Hi Dawn, just read your post regarding Rev/sct treatment. My first sct I achieved a complete response so no maintenance which lasted 2yrs 4mths. My second only lasted 7mths and I was then put onto Rev/Dex in June this year in which time my PP's went from 29 to undetectable but at a cost. The steroids have hammered my body and I have suffered muscle wastage which is common with a high dose of Dex. I have also had to spend time in hospital with infections. The steroid dose was cut after 2.5 mths instead of the usual 4 because it was causing my glucose levels to rocket and I had to start injecting with insulin. Now that the dose has been reduced I feel much better and the sugar levels have returned to near normal so no more insulin. After my first Transplant I felt really well in myself apart from where I've had the bone fractures where I had RT after diagnosis in 2007. I've spoken to and read about patients who have had 5,6,7 years from a first transplant and 3-4 yrs or even longer from a second although this is much rarer. MM is very much an individual disease as we all know so you just hope you will be one of the lucky ones. My first gave me an average remission although the second was never anywhere near as good.
I hope you are one of the lucky ones Dawn and you get one of the longer remission times.
Take care of yourself and if you want any advice then you only need to ask.
Keith.
Hi Nicola,sorry to hear what your dad is having to go through. I am on Rev/Dex and was told the first 4 cycles would be the worst because of the high dose of steroids which would be reduced after the fourth cycle.
As my PP's were virtually undetectable after 2 cycles the steroids were cut down to the first 4 days of the cycle only
this halfway through the 3rd cycle because of the adverse effects. Like you say you are hardly off them before it all starts over again and my body wasn't getting enough time to recover so I was feeling unwell for 2-3 days each week. I don't know how your dad has responded to his treatment but if the Dex has done it's job in quick time then I can't see the point of him having to suffer as he is. It might be worth speaking to the Consultant and asking if the dose can be reduced.
Best of luck.
Keith.
I'm a big advocate of the American idea less is more for obvious reasons. Since I've stopped everything I've never felt better,of course I will be continuing my treatment today the 4th cycle but on a much lower dose of Dex 40ml on the first 4 days of cycle only so any bad days I have should only be during that first week after coming off the steroids rather than 3 of the 4 weeks every month. Also my Glucose levels have now stabilised and Diabetes is no longer an issue.
Good health to all.
Keith.
Hello Eve, I've been reading all the posts with regards to Slim's next treatment My first treatment was VAD then sct relapsed after 2yrs 4 months second treatment Velcade second sct then relapse after 7 months and now just starting 4th cycle of Revlimid as a third line treatment. This will be ongoing for as long as it works. Revlimid has done well for me apart from the problems the steroids have caused. I am now down to just 40ml of Dex on the first 4 days of the cycle with Rev for 21 days then a rest period of 1 week before the start of the next cycle which should eliminate most of the bad days I was having. I do hope Slim gets sorted out and gets his remission. Revlimid has managed to make my Paraprotiens undetectable after only 2 cycles so far so good now it just has to stay that way.
Eve/Slim I know it's hard going this MM business what with infections,muscle wastage and the like but we will get there we just have to keep going.
Take care.
Keith.
Thank's Tom and Eve for your posts. The question you ask Eve why do some gain weight and others like Slim and myself lose it is a good one. I had a chat with a Consultant on the ward yesterday about that very point. She said that because I was taking a very high dose of steroids they were causing the muscles to shrink and because muscle weighs more than fat the weight loss is more drastic and harder to put back on. She said protein foods like meat,eggs and fish are a good idea and maybe certain supplements would also help. Fatty foods will not be of much help at all. Does Slim either now or previous been taking a high dose of steroids? I have been eating for England while in hospital and I said to Sue I'm sure I've gained and I'll get on the scales when I get home which I duly did and guess what I lost 0.4 Kilos can you believe that?
I just don't know the answer Eve but I'll certainly keep asking. I have to sit on a soft cushion as I have no backside and literally sitting on my bones and the skin hangs off my arms and legs as I don't have any muscle to support it.
You look on the net and there is plenty of advice on how to lose weight but hardly any on how to increase it.
But we'll keep trying.
Take care.
Keith.
Good luck Mari with the 2nd SCT and I hope the outcome is good with a very long remission period. I had my 2nd one in Aug last year 2 years 4 months after the first in May 2008. Unfortunately it only lasted 7 months but that is quite common with 2nd transplants but not always as I've known some patients get even longer remission times than with their first SCT. I hope this is the case with yours and at least having had one already you are armed with knowledge which is never a bad thing.
Good luck and keep us all informed with Steve's progress.
Keith.
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.
Hi Scott, I just want to throw my best wishes in there for you also and hope things work out well.
I relapsed from my second sct after only 7 months and have just started my 3rd cycle of Rev/Dex. Not too bad tbh but the high dose of Dex which will be for the first 4 cycles is causing problems with my Glucose levels and I now have type 2 Diabetes so have to inject with insulin on a daily basis. As for the golf I have played since being very young my dad got me playing early on,he was a natural golfer me not quite as good as him but ok. Problem now is I can't do a full shoulder turn because of the fractures I have had in my neck and spine. This means I can't get the distances I used to get from the tee but I still hope to get back nearer to where I once was one day,wishful thinking but I live in hopes.
