@ChrissyD thankyou for all the info and links. Much appreciated x
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Thank you @ChrissyD Actually my diagnosis is myelofibrosis so I am not quite sure how I have been added to this information about Chronic myelomonocytic leukaemia (CMML) but I wish you and the others well. Willow x
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Hi @Willow
So sorry. I must have seen your name on a thread and assumed it was regarding Chronic myelomonocytic leukaemia (CMML)!
As it happens, there is an online support meeting on myelofibrosis hosted by leukaemia Care on 23rd October if youâre interested
Link to register here
Best wishes
Chrissy
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Hi @ChrissyD Thank you so much for letting me know the details of this support group. That is very kind of you. Warm wishes Willow x
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Hi @ChrissyD just had the letter from my haematologist appointment in September appear in my chart. I am fuming with part of the wording the haematologist has written, he has used the words you denied drinking alcohol. This was when he was referring to the problem with my liver blood test. Iâm at a loss as to how to make them believe me. Hope you are okay. Lynda
Hi Lyndham , about 18 months ago I had a blood test which highlighted a raised enzyme level on my liver data. I was redirected to the GP for monitoring. Next test it was back to normal and has been okay since. Hope this helps. My liver and spleen are normal self tested, haemotologist never checks the size of these organs. Admittedly I have never had any abdominal discomfort so I think I am ok.
I am worried about my monocytes doubling to 430 but my haemotologist says itâs not a concern and booked me for my next consultation end of February 2026.
Best wishes to all Unclejack.
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Hi @Unclejack it is a gamma gt level that is causing the problem. I have had my liver and spleen examined several times by the haematologist and they have scanned it and it is still a normal size. The gamma gt level was high in February and has been tested several times since then and it is slowly going down, but still seems to be a cause for concern to the medical people. I cannot fault the care I have been given, just donât see why they seem to think it is linked to alcohol as I have never drunk alcohol. It looks like the care they give me is better than you are getting. Take care. Lynda
Hi @Lyndam
Iâm afraid this is yet another example of âdoctor-speakâ on their letters which I personally find very offensive!! If they ask you about smoking or drinking and you say you donât, they record it as âpatient denied smoking and drinking alcoholâ which to me carries an inference that they accused you and you denied it! Why can they not just say that you replied that you do not ever drink alcohol? I recently told my professor that I had been suffering with bouts of diarrhoea and that was recorded as âChristine complains ofâŚ..â which makes me sound like a moaning Minnie! I wasnât complaining, I was merely informing him in response to him asking me about my health!
So, try not to get too mad! Itâs how they are trained but Iâd really like to challenge them on this as itâs language which is widely used! 
Hopefully, they will explore other explanations now. 
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@Lyndam @ChrissyD morning all.
I must admit when I read the level of care some get I do feel envious. And honestly this forum is tremendous support especially Chrissy D and Erica. When I was diagnosed I was told very bluntly I was to old for a stem cell transplant and only palliative care was available. I asked about prognosis and was told 8 to 24 months! It is now nearly 4 years since the first symptoms and nearly 3 years since diagnosis. I still feel well despite the occasional bruising due to very low platelets. The neutropenia has disappeared neutrophils are in mid range. Monocytes have climbed and thatâs worrying me, but my other levels except for platelets are quite reasonable. I made a dramatic change to my diet and after that blood count improved except for those pesky platelets and monocytes. I am still avoiding any infections although my wife has been sneezing for over a month and canât shake off her cold. So basically 4 years on and if it wasnât for the blood tests wouldnât know I was ill. Just shows prognosis can be very hit and miss. As Monty Python says always look on the bright side of life. Stay positive if you can. Easy for me say this I am lucky to be far less affected than many others BUT that could change, I still panic when waiting for blood test results.
Best wishes to everyone Uncle Jack.
