CMML Any one out there,

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dinace1
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CMML Any one out there,

Post by dinace1 » 12 Apr 2011 10:25

Hello all,
Firstly let me say how glad I am to have found this site, all the other sites I have found are from America and the trials and cancer drugs available in the USA are vast compared to the UK so even though they were supportive they could not advise me about treatment etc.

My Mum is a very young 72 year old and was diagnosed with Myelodysplastic Syndrome last July, within 6 months we were told it had developed into Chronic Myelomonocytic Leukemia, CMML for short. She also has developed Leukemic cells in her skin, EML (Extra medullary Leukemia known as Chloroma)

The specialist said Mums case was very rare and not often seen and they didn't know a lot about it, very reasurring!
She was mis-diagnosed at first with CML and was wanted for the drug trials, but when it was discovered she had CMML the specialist said due to the rarity of her cancer the trials would not be cost effective as the results would be inconclusive. And that means?? what??

So since diagnosis mum has had 3 sessions of a 10 day mild Chemo course of Cytrabine. To be honest I don't know if this is helping or not, she needs blood and platelet transfusions once a week, sometimes twice. She has lost over 2 stone since diagnosis and it's hard to keep her spirits up when there is no information out there. How can we fight it if we don't know what it is.

Please can any one offer me any advice or information, We do feel so alone.

Thanking you all in advance

Denine
chris
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Re: CMML Any one out there,

Post by chris » 12 Apr 2011 12:48

Dear Denine

I am replying because I was initially diagnosed with CMML and, yes, you are right, it is quite a rare manifestation of an already rare disorder (MDS) so that explains the relative lack of knowledge about it. In addition, your Mum has another rare symptom - the EML -probably caused by the CMML? I am fortunate in that my CMML is borderline so have no experience of any treatments. However, I wanted to respond to you because I do understand how isolated one feels with this diagnosis.

I presume that your Mum is seeing a specialist who has experience of CMML? If not, she might want to consider going to one of the Centres of Excellence for MDS (see details on this site) but a lot could depend on where she lives and whether she wants to change specialists at this stage in her treatment? One thing that did occur to me though was that the drug Azacitidine has now been approved by NICE for use in the NHS for particular bone marrow failure diseases and one of those is CMML? (See the Home page of this website for more details). It may be that her particular type or stage of disease is ruled out for treatment by this drug for some reason and that is something you could ask her specialist about when you next see him/her. However, results from the drug are very encouraging and many people who were transfusion-dependent show great improvement - though it has to be said that they may need several cycles of treatment before improvement is seen.

Weight loss, loss of appetite, night sweats, low blood counts in one or more cells (red, white, platelets), enlarged liver and spleen are all symptoms of CMML, though maybe the chemo be having some effects too? If her haemoglobin is low she will also feel very tired. I will do another post (forgot to get the details before I started this and don't want to lose what I have typed so far!) and add some good sites for information about CMML. Also,you could also ask Sophie Wintrich (contact details on the site) for a booklet which explains all about the types of MDS/ Myelo Proliferative disease (MPD) (which CMML is). Try not to be too worried about the median survival times for CMML as there is a great range and the outcomes are now better due to treatments which were not available at the time.

I hope this helps a bit and maybe others with CMML who have had more experience of treatment may post replies?

Best wishes to you and your Mum

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Re: CMML Any one out there,

Post by chris » 12 Apr 2011 13:27

Hi Denine

Here are a few links to info about CMML. The third link needs perseverance as there is an awful lot of information in there but the paragraph on CMML is very informative and quite a way into the document!

http://www.beatbloodcancers.org/patient ... aemia-cmml
http://www.cancer.gov/cancertopics/pdq/ ... onal/page2
http://www.cancer.gov/cancertopics/pdq/ ... onal/page2

I hope these work

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Re: CMML Any one out there,

Post by chris » 12 Apr 2011 13:32

Sorry, Denine. The third link did not copy. Trying again!

http://www.mayoclinicproceedings.com/co ... 4/553.long

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
dinace1
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Re: CMML Any one out there,

Post by dinace1 » 13 Apr 2011 01:08

Thank you so much Chris for the information and the links.

Apparently we are under a specialist in the Centres of Excellence for MDS, only discovered this because I red it on this site, we have only seen the specialist, a Mr Kell, once when mum was diagnosed, but I have arranged an appointment tomorrow, (wednesday) with Mr Kell and I have all the information about the drug Vidaza or as they call it here in UK Azacitidine. It's wonderful news and I am going to fight to get mum on it.
I'll let you know the outcome.

I have been so worried about the median survival times for CMML and your words have eased my anxiety a little. Thanks again Chris

Do you know the percentage of people in the Uk who have this illness? It must be documented somewhere.

Take care and thank you again.

