Swollen lymph nodes in abdomen with nausea, belly and back pain

[Janet_wyatt]

Nephrologist thinks Post Transplant lymphoproliferative disorder. or PTLD. Im seeing oncology next week after a pet scan. Anyone have or had this? 14 years post Transplant

[SOct91]

Yes, I’ve had PTLD. I got it around 10 years post transplant when I was in high school combined with/because of mono. I was so so sick. They were debating about doing chemo and I was terrified, but ultimately under close direction, they stopped my immunospression temporarily for my body to fight on its own. Then they switched me from Neoral to MMF which I’m still on. At the time they removed my tonsils and adenoids. My lymph nodes still seem to be overreactive and I’ve had to get them ultrasound due to inflammation from all the Covid shots/ I was worried I had PTLD again. Talk to your doc about options and I hope it’s not too bad for you. Keep me posted.

[Janet_wyatt in reply to SOct91]

Thanks for your response, Sounds reassuring. PET scan tomorrow and Oncologist Friday

[Janet_wyatt in reply to Janet_wyatt]

My PETscan got rescheduled, it is tomorrow and see the doctor Wednesday. Wondering if you had severe fatigue/ Pain? I am struggling terribly.

[Nate94]

Hi,

Yes, I finished 6 months of chemo for PTLD in April. I was diagnosed in July/August of last year. It showed up on a CT scan. So I also had a PET scan and then a couple of biopsies. My lymph nodes were enlarged in the peritoneal and mesenteric abdomen. The biopsies showed PTLD which in my case was an indolent type of B Cell Non Hodgkins Lymphoma. The chemo consisted of Rituxan and Bendamustine. After 3 chemo sessions my PET was good with only one lymph node still slightly enlarged. My CT scan in July was clear and I have another one scheduled in December. 29 years post transplant.

Let me know if I can answer any questions

My CT scans were without IV contrast because of my transplant fyi.

Just curious, how did they diagnose your swollen lymph nodes? Mine could not be felt by oral exam .

[Janet_wyatt in reply to Nate94]

Thanks for your response, I got two ER visits with severe right sided abdominal pain and back pain one on July and one on October. Both times I had a non contrast CT. The first time, small swollen lymph nodes and the second time, the lymph nodes were bigger and Transplant nephrologist thinks PTLD. PET scan tomorrow and Oncologist Friday

[Janet_wyatt in reply to Nate94]

I didn't get my PET scan yet, I was rescheduled, is tomorrow and see the doctor Wednesday. Just wondering did you have lots of symptoms ? Im struggling terribly with pain and weakness, barely able to work

[Nate94]

I’m sorry to hear about your pain and weakness. I did not have a lot of symptoms. I had some digestive issues and some minor stomach discomfort/ pain. Because of those issues, my digestive doc wanted a CT scan. That showed the enlarged lymph nodes and I was referred to an oncologist. He ordered bloodwork to see if something else could be causing the swelling and then the PET scan . The PET scan suggested Lymphoma.