Primary Cutaneous Gamma Delta T Cell Lymphoma

Yes I was diagnosed with the same problem thing I had the biopsy done tomorrow I have an appointment for more blood work and a bone marrow biopsy

And they want to send me to Boston because the cancer is so rare they don’t have the kind or specialist that can take care of me.

Hi @cwhitney, I can tell you’re anxious about having been diagnosed with a rare type of lymphoma. It can sure help with peace of mind to be able to speak with someone else who has the same condition. So welcome to Connect. Like you, @graycoose has been recently diagnosed with primary cutaneous gamma-delta t-cell lymphoma and he has just started treatment to get his condition under control.

Having a firm diagnosis is the first step to getting better. So I wish you well on your appointments today! You won’t likely know the complete results of your bone marrow biopsy for another week or so. Will you let me know what you find out please?

Not sure if im posting this in the correct spot. How are the primary cutaneous gamma-delta t-cell lymphoma peeps? I've been wanting to check in. We have completed the ICE chemo and will be getting a BMT the 14th. He had 4 matches, dr went with the 21 yr old male somewhere in the US. Hopefully we will be able to thank him some day. Since this is such a rare disease, he was asked if he would be apart of the research, maybe everyone who gets this gets asked? They will be taking blood and tissue samples to Mayo to be studied.

Good morning, @graycoose! Oh golly, congratulations to your husband moving past his last cycle of chemo. It’s a relief to get that portion behind him, I’m sure. Now to the next leg of the journey.
He’s fortunate to have 4 potential matches. That gave his doctor some options. I remember the moment my doctor showed me my DNA twin…it was so fascinating. My donor was also a young male, 20, from the US. It’s been such a successful transplant and I owe that young man my life. However, even after 5 years, he has chosen to remain anonymous. It’s ok, as much as I’d like to meet and thank him in person, he owes me nothing. But I owe him everything. So I do hope your husband can meet his donor at some point. In the US you can initiate contact after one year.

Since you both will be part of the bone marrow transplant family here in Connect, I’d love to invite you over to this discussion I started a couple years ago. You’ll be able to chat with the rest of us who have had our BMT for one reason or other… you’ll meet @katgob @mary612 @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @ tkidd51 just to name a few.

Here’s the link:
My bone marrow transplant story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope you’ll join us over there! Do you have any specific questions about the transplant? As the caregiver, you have your hands full too with all the added level of stress and responsibility. How are you doing?

Hi @graycoose! I haven’t seen an update from you! How is your husband doing? Was he able to go through with his transplant on Aug 14th?

I hope you’ll join me here to give an update on your husband’s transplant!

My bone marrow transplant story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
How are you doing through this process?

Things are OK, it's been a big adjustment for both of us. He seems to be getting through it with little complications, he did have a transfusion for low hemoglobin the other day. Besides the boredom and nausea he's doing good.