Hello Jen the answer to your question is for the first four cycles then it will drop down to 40mg for each of the first four days of each cycle only. This will be for as long as the Rev is working and that hopefully for a very long time to come. I have noticed both on this site and from patients in my own local support group that remission times…[Read more]

Hi Tina,I noticed this after my 2nd sct. Sometimes I felt as if I was going to fall over although I never did. I think it was the aftermath of all the medication I had taken and it did settle down after around 6,weeks. I would bypass the GP and go straight to the Hospital and see your Consultant. Unless you have a really good GP and I know some…[Read more]

This is very interesting news but where do we in good old blighty fit in? Don't tell me we have to wait for those NICE people. The clock is ticking guys,get a move on.

Keith.

Thank you Dai and I do agree with what you say with regards to the Dex. Yes it is tough but as I said in my previous posting I'm keeping faith in the hope that the first 4 will be the worst and that after this period I'll be back down to the first 4 days of the cycle only and more stability. I have to say I have full confidence in the Doctors and…[Read more]

Spot on Eve, the patient must always come first and be included in all discussions. What really puzzles me is the vast difference of opinion when it comes to the medical profession something I've said on here before. Why are you told no to Revlimid yet my Consultant said it was they best route to take? Come on we don't have too many options to…[Read more]

You've nailed it again Andy, the fact is unless you have this bl**dy disease there is no way anyone can understand how it debilitates us day on day. Since going onto Rev I've become a zombi like figure wandering around in a complete stew. I can't think straight and only have a very brief attention span but yes I look well also,give me a break.…[Read more]

Hi Amelie, I relapsed from my 2nd sct after 8 months and was going to be put on a trial of Rev/Dex but it had already been closed so I was put onto the same treatment in order to get the PP's down which were rocketing up.
I was also showing 35% MM activity in the Marrow and the Consultant said this was only going to get much worse unless…[Read more]

Hi Amelie,I started on Rev 3 weeks ago after my 2nd relapse and did mention the issue of 2nd cancers which I had read about. He was very emphatic that the risk of this was far outweighed by the benefits difference being a rise from 2%-7% which is hardly earth shattering. Let's be honest when you have MM you'll try anything,I know I will.

Take…[Read more]

Thank's for your replies I'm on 25mg Rev + 99mg Dex per week for 4 cycles 1 down 3 to go.
No Vodka Tom sorry I don't think the Doc's would buy that one but maybe worth a try asking LOL.
Hi Liz hope things work out for you also,Velcade was my previous treatment when I had 8 cycles before going onto my 2nd sct but the Dex was less than half the…[Read more]

Hi Dai,my take on this would be that good health can only benefit the patient as the stronger you are the more prepared your body is to fight against the MM i.e. stronger immunity. The medical profession are always circumspect and slow to acknowledge anything that they don't have a cast iron explanation for but that doesn't mean there's no truth…[Read more]

well,spoken to the nurse today and my worst fears have been confirmed,I will be taking every day and without a break apart from when I reach the end of each cycle and this will be for the first 4 cycles at which point the dose will be reduced. She said they wanted to throw as much as they could at the MM in the early stages therefore the main dose…[Read more]

Thank's Helen/Dai for your content. Like you Dai I'm also sweating buckets and I've adopted an ashen colour akin to a block of limestone. Tiredness,Diarrhoea but now I think it could be Constipation again real fun this. Yes I'm going to contact the Hospital tomorrow as they forgot to contact me today as they promised. This Dex thing is real…[Read more]

Hello Eve, I've been out today and up to now no horrible Diarrhoea. You talk about Slim being unsteady on his legs due to the Dex well so am I. I totter about like an old man and I'm as white as a sheet. I'm still passing blood back end on and off depending on how frequent the Diarrhoea bouts are. I can tell you I feel as if I've aged 10yrs in the…[Read more]

Hi Suea, MM is hard enough to deal with without having a Consultant who wants to throw the towel in. All avenues must be explored and you have the right to demand it so. I was diagnosed Nov 2007 and have had 2 transplants relapsing twice and now take Rev/Dex on going for as long as it works. I also had a plasmacytoma on my forehead which after 10…[Read more]

Hi Teresa, you've just stolen my thunder with regards to tonic water. I drank a half glass of it last night and guess what no cramps during the night. Coincidence maybe but I'm staying with it for as long as it works.

Thank's again.

Keith.

Hi Pennie and Andy, I would have more than settled for half of that 12 years. I was diagnosed Nov 2007 and have had 2 SCT's and started Dex/Rev 2 weeks ago. Must watch out for Constipation/Diarrhoea (tends to switch between the two) Fatigue and leg cramps. I'm sure your hospital will keep you right with all the things to look out for.
I'm finding…[Read more]

Thank's Tom&Andy for your replies. I phoned the Hospital today to arrange my future appointments and explained the situation regarding the tiredness and cramps. The nurse said it could be down to a drop in potassium levels and wants to take blood tests to find out what's going on. She also said that blood needed to be tested on a week to week…[Read more]