Hello bestbaba,

I just wanted to say a big welcome to our forum. I hope others here will be able to help you and share their own experience if they also suffered from this itchiness.

I remember someone posted here only a few months ago who also had mycosis fungoides. You can read Mori's story and respond if you wish here. It can help to talk to someone else with a similar diagnosis.

Feel free also to ring our nurses on this free number 0808 800 4040, Monday to Friday 9am to 5pm. They may have some good advice for you too!

Best wishes,

Lucie, Cancer Chat Moderator

Hi Bestbaba

I've had MF IA for 6 years, and it's a pretty indolent condition for me.  It sounds like you might be IB or maybe 2A?  Or, do you have the Sezary variant?  Can you recall what your specialist staged you at?

I joined Cancer Chat a while back, but because the UK only has 60 million people, there's not many people with this rare and weird disease.

I'll get straight to the point, you need to look to the United States - with 300+ milion people there, there are enough sufferers to get the answers that you need.

I've been researching online for years and there are two key American resources that I know will help you a lot.

Firstly, the Cutaneous Lymphoma Foundation.  Go to http://www.clfoundation.org/.  There is a huge amount of information there.

I also strongly recommend that you join an American List Server called ACOR - the Assoc. of Cancer Online Resources, Inc.

The ACOR List Server is like Cancer Chat, but they have a specific forum just for Mycosis Fungoides folks under the heading CTCL (for Cutaneous T-Cell Lymphoma).  There are a couple of UK people on this forum and I reckon it will REALLY help you.

To join ACOR, go to http://www.acor.org/, or go straight to the page that allows you to create an account to communicate with the 1,200 CTCL members - http://www.acor.org/listservs/join/46

You'll need to create an account with your email address, and then send use the login to search the archives for previous corresponedence on the dreaded itch.  There's an enormous amount of information about how to deal with itching.

Alternatively, after creating an account, send an email to CTCL-MF@listserv.acor.org - you'll need to introduce youself, and ask for help on the itch.

I have seen many discusssions about itching and will try and find a few emails about this for you.

Regards - Mori

Hello again Bestbaba

I did a search from the ACOR List Serve archives, and found several thousand posts on the CTCL forum that mentioned itch.

To give you an idea of the sort of postings you'll see, I've copied and pasted some extracts of a recent message that refers to itch below.  This particular lady is suffering from stage 4 Sezary Syndrome - a serious variant of Mycosis Fungoides, and has erythroderma. 

I'm optimistic that you'll get the help you need from the CTCL forum on ACOR Bestbaba.

Regards - Mori

Subject: thank you and my story
 

From: Marcy ...

Date:  Sun, 19 Jul 2015 20:20:36 -0500

In January 2013, at the same time I was experiencing a lot of stress at work, I started itching in the bra line area, and it looked like I was getting dipped in strawberry jelly That began to spread to other areas of my body, mostly bathing suit places, but also on my upper thighs. I went to a chiropractor who recommended cleaning up my food and isolating allergies. I did this and lost weight, but not the skin problems. After waiting months to get in to see a dermatologist, she gave me the protocol for unknown skin issues (Triamcinolone, prednisone for a short course and something else, plus a regime for dry skin). These things helped for a bit. The infernal itching was starting to keep me awake at night.

...

I saw Dr. Reisel on Ash Wednesday of this year and based on the enlarged lymph nodes, the abnormal white blood cell count, whole body erythroderma (is that a word?) and the family history, he diagnosed me on the spot with mature Sezary disease. Of course, he sent the blood out to be tested, and it came back positive. Even at that first appointment, he told me I was to go to Northwestern Memorial Hospital in downtown Chicago, where Dr. Joan Guitart and Dr. Timothy Kuzel ran a CTCL clinic. After getting a lymph node biopsied, CT scans and all that, I had my credentials to see the docs at Northwestern.

Imagine my shock when, on the first visit (March 2015), Dr. Kuzel (oncologist) told me I was stage 4a. I still find it hard to believe. They told me that I would be injecting Interferon 3 times a week and would be receiving photopheresis. This was all completely foreign to me, and it took several weeks for the Interferon to be approved, and two months before the photopheresis was finally scheduled. Along with that, they prescribed Triamcinolone, clobetasol cream and foam, and 40% urea cream for my hands and feet, which were scaling and cracking.

Fast forward to today -- I have been going for photopheresis two days a week, every two weeks. When I asked how long I would have to do this, Kuzel said at least six months, to know whether it has been effective. At my last visit Guitart said, "longer." They told me that they thought this course of treatment was the very best available BUT if my body couldn't tolerate it, that there were many other ways to go. Heck, I want the best, so I am sticking with it. They also added narrow band light treatments (2-3 per week) on the off weeks from photopheresis. That has been tough, because I don't have much of a tolerance. I can just tolerate 45 seconds at this point, after having gone to 1:40 and suffered a lot.

....

During the day:
Keep lotions right at hand for any dryness (it has taken me the longest time to get this through my head)
BioFreeze spray to squirt on to arrest the itching feeling
After-sun gel to put on the red areas that usually feel hot, like sunburn
Cotton gloves to wear at all times
Cotton socks ditto
Drink lots of water (good for many things)
Vinyl examination gloves for dishes or cleaning work, Aquaphor on my hands underneath
Naps when possible
Try NOT to pick at myself

PM:
7 minute bath in warm, not hot water
Leave body wet
Apply CeraVe SA cream everywhere
Alclometasone on my face
Aquaphor on soles and palms, covered by old gloves and socks
White cotton undershirt and non binding undershorts to wear to bed

Hi bestbaba

Mycosis fungoides is also known as cutaneous T cell lymphoma and we have a page about it here:

Best wishes

Jane

Hi Jane - the page about CTCL is excellent, as an overview.  Perhaps Bestbaba should discuss the itching with a nurse who specialises is CTCL itch.  The itch associated with CTCL is extroadinary, and sufferers go to amazing lengths to try and reduce it.  The ACOR list serve has several thousand conversations between MF/CTCL sufferers about this very specific topic.  Only in the United States do you get a sufficient number of old people (typical onset is 55) with the tech savy ability.  I live in Australia, and it's even more isolating here.  A rare disease that so very few doctors understand.  The typical family GP only sees one MF / CTCL patient every 150 years.  Best regards - Mori

The only slight relief I have found is Vasaline.  Does your rash go away sometimes?  Mine is on my face now (it was over almost my entire body when I was diagnosised last year).  It burns on the face in the mouth.  Ugh!  Did you think the creams or PUVA worked?  I haven't tried them because the side effects seemed worse than the itch. 

I wish you lots of luck with the interferons.  Take care!!

rr

Hi, 

Just wondering how you are. My Dr suspects MF haven't had a hard diagnosis though any recomendations  I'm not sure what to do this rash has been on .my back side for as long as I can remember