Absolutely I had terrible pain in the spleen area. It just "hurt" to the point that I couldn't sit comfortable, or lay down comfortably, or even stand upright without pain. Even breathing hurt, because of the pressure of that big ol' spleen. There was NO way to get comfortable. Plus, the "fullness" I'd feel after eating just a few bites of food caused me to lose 1-2 pounds per day (which was nice at first, since I could afford to lose weight at that time.) Ultrasound and CT scan confirmed splenomegaly. In fact, the surgeon said it was one of the largest he had ever seen! A splenectomy was attempted, but once they cut me open, it was obvious that there were too many other organs to which the lymphoma had attached itself from the spleen, so they merely took biopsies and sewed me right up again. The oncologist wanted to wait another six weeks before beginning R-CHOP, to give the incision time to heal,but the pain and weight loss got worse and worse, so I only lasted 2 weeks before I called the doctor and insisted he do something. It was decided that the risk of the wound not healing wasn't as dangerous as a delay in chemo would be, so I began chemo just two weeks after surgery. And ended up with an open, infected incision for the next 6 months. But I felt better immediately after my first round of Rituxan.
The bad news is, even though I'm technically in remission, I still have spleen pain since it's not "dead" yet (although I was told chemo would "kill" it and it would eventually shrivel up and be absorbed back into my body.) Instead, it remains quite large and inflamed, although not nearly as large as before I began treatment. Oxycontin allows me to live with the pain fairly well, but I still can't take a deep breath without pain, and even modest, light activity or exercise leaves me doubled over. I'm told it WILL go away someday...hopefully. But more than one doctor has admitted it might not go away, ever. But I'm ALIVE, and that makes me HAPPY.
Diffuse Large B Cell Lymphoma
Diagnosed April 2010
5 courses of R-CHOP
In Remission since Sept 2010