Nov 11, 2013 - 10:02 am
First off I apologize to you guys for being away from the board for so many MONTHS :( I got back from my 2nd trip to the Mayo Clinic mid-July and the one year anniversary of losing my 38 year old brother to lung cancer came. I didn't handle that anniversary well & kind of shut down for awhile... I hope this finds all of you doing well, I've been away but you have all remained in my prayers!!
Mayo Clinic ruled out pretty much everything EXCEPT lymphoma, some of the blood tests that are "off" I guess are commonly "off" in lymphoma patients. They did a repeat PET and all of the original nodes that showed hypermetabolic activity were ALL still reactive. That makes it less likely that they were reactive from some unknown illness since the PET scans were almost 6 months apart. Since most of them are in my chest the oncologist there wants me to have another CT in December to see if they're still the same size or if they are growing. He said if they've grown then he'll want to have them removed. I guess if they grow at all they're going to cause issues with my heart or lungs because of where they are & how big they already are. My main doctor at Mayo also said if some of my blood levels aren't better after the iron and vitamin d therapy I've been on then we'll have to do a bone scan or bmb. So I've been waiting... Still exhausted, still getting night sweats, but hanging in there. They did tests to see if I'm bleeding from anywhere in my digestive system (including stomach/small intestine biopsy--fun!) to explain the anemia, they did sleep apnea tests to see if there's an explainable reason for my fatigue, they did TONS of blood work, I saw a genetic counselor to see if my family 's strong cancer history shows higher risk for lymphoma (it doesn't--they're all linked, but not to lymphoma), a pulmonologist to make sure the spots on my lungs weren't anything to worry about (considering my brother's age when he died), you name it I think they tested it. So they were thorough to say the least.
I definitely recommend the Mayo Clinic to anyone with a medical condition they can't quite get answers for. I'm still in limbo but they ruled out a LOT and that was worth going for. Somehow knowing for sure what it's not is helpful to me. Mayo runs like a well oiled machine. I downloaded their app, so every blood test, scan, etc., was available for me to view in a record amount of time. Some of the blood work was posted within hours & all of my other tests were posted by that evening. If anyone has specific questions about my two visits there, please message me & I'll be glad to tell you anything you'd like to know. (They had to order the stuff for the PET & I couldn't extend my first trip to wait for that so I went back in July, otherwise it would've all been done in one visit)
Sorry for the lengthy update, I apologize again for being mia and not checking up on you guys. It wasn't easy losing my younger brother, but I didn't realize how much harder the 1 year anniversary was going to hit me.