I was diagnosed late last year. I was stage 1B. My dermatologist ordered light therapy due to the number of lesions. I was approved for 72 treatments. First 4 weeks I had 3 a week and then lowered to 2 a week. Spots are fading. At this point, I will complete the treatments and then, hopefully, will be in remission. My doctor assured me I would die WITH this disease, not FROM it!
Colleen Young, Connect Director | @colleenyoung | May 22 10:43am
Welcome @josettecedo, as you probably already read or been told, mycosis fungoides is a type of cutaneous T-cell lymphoma (CTCL). CTCL is a group of rare blood cancers that cause changes in your skin, like itchiness, rashes, plaques or tumors. Although mycosis fungoides affects your skin, it's not a form of skin cancer because your T-cells — not skin cells — become cancerous.
Jose, you're asking good questions about what to expect. Many treatments are available to treat cutaneous T-cell lymphoma. Which treatments are best for you depends on your particular situation, including the extent or stage of your lymphoma.
Do you know the stage of your lymphoma? Do you have a treatment plan already?
Hi Jose. I was diagnosed last year with Stage 1A. I am followed by dermatologist and hematologist oncologist. I have a light box in my house and do treatments three times a week. It only takes about 5 minutes to complete the treatment. My doctors believe I will always need this treatment. I see my dermatologist frequently and he looks for more lesions and cuts new things out but I have no new lesions. I know there is chemo which is in pill form that is well tolerated but if possible I will stick to the light box. You can ask any questions and I will try and provide useful information.
Shari, how big is your lite box? My husband's derm has talked to him about getting one for our home. It's about 35 miles to our provider and then 35 miles back home. The provider is waiting for her new box to come in but it is taking forever. My husband's skin was really responsive to lite therapy. Since he hasn't been getting any treatment his patches are rapidly spreading. We were concerned as to how much space the home lite box would take up/the bulbs/repairs. Hope you don't mind me asking. Thanks so much.
Shari, how big is your lite box? My husband's derm has talked to him about getting one for our home. It's about 35 miles to our provider and then 35 miles back home. The provider is waiting for her new box to come in but it is taking forever. My husband's skin was really responsive to lite therapy. Since he hasn't been getting any treatment his patches are rapidly spreading. We were concerned as to how much space the home lite box would take up/the bulbs/repairs. Hope you don't mind me asking. Thanks so much.
Welcome to Connect @aloha2012. It’s encouraging to read that your husband is having such positive results from the light therapy treatments. But I can imagine it gets pretty inconvenient having to travel frequently when you could achieve the same results at home.
I’m just going to tag @shari715 to make sure she gets notified of your post. Hopefully she can give you the information about the light box she has at her house so you can reduce those road trips!
It’s concerning that your husband’s provider is having to wait for their new light box before treatments can continue. Any news about how long that will take?? Is there another dermatology office in your area that could possibly take over the treatments?
Hi. So I have a light box from National Biological 216-831-0600. They are based in Ohio. My doctor wrote a prescription and then the insurance company had to approve it. It did cost me a bit of money. It was delivered to my house with instructions but it was a flat box. I needed help putting it together because I am not handy. It is about 6 ft 5 in tall and about 2 ft wide. It is against a wall and does not take up much space. I have used it for over a year and have not had to change the actual lights. It takes about 4 minutes to complete the treatment three times a week. I am so happy to have it in my house. If you have questions please feel free to ask.
Welcome to Connect @aloha2012. It’s encouraging to read that your husband is having such positive results from the light therapy treatments. But I can imagine it gets pretty inconvenient having to travel frequently when you could achieve the same results at home.
I’m just going to tag @shari715 to make sure she gets notified of your post. Hopefully she can give you the information about the light box she has at her house so you can reduce those road trips!
It’s concerning that your husband’s provider is having to wait for their new light box before treatments can continue. Any news about how long that will take?? Is there another dermatology office in your area that could possibly take over the treatments?
08-12-2024
Hi Lori, yes he was referred to another location but he wasn't happy there. We may consider getting a box for home........depending on what I find out.