Take care mate…..Keith.
Sorry to hear the infection is back Dai. Of course it never really went away did it? I myself have now developed a rasping cough and can't get warm although my low blood counts are at the bottom of it,my temperature is normal, and I just hope the blood transfusions sort it out on Wednesday. Your Neuts must be very low like mine (0.8) and that would explain it. I have felt terrible for the last week and I remember you saying that Dex can mask an infection and I reckon that is what has been happening. Those Steroids have a lot to answer for,started 3rd cycle today so here we go again.
Do keep us up to date and take care.
Keith.
Been to hospital today to collect the 3rd cycle of meds. Will be going back on Wednesday for blood transfusions 2 packs. This should rejuvenate me so at least I will have a little more energy. Latest blood results as follows. Hb:7.6 WBC 1.8 Plts 45 Neuts 0.8. These figures are the lowest ever and the reason I have been no better during my rest period.
Thank's for that Jo and I certainly hope you are right. I see the diabetic nurse Monday when I have my bloods checked before starting the 3rd cycle. at the moment I take 160mg per week for 3 weeks of each cycle with 4 days rest in between and Revlimid for 21 days consecutive with 7 days rest from everything before starting the next cycle. This will be for 4 cycles then the Dex will be 160mg for the first 4 days of the cycle and nothing more. This will be far better as my body will have time to recover which at the moment it does not which is why I feel constantly ill and the Diabetes just makes it worse.
Take care Jo and stay well.
Keith.
Thank's Eva/Mavis for your replies. It seems a long time since I've actually felt healthy. Thursday night I had terrible pain in both my legs from the knee down to my feet. It came on all of a sudden and I could not bare to move. I had a drink of tonic water and took a magnesium tablet and it settled down after around 15 minutes and no problem since. This is going on for far too long and I'm determined to get some answers from the medics on how the side effects can be better controlled.
Keith.
Hi All went to hospital today and saw Diabetic nurse who agreed that diet was not the issue and that Dex was. This was also agreed with the MM nurse after seeing the glucose readings which substantiate it. Now I have a week off everything the blood sugar readings should hopefully return to normal. On the downside the Consultant wants to continue with the Dex dose as it is for 4 cycles but then reduce to 4 days of 40mg for the first 4 days of the cycle only and maybe less than that depending on blood results. I am also suffering from spasms in my hands and feet which could be down to Diabetic neuropathy which is being made worse by the Revlimid and the nurse said she would be speaking to the Consultant with the possibility of reducing the Rev dose. If it's not one thing it's the other but it's a balancing act as we all know. Anyone lucky enough to avoid all of this in the beginning will surely enough be caught up at some point in the later stages as you and I can witness Dai. MM is a progressive disease throwing up different challenges as we go through the journey. Another thing is my sulphur levels are too low so I now need tablets for that, a problem I last had during my last sct. Latest bloods as follows Hb 9.3 Platelets 41 Neuts 1.0.
Take care all.
Keith.
Hi Eliz just noticed your post. My high Glucose is caused by the very high doses of Dex I am taking. I record my blood sugar levels 3 times each day and it's after taking the Dex that the rises occur,when off the Dex it falls away. I do have a very good diet,never been overweight and short of becoming a Vegan I don't think diet is going to help me very much. Although I was told that the first 4 cycles would be the hardest due to the high levels of steroids my PP's have already dropped from 29.68gL to 1.2gL after less than 2 cycles which imo makes a strong case for dropping the Dex levels asap to prevent me from ending up with a condition that can be easily prevented.
Obviously I'm not a Doctor but for me it's a no-brainer and I'll be making this point at my next hospital visit on Monday.
Thank's again Eliz.
Keith.
Nice to hear from again Dai and yes I also think this Dex dose is way too high and no nothing has been explained other than they wanted to hit the MM really hard. Well my PP's have gone down from 29.66g/L to 1.2g/L so I would have thought mission accomplished on that score? I go to the hospital on Mon and again I'm going to be asking some questions about this because I don't think this dose is necessary. I also see the diabetic nurse at the same time. My Glucose on 1/8 was 20.5 Consultant said as long as it's below 30 no need to worry hmmmm when Dex free 8/8 morning 17.5 evening 11.8 9/8 morning before Dex 10.8 evening after Dex 24.4 says it all. So we know what the problem is. Back down to 13.4 this morning and not taken Gliclazide as yet but phoned the hospital just to update them on the situation. Nurse said I should start from now as a high Glucose level will lower my already rock bottom immune system leaving me open to infection. So it's the devil or the deep blue sea being hit from both sides. Also I feel as if I'm living in a perpetual sauna sweating buckets and I know you have also had this Dai,are you still sweating it out? It feels as though a heart attack is coming on as I also have a terrible washed out skin colour when on the Dex and when off them it returns to normal. If it wasn't for this I would be ok and I think it could all be avoided which makes it that much more annoying. I don't mind paying a price worth paying but is it really necessary I have my doubts? I am into the last 5days of the cycle before the rest and I can't wait but with still 2 more cycles at this level to go I just hope my constitution can hang on in there and that the diabetes does not become permanent with all the problems that comes with it.
Thank's again Dai and keep well.
Keith.
