On Sunday, my friend Jana and I came to Houston. This morning I had an appointment with a Lymphoma Specialist at MD Anderson. If you're not familiar with MD Anderson, I'll just summarize it by telling you they are ranked #1 in treating cancer. The have an amazing reputation, and I can tell you that it is well deserved.
Today I first met with a lady for registration. Then a volunteer came over to explain just what would happen. He was really knowledgeable and kind. I then reviewed my history with a nurse. She found it unbelievable that I had not had a PET scan or at least a follow up CT scan. She was really pretty and she reminded me of one of the young women that was in my class when I lived in Plano, Texas.
When the nurse left the room, she told me that the research assistant would come and then I could wait in the waiting room for the Dr to be ready. However, about 1 minute later, the doctor came in. He had reviewed all my records and made notes on them. (Isn't that amazing?)
He was also surprised that I had not had a PET scan or a follow up CT scan. He was able to feel the lump on my neck and also saw a couple of other spots on my back that may be new "lesions." He said he would agree with the diagnosis of marginal lymphoma and would originally have put it at stage 4.
He ordered all new scans and some new tests as well. We discussed the "what if's." If it's not the Lymphoma that is causing the symptoms, it could be autoimmune related. If it is the Lymphoma, it could be in "partial remission", meaning that it is essentially just waking up, or it could be active. It could also be another type of cancer.
To determine what's going on, he's ordered a bunch of tests. Blood work, EKG, Echocardiogram, Chest Xrays, CT scans, mammogram, neck biopsy, bone marrow biopsy, and PET Scan. He'd also like a dermatology, hepatalogy, and gastroenterology consult.
We discussed briefly that he will tolerate 1, maybe 2 relapses before he refers me for a stem cell transplant. Also, they have a clinical trial that is opening in November that is specifically for recurring marginal lymphoma.
Obviously, it doesn't make sense to spend a lot of time dealing with the what if's. It's much better to just get the information we need. So, let the testing begin!
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