Primary Cutaneous Gamma Delta T Cell Lymphoma

Hello @cmahan10 and welcome to Connect. There are many types of T-cell lymphomas and from what I’m finding out with my search is that Gamma Delta T Cell Lymphoma is indeed a rare bird. But as my mom often said, “There’s nothing new under the sun”, so it may take a little time but there will be others who see this post and may be able to share their experiences with you.

I know how frightening it is to get a life threatening diagnosis. It can clip you right off at the knees. May I ask how was this diagnosed? What has your wife’s specialist discussed as far as treatments?

It was diagnosed through punch biopsies done to my legs and bloodwork. I am still undergoing diagnostic/staging scans before I meet with the specialist.

Hi @dmahan26 Welcome to Connect! Thank you for joining into this conversation about Gamma Delta T Cell lymphoma. It’s such a rare disorder that it’s really helpful to find someone else with the condition.
Your diagnosis must be fairly recent. What other tests are you having besides the punch biopsies? Are you having PET scans?

I have a pet scan this week. Biopsies came back last week. It’s all very new

This is all very new for you and I’m sure you feel a bit lost with not having much information about your diagnosis. I hope it helps you to not feel so alone in this knowing there is another member, @cmahan10, whose wife was recently diagnosed with the same form of leukemia.
I’m here for you too. We all need a lifeline… I don’t have any experience with this particular condition but I am an “almost 5 year” survivor of a very aggressive leukemia too so I know the range of emotions you’re going through.
Best wishes for good news with your PET scan this week.

You mentioned you’ll also be seeing a specialist. I’m not sure if this is your first visit with this doctor or not but I found a helpful video for you with tips on meeting a specialist to help you prep for a successful visit. https://video.search.yahoo.com/search/video?fr=yfp-t-s&ei=UTF-8&p=meeting+a+new+specialist.+mayo+clinic#id=1&vid=9b9e2a4dff6dda56d7d1d91433c8ebc9&action=click

Will you share with me what you find out?

Dmahan26 is my wife. We are both searching

I''d like to add my welcome to both of you @cmahan10 and @dmahan26. I love it when people use Connect together to find answers. While you're sharing the experience, it's different for the patient and for the caregiver, each with a unique role and perspective.

How did the PET scan go? When do you meet with the medical team to review all the diagnostic tests and put the pieces of the puzzle together into a treatment plan?

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.

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?

Hi! Thank you for responding. I just had my PET Scan this week, awaiting the follow up at the local oncologist. That's at the end of this month. I've been switched to a stronger Anti-fungal which I take twice a day...but, that's only to try and keep the Candida we can't get rid of in check. I am not receiving any treatment for the Lymphoma as of right now. I think they aren't going to do anything for me until I'm seen at Moffitt. Why we can't get rid of the Candida is the big question. The ID doctor, I believe, is now going with until they treat the lymphoma, the Candida is not going away. I haven't seen any info on people who were diagnosed because they had a resistant Candida infection. I don't even know what that means for the diagnosis, much less the treatment. Now, in hindsight, I have had weird rashes for a few years, including one that started on my upper back went down under my armpit and across my chest. It was at the beginning of Covid and I had a televisit and said to have Shingles. I'm beginning to think that was not Shingles. The rashes have all been so weird that I have documented them all with photos. I keep getting a red butterfly rash on my face, then it goes away. Needless to say, every blood test known has been done...it wasn't Lupus. Sorry I'm dragging this on. it's just so frustrating!!