Mycosis Fungoides

[billgeorge777Member]

I was diagnosed with stage IV Mesothelioma in November 2009. I underwent 8 months of Chemo.

Last month I have been diagnosed with Mycosis Fungoidies stage III (Cutaneous T- Cell Lymphoma). I have been suffering from a rash that everyone thought to be spongiatic dermatitis (eczema). I initially developed this rash almost a year ago and it progressively became worst. I was recommended to see a dermatologist who took two biopsies that revealed the rash to be a drug eruption. I was given oral anti-histamines and topical steroids and was told that it would eventually ‘melt away’.

Several months went by and the rash became worst. The itching was intolerable and I had found myself only getting around 3-4 hours’ sleep every night. Went back to the dermatologist who thought the rash could be a post neoplastic syndrome and needed another biopsy to confirm the diagnosis. After another 2 skin biopsies they now claimed it was spongiatic dermatitis or eczema. I was told to go home and use a stronger topical steroid ointment with cold water compresses to relieve the symptoms and oral steroids (prednisone). The rash still persisted and became worst. I realized that it was now time to get a second opinion. The new dermatologist wasted no time and took several larger skin biopsies. The results were startling and upsetting. I was confirmed this rare form of skin cancer. The cancer progressed from patches to plaques and now is erythrodermic. I am about to have a PET scan and bone marrow test to see if there is any disease progression.

I never imagined in my wildest dreams that I would have one deadly cancer (my current mesothelioma) and now to be diagnosed with a late stage skin lymphoma.

Can anyone please help??

[Dan52Member]

Not sure of course it this may apply to your case, Skin Cancer and DCA:  http://www.thedcasite.com/articles.html

[billgeorge777Member]

Thanks for the info. I am currently trying a combination of DCA and dilute DMSO on my skin. Unlike the usual skin cancers (melanoma and basil cell carcinomas) this form of cancer is widespread over my face, scalp, chest, back, arms and legs and is very itchy. I am applying to certain parts to see whether it has any effect. I am also trying saturated Vitamin C and DMSO.

The only problem I see is that I may have a resistance to DCA as I have taken in extensively when I was initially diagnosed with the Mesothelioma.

Does anyone know if this is possible for certain individuals to be resistant to DCA that it has no effect on their cancers??

[Anonymous]

Spend some time on PubMed via  http://www.ncbi.nlm.nih.gov/PubMed/ and simply search using "mycosis fungoides" and see if you find treatments that look highly effective.   I probably have more experience with DMSO than most MDs in the world and I can't say that I would be using DMSO and any combination in your case until you looked to see what might be highly effective for you. 

Many people are well meaning in their advice but also many people are just plain ignorant of the multiple complex issues involved  with so many illnesses. 

 Stephen B. Strum, MD, FACP

Board Certified: Internal Medicine, Medical Oncology

[billgeorge777Member]

Thanks for all your replies. I have my reservations about DMSO, used topically on Mycosis Fungoides. All it seems to do is to make the lesions worst. I have tried it  with vitamin C and with DCA and both had no effect.

Thanks guys but I am still desperately seeking help with this condition as no one seems to be helping me, including the doctors.

[billgeorge777Member]

Dear Dr. Strum

Unfortunately here in Australia little is known about this disease. Initially I was treated by my dermatologist and now by my hematologist. (I have a hematologist who treated me for pre Non-Hodgkin’s Lymphoma, in remission.) Unfortunately the hematologist is baffled as to what treatment is best to use. He has placed the onus on the dermatologist who has recommended UVB treatment for 6 weeks. Unfortunately in the last two weeks I have seen this disease progress reasonably fast from extensive patches to erythroderma in 99% of my body and moderate edema in my feet. Hence I am pushing my hematologist to start me on low dose methotrexate but he is reluctant to do so, as he wants to wait to see the results of the UVB treatment. I am lost as to what to do next. I am lucky that the Mesothelioma is currently stable but I am afraid that I will eventually have problems with it flaring up.

Can you offer me any advice as to what to do, as your help would be greatly appreciated.

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