Another dry tap

[Simon96]

Hi All,

Visited my haematologist to get the results of a recent BMB. It has been 20 years since my last one. Had a BMB in 96 at diagnosis time and another in 98. Pretty much the same result, dry tap with no outstanding features. The investigation was done under a microscope. In my case, I suspect the main things they were looking for were signs of leukaemia, which was not mentioned so happy with that.

Asked about high risk mutations such as ASXL1 and TET2. They have not been tested for.

Haemoglobin level was steady. Dropping the daily 1gm of HU. Continuing with daily aspirin.

My local transplant unit has commenced a search to see if there is a suitable unrelated donor for me.

The registrar who performed my BMB took some time to show me the samples, which I most appreciated. She had taken an extra trephine biopsy as the aspiration was not good. She did get fluid from my hip and had made up a slide which she showed me. It was essentially clear apart from a large blob about the size of my small finger nail in the corner.

My past thoughts of what 'dry tap' means have been incorrect and I need to investigate that further. I was pleased to see some fluid as I had assumed that my hip contained solid fibre and therefore couldn't see how a transplant could work for me.

I find it interesting how resilient a body can be. A couple of weeks ago I had a sebaceous cyst, a 29mm diameter sphere, excised from the nape of my neck. The incision has healed up nicely despite of my lousy bone marrow.

I presume my spleen has done a good job of looking after my health for the past 20+ years. Like many, I did wonder how long I had had a MPN when diagnosed, especially considering the size of my spleen and state of my marrow back then.

Best wishes, Simon (PMF)

[JediReject]

Hi Simon, WOW, I find your story rather incredible having been diagnosed PMF in 2006 resulting in SCT Sept 15. It's hard to believe you have managed to go on so long esp with your test results or maybe lack of them.

What I would like to ask is what's changed to prompt the search for a MUD and what meds have you been on of late ?

Also you're bang on about human resilience as I've experienced just that and it's amazing how your body heals , often quite quickly against the odds.

Keep us posted of your next move.

Cheers -Chris

[Simon96 in reply to JediReject]

Hi Chris, the search for a MUD has been triggered by a rapid drop in haemoglobin level this year and also a drop in weight / condition. I had been taking 1g of hydroxycarbamide (hydrea) daily and aspirin daily for a very long time. Changing to aspirin only. Will be interesting to see how that effects my counts. Cheers, Simon

[Wyebird]

Hope you soon get sct.

[Simon96 in reply to Wyebird]

Thanks