New CMML information

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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New CMML information

Post by chris » 23 Jun 2021 13:41

Hello All
Pleased to announce updated information and links to our CMML pages on the website.
Useful information and links to helpful booklets and other sources of information.
Watch out for some videos coming soon with Dr Dan Wiseman (of The Christie Hospital, Manchester) who is very knowledgeable about CMML.
https://mdspatientsupport.org.uk/what-i ... leukaemia/

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.
chris
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Re: New CMML information

Post by chris » 29 Jun 2021 14:15

Hello All

Great news. The Dan Wiseman interview is now on the website, same link as before
https://mdspatientsupport.org.uk/what-i ... leukaemia/

Lots of useful information about prospective new treatments.

So sorry I missed the Cornwall group Zoom on Monday as I understand there were 3 ladies who have been diagnosed with CMML and are on “watch and wait”. This is quite unprecedented with such a rare disease and I hope you all took comfort from meeting others? If any of them would like to post on here or private message me, maybe we can support each other?

Take care

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.
Graham
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Re: New CMML information

Post by Graham » 30 Jun 2021 16:06

Hi Chris ,Bronwen & all the quiet CMML Sufferers, Having seen concerns about efficacy and blood cancer patients I sent the below to my MP and received the posted reply of which we all probably knew anyway.
“To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) assess the effectiveness of covid-19 vaccines for people with blood cancer and (b) establish a testing programme to clarify whether people with blood canceHr retain compromised immune systems against covid-19 even after vaccination.

Answer:

All of the currently authorised COVID-19 vaccines are suitable for use in immunocompromised individuals, including those with blood cancer. The clinical studies for these vaccines excluded immunocompromised subjects and therefore no data is currently available regarding the use of these vaccines when used at the same time as immunosuppressant medicines or the immune response in those on such medications. However, data is being collected on use of the vaccines in immunocompromised subjects and the Medicines and Healthcare products Regulatory Agency will assess this data as soon as it become available. Public Health England is also monitoring the impact of COVID-19 vaccines on a broad range of outcomes including symptomatic disease, infection and hospitalisations as set out in the vaccine surveillance strategy, including protection in different clinical risk groups.”

I hope this is useful, but please do let me know if I can be of further assistance.

Kind regards,

Julian

On a more personal note I sent the below, on email to MDS central alongside the the question to my MP and his reply.
II am fortunate as part of my condition CMML I went to see a Immunologist for something entirely different I have suffered with for 10 or more years which Professor Bowen instigated . I took the opportunity to ask if I could be tested for efficacy having had the vaccination and the Immunologist agreed to do this, still await the results.
Also, they diagnosed the problem after 10 years of GP's trying, as being Chilblain Lupus (awaiting blood results to confirm). Quick look on the internet shows it has link with CMML.
None of this would have happened had I not obtain all the blood tests result the hospital held dating back to 1997, put them all on a spread sheet so full history is easily visible for me and doctors, transferred my care to a Centre of Excellence for blood , where they recategorized my CMML diagnosis's, and suspect I may have had CMML 8 years, prior to diagnosis, looking at my spread sheet , probably confirmed now by new rare disease of chilblain Lupus.

Chris please keep up with the updates very interesting. How's the allotment, I am all planted up and have harvested all the garlic and now on WATCH and WAIT seems to be the story of my life now.
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: New CMML information

Post by chris » 30 Jun 2021 20:38

Hi Graham (plus Bronwen if you’re reading this!)

Good for you for writing to your MP -even though the reply is not, as you say, particularly helpful. The first 2 sentences do not address your question at all! The 3rd sentence does not give any details of where that research is taking place nor when the results will be available. (So we just keep shielding and waiting, do we?!).The final sentence again gives no timescale nor does it specifically address the issues for blood cancer patients. I would not want the real life ONS study to only take place if I (or any of us) caught Covid and/or was hospitalised!

On your personal updates, great news on your potential explanation re chilblain lupus!! Never heard of that but will now have a quick shufti around the interweb!! Goes to show how beneficial it has been for you to see Prof Bowen. Sophie at MDS HQ will be delighted with that outcome. If it is that, is there any effective treatment?

Also wait with baited breath for the results of your vaccine effectiveness tests. Did they test both antibodies and T cells? I know of somebody with MDS who paid to have these tests done privately and the results were not very encouraging, nor very detailed so he feels no further forward nor very reassured.

Very pleased to have got a higher profile for CMML on the website at last!! Dan Wiseman is very knowledgeable. Have you seen my 5 minutes of fame yet?! 😂😂

Our garlic went a bit “weird” this year with all the cloves semi-opened. I think all the rain might have been the cause. Yes. We are on watch and wait at the allotment. Everything is planted and all the rain means we haven’t had to do much watering -for a change! Tomorrow will hopefully be picking the first courgettes plus asparagus, rhubarb, cherries and gooseberries! So it’s all good !

