Recent diagnosis CMML

@ChrissyD @Erica @Sisi @Sisi

Hallo all.

Has the press release about the Acute myeloid leukaemia (AML) medication repurposed for Chronic myelomonocytic leukaemia (CMML) been released by blood cancer UK yet.

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@Unclejack there are a couple of BCUK social media posts about this today. Makes such interesting reading. Best wishes

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Hi Jude’s.

Yes it sounds very exciting. I believe the stage 2 trials have been very successful. Here’s hoping. Would be nice at Christmas to get some positive news.

Best wishes Unclejack.

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Hello @Unclejack :slightly_smiling_face: I’m not sure but like @judesadventures has mentioned, I also saw Blood Cancer UK on Facebook post about it today. Very encouraging news for us all! Hope all is good with you. Best wishes :face_blowing_a_kiss:

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@Sisi

Hi Sisi, o.k. currently thanks, birthday boxing day (75). I think old age is taking hold!! Hope you have a good Christmas. Would be great if Doctor Wiseman worked a miracle for us all.

Best wishes and merry Christmas Uncle Jack.

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@Unclejack Lovely to hear you. Oooh a festive birthday for you! Thank you for your wishes :slightly_smiling_face:Wishing you & your loved ones a wonderful Christmas time & Happy Early Birthday from me :partying_face: And yes, here’s to Dan Wiseman & all his team :slightly_smiling_face: xx

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Hi @Unclejack @Sisi @Erica @judesadventures

The BCUK sent me a press release about the AMMO trial which was embargoed until yesterday when Dan Wiseman was presenting the findings of his trial to the American Society of Haematology (ASH) conference. It wasn’t a repurposed Acute myeloid leukaemia (AML) drug but a drug already used in the US for treating Myelodysplastic syndrome (MDS) and Chronic myelomonocytic leukaemia (CMML) (decitabine) which has been formulated with another drug so that it can be taken orally, instead of as under-the-skin injections. Not sure where the news was released to, apart from Facebook, but I’ll post a link as soon as I get notification.

Whilst the trial has shown some benefit, it still has to be submitted by the pharma company to be approved for use in the UK and that, sadly, isn’t always a given. Another successful drug, Luspatercept, which is licensed in the US and Europe for reducing need for blood transfusions in certain Myelodysplastic syndrome (MDS) patients, has not even been submitted for UK approval to NICE by the pharma company -probably because they couldn’t make enough profit from it?! :face_with_symbols_on_mouth: So we’ll have to wait and see what happens!

You’ve caught me up @Unclejack on Boxing Day! Hope your 75th birthday goes well.

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Hi @Sisi @Erica @CathyP @Logsie @Lyndam @Unclejack @judesadventures and all with Chronic myelomonocytic leukaemia (CMML)
Here is the link to the press release about the AMMO trial

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@ChrissyD Thank you so much for forwarding :+1: :slightly_smiling_face::face_blowing_a_kiss:

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@ChrissyD thank you for this, it gives us all hope for the future. Hope you and all other Chronic myelomonocytic leukaemia (CMML) sufferers are okay.

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@ChrissyD thanks for sharing this. All very encouraging xx

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Hi @Sisi @Erica @Lyndam @Logsie @Unclejack @CathyP
Just to wish you all a happy time this week and a healthy 2026 for us all and our loved ones.
Take care all
Chrissy
Xx

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@ChrissyD the same to you all, Hope you all have a fantastic Christmas and a healthy new year x

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@ChrissyD

A merry Christmas and a happy and healthy new year to you and all cancer sufferers.

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@ChrissyD Thankyou for your lovely message :smiling_face_with_three_hearts: A very Merry Christmas to you & your loved ones & everyone here. I hope everyone can get some relaxation time in & it’s not too crazy :zany_face: Thankyou all for being here :hugs: You’ve all been such a support this year. Here’s to the next year being a happy & healthy one as possible. Much love :face_blowing_a_kiss: :two_hearts:

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Dear All yes a very peaceful, as heathy as possible time to you all.

Keep posting in 2026 !!!

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Hi @Sisi @Erica @Lyndam @ChrissyD and all. Hope you all had a peaceful and happy Christmas. I have had a interesting and painful Christmas period. Luckily not a Chronic myelomonocytic leukaemia (CMML) problem. Osteoarthritis in Right knee suddenly literally exploded! Pain excruciating. X rays due next Saturday then a possible steroid injections if haematology agree. My G.P. specialises in arthritis and will discuss this treatment with my consultant. Also for the second winter have developed nasty chilblailains in fingers. Had a chat with NHS 111 who were excellent and made me an appointment with local walk in centre who confirmed chilblains. The centre was packed but my appointment was on time and again they were very good. Basically keep hands warm and dry. Using a little sudocrem which works well. I am always worried about infections due to Chronic myelomonocytic leukaemia (CMML) but luckily not happened yet. I noticed in the walk in centre all the patients were young and no one was coughing or sneezing which surprised me. Nearly reached 4 th anniversary of Chronic myelomonocytic leukaemia (CMML) ( next February) and although monocytes have climbed to 400 and platelets back down to 50 I feel well except for the arthritis pain etc. My wife has another minor cold and again I haven’t caught it I seem to be impervious to colds. All my other blood test levels are within normal range. Well all of you hopefully are well , and perhaps Dr.Dans research will soon be made available to all who need it and we can have a brighter future. Have a great new year. Best wishes uncle Jack.

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@Unclejack Oh so sorry to hear you’ve been poorly. I hope things have been easier for you from a pain point of view & you managed to have a Happy Birthday? We had a relaxing Christmas thanks. I also find this time of year a strange one. Christmas seems to vanish in a blink of a eye & yet I’m wondering & struggling what day of the week it is! :zany_face: My husband is still having more investigations to do with his liver. They’ve identified he has mild fatty liver & possibly an autoimmune condition. We are due to see liver specialist at the end of Jan. He’s had so many diagnostic checks recently, it’s tricky to keep up with them all!!! Fortunately he’s been feeling relatively well. So that’s something to be grateful for. Hes also mildly anaemic which I believe is relatively common with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)). We’re due to have routine check up with haematology dept end of Feb. I think his monocytes are around 3.5 at the moment. Platelets ok. Good to hear from you. Here’s hoping 2026 is kind to us all. Best wishes to you :face_blowing_a_kiss:

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Oh @Unclejack that does sound painful you and @Sisi show so clearly what complex, unique beings we are.

Yes, a very happy birthday @Unclejack. Everything happens at once..

Yes, keep those hands warm and dry.

And as @Sisi says ā€˜Here’s hoping 2026 is kind to us all’

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@Unclejack sorry to hear you have not been to good again. Wishing you a much better new year. I consider myself lucky that I am past the 4 year mark and bloods are reasonably stable. I’m due back at haematology next month, so hopefully my bloods will be okay. Like you I hope Dr Dan’s research brings hope to all Chronic myelomonocytic leukaemia (CMML) sufferers. Take care. Lynda

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