Hi Dai, yes Prodeserone is a close relative of Dex but not as strong as you don't get the sugar spikes with it like I did with Dex. And you don't get the come downs when coming off them. I don't understand the difference between PP's and Light changes either,it's enough trying to come to terms with what I've got. The got rid of the infection and…[Read more]

Hi Dai, CDT Has stopped working so the next plan is to go on to Melphan/ Prodeserone which is my best chance. The best and only chance I have is to get my PP'S down which are are at 84. Apart from that I''m of. Let's just battle it.

Keith..

PP's (84) Nuets (0.3) Plts (12) are the latest scores. MY own Consultant is back tomorrow and we'll be having a conversation as to what the next step will be. A BMB is certainly on the agenda and just maybe the CDT will start up again if not another option. With PP's of 84 it does appear that the bone marrow is at the route of the problem. Will…[Read more]

Thank's Tom for your support. Without going into the more gory details I'd just like to say I hope you never ever have to go through this or anyone else for that matter. I'm onto my 3rd antibiotic since being admitted because my temperature keeps going up and down. One of the healthcare assistants who's a great lad said he thought the room was…[Read more]

Hello to all and thank's for your replies. I am improving now and do feel much better. My Consultant is now on holiday but will be back early next week. I'm having very strong antibiotics and lot's of fluids. One of the problems I was having was that I was anaemic and had lost all co-ordination which meant I was finding it difficult to stand. I…[Read more]

HI David although your MM is starting to creep up it's not blazing a trail 6.7-9.5. is pretty mundane. Maybe your Consultant should be organising a BMB to see how your bone marrow is performing as PP's alone are a strong pointer but not the definitive answer.

Best of luck David.

Keith.

Thank's everyone for your replies. Tom sorry but you misunderstand my Consultant is always available, he is very hands on and keeps me informed step by step. It was just that one day when all the nurses were away doing whatever at that time so if you wanted to speak to anybody there was nobody on hand.

Thank's Tom,Eve and Megan for your replies. I was at the hospital today for Platelet transfusion and Zometa.
My Consultant popped in for a chat and to keep me up to date.I will be having a blood test Tuesday and then depending on the result will be having a BMB. He wants to know wether the problem lies with my own Marrow or the treatment I'm…[Read more]

Hi Gina
Yes I've heard of this treatment,in fact it was one of the options I was given after my 4th relapse.
It is given with Dex and thalidomide and has a good record fighting MM. I was given it as preparation for both my transplants but neither really set the world alight,in particular the second which only gave me 5,months remission.
SCT's…[Read more]

Hi Dai, I also had GCSF injections when in hospital to boost my WBC. My Hb was 9.1 Neuts 1.8 and Plts 12. I was brought back in for Plts Thursday which should have given them a boost. I will be back Tuesday for bloods and then Zometa just hope I don't need any transfusions. Good to see the Bendamustine seems to be working for you. The problem with…[Read more]

Hi Trish…just caught your post about Peter's relapse. I had a second SCT which only lasted 7,months so it's pretty much the norm on a second transplant. As for Velcade I had all 8 cycles and was in remission after the first 2 but the subsequent SCT flopped within 7,months. Side effects were few and far between and I think this is because Velcade…[Read more]

Hello Dai,I was admitted last Monday and came out today after 6,days. Very similar scenario to yourself,High temp of 39.1 started things off which in my case would not go down. After both oral and injected antibiotics the temp started to drop to 36.5 only to rise again the following day,and it kept on like this until late Thursday when it finally…[Read more]

Hi Guys,
messaging from my hospital bed where I was admitted last Sunday. with a temperature which would not
become stable. My bloods have been up and down, in particular platelets which were at 14 and I was
anaemic. I had the shakes and could not get warm. I was put onto 2…[Read more]

This has been the worst week by far since all of this started. Since last Sunday I've been very very ill with little or no energy whatsoever. Spent most of my tine in bed and the rest of the time lying about the house. Today I've just about started to come out of it. My Pllatelets are at 14 and nuets 0.3 so neutropenic again BMB 9.5 which is…[Read more]

Hello Wendy/Ozzy I can understand your concern about relapse. I've had 2 sct's the first lasted 2yrs 4months the second 7months when I had velcade which got me into remission in less than 2 cycles although I did all 8.
You must watch out for neuropathy and or spasms in the hands and feet also tiredness and constipation.
In all I've relapsed 4…[Read more]

Thank's for all your kind comments. Yes Andy I do hope it's only for a blood test but I'm in for one of those on Tuesday so the timing would suggest another blood transfusion but it will depend on how the Tuesday test goes.
Wendy my next PP test will be in around a week's time end of my first cycle.Kyprolis what's happening with this one? I've…[Read more]

Yes like everyone else I had and have a husky voice at this very moment. I also have a very bad cough but I'm back on the Dex Sat which will get rid of it. The husk is nothing compared to the cough.

Keith.