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Anyone have Cutaneous T Cell Lymphoma?

Posted by cindylb @cindylb, Jul 28, 2017

Does anyone in the group have Cutaneous T Cell Lymphoma? I am waiting for an appointment with my oncologist (follow up for breast cancer) and am at possible risk for this cancer. I'd like to hear from anyone who has experienced these symptoms, how they got their diagnosis and what treatments they have or are having. Thank you.

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penelopem | @penelopem | 5 days ago
In reply to @loribmt "Hi @penelopem. I didn’t realize that either! When told to elevate my leg, I just thought..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

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.

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@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! 🤗

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Lori, Volunteer Mentor | @loribmt | 5 days ago
In reply to @penelopem "@loribmt I can't thank you enough for that helpful tip. I did as you suggested with..." + (show)
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@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! 🤗

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@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!

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penelopem | @penelopem | 5 days ago
In reply to @loribmt "@penelopem! Oh my gosh, that is terrific news with the swelling going down so quickly. Thank..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

@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!

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@loribmt Just an FYI, I think any advice/suggestion is very helpful. I didn't take it as preachy at all. The swelling, tightness was really bothersome. I can't tell you what a huge difference it made. Here it is almost noon and it has barely begun to swell. I'll be putting it up at lunch time and hoping to keep the swelling under control all day. Wonderful advice!

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shufie | @shufie | 4 days ago
In reply to @shari715 "@shufie Hi. It is important to get a specific diagnosis of exactly what type of CTCL...." + (show)
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@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

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@shari715
He had a light treatment that burned his skin and was painful.

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