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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]