Itchy Skin CMML

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Freddy

Itchy Skin CMML

Post by Freddy » 23 Oct 2012 19:14

Hi Everyone,

Can anyone please help, my wife has CMML, which was diagnosed in May 2012.

She gets bouts of terrible itching all over her body, but especially her legs, can anyone please recommend anything to ease it.

Thanks.
chris
Posts: 611
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Itchy Skin CMML

Post by chris » 25 Oct 2012 12:21

Hi Freddy

So sorry to hear that your wife is having this problem. I have CMML but have not experienced any issues with my skin. It might be helpful to talk to her health professionals and try to ascertain whether it is the disease itself causing the problem or the treatment - if she is having any? And then to see if they have any suggestions to ease it? If you don't have an appointment with a consultant in the near future, do you have access to a clinical nurse specialist who may be able to help?

Does your wife have the type of CMML with the high white cell count or the low one as they do seem to exhibit different symptoms?

I wish you both well.

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
Freddy

Re: Itchy Skin CMML

Post by Freddy » 25 Oct 2012 17:33

Hi Chris,

Thanks for advice.... we saw the consultant today and discussed the various antihistamine tablets that dont seem to be working, and skin creams that work sometimes. He is contacting a dermatologist to see if they can suggest something.

My wife is taking Hydroxycarbmide for her CMML which has stabalised her blood counts. When first diagonised she had a white count of 166, which is now hovering around 10, so it seems to be working for the time being.

Thanks

Freddy.
chris
Posts: 611
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Itchy Skin CMML

Post by chris » 27 Oct 2012 12:57

Hi Freddy

I found this information about hydroxycarbmide on the Macmillan site and itchy skin and other effects on the legs seem to be included in the list of side-effects. If it is the treatment causing the itchy skin and stopping the treatment is clearly not an option, maybe the dermatologist can suggest something that would ease the symptoms? Do hope so - it sounds horrrid.

http://www.macmillan.org.uk/Cancerinfor ... IvAoMXA-So

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
Andy Pandy
Posts: 26
Joined: 30 Nov 2011 10:47
Location: Eastbourne

Re: Itchy Skin CMML

Post by Andy Pandy » 20 Nov 2012 18:20

Hi

I also suffer from very itchy skin, particularly the tops of my legs after a shower and sometimes my arms. I feel like ripping my skin off but that is not an option. I just smother Holland and Barrett Aloe Vera Gel on all the itchy areas - it works for a while and soothes. The itching seems to go off after about an hour - I tend to sit quietly and do my skin calming - just relaxing and emptying my mind and trying to concentrate on something else. I have recently seen a Dermatologist and had some biopsys taken from areas left after extremely bad exzema a couple of years ago - I call them vulcanos - very rough areas of skin which can sometimes break open and bleed. I have to be very careful because I suffer from celluilitis as well and this does not help.
I will look at the macmillan link

Andy
Dx AML May 2014 13% blasts, BMB Apr 2015 3% blasts and bloods very good. Azacitidine chemo
Freddy

Re: Itchy Skin CMML

Post by Freddy » 22 Nov 2012 17:59

Hi Chris and Andy,

Chris, thanks for the info on Hydroxycarbamide, as you say stopping it is not an option so we must find a way to try and manage it. I have posted below some information we have recently found.


Andy, we have recently come across some products called Organic Surge, a natural product with no allergens, which are made from the oil of the Bergamot fruit, its a natrual antiseptic and soother.

They do a shower gel and body lotion which is available from www.organicsurge.com its a UK based company and the service is excellent, with deliveries within a couple of days. Both the products are about £9 each.

They seem to work well for my wife, she puts the Bergamot cream on before showering, then uses the Bergamot shower gel, applying Eurax afterwards. It sometimes takes the itch away completely or lessons the intensitivity and length of time she itches.

You may have to try different combinations of the Bergamot and Eurax to find whats best for you.

Hope you get on ok.

Freddy.
Andy Pandy
Posts: 26
Joined: 30 Nov 2011 10:47
Location: Eastbourne

Re: Itchy Skin CMML

Post by Andy Pandy » 05 Jan 2013 17:17

Hi Freddie

Thanks for the info - I will have a look at the website. Willing to try anything to soothe the itching :!:

Andy Pandy ;)
Dx AML May 2014 13% blasts, BMB Apr 2015 3% blasts and bloods very good. Azacitidine chemo
Peterh17

Re: Itchy Skin CMML

Post by Peterh17 » 22 Apr 2013 23:34

I also have CMML and suffer itchy skin, mainly legs, and shoulders. It is particularly bad after a shower. It tends to last about half an hour. I was referred to a Dermatologist who said there is sometimes a link with blood disorders. I have been prescribed with various creams and antihistamines, none of which seem to work.

I am not currently having any treatment for my CMML. My platelets are 53, and monocytes 8. I also have raised white cells and neutrophils..

I would also be interested in any other feedback re itching.

Peter
chris
Posts: 611
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Itchy Skin CMML

Post by chris » 23 Apr 2013 14:30

Hi Peter

I have CMML but the dysplastic type rather than the proliferative type so my monocytes, though over 1, tend to oscillate around 1 and my white cells and neuts are low. Although I can't find anything re CMML, I have found references to skin disturbances for JMML which is the Juvenile form of CMML so I guess it is the raised monocytes which cause this. Sounds obvious but if the shower makes it worse, do you think this is the heat or maybe the shower gel? Would it be worth trying a cooler shower with mild gels such as Simple? It doesn't sound as if anything topical applied to the skin helps.

You will see that Freddy's wife also suffers but was on treatment so it's hard to tell if it's the disease itself or the treatment which causes the problem. Some of the tips shared here might be worth a try. Evening Primrose Oil is supposed to be good for a lot of skin problems?

Hope you can find something to help.

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
Peterh17

Re: Itchy Skin CMML

Post by Peterh17 » 21 May 2013 08:14

Hi Chris and Andy. Thanks for your feedback. I saw the dermatologist last week and she is going to setup a meeting with me and the other dermatology consultants at Watford General. She is also considering photo therapy - a free suntan - wow! The theory I think is that the itching is usually to parts of the body that don't normally see any sun! The meeting is not until July.
Had a very bad bout of itching to my back yesterday after cycling. I got sweaty and this seemed to be a trigger. As I was away from home and just being driven back with a friend, there was nothing I could do to relieve it. That was the worst car journey I can remember. Try scratching your back with a sweaty shirt on whilst wearing a seat belt - it was torture. I'll give more feedback in due course.
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