I understand that SJS patients can get Non-Hodgkins Lymphoma. How common is that? Does anyone here have it also? How can you tell??
jpd
http://www.mayoclinic.org/non-hodgkins-lymphoma/diagnosis.html
It's about a 5% chance in SjS patients, and is most typically seen in those with weak/supressed immune systems. It most often manifests as a MALT (Mucosa-Associated Lymphoid Tissue) Lymphoma.
As far as being able to tell if you have it, no idea.
Hi JPD,
I'm an 11 year survivor of Non-H lymphoma. It is found in lymph nodes in the neck, groin, chest, and other places. Mine was a mass in back of the abdomen. Your dr might check for it if you have an obvious lump that doesn't go away. Symptoms are vague - fatigue, weight loss, night sweats, itching - things that could occur anyway. You are not likely to have nhl just because you have Sjogrens; there is only a little larger chance, so don't lose sleep over this. Those of us who do get it tend to have low grade (slow growing,) and that is treatable. I hope this helps!
Cheryl
Hi jpd,
I was diagnosed with extra-nodal non-hodgkins MALT lymphoma in the lacrimal gland in November. My eye socket was very swollen and deformed, the mass was causing double vision, eyeball protrusion, pain when looking to the outside and up, and I had a chronic sensation of something in my eye. The following article shows Psuedo lymphoma but the pics of the ladies is what my eye was looking like too.
http://www.mayoclinicproceedings.com/content/82/6/692.full (http://www.mayoclinicproceedings.com/content/82/6/692.full)
I also noticed a small mass about the size of a pea above my eyeball in the outside corner. At my eye exam in August the doc could see the gland when she raised the lid. If you notice changes, especially one sided, you should bring it up with your doctor.
In SJS patients it occurs most commonly in the parotid glands but as cheryl mentioned it is still a very rare subset of non-hodgkins lymphoma. Even the orbital oncologist debated putting me through a biopsy since it is so rare and SJS swelling is much more likely but a tissue sample is the only way to diagnose lymphoma. I also have a enlarged and firm left parotid but the PET scan showed that is only benign cystic changes from sjogrens.
My rheumy was shocked the biopsy came back positive. In twenty years at a major research hospital I'm her first patient with it. I've had difficulty finding anyone one online and I've been on the Leukemia and Lymphoma forums, the MALT Yahoo group etc.