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Hi all, my Dad was diagnosed with Myelofibrosis 8 years ago to the day. He’s survived it for a while but he’s about to go into hospital for a while for chemo radiation and a stem cell transplant. I’ve spent the last 8 years not asking questions and tucking away my feelings but it is starting to get to me as he’s my best friend. The doner will be my brother who is only a half match. Just wondering if anyone else has any experience with half match doners and what the experience was like? Also I’ve just started a new job, so how did you all cope with a loved one going into treatment while balancing work?

Thanks and god bless you all,

Thehighlander over 1 year ago

Hi nat_far and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to read about your dad. I am Mike and I help out around our various Blood Cancer groups.

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 understand the Stem Cell Transplant rollercoaster even more so as I have had two Allo (donor) SCTs (June 2015 then Oct 2015)

We actually have a dedicated Stem cell transplant support group where you can connect with others who have went through SCT and family who are supporting family.

Do join the group and put up a post - you could copy and paste the text from this post.

I will keep an eye open for you in the group.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

po18guy over 1 year ago

Four months later, but I just now saw your concern. Sorry about that. In 2015, I had a haploidentical (half-match) stem cell transplant. The good is that one is pretty much guaranteed engraftment of the stem cells, since the 50% of cells from the common parent is a perfect match. This is quite an advantage over non-related donor transplants, as far as successful engraftment of the cells, and regarding post-transplant difficulties. Early on, I developed acute Graft-versus-Host Disease (GvHD), and it became chronic. In my case, it seemed to be mostly skin and facia-related. It was indeed a problem finding a therapy that would effectively combat it. I went through 7 regimens to combat it, including two clinical trials. We finally found a decent programme and life has been reasonably normal.

Since our DNA is involved, each transplant will be different, and the level and type of GvHD will be different. Yet, with perseverance, a decent solution can be found. I certainly hope and pray that all goes well.

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One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

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