[KeithH17Participant]

Hello to everyone, Still battling on but I think my body is telling me it's had enough. Two weeks into 3rd cycle and just started back on the Dex after feeling terrible all week. When I saw the nurse on Tuesday for blood tests she asked me if I had lost weight because my arms looked very thin. Funnily enough I was thinking the same thing as my Trousers keep falling down and my legs are like pipe cleaners. She told me to get weighed and tell her the result on Thursday when I go back for Zometa. When I got home I got on the scales and I'd lost 17 pounds since starting the latest treatment just over 2 months ago. My appetite is good so I am eating plenty but can't put any weight on. Could the type 2 diabetes be a factor in this as I am not eating anything that contains high levels of sugar,or is there a more sinister reason. TBH guys I've had enough of all this now and maybe I should put things in the hands of nature and let it take it's course. These poisons are doing more harm than good and I'd rather have a short time of reasonable health than having to suffer this. If I had only to please myself I would not even have to think about it but that would be selfish and I'm not that type of person. I have responsibilities to others and that is important to me so the fight continues but I need to sound off now and again. When I go to the hospital tomorrow I will talk to the nurse about my weight and post any news.

Thank's for reading me and stay well.

Keith.

[tomParticipant]

Hi Keith

Am sorry to hear your having another rough one 🙁

Am not sure if this will help?? and if it upsets people I am extremely Sorry 🙁

But during Mt Treatment I also had the Eff it av had enough, lets get some proper life and do away with the drugs. I told him upstairs (god) three times over the two and a bit years that I have had enough take me now and laid down BUT in Minutes I was up again saying NO I was having a bad time al get better. Am I pleased I said the latter?? too true I am Keith because as you Know I GOT BETTER 😎

I honestly know its Hard Keith been done it got the tee shirt Mate, stick with it and I and others will pray that your soon better.
As for the weight loss I had it also I am a natural 36" (tight) waist that went down to a loose 32" waist no arms no legs Nothing but av got me belly back and am proud to lay mu pint pot on it, I still have the "Thin" clothes I bought when i was ill just in case it happens again.

The only time I would say thats it no more is when I am told "we cant do anything else but give you these to extend a feww weeks/months" Thats when I will say Thanks but no thanks.

Sound off as often as you want Keith and if you want to chat contact me on t.lappin1@ntlworld.com

Tom "Onwards and Upwards" xx

[DaiCroParticipant]

Hi Keith,

I know where you are at… I am just coming to the last week of Cycle 7 of Rev & Dex and I have had to contend with this series of gut infections which allow little to no quality of life… although the cause has nothing to do with Myeloma. I have been referred to the Gastro-Intestinal Clinic and I am hopeful that there is nothing too sinister going on and that they can fix the problem and allow me some sort of quality of life because I for one am thoroughly cheesed off with this 'existence'.

As for you Keith I think we both know where the problem lies… in the insuperable problems caused by your Dex dosage. Its your life… your decision… and if I was you I would be insisting that the Dexamethasone dose be lowered to 40mg once per week [b]as from now[/b].

Whatever they were trying to achieve with what I would call a massive overdose of Dex has either worked now or it is never going to work. I know they said for the first 3 or 4 cycles? But it has obviously had an adverse effect on both your body and your spirit… both just as valuable to you in your fight against MM.

I have been on Revlimid 2.5 and Dex 40mg once per week from the start and apart from the b****y gut infection everything else seems to be okay.

Its your choice… but rather than talking and thinking about stopping treatment to enjoy some quality of life surely it would be better to take control and ask for the treatment (or at least the Dex part of it) to be cut right back to the bone.

Its your life… take control of it and tell them what you want. There's nothing lost in trying.

Dai.

[scott9Participant]

Hi Keith

Stick with it. I know it will pass for you. I was pretty much the same when I was on Velcade. My weight dropped to less than 9 stone. I was skin and bones. I thought I was dying but came through in the end.

This is a tough disease to live with but there can still be good times.

Keep fighting.

Scott

[KeithH17Participant]

Thank's Tom for your concerns likewise Scott/Dai. Of course I know you are right Dai Dex is the problem. It's given me type 2 Diabetes for a start for which I am injecting insulin on a daily basis. I was looking at the MM Beacon online and read about the regime I am currently on which was first trialled in the US in 2005 and it was exactly the same dose that I am currently taking…Rev 25mg Dex 80mg 3 times during each cycle. I have to admit the weight loss is a bit of a concern of course it could be a result of the Diabetes but with what's going on in my body at the moment you can't help but second guess everything that comes along. I'll just be pleased when things settle down and I can enjoy something resembling a normal life. At the moment my bad days are outnumbering the good ones and that isn't good. Hope things improve soon for you Dai and we can both enjoy a decent quality of life.

Keith.

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