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@Lyndam @Unclejack @ChrissyD Hi all. Gosh how frustrating for you @Lyndam 
I bet it makes you feel like starting drinking alcohol yourself! @Unclejack Interesting you mention your liver enzymes, as my husbands latest routine blood test last week, has shown high ALP. Not sure if this is related to his Chronic myelomonocytic leukaemia (CMML) or not 
We have routine appt with his local haematologist next week, so Iâm sure it will be discussed then.
On another note @ChrissyD the diverticular webinar yesterday day was very informative 
Thanks again for flagging that up.
Happy weekend all 
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Thatâs exactly what I had. It settled very quickly and hasnât shown up again. Haemotologist put further tests in the hands of my GP and said it will settle and it did.
Best wishes unclejack.
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Thanks @Sisi .
I also attended that diverticular disease meeting -just in case it might be a cause of my issues. Very good informative meeting-though the possible scarier outcomes were a bit sobering. Have your husbandâs symptoms improved with some small dietary changes youâve made? I already eat a lot of fibre so cannot see how increasing it would help me!! But I donât think the diverticular diagnosis is a good fit for me anyway. Just attended the webinar in case! 
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@Unclejack Oh thank you so much for your reply, thatâs very interesting it was the same. Glad it settled down for you. Thanks again. Best wishes to you
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Also apologies to @duncan !
Iâve seen your well-thought out and wise posts and assumed you had Chronic myelomonocytic leukaemia (CMML) and now Iâve looked more closely, I see you havenât. 
So Iâm sorry if you were pinged unnecessarily.
All best wishes to you.
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Oh no worries at all @ChrissyD, thank you for sharing such helpful and interesting info about Chronic myelomonocytic leukaemia (CMML). I try to do similarly regarding Polycythaemia vera (PV) and other Myeloproliferative neoplasms (MPN) and my experiences. Share and share alike, I say!
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@ChrissyD @Logsie @Lyndam @Unclejack Hi all. Hope everyone is doing ok & youâve got sunshine today? 
Just a little update⌠My husband had routine appt with local haematologist today. All good. His Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) seems to be behaving itself 
Recent blood test all looked stable. And we had the results of the gene panel that they did with BMB in August. Interestingly, one of the gene mutations seems to have gone but he seems to have gained another one! Consultant wasnât concerned, said this was very common. Heâs happy to continue with active monitoring, see him again in 3 months time.
We mentioned the high liver enzyme reading in recent bloods & he didnât seem too concerned. Said it might be medications related? ( heâs had recent statin increase ) or gallstones / bile related. Advised us to go & chat with the GP.
So overall, a good consultation. Feeing very grateful for our NHS.
Take care all & best wishes
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Hi @Sisi and all.
Great to hear all stable on the Chronic myelomonocytic leukaemia (CMML) front and hope your GP can help on the liver enzyme front. I hadnât realised mutations could come and go but Iâm sure itâs good news to see them disappear!
My next check up is in November and it will be interesting to see whatâs happened to my blood counts after 7 months of all this digestive system flare up!
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@ChrissyD Yes, thank you I hadnât realised mutations could come & go either. Interesting! Best wishes for your next Heamotology appointment. Hope all goes well. Take care
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Hi @Sisi and hello to all of you! Thatâs great about your hubbyâs results. Particularly the mutations! May I ask what mutation has disappeared and been replaced with another? I never knew this could happen and itâs reassuring that the consultant wasnât concerned. Iâm so pleased for you both that the results were so positive and stable. Long may that continue for us all! Take care x
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Hello @Logsie Thank you for your lovely message 
And yes, interesting with the mutations. Consultant said the gene changes can just be part of the whole âevolution of the diseaseâ, as it changes. I think the CBL one has lessened so much so, that itâs not really there.Which is why he said it had gone but maybe it hasnât really! 
Just isnât very prominent anymore. Quite tricky to fully understand it all! And he now has EZH2. But wasnât concerned about it.
Hope all good with you & your husband? Best wishes to you both 
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