Anyone have Cutaneous T Cell Lymphoma?

@shufie
Hi. It is important to get a specific diagnosis of exactly what type of CTCL. It seems that the treatment depends on tissue type and staging. My dermatologist diagnosed it, then I saw oncologist who ordered a PET scan. I was diagnosed with 1A mycosis fungoides. I used UV light treatment. I see my dermatologist frequently and oncologist once a year. But everyone is different. Hope this helps

@penelopem! Oh my gosh, that is terrific news with the swelling going down so quickly. Thank you for sharing the success! I wasn’t sure I should have shared the tidbit as maybe coming across too preachy. But I know it worked so well for me that it was worth a try for you! Awesome! Hugs!

@loribmt I can't thank you enough for that helpful tip. I did as you suggested with raising my leg up above my heart and I actually had ankle, foot and leg again. Yay. It felt good not to have that tightness from the swelling. Excellent advice, thank you sooo much! 🤗

Hi @penelopem. I didn’t realize that either! When told to elevate my leg, I just thought it meant putting it up on something like a foot stool! Nope! To properly elevate the foot/ankle to decrease swelling, it needs to be propped above the heart! No doctor has ever mentioned that detail before. Even for sprains or any edema, it needs to be above the heart. Took me 7 decades for that little tidbit. 😂.

Once I learned that, I would rest for 20 min or so with my leg up on the back of the couch almost vertical. Good time to nap or read a book. I’d try to repeat that position every few hours and was impressed how quickly things normalized.

Best wishes for a speedy recovery for you and I hope this helps with the ‘stump’ feeling…cuz that’s what I felt like with my one beefy foot. LOL.

@loribmt Thank you for the tip. I did not realize it should be elevated above my heart. I am excited to try that so I'll have a normal sized foot and a leg again.😊

Hi @shufie, Welcome to Mayo Connect. I’m so happy you found this discussion since your son was recently diagnosied with CTCL. It can be comforting being able to speak with others going through the same experience. ☺️
What have his doctors discussed as far as treatments for him?

Hi @penelopem I’m so glad your first appointment went well! Thanks for the for the update! One down, three to go and then you can move on!! ☺️
Not sure if this will be helpful but I had an infection on my foot last summer. While undergoing treatments, I thought I elevated it as directed. Found out I literally needed to elevate my foot above my heart for it to be effective. So, I’d lie on the sofa with my leg propped up onto the back. It made all the difference in the world with reducing swelling and letting the healing process to work. Thought I’d toss that out there for you!
Keep me posted! ☺️

My son has recently been diagnosed with CTCL. I am very interested in treatments that will be used. Currently his skin is a vivid, red and covered with scaly skin that he continuously sheds.

My son has recently been diagnosed with CTCL. I am very interested in treatments that will be used. Currently his skin is a vivid, red and covered with scaly skin that he continuously sheds.

@loribmt Good morning Lori, I wanted to update you on my first round of radiation. Even though they explained the treatment to me in my initial mapping, I wasn't really sure what to expect. The plastic boot they had made for my foot and lower leg was a much tighter fit this time as the tumors now seem to be affecting my circulation and causing only that leg to swell. (It's been about 3 weeks since the initial consultation) They were finally able to snap it on place, re-mark everything, and complete the treatment. It did get a little warm on my skin, but nothing unbearable. It could be my imagination, but I did feel within the hour a horrible metallic taste in my mouth, as well as it becoming as dry as the Sahara desert. All and all though, this was doable. I have 3 weeks of this and I am feeling very positive about treatment and results.