Double hit non-Hodgkin Diffused large b-cell lymphoma (DH NHDLBL) recovery returns relapse?
Well, after finding and reading through this forum, I've gotta admit it's both refreshing and discouraging all at the same time. The length of the cancer fight some people have gone through is inspiration from the human spirit. Learning that I may "live" like this until death is, well, less than inspiring.
I found the forum because I was looking for resources over the weekend while the doctor's office is closed about side effects post-chemo and discovering death from the cure is about as common as from the disease. At least that's how it seems from the internet.
My discovery of the DHNHDLBL was the tumor adjacent to my right kidney. It started as simple discomfort while laying in bed at night. No troubles during the day. It progresssed as cancer does to a constant discomfort, the pain, then the pain became constant. So i went to a Gastroenterologist because I thought it was a digestive issue.
Had an ultrasound at about 9:30am on a Monday. By 11am, the GI doctor called and asked how fast I could go back to the imaging center for a CT scan.
I don't recall what day it was, but one night in the last week of May I was almost asleep and started getting shivers that I couldn't control. Called the EMTs and by the time they arrived, things had calmed down. Short version, all was normal. Apparently it's called riggers and not uncommon in cancer patients. The oncologist says it may have been from the cancer, anxiety, dehydration, or a combination.
Long story short, I was referred to Rocky Mountain Cancer Center & had a PET scan and bone marrow biopsy. The PET scan showed a 3cm mass next to my right kidney. I had the biopsy completed as well and confirmed it was DLBCL. They scheduled me for the following Tuesday to start 6 cycles of R-CHOP. I also had a port implanted on my right chest.
I went in the next Tuesday 31-May-2016 for my infusion and the doctor received the bone marrow biopsy that morning and it was determined that I had both DLBCL (tumor) & small cell (bone marrow), both double hit NHL with Myc & BLC2 mutations.
I was an over achiever in the world of cancer. The oncologist basically said I effectively hit the cancer grand slam in the bottom of the 9th inning in game 7 of the World Series all while down by 3 runs!!!
The oncologist asked if I could go to the hospital Thursday 2-June-2016, two days later. He said RCHOP didnt show good results over the longer term for DHDLBCL. He said a newer treatment called Dose Adjusted R-EPOCH showed much better results. The catch was that I'd have to stay in the hospital from Thursday-Tuesday, 5 days of chemo and Tuesday was Neulasta day.
Well, by golly, give me the best you got, Doc!!!!
Round 1-3 were no trouble at all. So non-eventful, I had to ask the oncologist repeatedly if it was working. My recovery was very predictable and quite easy. Go home Tuesday, sleep for 14+ hours, then 2-3 more days of blurry vision from the prednisone and a bit of neuropashy. In fact, it went so well that by the 3rd night of round 1, I couldn't even feel the tumor!
Round 4, a little more sleep and a little bit of bleh feeling for about 4 days. Then getting back to the "normal" feeling.
Round 5 & 6 were a bit more "bleh" feeling & in terms of neuropathy, it stuck around but steadily decreased until the next round.
Fast forward to September 15, 2016. I'm done with 6 rounds of poison to kill the disease that was going to kill me. We wait until 10-Octobe-2016 for the PET scan. Next day, results come back negative with a mild concern about the scar tissue that is regularly left behind. I'm told that is normal for lymph nodes post-chemo but it's possible but appears to not be any DLBCL tumor left behind.
The bone marrow biopsy takes place the following Monday, 17-October.
I go on a work trip from 24-October through 4-November and have no issues at all.
Tuesday 1-Novembe-2016 I get a call from the oncologist's nurse. Complete REMISSION!!!!!! YAY!
Now, the reason I'm here......... post-chemo side effects are FAR worse than those during treatment.
Things that are better: no neuropathy; cancer appears to be gone but may be back.
Things got much better from my discharge through just a couple days ago, Thursday 10-Novembe-2016. I'm laying in bed almost asleep when my breathing seems like it doesn't contain any oxygen. My pulse jumps, I'm getting dizzy, and riggers start up like the night I called the EMTs back in late May.
I call the EMTs and go for a ride. I'm having trouble controlling my body from the riggers. In the ambulance I nearly lose consciousness but hold on. He gives me oxygen and takes vitals. Heart rate is slightly low, 55 bpm. Nothing of concern but I still am having trouble breathing and my chest gets heavy.
We get to the hospital ER and they access my port and start IV fluid. My heart feels like it's trying to explode from my chest and I'm having a hard time breathing. Mostly the chest pain. I'm admitted and stay until Saturday.
They run every heart, lung, blood & infection test they have and everything is as ideal as it can be.
Thursday & Friday nights I'm back to 12-14 hours of sleep.
On Saturday before they discharge me, they give me Zofran and it makes me feel much better within 30 minutes.
Today, Sunday, I'm home but with post-chemo side effects like sore joints, trouble eating, diarrhea, sore muscles, and slight hints of the shakes, but ever so slight. They come and go. I don't seem to have much appetite.
It seems rather odd that such intense side effects are happening 8 weeks after treatment, to the day, this all happens. It's also been exactly 1 month since my PET scan. So it's possible the NHDLBCL tumor is back near my right kidney. Seems like what's going on
Then again, my experience seems so nominal when compared to so many others. I'm wondering if it is just anxiety. It appears that my digestive track is involved because I can feel any solid food leaving my stomach, goes across the bottom of my sternum, and down my small intestines. It's similar to before I was diagnosed but back then it just hurt, it didn't move with the food.
Any-who, advise is welcome. Typing this on an iPad was a mistake. Please excuse any typos. Goodness!!
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