CMML specific messages

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sophie
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CMML specific messages

Post by sophie » 10 Aug 2011 15:12

Please post all your CMML specific messages in this folder - will make it easier to find information.
Thanks
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chris
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Re: CMML specific messages

Post by chris » 11 Aug 2011 22:19

I would be so glad if anybody searching this Forum who has a diagnosis of CMML (Chronic Myelomonocytic Leukaemia) would post in this folder as it is quite a rare sub-group and, although there are similarities with other types of MDS, there are also huge differences, not least the problems with enlarged spleen and liver.

My diagnosis is currently ?CMML as I understand that it doesn't quite fit but it's the nearest category of MDS. One of the consultants I have seen categorised it as RCMD (Refractory Cytopenia with Multilineage Dysplasia). You can see why they use the initials!! I have low white cells especially neutrophils, slightly raised monocytes, low platelets, normal Haemoglobin. I have a severely enlarged spleen and an enlarged liver but am glad to say that I am otherwise quite healthy and fit. I have listed my initial symptoms of CMML "kicking off" elsewhere on the Forum so won't repeat them here.

Would be glad to have others share their experiences of CMML diagnosis and treatments.

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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GOOD NEWS. The new drug Azacitadine and CMML

Post by dinace1 » 28 Sep 2011 19:16

My Mum was diagnosed with CMD June 2010. by the end of 2010 the diagnoses changed to CMML plus leukemic cells in her skin. No cure, no chance of a transplant as she is classed as to old, (73 years old), She was put on the mild chemo Cytrabane, which I believe is the standard procedure for CMML care.
The drug Azacitidine (Vidaza, as it's called in the USA) was finally released in Feb this year and made available for leaukemia patients especially those with CMML.
As soon as I found this information we went to see our specialist and mum was accepted for the new drug Azacitidine and she started the first course in May. (The course is 2 injections for 7 days every 4 weeks)
After the 5th session Mum had a Bone marrow test done and the results were more than we could have hoped for. Her blasts had been reduced by 75%, the blood transfusions have been reduced from 1-2 a week to 1 a month, the sparkle is back in her eyes and she is actually planning for the future.
It's not a cure but it prolongs life and brings quality of life back again.
Life is smiling again :)

Denine



Jayne
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Re: CMML specific messages

Post by Jayne » 29 Sep 2011 13:07

Hi Denine. I think that it is truly marvellouse that your Mum has her sparkle back in her eye and is back to enjoying life and planning for it's future. I would call that a success.
I dont have CMML but I wanted to comment on the good news.

Chris - has Azacitidine been offered to you?

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
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Re: CMML specific messages

Post by chris » 30 Sep 2011 20:30

Hi Denine, Jayne

Firstly, sorry for ignorance but what is CMD? (Did you mean RCMD - Refractory Cytopenia with Multilineage dysplasia?!). Have already replied elsewhere to say how great it is to hear the news, Denine, of your mum's dramatic improvement - though no doubt it hasn't been fast enough for you watching on from the sidelines?!

Regarding the offer of Azacitidine,Jayne, no - not been offered to me as fortunately my CMML is type I, lower risk, and currently I have no health problems other than a fat spleen and liver!! As I learned from the physician presentation (by Dr Paresh Vyas) at the MDS Patient Forum in London today, there has to be a carefully weighed-up decision made between the severity of the symptoms and the severity of the potential side effects of the treatment and currently I would be worse off taking the drug. I do not need transfusions as currently my red cells are Ok. I would similarly hope to avoid chemo for as long as possible as it lowers all the cell counts and mine are low enough already and it would make me even more prone to infections and lower platelets.

I chose to have my care at the Centre of Excellence at Addenbrookes because I was very impressed with the conservative approach of Prof. Warren there and I am confident that we could have useful and interactive dialogue when it comes to weighing up treatment options - or not!!

Next week my 3rd bone marrow biopsy. Wish me luck!! The last one was truly awful!! Then the horrid wait for the results and hoping nothing nasty has turned up in the past 2 years.

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 specific messages

Post by dinace1 » 01 Oct 2011 02:41


Chris
When you have your bone marrow biopsy ask for gas and air, The first biopsy of mums was dreadful, and she was dreading the next one. We were told she could have gas and air, now mum sails through them, no pain or anxiety while it's being done. Don't suffer Chris.. go for the gas and air.
Jayne
Thanks for your comments, it is wonderful news.

Denine
janetstanford
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Re: CMML specific messages

Post by janetstanford » 01 Oct 2011 15:13

Hello
so good to hear the news i have my transfusions approx 4 weekly at first i had them weekly then every 2 weeks ect ect also the amount i have is less reduced to 2 last few times so i am getting there..so i know how bright that sparkle is in your mothers eye :P

and chris yes drugs every time :? i did not have gas and air mine was in the hand and it was fine no pain just a pulling sensation good luck

speak soon Janet
chris
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Re: CMML specific messages

Post by chris » 05 Oct 2011 10:22

Hi Denine, Janet

Thanks for the tip. They said gas and air would be on hand but I admit I do have memories of how useless it was during childbirth and I think the BM biopsy is more painful than childbirth... and without the happy ending!!! Still, I will give it a go and hope it's as good an experience as Janet's was!

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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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: CMML specific messages

Post by chris » 07 Oct 2011 16:49

Hi All

Just to say the BM biopsy yesterday went much better than last time. The doctor gave me loads of local anaesthetic and made sure it had "taken". I also had quite a few "sips" of entonox (not a mask - a nozzle) and it did help - felt quite whoozy though when I got up after the procedure so may have OD'd!!! The worst bits were actually putting the anaesthetic into the bone and the final bit when she took the trephine biopsy (core of bone). Now just feel today like I have been kicked by a donkey but so much better than last night.

Hopefully back on digging duties on the allotment on Monday as socialising all weekend. Am hoping for some rain in this arid part of the country as the ground is like concrete on our new plot!!

Thanks for all the support

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
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: CMML specific messages

Post by janetstanford » 07 Oct 2011 18:14

Hi Chris
Glad it was better this time and over dosed blimey can you have enough when having that done i had 4 in total and not what i want to think of again but it will happen ...i used to sit on a cushion the next day i found this helped along with the pain killers ....
have a good weekend :) janet
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