06-16-2025
Hey, so sorry you are having these issues over the past 30 years. That's a long time to be uncomfortable. We have the same lite box that you have. It's in our dining room which is fine as we never eat there. Since your lesions have advanced are you continuing to do the lite therapy? Are you applying any meds to those areas?
Yes, I continue with phototherapy and apply steroid cream to lesions. However, I cease steroid treatment as soon as particular lesions become less "angry" in appearance, ie, begin to fade.
I also limit phototherapy frequencies and exposure times when overall lesions begin to fade. I am experiencing the side effects of long term NB-UVB treatments, ie, photoaging, xerosis, actinic damage, pruritis and photocarcinogenesis (only basil cell so far).
I have been diagnosed with MF stage 1a phase since January of this year and started phototherapy in March and I have it three times a week. Recently when I saw my dermatologist oncologist he decreased it to twice a week. There are sometimes some patches that come up and ai treat it with a steriod cream and seems to be working. My advice is to eat a healthy diet avoid processed food as much as possible, manage your stress and do things that bring you joy and be with people that support you in this journey.
Yes, I continue with phototherapy and apply steroid cream to lesions. However, I cease steroid treatment as soon as particular lesions become less "angry" in appearance, ie, begin to fade.
I also limit phototherapy frequencies and exposure times when overall lesions begin to fade. I am experiencing the side effects of long term NB-UVB treatments, ie, photoaging, xerosis, actinic damage, pruritis and photocarcinogenesis (only basil cell so far).
1997 –
• June – Mycosis Fungoides (MF) diagnosed.
• August – Mechlorethamine full body painting treatments begin.
• November – End course of mechlorethamine treatments. Could not tolerate.
• December – Begin radiological phototherapy UVB three times per week as hospital outpatient.
1999 –
• January – Radiological phototherapy UVB treatments at hospital ends. Remission indicated.
• February -- Self applied prescription strength topical steroid treatments begin.
2001 –
• October -- MF plaques and patches increase in frequency and intensity. Topical steroid treatments ineffective in controlling. First relapse indicated. Higher strength topical steroid prescribed.
2007 –
• April – New plaques and patches diagnosed again as “very suspicious for MF”. A second relapse indicated.
• May -- Begin home localized treatments using Sperti Sedona UV table lamp on suspicious lesions and continue prescription steroids treatments.
2008 –
• January through December -- Continue home localized UV and steroid topical treatments.
• Continue annual full body exams, biopsies as needed.
2016 – 2019
• July -- Increase in frequency and intensity of patches and plaques in new locations. A third relapse indicated. Continue topical steroid and begin full body exposure to summer sunlight to control.
2020 –
• March -- Increase in frequency and intensity of patches and plaques. Topical steroids used to control outbreaks no longer effective.
• September -- Pathology reports diagnosed biopsies of plaques and patches as MF. A fourth relapse indicated. Doctor recommends lifelong radiological phototherapy full body NB-UVB treatments from September 2020 to December 2020 as hospital outpatient.
2021 –
• January -- Radiological phototherapy – Doctor recommends full body NB-UVB ongoing and continuing as lifelong treatment plan via home unit.
With my doctor's prescription, in January 2021, I ordered the Daavlin Series 7 - 10 lamp full body UVBNB unit and vary exposure frequencies from 1 to 3 times per week as necessary to control lesions. Still using original lamps. The MF lesions have in 2024 - 2025 advanced in frequency and in novel areas of my body including where the "sun does shine".
After ~ 30 years of managing this disease, it appears the MF has now become more aggressive. At 78 years of age, I am otherwise quite healthy. I will see my MF dermatologist in December 2025.
Thank you so much.
May you gain your skin health back by improving your immune system.
Have you tried metabolic therapy with metformin, berberine, membendazole and ivermectin?
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Yes, I continue with phototherapy and apply steroid cream to lesions. However, I cease steroid treatment as soon as particular lesions become less "angry" in appearance, ie, begin to fade.
I also limit phototherapy frequencies and exposure times when overall lesions begin to fade. I am experiencing the side effects of long term NB-UVB treatments, ie, photoaging, xerosis, actinic damage, pruritis and photocarcinogenesis (only basil cell so far).
I have been diagnosed with MF stage 1a phase since January of this year and started phototherapy in March and I have it three times a week. Recently when I saw my dermatologist oncologist he decreased it to twice a week. There are sometimes some patches that come up and ai treat it with a steriod cream and seems to be working. My advice is to eat a healthy diet avoid processed food as much as possible, manage your stress and do things that bring you joy and be with people that support you in this journey.
Thank you for the info. What precisely is the appliance you use which has narrow band UVB?
What do you think of UVB infusions?
Thank you so much.
May you gain your skin health back by improving your immune system.
Have you tried metabolic therapy with metformin, berberine, membendazole and ivermectin?