Myeloma

[Paul_Cabban]

We still are not getting myeloma patients using this forum. Are they not aware of it or do they not realise that they are included in this community.

[Jm954]

The charity Myeloma UK has such a great site, I imagine most will be there looking for information etc.

myeloma.org.uk/

Jackie

[Paul_Cabban in reply to Jm954]

Hopefully that is the case. The Facebook myeloma forum seems to attract more negative posts from patients who have concerns and are looking for advice . There needs to be more awareness of the Myeloma UK SITE.

[2003UK]

Good question Paul and myeloma patients would be really welcome and add so much to our community,

[batlady]

I have been diagnosed with myeloma. I have so much info to read and found your post by searching myeloma but didn't think under leukaemia. I have no idea how to talk or describe about it yet.

[Paul_Cabban]

Nice to have a fellow myeloma member here. It has been rather lonely. Have you looked at the Myeloma.UK website. It is specific for myeloma and regularly posts updates on treatments becoming available. They also run patient information days at different venues around the country but obviously cannot at the present time. These are for patients. relatives and carers and are very informative. I was privileged, and humbled. to speak at the London meeting last autumn on "A patient's experience"

I was diagnosed in 1999 when I was 49 and was treated as "watch and Wait" for 9 years before having a stem cell transplant. I have since had 2 other courses of chemo and then 5 years maintenance until last summer when I developed Chronic Lymphatic Leukaemia for which I had 6 cycles of treatment and I am now due for review with the haematology team. Blood test tomorrow.

I believe I have the text of an "My Journey" article that i wrote for the Leukaemia Care journal a little while ago and possibly the text of my talk at the InfoDay last year on my PC and if you send me your e mail I will send you copies.

My main message to anyone being diagnosed with Myeloma is stay positive. Treatments are improving all the time. There will be days when you don't feel like doing anything, so don't but there will be more days when you can get on and do whatever you feel like doing. Above all stay positive.

Paul Cabban