David,

Thanks for the reply. I’m not sure what it is but I’m having a CT Scan tomorrow, which will hopefully give me an answer on what’s going on, or at least, reassure me, that nothing serious is causing it…either way I’ll know in a few days.

I’ll keep all posted if I get an answer.

Kind Regards

Scott

Gordon,

I’m glad to hear, because I’m booked on the Manchester info day in November. I have booked before but never attended for the fear of finding out too much info that could possibly scare me for the future. However, I thought it best to attend and find out for for myself.

Looking forward to it now.

Kind Regards

Scott

I agree with louishenry. I think, I hope, that Celgene will reconsider their pricing to the NHS now that they have told them they will be cancelling the drugs. Surely having spent all that money developing the drug they would rather get some return on their investment with a lower price point than nothing at all if they can’t supply!

I have read…[Read more]

Hi Fiona,

I’m suprised at how well I feel actually with regards to the Allo, however, I believe its generally well tolerated especially in younger patients (I’m 42) and I think this this is largely due to the RIC (Reduced Intensity Conditioning) regime which I chose to have. Mine is the SEATTLE PROTOCOL and consists of 3 x days of Fludarabine…[Read more]

Lisa,

I too had pain, bad pain before we went away on Holiday and I even visited the Physio a few times hoping that they could cure me of what we thought was ‘muscle pain’! Little did I know then what was to come. It was the worst holiday I will ever have, however if I hadn’t of gone then I may not have been diagnosed as quickly as I could have…[Read more]

Hi Lisa,

I was diagnosed last year (nearly 12 months ago) and I was quite bad from the off with collapsed vertebrae which happened whilst we were on holiday abroad. In this respect, we really didn’t have a choice because they knew something was up. My kids are older and were 15 and 12 at the time and we decided to tell them everything from the…[Read more]

Mavis,

Thanks for the reply. Yes, my Wife and I are part of the Facebook Page for Allogeneic Transplants but I thought I might try my luck on here.

My Mucositis has lasted approx 7 days so far, however, luckily now seems to be subsiding. My Seattle Protocol detailed 4 x small infusions of Methotrexate of which I had 3. They cancelled the last…[Read more]

Richard,

That’s great news. A real uplifting story that helps keep others like me going and gives them hope. I was diagnosed at 41 last August, recently had my Auto (Feb) and I’m due my tandem RIC Allo at the beginning of June. Luckily I have a fully matched unrelated donor and I’m hoping everything works out and I don’t get too much GvHD, but…[Read more]

Hi Angela,

I went back to MRI on Wednesday and my Neutrophils had risen slightly but not by much, they were up to 0.83. I too had another injection and I have to go back on Monday for another quick review. I feel pretty good though and I have started doing things like walking the dog and I even tidied the garden yesterday and cut the lawn,…[Read more]

Hi Angela,

I have been ok thanks. I am still a little tired however have started to do more this last few days or so. I too went to MRI on Friday for a check up. My Hemoglobin and Platelets were more or less back to normal however my White Cell count had dropped. My Neutrophils were 3.53 the day I left Hospital 11 days ago however were only 0.79…[Read more]

Finn,

Thanks for the reply. I never thought of that, maybe it is something to do with the Melphalan. It does ease with painkillers however it’s always there, like a dull ache in my arm / shoulder all the time.

I’m due back at the Hospital on Friday so I’ll speak to them then about it.

Best Wishes

Scott

Hi Angela,

I got home last night. I spent a total of 10 days in Hospital (1 night after the Chemo – 11th Feb) and then was I treated as an outpatient until being admitted on the 16th Feb. I then spent a further 9 nights in Hospital until coming home yesterday. The first night I was in a private room but when admitted I went on to the ward. Bed…[Read more]

Richard,

Thanks for the reply, appreciate the support.

Cheers

Scott

Hi Angela,

I should have gone in today (10th Feb) but had a phone call from the Ward saying that because of lack of beds currently they want to treat me as an ‘outpatient’ for a few days. This is the same situation as your Graham by the sounds of it.

I’m in tomorrow all day for the Melphalan and Fluids and then home and then return on Wednesday…[Read more]