Hi all, I’m new here just seeking a bit of support and advice. I’ll give you a brief summary my dad was diagnosed with CMML (leukaemia) in late 2018 with the AXL gene. He had a successful bone marrow transplant in 2019 along with 7 months of chemotherapy. Unfortunately in august last year he was diagnosed with secondary MPN and hasn’t been the same since mentally and physically. The treatment is ongoing chemotherapy to suppress the disease.
has anyone else been diagnosed with secondary MPN? I’m just scared of losing my dad and I want to help him and my mum cos I know they are really struggling with this.
thanks for reading sending love and hugs x
Hi Snowy 1410 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your dad.
I am Mike and I help out around our various Blood Cancer groups as well as our Stem Cell Transplant (SCT) Group.
I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
I have been helping on the community and another support platform for over 5 years and it’s actually not that unusual for folks to develop others cancer especially when they have been treated for a blood cancer and especially SCT.
I have had two Allo SCTs (my first failed) and although my type is incurable it has been put to sleep. I have been told that there is a high chance of other cancers. My type of cancer required a significant amount of skin treatments (hit my community name to see my story) so I am very high up the ‘at risk’ list for skin cancer as well as other blood disorders.
This is a hard time for all the family. Lets look for any of the group members to pick up on your post with any first hand experience.
When it comes to the practical and emotional challenges of supporting someone you may also benefit from joining our general Family and friends and Supporting someone with incurable cancer groups where you will connect with others navigating the same challenges.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Always around to help more or just to chat
