Update

[Simon96]

Hi All, had another haematology visit this week, three months have flown by. At my last visit my haemoglobin level was 88g/L and now it is 79. A quicker drop than I was expecting. Was offered a blood transfusion. Figured I would avoid transfusions until the next step is decided, which is probably going down the SCT route. BMB next week to see what is happening in the marrow and follow up appointment in a month. Continuing with the daily 1g HU and aspirin.

Would have been nice if I could have packaged up the offer of a blood transfusion and sent it to someone who wants one. Unfortunately that was not an option.

Cheers, Simon

[MPort]

Hi Simon,

Sorry to hear this. I wonder why you are still on HU? As in it is usually used to lower counts and yours are now to low? Good luck with BMB next week.

Mairead

[Simon96 in reply to MPort]

Hi Mairead, that's a very good question. Will ask next visit ...thanks, Simon

[Wyebird]

Oh Simon are you able to cope with Hb reading of 79? I’m awful If below 11.

I wish you well

[Simon96 in reply to Wyebird]

Hi Wyebird, I have been really surprised at how well I am if I do very little. No issues with breathing or anything like that. It is like my body is protecting itself by reducing my desire to do much, which in the long term is not good. Sorry to read of your breathlessness earlier. I hope that is improving. Thanks for your good wishes, cheers Simon

[Paul123456]

Hi Simon

Thanks for the update. I assume you are following Steve’s CALR tread from yesterday? And you don’t have CALR? Have you been tested for some of the more aggressive mutations such as ASLX1 which Steve mentioned? If you are considering a SCT it might be worth discussing this with your Hem since influences timing (please see the video I posted on Steve’s thread by Dr Jeanne Palmer, the SCT Specialist at Mayo).

Hope your BMB goes well next week.

Best Paul

[Simon96 in reply to Paul123456]

Hi Paul, I have been following Steve's CALR thread. I am JAK2+ so doubt my haem would have tested for CALR. You can have mutations in both by the way. While it would be interesting to know what various mutations I have and to track them over time, my issues with cachexia and anaemia are sufficient that I would tend to go towards transplant earlier rather than later regardless of my mutation status. Thanks for all the various references that you post, I do enjoy them.

Hope your interferon treatment is going well. It was a popular topic of discussion way back in 96 when I was diagnosed. Seems to have been plenty of people who have taken it so thought there would be more clinical trial information available.

Best to you also, Simon

[GuyMorgan01]

Mine level moves around quite a bit . 6 monthly checks. 18 months ago 93 then 101 last one 90. Next one in July so we will see what Lotto delivers this time. Hopefully yours will pick up a bit next time.

[Simon96 in reply to GuyMorgan01]

Thanks for the info. Hope you get another bounce up by July!

[MFBMT2011]

I was bouncing around the 8’s in my 10 month period between diagnosis and transplant. Was told I would need transfusions if I went below 8 but I didn’t. Post/during transplant I had 30 transfusions, sometimes three at a time, with 8 being the trigger, until Sarah (my donor) took over

Chris

[Simon96 in reply to MFBMT2011]

Thanks for the info Chris. Also thanks for your ongoing support of this forum. The photo you recently posted looked great.