Any useful information from the cmml on-line meeting?

General chat
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I missed the online meeting last Thursday as I was at a Christian festival all day and evening.

Was wondering if there were any nuggets of information which came out about Chronic myelomonocytic leukaemia ('CMML')?

Off for my regular blood test tomorrow and hoping everything is still stable as I’m off to Spain later in the month to the camino del norte.

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Morning @Hughbie

Is this the meeting Leukaemia Care Chronic myelomonocytic leukaemia ('CMML') Support Group meeting on Thursday 30th July?

My research tells me it was a live, peer-to-peer Zoom support session rather than a webinar, so it won’t have been recorded I suspect. Sorry I don’t know anything about it hopefully other members might??

If you wanted to check if any notes or resources were shared, you could contact the host or support team directly:

⁠nick.york@leukaemiacare.org.uk⁠

support@leukaemiacare.org.uk⁠

They also have a dedicated Chronic myelomonocytic leukaemia ('CMML') support page on the Leukaemia Care website if you want to look out for the next quarterly meeting.

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Hi @Hughbie and thanks @Jules for additional info.

I co-host these meetings with Nick York. Nick sometimes send summaries of what was discussed to attendees and those who registered-but not always as he’s quite busy hosting a lot of other Leukaemia care meetings.

There were 17 attendees, including myself, Nick and Emily, a Leukaemia Care Navigator from the South West, observing meetings to get an understanding of particular issues from people with certain types of Leukaemia.

Most of the attendees spoke about their experiences of their diagnoses and symptoms of Chronic myelomonocytic leukaemia ('CMML')- except for a couple who left early.

Themes were:

  • Fatigue and how debilitating it is and how to manage
  • NHS/Hospital access to patient records - a mixed experience with some hospitals having very accessible patient info and others still relying on sending paper letters from consultant!
  • a person with experience of a stem cell transplant 2 years ago - still dealing with Graft-versus-host-disease ('GVHD') but overall glad to have been given the transplant
  • a person on active monitoring and not really having any symptoms - tracked own blood counts using a spreadsheet
  • concerns about the limited range of treatments available for Chronic myelomonocytic leukaemia ('CMML')
  • possibility of getting an additional opinion at a specialist hospital
  • many attendees on active monitoring
  • discussion on frequency of hospital appointments -ranged from 3 monthly to 6 monthly

Hope your hospital appointment goes well and that you enjoy your Spanish holiday? Are you walking the route? If so, well done! Seems very long!

Recent diagnosis CMML
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Thank you that’s a fantastic reply

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Thankyou @ChrissyD what a fantastic summary. I was registered but couldn’t attend as I was in transit.

I’m not doing the whole camino because I’m walking with two people still working. The full thing could take 6 weeks. Really looking forward to it though!

Thanks again

Also thanks @Jules for your reply.

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