← Return to Primary Cutaneous Gamma Delta T Cell Lymphoma

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@laurie9434

Hi, I was recently diagnosed with Gamma Delta Cutaneous T Cell Lymphoma. I only found out after being sent to the infectious disease doctor for an unresponsive case of oral/esophageal Candida last August. The swab of my mouth came back as a rare type of Candida, one usually found to have an underlying immune problem. Lots of blood tests later, and 4 months of daily infusion therapy to try and clear up the Candida ( which we still haven't done, it keeps breaking through the 8 anti-fungal pills a day). In December, I had a rash in a skin fold, so the ID doctor thought..ok. let's punch biopsy this and see if something is hiding from us. Yes, it was. That's when the diagnosis came back. I was sent to a local oncologist who fully admitted this isn't something they deal with because it's so rare. I am being sent for a Pet Scan and have an appointment March 21st at Moffitt Cancer Hospital. Longer than I'd like. I can't seem to find the proper information about this Gamma/Delta CTCL. I can't even get anyone where I live to explain it to me. I don't really have any lesions, I have chronic headaches, massive brain fog, night sweats, nausea, hideous exhaustion and this ridiculously chronic Candida infection we can't get rid of. I also have Epstein Barr Virus which I know can play a part. Can anyone help? It's like walking around in the dark without a flashlight.

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Replies to "Hi, I was recently diagnosed with Gamma Delta Cutaneous T Cell Lymphoma. I only found out..."

Hi @laurie9434, having a rare cancer it can be hard to find others to connect with. I hope @cmahan10 and @dmahan26 return to share more with you.

Moffitt is a good cancer center. I'm sorry that you have to wait. If it is a possibility for you to go to Jacksonville, you can inquire about getting an earlier appointment. Here's where to inquire http://mayocl.in/1mtmR63

Are you currently taking anything to help manage the symptoms until your appointment? Have treatment options been discussed with you already or not until your appointment at Moffitt?