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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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Celia
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New Member

Post by Celia » 05 Nov 2014 20:49

Hello,
I'm feeling very overwhelmed at present. I have just had a diagnosis of CMML. I suspect it is Type 2 (but this has not been confirmed by my Consultant) however he has spoken of treatment with VIDAZA, which from the knowledge I have gleaned elsewhere seems to be the treatment of choice for this type of CMML. But not of when this might begin.

I have a lot of questions but few direct answers are given. So, like many people, I began an Internet trawl and found this site. I recognise that CMML is not a common form of cancer, but just how rare is it? I live in the South Lakes/ North Lancashire area, any contact would be welcome as no one I have spoken to has ever heard of this condition previously.
janbev
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Re: New Member

Post by janbev » 06 Nov 2014 11:41

Hi
When anyone is diagnosed with MDS whatever form it is you are left feeling isolated, very little information is given to you - in my husbands case the consultant handed us a booklet with one paragraph circled which she said that is what is wrong with you but I need the chromosone results to say more, come back in 3 months. Very helpful I don't think!. Our GP surgery not one of the doctors there had ever come across a patient with MDS before and only one had heard of MDS and he admitted that we probably knew more than he did.
The internet is a good tool for information and apart from the info sophie wiill no doubt be sending you, Leukemia Care and Leukemia and Lymphoma Research have a lot of information on MDS and Macmillan Cancer Support also have info on blood cancers. MDS-foundation.org have a downloadable set of booklets called the Building Blocks of Hope which is very useful. Another site which you might find helpful is MDS Beacon.
Unfortunately the patient support groups all seem to be in the southern half of the country and although there is a Birmingham one listed I have not seen any mention of their meetings so I assume that there are now none north of Oxford. So those of us in the midlands and north luck out.
Having joined this site though you will find that if you have questions or need advise all you have to do is post and someone will reply. Welcome to the MDS community.
Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
chris
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Re: New Member

Post by chris » 12 Nov 2014 13:10

Dear Celia

I really identify with how you feel as I, too, had a shock diagnosis of MDS/CMML (Chronic Myelomonocytic Leukaemia) and a great lack of information from my consultant at the time. It felt hard enough to have the diagnosis of MDS but when I found that CMML was even rarer I felt even more isolated, frightened and unsupported. As you gain more information from your consultant about your particular diagnosis (and we all vary such a lot within this disease) , you will get a better idea about what it actually means for you and the treatments that are appropriate. Your consultant should be able to confirm what type your CMML is and also give you information about your chromosome -all information from the bone marrow biopsy which helps to determine the severity of the disease. Make sure you ask!!

However, you have come to the right place as this Forum probably yields more CMML patients than other, more general leukaemia websites.

First thing - if you have not already been in touch, do contact Sophie Wintrich as she can help a lot with support and information. Although we do not have any of our own MDS support groups "up North" we are working with Leukaemia CARE for some shared support and Sophie will be able to tell you what is available.

There isn't so much information about CMML as other types of MDS ( it's what they call a crossover disease - partly MDS and partly MPN (myelo -proliferative neoplasm) i.e. the bone marrow makes too much of some cells and not enough of others!) but I found this leaflet quite helpful.

https://leukaemialymphomaresearch.org.u ... 011__3.pdf

Secondly, also ask Sophie about Centres of Excellence for CMML/MDS in your area. With such a rare disease, some of us feel that we want to go to Centres where they specialise in this disease and where they are very up-to-date with latest treatments and access to clinical trials etc

Thirdly, don't be afraid of asking for help with coming to terms with this disease at an emotional level. As you get to know more, you will hopefully feel less anxious but it takes time and talking it over with somebody trained to support people might really help. We had a very interesting talk at the London MDS Forum from a lovely lady called Anne Crook (I think she is at Manchester - Sophie will know!) who had some great strategies for helping with anxiety - that is her job - and somebody like her would be very helpful at this early stage of your disease.

Finally,
do keep posting. I think it helps - it helped me at any rate and it's so good to know you are not the only one!! I have been diagnosed with CMML for 6 years and, thinking about it now, probably had some pointers/symptoms for 6 years before that so was blissfully unaware for all that time- hence the "chronic" bit in the title. Read my other posts under the CMML topic if you want to know how it all "kicked off" and how it affects me day-to-day! Sorry to welcome you to the CMML "club"- it's very exclusive and not one we would choose to be in but at least I can tell my family I'm one in a trillion!!!

