Cmml itch

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Mollie
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Joined: 18 Oct 2014 12:14
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Cmml itch

Postby Mollie » 11 Nov 2014 15:10

Hi

I have cmml and have been told that I have to learn to live with the itch, this very difficult I have tried all sorts of creams but nothing helps, just wondered if anyone has had some success with dealing with this problem.

Mollie
MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Cmml itch

Postby MollyP » 14 Nov 2014 07:46

Hi Mollie, from Molly
Are you on Hydroxycarbamide? There is a post in cmml section regarding itchy skin if you haven't read it it might be worth a browse through.
My husband went to see the dermatologist at Kings a while back and found it a useful meeting, are you with a Centre of Exellence such as Kings? If not, talk to Sophie, Patient Liason about it and she can point you in the right direction.
Best wishes
Molly
*** *** *** ***
66 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Aug 14 w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
Mollie
Posts: 5
Joined: 18 Oct 2014 12:14
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Re: Cmml itch

Postby Mollie » 14 Nov 2014 09:16

Hi Molly,

Thank you for the advice, yes I am on hydroxycarbamide I take one a day. I went back to my doctor yesterday and he thinks I have Sweets syndrome so has given me steroids. I also have to make an appointment with a dermatologist but there's a two month waiting list.

I found this site a couple of weeks ago as doctors just wheel you in tell you your blood count and say see you in two months I have not had anything really explained to me only what I have researched on the internet and some of that is scary.

My white cell is 5.5 all other bloods etc are normal . The only other symptom is this itchy rash and I have had cellulitus 3 times in as many months.

Thank you for replying

Regards...mollie
MollyP
Posts: 72
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Cmml itch

Postby MollyP » 14 Nov 2014 22:27

Mollie

Read
viewtopic.php?f=3&t=159

It's on the forum's main page and is to be read before using the forum, it has lots of good advice and has Sophie's details. I mised it when I joined. Sophie and the team are brilliant, via Sophie my hubby went to Kings and we have had excellent care and advice. We were fortunate that our local hospital's oncologist trained under Prof Mufti so we have an amazing people right where we need them.

It's makes such a difference when healthcare proffesionals know about MDS.

I hope this helps, do ring Sophie.
Best wishes
Molly xx
*** *** *** ***
66 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Aug 14 w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Cmml itch

Postby chris » 17 Nov 2014 13:48

Hi Mollie

Sorry to hear of the itchy skin problems with CMML. It seems quite common. See various posts on this forum about this as Molly suggested. The Macmillan site says that itchy rash may be a side effect of the hydroxycarbamide so the question is " Did you have the rash BEFORE you started treatment?" i.e. is the CMML causing it or is it the treatment? It would be worth checking this out with your heamatologist before you embark on seeking other diagnoses/ treatments which may not be relevant and may complicate the CMML!!

Take care

Chris
Chris. (F) Age 67 (2017). 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
Mollie
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Joined: 18 Oct 2014 12:14
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Re: Cmml itch

Postby Mollie » 17 Nov 2014 15:59

Hi Chris,

Thank you for replying, the rash started before I was diagnosed with cmml. The problem I have is just with my white blood cells are high. Doctor has started me on a course of steroids so fingers crossed this works.

It's good to talk to people that have the same problem because I felt very isolated hospital not very good with information on cmml.

Regards......Molllie
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Cmml itch

Postby chris » 25 Nov 2014 22:26

Hi Mollie

It sounds awful - both the itch and the cellulitis. Did you have treatment for the cellulitis too? I hope the treatment for the itching helps you. CMML isn't as well-known as other types of MDS. Here is a link to a useful leaflet. Search for CMML on this site.

http://www.leukaemiacare.org.uk/search

Take care

Chris
Chris. (F) Age 67 (2017). 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
Mollie
Posts: 5
Joined: 18 Oct 2014 12:14
Contact:

Re: Cmml itch

Postby Mollie » 26 Nov 2014 11:04

Hi Chris

Thanks for the info and yes had antibiotics for cellulitus , steroids no t helping much with the itch but have an appointment in January to see dermolologist so maybe they can help. I have also contacted Sophie for help.

You take care too

Mollie

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