myelofibrosis

[chris]

Hi June

Noticed you have not visited the site for a while and wondered how you were? (Of course, if you are not logging on, you will not see this so I may also Private Message you!). A friend of a friend has been diagnosed with myelofibrosis and I wondered if you had found any support groups specifically for MF? Do you know if there is a list of Centres of Excellence for MF as there is for MDS? I know you are at Bournemouth under Dr Sally Killick and seem very pleased with your care there?

I wondered how your spleen was and if you were having any treatment now other than transfusions? You were going to consider a clinical trial, too I think?

Hope all is well
Best wishes

Chris

[janetstanford]

Hi June
how are you Chirs has has made me wonder where you and how you are last we heard was September time you had helped raise money for charity and had done really well
do hope we hear from you soon Janet

and chris there are a few more we have not heard from for a while john and delwyn spring to mind hope they are ok
also over last couple of weeks we have about 10 new members hope we hear from some if them soon

[Sheldon]

Happy new year to all
I have not had much to say, recently but I have seen most peaople questioning what their blood results should read. My consultant gave me a boocklet from "leukaemia & Lymphomia reasearch" entiteled "myelodisplastic Syndromes" (beating blood cancers), and on the back page of this is a table of typical values for blood test results. i includes space to put in your values for comparison. Check in your heamotology dept, order from the charity or download a copy from their website.
The "Leukaemia and lymphoma reasearch" are basing their booklet on the FAB system, and although there are several newer classification systems this does not alter what is considered a normal blood count. Please note blood count norms will differ between men and woman, children and diferent ethnic origens.

i appologise for bad spelling, never my strong point, and I don't have themotivation to trawl through a dictionary tonight. (Maybe spell check could be added to the forum for those of us who are spelling chalenged?)

Chat to you all soon
Sheldon

[janetstanford]

Hi Sheldon

happy new year to you hope you a dram or 2 by the fire

i quite agree with the blood count issue as i find it difficult to explain to others on the forum and as i know lots about the subject blood being my issue i think the booklet is a very good idea and your quite right about the amounts being different for men women ect
women i believe is 11.5-14 ish and men 14-18 on average think there will be a lot of requests for 1....
and the spelling yes at times i have that issue some times i end up with cross between text speak spelling of medical terms and blanks ?? so yes spell check

take care Janet