T-cell lymphoma (CTCL) / Mycosis Fungoides (MF)

Hi everyone, for context my boyfriend who is now 31 is in remission for a second time after a stem cell transplant in Jan 2024 for Hodgkin Lymphoma.

About 3.5 weeks ago, he noticed a small patchy red rash on his right arm, it was a bit itchy and sore, now it's gone down slightly, still red but not as aggressive as it was. He's been feeling quite fatigued and had itchy armpits but his lymph nodes are not swollen. He met his consultant about these symptoms, they have done a blood test which is normal and now he's waiting for a PET scan.

Last night he has noticed another small (*** burn looking) mark on his left arm, near the elbow. After doing some research and googling, we came across MF and CTCL. This rash looks pretty much identical to the ones online, in the early stages. We read that MF is unlikely to be noticed in blood tests or PET scans until it develops or spreads. We're both now extremely worried.

From what I can understand, the best thing to do next is to have a PET scan, a skin biopsy and see a dermatologist. MF is usually mistaken for psoriasis, eczema, or contact dermatitis, so what is the best thing to do if we're still concerned after the PET scan?

It's worth mentioning, I often have contact dermatitis on my hands so we've been using the ointment that clears mine up and it's still on his arm. 

Does anyone have any experience of this?

Thanks

  • I can't edit the post but this should say (cigarette burn looking). 

  • Offline in reply to SBNS

    Hiya, 

    Hoping your boyfriend is okay..?.  I'm at GP tomorrow with similar problems. Hope they listen to me.  I also read that this is hard to diagnose.

    Best wishes

    Yvette

  • Offline in reply to MilosMum

    Hi Yvette, he's since had blood tests and a PET scan that both show all clear and ongoing remission. The rash has cleared up, now it's flat, slightly pink, looks more like a birth mark. The mark on his elbow didn't develop into a rash thankfully and that's now gone. 

    His consultant said if something was wrong, it would likely show up in the scans and she's confident she can't see anything. If he's still concerned or another rash appears, he needs to contact his GP to be seen by a skin specialist.

    He had radiation during treatment and this can sometimes cause rashes, dry skin and other skin issues. We're going to keep an eye on it, if it comes back I will push him to see a doctor. 

    Hope your appointment goes well, let me know. What are your symptoms?