Denine
chris
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Re: CMML Any one out there,

Post by chris » 13 Apr 2011 11:06

Dear Denine

You must be so pleased that your Mum is already at an MDS Centre of Excellence.

MDS is rare; CMML is a rare sub-group - some say not even strictly always MDS but rather a cross-over type of Myelo-Proliferative Disease (MPD). You may see it classified as MDS/MPD. According to one of the links I sent you, only 300 people are diagnosed with CMML every year in the UK so with a UK population of around 62 million,this is 0.0005% or 0.000005 in a million!!! Or 5 in a trillion!!! Point is it is very very rare. Even the MDS experts will admit that they know very little about the likely course of the disease and research for the best treatments is still on-going so her doctors are at least being honest with you, though I agree it doesn't feel very reassuring!

If you have the time, there are lots of "webinars" on the AA and MDS Foundation website which explain about current treatments, MDS sub-types and understanding a person's risk score. A recently developed one is called the MD Anderson Risk Assessment as it is recognsed that the existing prognostic scoring systems are way from perfect. Remember that a median survival time is just the one in the middle so there could be big differences either side of that and there are plenty of people on this site who have gone way beyond the median, so keep up your hope.

https://live.blueskybroadcast.com/bsb/c ... 1&CAT=1425

I presume that your Mum will have had bone marrow biopsies so you should have been given information about any chromosomal abnormalities. If not, this could be something you ask about at her appointment today? Sorry, I just realised that you may well not see this before you go so, if not, I hope you both had a useful appointment with Dr Kell.

Let us know how it goes.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
dinace1
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Re: CMML Any one out there,

Post by dinace1 » 14 Apr 2011 00:41

Hi Chris

1 in 5 Trillion! that's mind blowing.. My dad, who is coming up 80 years old said, when I told him, "trust your mother.. she just has to be different"

Your links you gave me were brilliant, though the one was so hard to understand but I'll get there!
This median survival time.. as CMML is so rare how can they even declare a median result?
Our meeting with Mr Kell went well, he didn't mention chromosomal abnormalities he did say that as long as mums bone marrow tests come back showing less than 25 blasts (which I am sure they will, they were only 6 blasts last time) she can go on the new drug Azacitidine. Dr. Kell will have to apply for the funding first.. it's all politics isn't it?
For the first time since her diagnosis I feel more in control, on our way home mum actually felt hungry and we stoped and had kentucky fried chicken and mum ate every bit.. awesome, bless her.

Thanks again Chris

Speak soon

Denine
chris
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Re: CMML Any one out there,

Post by chris » 15 Apr 2011 10:38

Hi Denine

Yes, my family said pretty much the same to me...but more along the lines of "we always knew you were weird"!

Yes, the language of MDS is another whole thing but after a while you will build up your expertise!!It's interesting how the US sites bandy the language about so I can only assume that US patients are much more savvy on the ins and outs of their disease and treatment.

Glad you had a useful appointment. The lower level of blasts looks very encouraging and also the likelihood now of of going onto Azacitidine. Because it has only recently been approved and so few people use it, it is probably a whole new process for the doctors to apply so no doubt things are slow. Again,worth looking at some of those webinars about the Aza treatment because it seems that the blood counts get worse before they get better so you need to be prepared for that. Also read David's posts on this forum as he started improving after 4 cycles I think.

Glad your Mum's appetite has returned. That will make her feel a lot better. I did wonder if it was the shock of the illness and diagnosis that made me feel so nauseous and lose weight (i.e. all in my mind!) but I know now it is the disease itself.

Please post any other news as it is very helpful to others who might be going through the same thing and, as you know, there is very little information and support out there!

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
Posts: 594
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: CMML Any one out there,

Post by chris » 11 May 2011 12:39

Hi Denine

How's it going with your Mum?

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
dinace1
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Joined: 07 Apr 2011 00:20
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Re: CMML Any one out there,

Post by dinace1 » 17 May 2011 02:37

Hi Chris
A lot has happened since I last wrote, Mum's blasts were higher this time (23) but she was accepted for the new drug Azacitidine. She started her first course on Monday the 10th May, 2 injections a day, last day tomorrow Tuesday 17th May. The injection sites are very raw and sore but mum is handling it well, bless her she has no fat at all on her and they are very painfull when administered. the drug is so thick it takes ages to inject.
She has had no side effects yet accept tiredness but her appetite has totally gone and she is not eating, we've been told that the drug may be a contributing factor but isn't the cause. There is no physical reason why she can not eat. Mum is now 6 stone 3 oz, which isn't good. we have an appointment tomorrow to discuss this. In the middle of all this my daughter had a baby girl last Thursday, she's a little breath of fresh air to us all.
I hope you are keeping well Chris.
hopefully mum will get this eating disorder/problem sorted and she will start to put on some weight. It's hard to keep her postive but I won't give up.
Update to follow
Denine
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