11 replies to this topic

[dinace1]

Hello

I've joined this very good group in the hope I can find advice and support for my mum and the family. My mum was diagnosed with Myelodysplastic Syndrome last July, within 6 months it had developed into CML and she has just finished the first of a series of 10 day Chemo course. Mum is a very young 72. Before the diagnosis the specialist was convinced it was AML as she has quite a lot of  Leukemic cells in her skin, and apparently this type of skin leukemia is associated with AML. When the result of the bone marrow test came back and confirmed CML the specialist said Mums case was very rare and not often seen.  Mum is handling the news extremely well but she can not handle the skin irritation, her head, neck back and now part of her face is becoming darker, scaly and constantly itching, driving her nuts and bringing her down. The specialist does not seem to know what to give her to stop this persistent itching. Someone somewhere must also share this diagnosis, I just can't believe mum is the only one... Is there anyone out there who can help her find relief, any suggestion would be gratefully received. She is also losing weight, she is now only 7 stone, does anyone have any suggestions on how to put on weight. she is eating now, small meals and often and has a vitamin supplement she adds to her food, but she is still losing the weight.

Thank you in advance.

Denine

[hannibellemo]

Hi, Denine,

So sorry you have to be doing this for your Mom but she is very lucky to have you looking out for her. I'm not really familiar with what your mother is going through but I wonder if you are referring to Sweet's Syndrome? There has been some discussion on this board. Go to the upper right hand portion of your screen and search for it, there were a few entries that may give you more information than I can.

Hopefully someone who knows more will be along soon to provide you with more information.

Good luck to you both and I hope you will continue to use this board for support and reference.

Pat

PS Also wanted to suggest that you read Trey's "Information for the Newly Diagnosed" It is very helpful and generally uplifting.

[dinace1]

Thank you Pat

I will read up on Sweet Syndrome. Mum's specialist seems very reluctant to comment on the skin problem, they just said that Leukemic cells are in areas of her skin but they do not come from the bone marrow and the origin is unknown. I find this hard to believe.

Denine

[hannibellemo]

Denine,

I noticed a typo after I posted and went back and corrected it - it is actually Sweet's Syndrome. Sorry!

Pat

[dinace1]

I just looked up Sweet's Syndrome and Mum hasn't got that.

The affected skin has discolored brown, Dad says she's turning into a Spaniard, (her father was a Spaniard and had lovely tanned brown skin)   The skin also feels very rough, dry scaly. no open wounds. A biopsy taken from the back of her neck confirmed Leukemic cells.

The persistent itching is the main concern of my mum, she feels her quality of life is diminishing. E45 cream relieves it for a short while, anti-histamines don't work or the steroid cream she was prescribed.

Any suggestions greatfully received

[Trey]

It is called "leukemia cutis" or "cutaneous granulocytic sarcoma" ("cutis" is from "cutaneous" referring to the skin).  It is very rare in CML leukemia.  It is a form of what is termed "extramedulliary leukemia", which means the leukemia is manifesting itself outside of the blood and bone marrow.  If you do a search on these two phrases you will find some treatment options.

http://emedicine.med...097702-overview

http://dermatology.c...a/ferriera.html

Patients who start out with a myelodysplastic syndrome that transforms into leukemia and also develop a chloroma are often treated as if they have transformed to acute leukemia.  That would be the reason for the chemotherapy, when most of us only take Gleevec or another CML drug.  Your mother should be started on a CML drug (Sprycel would be best, but you are in the UK where it is not authorized as a first line drug -- ask your Onc about this).

She should try to drink high calorie, high protein energy shakes.  They are easy to drink and can help with weight gain.

[dinace1]

Thank you  Trey, it seems you have answered my question as to what mum has. I looked up the links you gave me and the words Leukemia Cutis and EML as you advised.

We are going to the hospital tomorrow and I have wrote down a few questions for the doctor regarding the information you gave me.

So scary though... the outcome of Leukemia Cutis isn't very positive.. the strange thing is Mum had these itchy lumps in her head a good year before she was diagnosed with MDS

Thank you again Trey, You have been such a help.

I'll let you know what the doctor has to say on our return.

Denine

[everonward]

Hi Denine

In the UK as Trey says Glivec is first line of attack for CML. Which hospital are you going to, you need to get referred to a centre of excellence, such as Kings in London and the lovely Prof Mufti. Hoping it goes well today.

Marian

[dinace1]

I went armed today to the hospital with mum with the knowledge I'd gained from all your replys.

It then transpired that we were given a wrong diagnosis and Mum does not have CML she has CMML (Chronic Myelomonocytic Leukemia) plus EML (Extra medullary Leukemia known as Chloroma) I've reseached the illness CMML tonight but it's so difficult to understand.

Can anyone tell me in laymans terms what it is?

We are from South Wales UK and the hospital mum is attending is the Heath Cardiff

[Trey]

CMML does not have the same genetics as CML, so our drugs will not help.  CMML is somewhere between a leukemia and a myelodysplastic syndrome, depending on the sub-type she has.  Here is some info from the L&LS on CMML:

http://www.leukemia-...?item_id=557237

You will need to learn the specific genetic sub-type of CMML before you will be able to understand her treatment options.

Here is the L&LS discussion board where you can discuss CMML with others:

http://community.lls...th/mds?view=all

We all wish your mother well.

[dinace1]

Thank you all so very much for your help and kind words.

[soundoff]

Nice one Trey I wasn't sure what the diagnosis was....