I was extremely shocked to see the page dedicated to CMML. I appreciate that it doesn't quite fit scientifically with MDS but where does that leave me now?
Does that mean that this site is no longer relevant to me?
Does it affect our Specialist Nurse at Kings?
Does that affect our eligibility to go to patient forum meetings, will they still cover CMML?
Does CMML stand on its own? Is instead of being a type of MDS it stands alone at the same level as MDS?
I went and looked at the Bloodwise web site, I couldn't even find CMML on it, maybe I was in the wrong place but I couldn't even find a search box.
I was feeling very alone when I found this site, it's been a tower of strength to me, and now I feel alone again. Didn't see that one coming!
New MDS patient handbook and CMML
Moderator: Steering Committee
-
- Posts: 75
- Joined: 04 Mar 2013 13:01
- Location: South East England
- Contact:
New MDS patient handbook and CMML
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
-
- Posts: 256
- Joined: 20 Nov 2008 14:05
- Contact:
Re: New MDS patient handbook and CMML
Dear Molly,
so sorry you felt the new booklet was not covering CMML enough.
Let me reassure that we still cover CMML and do not intend to drop that section at all.
We still have the CMML folder on this forum - and actively encourage people to post on there.
Chris Dugmore (who has CMML) is one of our Committee Members and is fully dedicated to the work with us.
We are going to update the website very shortly - and make sure that we provide more links to CMML information.
Leukaemia Care is another wonderful organisation that dedicates a lot of information to CMML:
http://www.leukaemiacare.org.uk/chronic ... -leukaemia
Probably easier to use that link - and we will update our page with it as well - as it is very comprehensive.
CMML is a disease that historically has hovered between MDS and MPN - so scientific opinions change all the time.
No matter what happens - you are still very much part of this community and we and everyone else will continue to support you and your husband.
The vast majority of the issues with MDS are the same as CMML - so all the website applies to you.
King's nurses deal with CMML all the time - no change at all.
Support group meetings are open to CMML of course.
so sorry you felt the new booklet was not covering CMML enough.
Let me reassure that we still cover CMML and do not intend to drop that section at all.
We still have the CMML folder on this forum - and actively encourage people to post on there.
Chris Dugmore (who has CMML) is one of our Committee Members and is fully dedicated to the work with us.
We are going to update the website very shortly - and make sure that we provide more links to CMML information.
Leukaemia Care is another wonderful organisation that dedicates a lot of information to CMML:
http://www.leukaemiacare.org.uk/chronic ... -leukaemia
Probably easier to use that link - and we will update our page with it as well - as it is very comprehensive.
CMML is a disease that historically has hovered between MDS and MPN - so scientific opinions change all the time.
No matter what happens - you are still very much part of this community and we and everyone else will continue to support you and your husband.
The vast majority of the issues with MDS are the same as CMML - so all the website applies to you.
King's nurses deal with CMML all the time - no change at all.
Support group meetings are open to CMML of course.
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
-
- Posts: 75
- Joined: 04 Mar 2013 13:01
- Location: South East England
- Contact:
Re: New MDS patient handbook and CMML
Thank you Sophie for making it clearer and the link. . We are going to Kings soon and will have a chat with them about it too.
Regards
Molly
Regards
Molly
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
Who is online
Users browsing this forum: No registered users and 24 guests