My youngest son who lives in Canada with his wife and two young children was diagnosed just before Christmas with MDS & MPN Overlap.
I know it’s early days. I’ve been trying to find out more about these two rare blood cancers but it’s difficult. It seems that the average age of onset is 71 yrs. He is 41. During the dreadful tests/diagnosis week before Christmas there was mention of possible Interferon treatment. And possible stem cell transplant depending on how things might progress. Transition to Leukaemia is a possibility apparently.
It feels like such an alien world - blood cancer. My partner and I have each had cancer in the past so understand the fear and shock. But this feels even more dreadful.
Im not sure what Im hoping for here. I wonder if anyone else has come across this rare overlap of two cancers? Most of the information I’ve gleaned is US based, especially from the annual ASH conferences.
thanks.
Hi JC111 and a very warm welcome to the Online Community although I am so sorry to hear about your sons diagnosis. I have lived and been treaded for a rare type of blood cancers (CTCL) for over 22 years now so be assured there are lots of tools in the treatment box but this indeed is such a challenging and stressful time for all the family but I do hope you will find lots of support and comfort as you connect in with the Online Community.
The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services so can I recommend that in the first instant you consider joining our supportive MDS/MPN/ET/PV/myelofibrosis (MF) group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions, get support and talk with others who are supporting family and friends on their journey.
If you'd like to connect in with a group, you do need to join the group. Click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, emotional support or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
Always around if you need further help in navigating the community.
All the very best ((hugs))
