Both Doug and Dottie make good sense Kevin, and like you I was first depressed by your doctor's view, however I now understand where he was coming from and don't put too much emphasis on his answer. Revlimid, after 4 years, is starting to fail on me -- not badly yet, but the writing is on the wall and therefore my need is starting to become urgent!! I am not going to panic at this point, but will keep a close watch on what is happening -- even if it means that I personally go and plead with Celegene when the case becomes desperate. This seems to be the one drug which may make a real difference for me -- not in conjunction with anything else, but on its own. I've had such a fantastic response from Revlimid and it has certainly been the magic bullet which has kept me going for the past 4 years -- and Pom hopefully may take me another 4 -- perhaps?!?!
I'm sure that we have far more knowledge than most doctors on the medication situation for MM, both by being patients and by reading about all the reactions that others have had across the world. Docs must rely on the clinical trial results and things which have been done under strict scientific conditions. For example, the fact that I don't use dex -- most people feel that they can't have chemo without dex, but I'm living proof for the past 5 years that Thalid,Velcade and Rev can all be taken without -- whether the results are the same as with the dex no one knows, but hey, I'm still alive and kicking and doing nicely thank you very much!! But clinical trials always use dex, so therefore its always prescribed with these drugs, but unless you are like me and have extreme reactions to dex most doctors won't consider giving you chemo without it -- even if you complain that you don't like the side effects. Docs have to play by the rules with prescribing tested, tried and true drugs in conjunction with others in the same boat. For some reason the drug companies don't seem to test without dex -- and I'm using this as an example only!!
I'm just going to hang on -- keep my ear to the ground and eye to the computers -- and follow the ongoing saga with regard to Pom. Hopefully by the time I need it the situation will have changed in my favour!! If not, well, I'll deal with that when the time comes!!
On a brighter note, my slightly fluctuating paraprotein level seems to be steadying out -- at the lower end of the spectrum and overall my health is better than it has been since I was first diagnosed. This is fantastic because Kate and her partner Greg are going to marry at the end of next month and we plan to fly over for the celebrations!! They visited last week and I must admit that spending time with those two lovely grandchildren - who I never thought I'd live long enough to meet -- was the highlight of my life!!! There certainly is a very special connection with those two -- and to be woken at the crack of dawn by our 2yr old Michael, with a golden smile and 'Hi Gramma Cath - are you awake?" is the start to a MAGIC day - everyday. I'm just so thankful to Celegene and Revlimid for giving me the past 4 years -- full of such special events!! Sorry,but I'm a bit teary so I'll stop for now!! Love to you all -- Cath