CTCL
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CTCL
I had not posted to this board for a long time until just recently. I just realized that I have not written anything about my experience three years ago. After three dermatology visits and over two years of waiting I finally found the doctor that did a biopsy on the rash on my back. I finally found out that I have Mycosis Fungoides. It is a Cutaneous T-cell lymphoma. It is in the lymph system and it manifests itself in the skin. I have been taking treatments for three years which consist of sessions in the UVB light box and also laser treatments. I also use salves on my back and most of them are corticosteroids. The rash on my back did go away for a while but it's back again. Unfortunately NHL is not curable but thankfully it is treatable. I am also thankful for the dermatologist who really looked at it and investigated rather than telling me it was eczema like all the other doctors did. Just something to complicate my life further. But as long as I can keep on square dancing I'm fine!
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Hi Jeanie,
Thanks for the update. I learn something new here on this board every day.
I'm glad that doctor checked it out properly.
I'm just curious about whether antihistamines are a part of your treatment program.
Tex
Thanks for the update. I learn something new here on this board every day.
I'm glad that doctor checked it out properly.
I'm just curious about whether antihistamines are a part of your treatment program.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
CTCL
Thanks Tex! The only treatments I have been receiving for my lymphoma are the lightbox and/or the laser treatments along with the corticosteroid salves. I also see a doctor at the university of Minnesota. She is a teaching professor and the head of the dermatology department. I do have allergies big time which were first diagnosed in 1956. I take Zyrtec for them (Hayfever, etc,) and this summer was really bad! I have tried to figure out about mast cells as I have read a little about them on this forum but no doctor ever mentioned it to me. I'm wondering if I should restrict my diet further with the histamine issue. The reason that I did the testing for gene mutations is because I have so many different problems. And I guess with 74 mutations it should be no surprise. I do have methylation issues which is why my homocysteine is high. I am taking L5- MTHF folate for that.
By the way, I tested negative for celiac but my nephews two children both have it.
Jean
By the way, I tested negative for celiac but my nephews two children both have it.
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Jean,
I don't understand why they seem to ignore the mast cell involvement (unless they are simply unaware that mast cells are involved). Here is an older research article that discusses the mast cell and histamine involvement with mycosis fungoides.
Role of Mast Cell and Stem Cell Factor in Hyperpigmented Mycosis Fungoides
And there is evidence that naltrexone can be used to reduce itching with MF and related skin issues:
[Antipruritic therapy with the oral opioid receptor antagonist naltrexone. Open, non-placebo controlled administration in 133 patients].
The original article is in German:
Antipruritische Therapie mit dem oralen Opiatrezeptorantagonisten Naltrexon
If naltrexone will reduce the itching, I don't understand why higher doses of antihistamines (up to 4 times the labeled dose) would not also work. Allergists use this treatment to treat other skin issues involving inflammation due to mast cell activity.
Tex
I don't understand why they seem to ignore the mast cell involvement (unless they are simply unaware that mast cells are involved). Here is an older research article that discusses the mast cell and histamine involvement with mycosis fungoides.
Role of Mast Cell and Stem Cell Factor in Hyperpigmented Mycosis Fungoides
And there is evidence that naltrexone can be used to reduce itching with MF and related skin issues:
[Antipruritic therapy with the oral opioid receptor antagonist naltrexone. Open, non-placebo controlled administration in 133 patients].
The original article is in German:
Antipruritische Therapie mit dem oralen Opiatrezeptorantagonisten Naltrexon
If naltrexone will reduce the itching, I don't understand why higher doses of antihistamines (up to 4 times the labeled dose) would not also work. Allergists use this treatment to treat other skin issues involving inflammation due to mast cell activity.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.