You ought to join us for a Zoom meeting! I wonder if we could have one on CMML and invite Dan Wiseman again?

If anybody else is reading this, let me know if you’d like to come to such a meeting?

Best wishes to all. Keep safe and enjoy the warmer weather.

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.
Graham
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Joined: 22 Oct 2019 11:14
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Re: New CMML information

Post by Graham » 01 Jul 2021 17:39

Hi Chris , Bronwen and suffering in silence CMML patients.

I spoke to Dr Khan from St James Hospital Leeds part of Professor Bowens team. Most of my blood results are in and the Chilblain Lupus is the correct diagnoses, that's settled at last, and is part of my CMML. My monocytes have fallen back into the acceptable scale also my platelets dropped 80 but still too high so all in all nothing much has change. As for myself I feel much the same as the day I was diagnosed, other than knowing my spleen is enlarged, I have chilblain lupus and abnormal blood counts all of which are part of my CMML, I remain positive going forward.

Chris I have seen you on the video, please keep up the good work you do, it is appreciated and good to know we have a CMML patient in the mix.

Just skimmed through the recent MDS bulletin and saw the article about getting in touch with Professor Bowen what I would say is don't be frightened to get another opinion you will have more peace of mind whatever is said.

Dr Khan advised me that tests show I do have antibodies as result of vaccination, if you don't ask you may never get to know.

Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: New CMML information

Post by chris » 02 Jul 2021 09:23

Hi Graham and other CMML folk

So glad you now have a definitive diagnosis. I’d never heard of chilblain lupus nor its link with CMML. You learn something every day!! As you say, you’d probably never have known about this if you had not seen Prof Bowen who has such a wealth of experience. So you’ll have to try to keep your foot nice and warm in winter!! Heated wellies?!😂
Also good to hear you have some antibodies but my next question would be: what level and how it compares with normal healthy people? Did they do a T-cell test too? Most of us, unless we go to a specialist centre, do not have access to these specialist tests for vaccine efficacy. Now I’m having to get my blood tests done locally, I can’t get it done. I was quite annoyed that the SOAP study at Kings did not give participants their individual results and I therefore was not prepared to make the long journey, with attendant risks, to participate. Hopefully the results will be out soon but I wonder how many CMML patients were recruited for the trial?! Results of MDS patients whose white cells are not affected will not be relevant to us?

News that Andrew Marr contracted a quite debilitating bout of Covid-caught at the G7 summit in Cornwall- after having been double-jabbed doesn’t fill me with confidence so I shall be remaining “outdoors-only” from July 19th -particularly as the case numbers here are rising fast again!

Just picked over 30lb of gooseberries yesterday so will now be topping and tailing and prepping for the freezer!!

Best wishes to all.

Please join in and write something about yourself all those of view who view these posts!
We’d love to hear from you.
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.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New CMML information

Post by chris » 03 Sep 2021 17:56

Hello All

I'm just posting about a webinar on CMML by the AA MDS International Foundation. You will have to register with them but it is all free and could be very interesting. We so rarely get anything about CMML so do try to join the webinar! Here are the details but please note that the time is 8pm British Summer Time (though please do check for yourself!):

"Molecular Genetics of MDS/MPNs Overlap Syndromes
Monday, September 13, 2021
3:00 PM EDT

MDS/MPN overlap syndromes have long been difficult to define and diagnose since they were discovered. They have similar features, symptoms, and test results to other myeloid neoplasms like MDS and MPN which makes it hard to diagnose. By using next-generation sequencing, hematologists/oncologists are able to better understand these syndromes and plan a course of treatment that is more effective and has better outcomes.
Dr. Hunter will review changes in understanding clinicians and researchers have about diagnosing and treating these overlapping syndromes (including chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia, atypical chronic myeloid leukemia, MDS/MPN with ring sideroblasts and thrombocytosis and MDS/MPN unclassifiable). This session will also include a live Q & A session. You are invited to submit your questions in advance to help@aamds.org. "

Register here:

https://default.salsalabs.org/Tc1751210 ... 2412c55274

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.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New CMML information

Post by chris » 07 Oct 2021 13:45

Dear All

If you missed registering for the webinar I mentioned below, it is now available to watch on demand. It was very informative. Please use this link:

https://default.salsalabs.org/T8bb0d954 ... 2412c55274

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.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New CMML information

Post by chris » 06 Apr 2023 18:53

Hello to all CMML patients and caregivers

Please register for an interesting and helpful session, led by Dr Dan Wiseman who is a UK haematologist specialising in CMML. he will be outlining the key features of CMML and available tretmetns,as well as telling us about a clinical trial on which he is the lead clinician. Do please join us as opportunities like this don't come along very often with CMML because of its rarity!

https://mdspatientsupport.org.uk/event/ ... l-wiseman/

best wishes to all

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.
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