DLBCL Completely Blindsided Me — Did Anyone Else Experience Severe Skin Issues and Muscle Loss?
At the beginning of March, I developed a severe cough — the kind where it feels like you’re coughing your lungs out and straining every muscle in your chest. I went to urgent care, where I was prescribed cough syrup and given an inhaler. Around that time, I also noticed swollen lymph nodes in my neck. I mentioned it to the doctor, but since my bloodwork from February had come back normal and I already had an in-person physical scheduled for the first week of April, no additional bloodwork was done. At the time, it seemed reasonable not to panic.
As the weeks progressed, though, I began getting noticeably weaker. I was constantly dizzy, short of breath, unable to stand for long periods, and struggling with balance to the point where I eventually started using a cane for support. I remember one moment where I lost consciousness while trying to get water at home, which I now realize was a major warning sign that something was seriously wrong.
To make things even more confusing, I was also dealing with what doctors initially believed was trigeminal neuralgia. One of my MRIs had shown an artery compressing against the trigeminal nerve, and I was actually scheduled for surgery in late April because of it. At the time, I honestly believed many of my symptoms were connected to that condition, combined with stress and my nervous system being completely overloaded. Looking back now, I know I probably should have gone to the ER sooner. But after a previous experience where I spent nearly 12 hours waiting in the ER only to ultimately be sent home, I convinced myself I could hold out until I saw my primary doctor — someone I had trusted and been with for many years.
After six MRIs, specialists now no longer fully agree with the trigeminal neuralgia diagnosis. I was left with some numbness on the left side of my face, though thankfully the debilitating headaches have stopped, so for now I’ll take the numbness over the pain.
Looking back, there were other warning signs too — night sweats, intense itching, exhaustion — but I brushed some of it off. I’ve always tended to sweat at night, and I kept convincing myself there had to be another explanation.
On the last day of March, my mom encouraged me to get out of the house and run errands with her. With the support of my cane, I took the elevator down in my building, and shortly after reaching the first floor, I collapsed and hit my head. The next thing I remember is being in an ambulance receiving what would become the first of many blood transfusions.
I ended up hospitalized for nearly 25 days while doctors worked to determine exactly what type of lymphoma I had. I was eventually diagnosed with Diffuse Large B-Cell Lymphoma (DLBCL). Because the lymphoma was so aggressive, they ultimately started me on a nonstop 5-day chemotherapy regimen involving three chemotherapy drugs. I’ll continue treatments every 21 days for a total of six rounds.
Ironically, the doctors told me one reason they are treating it so aggressively is because, aside from the lymphoma itself, I’m otherwise healthy and my heart is strong enough to handle the treatment. They also explained that this was not hereditary and that there was nothing I could have done to prevent it. It appeared suddenly, progressed rapidly, and completely blindsided me.
One symptom I rarely see people talk about enough is the skin issues. Did anyone else experience severe itching or extremely dry, scaly skin? I scratched so much that I literally broke skin and left scabs on my body. I’ve managed to get some of it under control with a heavy moisturizer regimen, but it’s still not completely gone.
Another thing that has been extremely difficult mentally.