Hi. So I have a light box from National Biological 216-831-0600. They are based in Ohio. My doctor wrote a prescription and then the insurance company had to approve it. It did cost me a bit of money. It was delivered to my house with instructions but it was a flat box. I needed help putting it together because I am not handy. It is about 6 ft 5 in tall and about 2 ft wide. It is against a wall and does not take up much space. I have used it for over a year and have not had to change the actual lights. It takes about 4 minutes to complete the treatment three times a week. I am so happy to have it in my house. If you have questions please feel free to ask.
08-12-2024
Thanks for answering so quickly. How far out from the wall does it protrude? I will see if there is a way I can view one on the National Biological site. Glad you are happy with yours.
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I was diagnosed late last year. I was stage 1B. My dermatologist ordered light therapy due to the number of lesions. I was approved for 72 treatments. First 4 weeks I had 3 a week and then lowered to 2 a week. Spots are fading. At this point, I will complete the treatments and then, hopefully, will be in remission. My doctor assured me I would die WITH this disease, not FROM it!
-
Like -
Helpful -
Hug
2 ReactionsWelcome @josettecedo, as you probably already read or been told, mycosis fungoides is a type of cutaneous T-cell lymphoma (CTCL). CTCL is a group of rare blood cancers that cause changes in your skin, like itchiness, rashes, plaques or tumors. Although mycosis fungoides affects your skin, it's not a form of skin cancer because your T-cells — not skin cells — become cancerous.
In addition to the helpful post from @beeclee, I'm tagging other members like @shari715 @dws1968 @sherriesalinas @mkmann @bradders @kbirt who was also have Mycosis Fungoides.
While we wait for others to chime in, you might also be interested in this related discussion:
- Anyone have Cutaneous T Cell Lymphoma? https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
Jose, you're asking good questions about what to expect. Many treatments are available to treat cutaneous T-cell lymphoma. Which treatments are best for you depends on your particular situation, including the extent or stage of your lymphoma.
Do you know the stage of your lymphoma? Do you have a treatment plan already?
Hi Jose. I was diagnosed last year with Stage 1A. I am followed by dermatologist and hematologist oncologist. I have a light box in my house and do treatments three times a week. It only takes about 5 minutes to complete the treatment. My doctors believe I will always need this treatment. I see my dermatologist frequently and he looks for more lesions and cuts new things out but I have no new lesions. I know there is chemo which is in pill form that is well tolerated but if possible I will stick to the light box. You can ask any questions and I will try and provide useful information.
-
Like -
Helpful -
Hug
2 ReactionsShari, how big is your lite box? My husband's derm has talked to him about getting one for our home. It's about 35 miles to our provider and then 35 miles back home. The provider is waiting for her new box to come in but it is taking forever. My husband's skin was really responsive to lite therapy. Since he hasn't been getting any treatment his patches are rapidly spreading. We were concerned as to how much space the home lite box would take up/the bulbs/repairs. Hope you don't mind me asking. Thanks so much.
Welcome to Connect @aloha2012. It’s encouraging to read that your husband is having such positive results from the light therapy treatments. But I can imagine it gets pretty inconvenient having to travel frequently when you could achieve the same results at home.
I’m just going to tag @shari715 to make sure she gets notified of your post. Hopefully she can give you the information about the light box she has at her house so you can reduce those road trips!
It’s concerning that your husband’s provider is having to wait for their new light box before treatments can continue. Any news about how long that will take?? Is there another dermatology office in your area that could possibly take over the treatments?
-
Like -
Helpful -
Hug
2 ReactionsHi. So I have a light box from National Biological 216-831-0600. They are based in Ohio. My doctor wrote a prescription and then the insurance company had to approve it. It did cost me a bit of money. It was delivered to my house with instructions but it was a flat box. I needed help putting it together because I am not handy. It is about 6 ft 5 in tall and about 2 ft wide. It is against a wall and does not take up much space. I have used it for over a year and have not had to change the actual lights. It takes about 4 minutes to complete the treatment three times a week. I am so happy to have it in my house. If you have questions please feel free to ask.
-
Like -
Helpful -
Hug
3 Reactions08-12-2024
Hi Lori, yes he was referred to another location but he wasn't happy there. We may consider getting a box for home........depending on what I find out.
Thks so much.
-
Like -
Helpful -
Hug
1 Reaction08-12-2024
Thanks for answering so quickly. How far out from the wall does it protrude? I will see if there is a way I can view one on the National Biological site. Glad you are happy with yours.
Would like to join mycosis fungoides group
Hi would like to connect to anyone with MF