated many times with new tests in new countries. How you interpret this depends on how cynical you are.
Now, getting back to Revlimid, it's still contentious whether it's used as maintenance, because even although a number of studies have proved that it inreases length of remission after transplant, it's not clear whether there's an overall survival benefit. As for treatment not as maintenance but as a single therapy or together with other meds, it's actually quite a bit more expensive than Thal, though much more potent. I think it's a frontline treatment in some places. I haven't had any yet, so I can't comment on what it was like.
Best,
Eva

[PerkymiteParticipant]

Thanks for the information gang, [i]for warned is for armed [/i]as some bright spark once said. So it looks like my next step should be Velcade, when it comes that is, and I have kicked the ball way way up the pitch Keith 😉

Not that it has anything to do with Relimid but I thought you would all be dying to know that I play a game called Age of Empires Online and this morning at 5:45 a.m I realised how to do one of the most difficult quests ? Legendary Solo recapture of Marion. Hip Hip ???????. 😀 😀

Kindest regards ? vasbyte

David

[ozzyParticipant]

Hiya all
I had my sct in Jan 2011 and my PP never got to Zero.They have been 4 since October 2010 after the 6 cycles of CDT. On my last appt in May the consultant said that it was a good remission but I always worry because its never got to zero so the mm is still there. I too dread every appt my next one Sept I think everyone feels the same. I am going to Spain in July our first holiday abroad since 2009 so I am trying to stay healthy to go and although I'm 58 I am finally giving in and I am finishing work on Friday this week as like you Tom I've been knackered and its so hard to get up early when you're still tired. So here goes another new chapter in my life.
All the best Ozzy.

[eveParticipant]

Hi Ozzy
Getting Myeloma does make you question,how you manage the rest of your life,I think in that respect it is not a bad thing as you value things more.

Ozzy if I am correct everyone has a certain amount of these cells in the bone marrow its when it goes above 5 it becomes an issue might be worth ringing Ellen,to confirm.!!!!

Have a good holiday,and enjoy your retirement ,the only think about retirement is you never get a day off.Love Eve

[DaiCroParticipant]

Hi All,

As I understand it Rev & Dex are good at keeping things stable for a goodly period (current median 30 months and still rising) but it is a therapy NOT a chemotherapy… so Zero readings are not to be expected if your starting position was out of the box (i.e. above 'normal' – whatever that is).

So R&D might cap a reading that is above normal (for sake of argument lets say 20pp's) an keep them there or thereabouts… and do so for quite a long time.

I started Cycle 5 of R&D yesterday and I'm feeling Okay.. not brilliant but manageable… and if it stays like this for another 24 months I will gladly take it.:-)

Its a matter of perspective. At my stage I will take 30 months and be very, very grateful… even with a 'manageable' quality of life. My hope lies in something else… bolted onto R&D or freestanding… coming online within or at the end of R&D's working life.

5 year SCT's or long term remission from other sources are now beyond me and I know and accept that. 30 months IS long term for me… followed by whatever there is to keep me going for a year or so after… lovely, as David Jason might say, jubbly.:-D

Guarantee it and Id be rubbing my hands in glee.8-) 😉
Dai.

[tomParticipant]

Hi Ozzy

A well done to you for making the decision to pack in work, as for me I still aint made my mind up yet (i know i dither) but mine is down to the financial side of it :-S, we had some put to one side for a rainy day but am sure you all know its Pi55ed it down since 2008 when My Young Bride (Elaine) fell ill then I in 2009 but hey Ho both still here :-D.

Good Luck on your retirement Ozzy and I would first hold a meeting with yourself and make sure you have Two days off Lol.

one still working Tom "Onwards and upwards"

[Author]

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