Update

[Simon96]

Hi All,

Thought it was about time I wrote with an update. Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so attempted a second transplant (HAPLO).

Pleased to report that on Day 120 I am feeling good in myself and relatively healthy despite having delayed and poor engraftment with my second transplant. Essentially I still have very low blood counts.

To encourage better counts we are going to try a stem cell boost. That is where I get more stem cells from my donor, like having another Day 0, but without the preceding chemotherapy. Fingers crossed!

I think my myelofibrosis is gone.

A bone marrow biopsy on Day 29 revealed the marrow was 95% empty, with only red and white cells present in the 5%, no platelets. Presumably the empty space used to be filled with fibrosis. The platelet count in my weekly blood tests has been slowly developing with a 1 or 2 increment each week. At Day 114 the count was 17.

Chimerism testing on Day 59 was 100% from donor origin. Also JAK2 burden was less than 1%.

So a mixed bag of news. Still feeling hopeful for a positive outcome.

Onwards and upwards! ...cheers, Simon

[piggie50]

Well done Simon, I hope everything continues to go well for you.

Judy

[fee13]

That's such good news! I think you've nailed it 😉

[mhos61]

Hi Simon, I’m so, so happy to read your post!

I’ve often thought about you and how things were working out, so to hear this.....I’m absolutely delighted for you. From what you say ‘a mixed bag of news’ nonetheless, it all sounds very encouraging.

The warmest wishes to you and your family. Look forward to your next update.

Mary 🙂🤗xx

[Tico]

Well done simon, lets hope things remain positive for you and they continue too. Sending your warmest wishes.tina🤗

[Mich10]

Yay!

Well done Simon!

So happy for you. Long may it continue 😊

[Hidden]

That's a very encouraging update Simon, thank you for letting us all know. I hope you continue to improve and the interventions bring about the best possible outcome! Take care, Christine

[JediReject]

Simon, , Fair play to you and truly WELL DONE for sticking in there and showing true grit. I know just how hard the process is and it's impact both physically and mentally. Also how it affects your loved ones watching on.

Im keeping everything crossed that your top up really pays dividends and those counts get a kick start. The platelets seem slow to pick up , even after 3.5 years mine were a tad under a 100 last visit and were roughly like yours when at your stage.

Great news about your chimerism and our 'old friend' MF doing a disappearing act.

Keep your positivity buddy.

Chris

[lizzziep]

Hope all goes well for you.

Lizzie

[babbittybumble]

Hello Simon, That is such nice news to hear .Had been wondering how you had been getting on. No MF amazing. Take care Bye Gill

[Wyebird]

Thank you for your up date. I had no idea how intense a stem cell transplant is.

I do hope all results are positive ones for you.

[MFBMT2011]

Nice to get an update from the horses mouth! Stay positive and keep winning. You have done really well so far, long may it continue. You and KT are improving NZs average.

Best wishes

Chris

[ELIZBEN]

Thats good news Simon. Keep us all up to date

J x

[Bluetop]

A tough time, but hopefully getting there now. Good luck and thanks for letting us know

[Panda2017]

Best wishes to you sounds encouraging!! Well done

[Helena303]

Hopeful for the outcome to be positive. I wish you my regards.

[socrates_8]

Hey Simon...

Wow! That is really interesting news knowing that that your donor is a haploid too... Thank you for providing your feedback.

Sounds quite promising, and I love your gritty attitude to remain positive, and believe that it is absolutely essential for all of us to follow your exemplar.

Please do keep us in the loop Simon

Thank you again and best wishes always...

Steve

(Sydney)

[harleydavidson]

So pleased for you.

Mel x

[Meatloaf9]

Good job. Keep on keeping on.

[pj1963]

I am so pleased to read all this, Simon. I’ve been wondering how you are and hope things continue to go well for you.

Best wishes

Paula

[BlushNoisette]

Wow! You're brave to go through all this. So glad that it's working. Great news. Very best wishes.