Hi Michele and thank you for your reply. I'm on Rev/Dex after 2 sct's and 2 relapses last transplant lasted only 7mths first one 2yrs 4mnths. I've taken Dex on both my previous treatments but nothing like the amount I am now taking which is why my glucose level is being effected in this way.The Consultant wanted to hit the PP's hard which were rocketing up from 5-30 in the space of a month. They now stand at 1.2 which has only taken 6 weeks which is excellent but I don't want the cost to be too high. I was told the first 4 cycles are the worst and they were not kidding but from the 5th cycle on the steroids will be reduced to the 40mg on the first 4 days only instead of 40mg for every 4 days for 3 weeks of the the cycle with 4 day rests in between. I have tried the 10,5,3,1 to reduce the come downs and am now doing a 10 on the 5th day but tbh it makes no difference and it's another day less I have from taking them. I would rather have another rest day to allow my glucose level to stabilise. But for the Dex I would be ok and I certainly don't want the diabetes to be permanent and be reliant on insulin for the rest of my life and all the problems associated with it.
Thank's again Michele and do look after yourself.
Keith.
Dear Helen & Eve ty for your early replies. I have always had a healthy diet with little sugar or salt. Oily fish and plenty of fibre at least twice a week. I always check the packaging when buying foods to make sure of a low sugar and salt content which is why I was annoyed when my latest test 9 hours from the previous one had more than doubled. Of course the one main difference was it was taken after starting up on the Dex again which proves Diet will make little difference and that Medication will need to be used,something I wanted to avoid if possible. I've never been overweight in my life although have a very good appetite. As long as it doesn't become a permanent situation then I will be happy but nobody seems prepared to commit themselves one way or the other. I suppose they are only protecting their own reputations because they just can't be sure but time will tell. One thing is for sure, there is a marked difference in how I feel when I'm at 10.8 as opposed to 24.4 so I've got to get it down one way or the other.
Thank's again girls it's most appreciated and do take care.
Keith.
I've just had a phone call from the hospital saying that my sugar has gone from 13.5- 20.5 in one week.
Consultant has said it must not go any higher than 30 and I'm waiting for the dietician to get in touch with me.
Heard nothing as yet but if still no word by tomorrow then I have to let the hospital know so they can give the dietician a kick as they tell me it's urgent to get on top of it.
Thank you Helen and Jill for your prompt replies and I'll let you know when I know more myself.
Keith.
Hi Dai,I think you already know about my Dex but here's where I am at the moment. I take 40mg for 4 days then 20mg on the 5th day followed by 3 days off before starting allover again until the end of the cycle. I take them after my breakfast serial at around 10pm each morning and take the Rev at 9pm each evening. During the first cycle I sweated a lot but strangely enough after starting the 2nd on Tuesday it's the best I've felt since starting this new treatment although still early days. The acid test is not when I'm taking them but when I stop so the jury is still out and this coming Sunday should be interesting.I don't feel as tired as I have been and I'm wondering wether my body is starting to become accustomed to the treatment. My face and upper torso is bright red in the mornings but that has always been the case with Dex and isn't really a problem as before this I was looking like death warmed up so it's an improvement on that. My bowels have also seemed to have settled although I still get fluctuations between Diarrhoea and Constipation but not as severe as it was.All in all I'm not too bad and if it gets no worse than this then I can tolerate it but I also realise that it's very early days so I'll be vigilant all the way through.Low platelets are a problem at the moment and still falling but they tell me this is to be expected with Rev but my Neuts are picking up really well at the last count Plts(54) Neuts(4.2).
Hope it gets better for you too Dai.
Take care.
Keith.
That sounds like a good result Terry and long may it last. Carfilzomib does sound like a cracking drug and I certainly listened to very sound reports about it from Consultants at MM meetings I have been to recently.
What does puzzle me is that why do these trials all have to be repeated in Europe when it's patently obvious that the treatment works and that it's only going to prolong the wait and add to the cost. As we patients know time is something we don't always have a lot of so it's very important that these drugs are available to us when we need them,like you say no boarders or obstacles. If it's there,safe and proves to work then we should have access to it.
They are the only provisos that should exist and no others.
Take care and hope everything continues to go well for you.
Keith.
Hi Vikki, joking aside you can never treat the possibility of infection too lightly. the first 2 months are crucial and if you can get past that without a problem then you have been extremely lucky. I got very bad infections during and after both my transplants and I was ultra careful. My wife was very thorough and cleaned everything with disinfectant and would never go out without a good supply of antiseptic wipes for wiping door handles and shopping trollies. Also one of the main causes of cross infection is money which passes through ever so many hands so try to remember not to touch your face and mouth and wash your hands regularly and always before meals. Remember one infection can spoil and set back the recovery and maybe even force you back into Hospital and none of us want that do we?
Best wishes to you both.
Keith.
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 do vary quite a lot. I myself have handled the treatments fairly well even if this one up to now has been the toughest but my remission times have been nothing more than the ballpark average and nothing much to shout about.
The 2yrs 4mths from the first sct was sort of ok but then only 7 months from the second tells the story. This disease becomes more resistant as you go further down the line hence my Consultant wanting to hit it with everything he can in order to win back some ground and I trust him in that even though it is hard. I remember being told shortly after I was diagnosed that the Myeloma I have is very aggressive and that strong measures had to be used in order to dampen it down and they certainly weren't kidding. I have already had multiple bone fractures because of the old story of being diagnosed late but I've battled through it with RT treatment. I can't and won't say anything has been straightforward because it hasn't but I have managed to battle through it all with the support of my wife and our excellent hospital,doctors and nurses who I trust completely.
Thank's again for your thoughts and take care of yourself.
Keith.
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 are lucky in that respect Hospital is the best place to go to get urgent attention. I found when I was sitting down I was ok but when standing I would get a very strange feeling in my head,a sense of unbalance which would come and go.
Good luck Tina and I hope you get it all sorted out for yourself.
Keith.
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 hospital which is why I will battle on. No fight worth winning is easy and it's the winning that's important. I just have to do all I can to beat this thing.
Hope things improve for you also,I think we both deserve a bit of a break.
Take care.
Keith.
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 call on so let's get on treating all patients equally.
Keith.
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. People mean well I know but enough is enough I just don't want to hear how well I look however well meaning it is. It's how I feel that matters and I'm wasted and that's a fact end of story. My hope is the first 4 cycles are the worst and then afterwards everything starts to return to normal so I'm lead to believe. By the way our star nurse Kat phoned me this morning asking how I was…what a star she is. Second cycle starts Mon,can't wait LOL.
Stay well mate and let's see those horrible PP's start to tumble.
Keith.
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 treatment was started. I never did feel as well after my 2nd sct as I did after my first and thought the remission would not last. I had a plamacytoma on the front of my head which disappeared after 10 days of Rev which proved the treatment was having the desired effect. I will continue with this for as long as it works and hopefully by then something else will be available to continue fighting this horrible disease. It's all about buying time and as I've already said I'll grasp onto anything that will keep me going. The way I see it they put the facts in front of us side effects and all and if there is a treatment that could help and we are happy to try it then we should be offered the chance to continue living. I have to admit I am very lucky to have an excellent Trust Hospital which is why I am very concerned about the future changes that will come along with the health service reforms. If it works leave it alone.
Take care.
Keith.
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 care and best of health.
Keith.
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 dose I'm taking now which made things a lot easier.
Keith.
