Hello Marlene,
I have relapsed twice and had 2 transplants which is the limit for me. I am now on Dex/Revlimid for as long as it works. Revlimid like most MM drugs knocks the Neuts for six which makes you very open to infection. I've had that many I can't remember which ones I've had and when I got them. If I were you I'd go for the trial and…[Read more]

Hi all, I am currently on the 5th cycle of Rev/Dex and had my last blood test on 22/10/12 which showed Hb 10 WBC 2.1 Plts 37 Neuts 1.2 and PP's 2.13gl. I will be having the next check on 05/11/12. Platelets and Neuts are the main concern so I'm hoping there's an upward trend at the next check. I feel ok in the main although I have picked up a cold…[Read more]

Hi David, I've relapsed twice and on both occasions the main problem I had was increased bone pain.
PP activity on it's own is not the deciding factor and only after a bone marrow biopsy can the doctor really tell what's going on. My PP's are checked every month and I can't understand why you have to wait until 12th Nov.
I wouldn't worry about…[Read more]

Cheers Tom I can always rely on positive vibes from you.
Had Zometa today and My next blood test will be in 2 weeks unless anything happens in between.
The Doc is pleased with my latest blood results apart from the Platelet count which will be watched carefully.
PP's are at 2.15gl slightly up from Zero but only a minimal fluctuation so no…[Read more]

Hi Andy, nice to see you looking well today at the day unit. As you say the Prof has explained all about Allo sct's.
It's all about the match of course and when a close one is found then the outcome can be excellent with a long remission. I do hope they can sort it out for you after all the setbacks you have had along the way. I know that the…[Read more]

Update as promised…Had blood test this morning prior to Zometa on Wednesday. Got a call with the results which is good news. HB up from 8.5 to 10, Neuts up from 0.6 to 1.2 and Platelets up from 32 to 37. Still have to stay off Tinzaparin until Platelets get up to a nearer normal level. Sugar has stabilised to single figures and temperature has…[Read more]

Hello Dai and thank's for your comments on my post but I just want to clear something up.
I went to the hospital on Monday for a blood test before collecting the meds for my 5th cycle of Dex Rev.
This treatment although knocking the PP's down to virtually nil has also battered my blood counts in particular the Platelets/Neuts although the word…[Read more]

Hello Nicola, as I said to you in a previous post I was feeling very similar to your Dad regarding side effects.
Try not to worry about it and you are right it is the steroids and a week is no time at all with withdrawal symptoms.
These like all things MM vary between patients and when your Dad's body adjusts to having the drugs stopped he will…[Read more]

Hi Megan, I had 8 cycles of Velcade and although I didn't suffer neuropathy I did have spasms in my hands and feet after the 3rd cycle. The dose of Velcade was reduced and it did settle down. With Neuropathy you must catch it early as sometimes it can't be reversed. Inform the Consultant as soon as possible if you haven't already done so.

Best…[Read more]

Thank's Tom for your very prompt reply. I must say you are always a great source of inspiration to us all.
Isn't it strange though that when they were telling me only a few weeks ago that my bloods were fine I was feeling absolutely awful while now? Sometimes I just don't get this whole Myeloma thing and I even wonder if the Docs…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]