Dr. Vin had set me up with an appointment with Dr. Koff, an Emory Hospital oncologist who specializes in lymphoma. Wendy and I went there today. She was very thorough, and she also had the advantage of having all the data in from all of my tests. Again, very positive on my prognosis. There are alternatives if I have some stubbornness due to the double expressor, but she isn't even all that sure that I have that. The fact that I responded so well to the first infusion is huge. It's a great sign that will continue, and that we're on the right track with R-CHOP.
I don't know what to expect with the next 5 infusions. If they are all pretty much like the first one, this will be very manageable. They could get increasingly more intense. Everyone has a different experience.
Right now, my only real symptoms are stomach aches. Not nausea, just more like a sharp pain. I can tell my strength is not at 100% during workouts, but I am still able to work out.
Pretty much good news all the way around since my initial update. We spent about a month determining what my exact diagnosis is, and during that time, all my Oncologist could tell me was that I was “somewhere in between” regular B-Cell Lymphoma (80% remission rate after first round) and Double Hit B-Cell Lymphoma (30% chance you’ll live 2 years).
With all the evidence back now as well as a second opinion, and the fact that I had a very positive reaction to my first infusion (of six); things are looking a lot closer to the upper end of that prognosis. I didn’t realize how sick I was until the chemo immediately made me feel so much better. Not sure how unusual that is, but it was just time for me to get started. I was feeling like I was coming down with the flu every night, and the window of time I had where I felt good during the day was getting smaller every day. I literally woke up the next morning on top of the world.
If this was track practice and we were warming up with a mile around the track, I wouldn’t even have a lap in yet, but so far so good.
Went to see Dr. Jonas, an oncologist who is part of Piedmont Cancer Institute (Piedmont Hospital). He explained things much more clearly. He agrees with the path we're taking with R-CHOP, and sets my prognosis pretty high. Dr. Jonas was very reassuring, and he is also affiliated with MD Anderson, so he can collaborate with them if needed.
First chemo was today. It was kinda surreal. Was there all day, and the worst part was probably all the Benadryl they gave me. That and just the waiting to see how my body reacts to the poison. So far so good.
I had my chemo port installed yesterday. My lifelong buddy, Al Brown, took me over there. It was pretty easy, but once I got home, I ended up sleeping for about six hours. I start chemo tomorrow. Right now, I get really tired at night - some time between 5:00 and maybe 9:00 at the latest. This includes aches and chills, generally feeling like I am coming down with the flu. The cough also returns. Sleep involves soaking a shirt or two with sweat, but waking up generally feeling pretty good, if not normal. I am expecting that tomorrow, after my first infusion, I will actually feel better. That will change as the chemo builds up in my system, but looking forward to getting out of this current cycle I am in.
Go Braves! (Game 6 tonight, with the Bravos up 3-2).
Spoke to the oncologist yesterday, and the 4:00 session was extremely disappointing. We felt like the first time he was reading the report was right there in parallel with our conversation. Wendy and I rapid-fire questioned him and he was totally caught off guard.
He called back later on that evening around 8:00 pm, and had is plan together much better. He conferred with a colleague at Emory. They went through all of the smears and bloodwork and biopsy data, and they do not believe this will end up being "double hit", which has a very brutal treatment regimen and a pretty dismal prognosis.
They also believe because of my fitness level, age, bloodwork, and the fact that the spread has been very localized so far, they are going to treat this with R-CHOP, which is the regular protocol that has very good results with DLBCL. They're still saying double expressor, but anticipating similar results for me in my case, regardless. There are certain medicines that can be aded to the chemo to target the DE.
I get my port put in on Monday, and start chemo on Wednesday of next week.
October 21st (evening)
Learning the definition of a two-word phrase: "double expressor". Apparently, when you put those words in front of a diagnosis for DLBCL, it presents new challenges and changes the prognosis. We are not able to see the oncologist until Tuesday, so this is all just from our internet research. Of course, nothing published on the internet is current, so hopefully we will hear about some new developments on Tuesday.
I have really been optimistic to date. Haven't really had to try. Statistically, I knew this was most likely something that I would survive. I knew there was a hard road ahead, but now, this is completely new territory.
October 21st (morning)
The diagnosis is in. I have Diffuse Large B-Cell Lymphoma (DLBCL). It's the most common type of lymphoma. 1 in 3 lymphoma cases are DLBCL. Prognosis is good. You can read more about it here: https://www.cancer.org/cancer/non-hodgkin-lymphoma/about/b-cell-lymphoma.html
So I had a bone marrow biopsy last Thursday, and then yesterday I had surgery to remove some lymph nodes in my neck to be sent out for biopsy. This is all to determine what type of lymphoma I have. There's a small chance it's some kind of rare infection, but the oncologist is pretty sure it's some kind of lymphoma. Bone marrow biopsy was a piece of cake. Yesterday was pretty rough. They put me all the way under for the first time in my life. We should know what we're looking at by end of week. We got an early copy of the bone marrow report and it appears to be negative. The oncologist felt that it was highly unlikely that it was in my bone marrow, so this was just erring on the side of caution.
The biopsy results were inconclusive. Still don't have an official diagnosis. They're suggesting maybe taking out a lymph node. The likelihood of lymphoma still remains. Feels like I just lost about three weeks. Very frustrating.
I may get the pathology results from my biopsy as early as tomorrow. This would be on the patient portal. My consultation with Dr. Vin is set for Friday.
I am OK. I feel great, actually. I am just trying not to think about it too much. There's nothing I can do about it at this point.
I had my biopsy today. They were able to go through my neck and use local anesthetics to get to my lymph nodes. Whatever is in those is the same that's in my spleen, so this was pretty easy compared to what it could have been.
The oncologist (Dr. Vin, Atlanta Cancer Center) did a blood panel on Thursday of last week, and we got those results. They were encouraging. Nothing crazy out of wack.
After the CT scan Friday before last, my GI doctor saw some concerning spots on my lymph nodes, lungs, and spleen, and ordered a PET scan. So I had that done today at 7:00 am, and the doctor called me at 2:00 pm same day. He felt that the PET scan was consistent with lymphoma, and wanted to get me in to Atlanta Cancer Center right away.