Recent CMML research issues

Chronic myelomonocytic leukaemia (CMML) is a rare type of blood cancer. In CMML there are too many monocytes in the blood. Monocytes are a type of white blood cell.

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chris
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Recent CMML research issues

Post by chris » 23 Jun 2020 20:48

Dear CMML patients and their supporters

I've been asked by Sophie Wintrich to post this for your information.

A recent article in the American Society of Hematology (ASH) Clinical News has identified how, for too many years and despite its unique clinical and biological characteristics, CMML (Chronic Myelomonocytic Leukaemia) has been treated as a form of myelodysplastic syndrome (MDS). The contributors highlight the woeful lack of CMML-specific treatments and research. They call for improved international disease-specific response criteria to be agreed which can be used in future trials and research involving CMML patients.

Please check out link below

https://www.ashclinicalnews.org/chronic ... attention/

Best wishes

Chris Dugmore
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: Recent CMML research issues

Post by Graham » 15 Jul 2020 11:50

Hi Chris, Hope you are well and getting through the lock down okay. Glad you posted the article about the uniqueness of CMML and the historical way it has been looked at, and the future prospects, going forward.
I have been trying to chase up what might happen to the EUMDS Registry trials that are going on, when we finally pull the plug on the EU.
It appears many other Medical Research Charities are in the same boat and no answers to any questions are forthcoming. Its obvious to me the answer is in the political mix, namely, the on going negotiations between UK Gov and EU.
As, its still in the Political Arena I tried to get an answer from the All Parliamentary Group on blood Cancers to no avail. However I got a good response from Blood Cancer UK, who gave me some good links to look at, even the EUMDS Registry data base, based here in York University couldn't help.
My only hope is my local MP who I have asked twice the question without an answer, so I am hoping my third time, repeating the question will draw a response.
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: Recent CMML research issues

Post by chris » 16 Jul 2020 09:35

Hi Graham
Yes all well here thanks. Plenty of fruit and veg on the allotment and all's well with the world!
Watch out for an invitation to an MDS Zoom meeting on CMML on 27th July. Led by Dr Dan Wiseman from Christie Hospital who specialises in CMML. Should be really interesting so spread the word! Hope I'll see you there.

Yes. Who knows what will happen to research projects currently undertaken in collaboration with other EU countries? In my opinion, it would be crazy to go it alone as we would lose so much shared expertise but my fear is that the government is quite happy to throw the baby out with the bath water on many issues as they do not want to appear to be linked with Europe in any shape or form. As with the PPE debacle! As with so many issues, the likely truth is they still haven't worked out the fine details so I don't imagine anybody would be able to give you a definite answer! Maybe the way it is funded will protect EU MDS registry? Not sure about how that is done at the moment? My hope is that the medics will put pressure on to retain collaborative research projects with the EU after January 2021.
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: Recent CMML research issues

Post by Graham » 19 Jul 2020 20:21

Chris, Can't find any details regards this online event on the 27th by Dr Wiseman any clues where I should be looking. Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Recent CMML research issues

Post by chris » 19 Jul 2020 22:09

Hi Graham

You're right. It hasn't been posted on the Events Calendar on the website yet. I think the invitation will go out soon to all MDS members. Keep checking your e-mail and also check your Junk/Spam mail as one of my Essex members found his invitation in there!

To all other CMML patients, same advice.I'll remind Sophie and Caroline, our Office manager and let you know.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
MDSUK
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Re: Recent CMML research issues

Post by MDSUK » 31 Jul 2023 15:17

Dear CMML patients and caregivers

Just to let you know that the AMMO trial (Decitabine and ASTX727) is still up and running and new centres are still being opened. If you are interested in participating in this trial, please read this article on our website.

https://mdspatientsupport.org.uk/ammo-trial/

With best wishes

Chris Dugmore (CMML patient)
MDS UK Patient Support Team
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk
Please do not send PM messages to this account as it is not monitored.
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