With very 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.
Celia
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Re: New Member

Post by Celia » 12 Nov 2014 14:21

Hello Janet and Chris,

Thank you so very much for your replies. It's a comforting feeling to know that people care enough to respond.

Since I wrote my first post things have moved along, as they inevitably do! I have been confirmed as having CMML Type 2 with 12% blasts. I am to be referred to a treatment centre. They do not have the facility for certain types of treatment for CMML in Lancaster. Originally my consultant wished to send me to Blackpool Victoria Hospital. However Blackpool, as far as I have been able to research, is not a Centre of Excellence for MDS. Therefore I have requested to be treated at Christies in Manchester, which is a Centre of Excellence. I am to be considered for a Bome Marrow Transplant.

This is good news, a potential cure rather than a symptomatic treatment.

When I saw my Consultant yesterday one of the questions I posed (from an enormous list) was " how long do you think this disease has been brewing " surprisingly he thought it might not have been very long. My diagnosis was made after I had been to my GP complaining that I felt my Thyroxine levels where reduced and could I have another Thyroid Function test ( I suffer from an Underactive Thyroid) which came back as normal but anomalies were found in other areas. This was in July this year! I have had yearly blood tests but nothing has been previously pinpointed. Albeit they were not a Full Blood Count.

I am now waiting for my appointment at Christies, my sister has joyfully agreed to be my donor (providing we are compatable) I feel more hopeful, but at the same time nervous of what the treatment entails.

I am 66 on Sunday the 16th Nov. I would quite like a number of years left to me, to be able to behave disgracefully! After a career of being professional, proper, upright and exemplary I am due a few disgraceful years! Starting as soon as possible!

So I will be keeping in touch and will let you know the progress

Thank you both,

Best wishes

Celia
chris
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Re: New Member

Post by chris » 17 Nov 2014 13:25

Dear Celia

Happy Birthday for yesterday! Yes, 66 would be a good time to throw off your cloak of respectability! Anne Crooke (who I mentioned previously) works from The Christie so ask for referral if you feel you need any support with anxiety - which would not be surprising given how fast this has all moved!

I hope your sister is compatible but don't worry if not as they seem to get equally successful results these days with matched unrelated donors. Try also to get hold of a copy of The Seven Steps which explains all about stem cell transplants and what to expect. Available from Anthony Nolan I think?

Hope your appointment comes through soon as all the waiting is a bit of a pain! Do you have any troublesome symptoms from your MDS? Keep well and away from anybody with infections!

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.
Celia
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Re: New Member

Post by Celia » 17 Nov 2014 13:45

Hello again Chris, thank you for your birthday wishes. I had a spectacular day with all my family

My appointment at Christies has come for Wed 19th Nov. I'm now busy writing what seems to be an exam sheet of questions! I have found and read The 7 Steps, very useful information. Christies also do a handout about what to expect in the run up to admission and the rules for immunosuppressed patients, their carers and visitors, that was useful in preparation. So I should have a good indication of procedure, protocols and timelines by Thursday.

I feel a bit of a recluse, as I am limiting where I go and when in order to reduce contact to infection, bacteria and fungus! I almost think I ought to have a notice at the front door!

" If you have a cold, flu, cough, sneeze, tummy bug or feel poorly don't even bother to knock", in RED 72 point lettering! I wonder if that would deter a few of the more (what shall I say) less welcome visitors!

I will post again when I know more. Thanks for your contact and advice, it's gratefully recieved

Celia
chris
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Joined: 01 Dec 2009 21:52
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Re: New Member

Post by chris » 17 Nov 2014 13:58

Hi Celia

That's great - not too much waiting for your appointment. Hope you get your questions answered to your satisfaction.

Re infections! Love your idea of a notice on the door!! Suggest you increase your soap and water handwashing and arm yourself with industrial amounts of hand gel to apply frequently when you go out and about. I wear gloves on public transport and always keep a thin scarf with me to act as an impromptu face mask if I hear sneezing and coughing going on. Not sure how effective that is...... but it makes me feel that I am doing something useful!!! I was absolutely paranoid when first diagnosed but have become a little more sensible (rational?"!) over the years. You have to live your life as normally as you can or you end up getting depressed about it all.

Let us know how you get on on Wednesday.

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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