Hello
I am not sure if this platform is ok to disclose information but would like to ask you if you tried Brentuximab IV and extracorporeal electrophoresis?
Alice
Hi @lav3, @mll and @josettecedo, I've moved your messages to this existing discussion group on mycosis fungoides (MF) so you can meet other members with the same condition which is a type of cutaneous T-cell lymphoma (CTCL). Members include @josettecedo@beeclee@aloha2012@shari715 and more.
Hi Josette. I have had CTCL - MF. Treatment depends on the stage of your disease. I have stage 1A. This is the first stage of the disease. I was diagnosed by a dermatologist and I am followed by oncologist as well. I see my dermatologist frequently 3 to 4 times a year. Because of the stage my treatment is UV light 3 times a week. I have a light box in my house so it is convenient. I am not on chemo or any other treatment. This does not mean I will not need chemo. Please feel free to ask other questions by replying directly to me.
Hi Josette. I have had CTCL - MF. Treatment depends on the stage of your disease. I have stage 1A. This is the first stage of the disease. I was diagnosed by a dermatologist and I am followed by oncologist as well. I see my dermatologist frequently 3 to 4 times a year. Because of the stage my treatment is UV light 3 times a week. I have a light box in my house so it is convenient. I am not on chemo or any other treatment. This does not mean I will not need chemo. Please feel free to ask other questions by replying directly to me.
@colleen young 11/2 year after with no symptom showing what do I do now? Cuz doctors have just told me to go on with life and just WAIT for it to come out again and this waiting is terrible
I have been told by dermatologist and oncologist that the UV treatment is to be used until it is not effective. The dermatologist says I will probably not need chemo and the oncologist says I will need chemo. I had a lesion on the back of my leg and the dermatologist cut it out and pathology made the diagnosis. I don’t worry too much as both dermatologist and oncologist stated I will die with the disease and not from the disease. Wait and see.
Hi Josette. I have had CTCL - MF. Treatment depends on the stage of your disease. I have stage 1A. This is the first stage of the disease. I was diagnosed by a dermatologist and I am followed by oncologist as well. I see my dermatologist frequently 3 to 4 times a year. Because of the stage my treatment is UV light 3 times a week. I have a light box in my house so it is convenient. I am not on chemo or any other treatment. This does not mean I will not need chemo. Please feel free to ask other questions by replying directly to me.
Shari 715, please tell me if electrophotophoresis was recommended.
That is when WBCs and RBCs get separated and the White Blood Cells get mixed with psoralen and get exposed to UVA light.
The UVB light therapy you are doing from home how did you learn how to do it?
Alice in San Francisco
I am not having electrophoresis. Other people may have this treatment. I know there’s chemo oral and a whole bunch of other stuff. I have a light box in my house which uses UV light. I have no idea how or why it works. I am not sure the MDs even know. All the CTCL are pretty rare. I think 30 thousand cases in US. I know that staging is important but that is about it. I don’t ask questions about this cancer because I had non-Hodgkin lymphoma ages ago and would like to know if there is a connection. There is also a negative connection between non-Hodgkin lymphoma and breast cancer. These questions cannot be answered either. I don’t worry about CTCL because it will not kill me.
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I’ve had MF since 5/23. So many things have happened to me. Would like to talk to someone who is going through the same as me.
Thank you,
Josette
Hello
I am not sure if this platform is ok to disclose information but would like to ask you if you tried Brentuximab IV and extracorporeal electrophoresis?
Alice
Hi @lav3, @mll and @josettecedo, I've moved your messages to this existing discussion group on mycosis fungoides (MF) so you can meet other members with the same condition which is a type of cutaneous T-cell lymphoma (CTCL). Members include @josettecedo @beeclee @aloha2012 @shari715 and more.
- Diagnosed with Mycosis fungoides. Don’t understand what to expect?
https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-mycosis-fungoides-dont-understand-it-and-what-t/
There are several treatment options available depending on the specific type of MF diagnosis. What treatments have been suggested for you?
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2 ReactionsHi Josette. I have had CTCL - MF. Treatment depends on the stage of your disease. I have stage 1A. This is the first stage of the disease. I was diagnosed by a dermatologist and I am followed by oncologist as well. I see my dermatologist frequently 3 to 4 times a year. Because of the stage my treatment is UV light 3 times a week. I have a light box in my house so it is convenient. I am not on chemo or any other treatment. This does not mean I will not need chemo. Please feel free to ask other questions by replying directly to me.
I got diagnose on Dec 2022 . So not long ago. But no staging because they said only the skin was involve
The skin lesions seem to have dissapeared after 1 year of phototheraphy. So our treatments seem to be the same. How did the disease manifest on you
@colleen young 11/2 year after with no symptom showing what do I do now? Cuz doctors have just told me to go on with life and just WAIT for it to come out again and this waiting is terrible
I have been told by dermatologist and oncologist that the UV treatment is to be used until it is not effective. The dermatologist says I will probably not need chemo and the oncologist says I will need chemo. I had a lesion on the back of my leg and the dermatologist cut it out and pathology made the diagnosis. I don’t worry too much as both dermatologist and oncologist stated I will die with the disease and not from the disease. Wait and see.
Shari 715, please tell me if electrophotophoresis was recommended.
That is when WBCs and RBCs get separated and the White Blood Cells get mixed with psoralen and get exposed to UVA light.
The UVB light therapy you are doing from home how did you learn how to do it?
Alice in San Francisco
I am not having electrophoresis. Other people may have this treatment. I know there’s chemo oral and a whole bunch of other stuff. I have a light box in my house which uses UV light. I have no idea how or why it works. I am not sure the MDs even know. All the CTCL are pretty rare. I think 30 thousand cases in US. I know that staging is important but that is about it. I don’t ask questions about this cancer because I had non-Hodgkin lymphoma ages ago and would like to know if there is a connection. There is also a negative connection between non-Hodgkin lymphoma and breast cancer. These questions cannot be answered either. I don’t worry about CTCL because it will not kill me.