Hi
Am new to this forum - my name is Allison & after initially being diagnosed with ET but after 3 months of bone marrow biopsies & other tests was told this week that I have a rare form of cancer (1 of 900 in UK) . I have MDS/MPN - SF3B1 - CALR mutation & intermediate risk level. I have been referred to transplant team and very nervous about going through a transplant. Meanwhile I start next week on a course of Azacitidine I junctions which will be 7 days of daily injections each month ongoing unless I am suitable candidate for transplant. Does anyone have this overlap syndrome & any experience or advice on any if these treatments
Hi Allywoods and a very warm welcome to the Macmillan Community but so sorry to hear about your diagnosis.
I am Mike and I help out around our blood cancer groups.
Having been on my cancer journey for over 26 years (first diagnosed in 1999 at 43) with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) then Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot…. more so as I have had 2 Allogenic (donor) Stem Cell Transplants (June 2014 then Oct 2015)
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
MDS/MPN/ET/PV/myelofibrosis (MF)
…….. support groups.
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
