If perhaps anyone has noticed that I haven't posted much lately, it's because I was recently diagnosed with non-Hodgkins lymphoma (Burkitts). It started back in September when a lump appeared under my chin, virtually overnight. Through a series of scans and biopsies, I found that it was lymphoma. I then was referred to an oncologist (who I like very much) and have been through a series of diagnostic procedures, plus a surgery to implant a port in my chest for chemo, which I started last week.
The good news is that this is a "high grade" lymphoma which is very susceptible to chemotherapy. I'm at Stage 3, as the cancer is also in another lymph node in my abdomen. It's not present in my spinal fluid or bone marrow (huzzah). The bad news is that my chemo is delivered over the course of a week through a portable pump that I take home with me, and I go back for a refill every day that week. I'll repeat this cycle every 3 weeks, including "prophylactic" chemo for my spine / brain via a lumbar puncture. Having been through two lumbar punctures already, I can say they are not nearly as bad as they sound (but still unnerving).
I'm grateful for my family and friends who have rallied around me. My sister spent the past 2 weeks here in Austin with me while I went through my first round of chemo. My other sister is coming to visit for my next round I've got a long road ahead, but at least I now have some idea of what to expect.
I implore everyone with HIV to pay special attention to any lumps or bumps they noticed on their body. Lymphomas are commonly associated with HIV+ folks, especially long-term survivors, and you need to act quickly and decisively if you suspect something is wrong. Even if your HIV is controlled and your viral load and CD4 counts are perfect as mine are, you have to be vigilant
Oddly, this all started in September about the same time as another of our forums members here (hope_for_a_cure) who also posted about having Hodgkins lymphoma. We're going to kick butt together, and could use all the positive thoughts, energy and prayers you can send our way.
Hugs,
Henry
2tcells:
How big was that lump.? And how big are these lumps and bumps we are supose to be looking for? I have 2 tinny bumps like the size of the tip of a ball point pen on my upper leg is that something to worry about?
Miss Philicia:
2tcells, if something like this concerns you merely point them out to your doctor on your next visit. The good thing about having HIV is that we all are seeing doctors regularly. He will be better able to assess your concerns.
I would caution other newly diagnosed members not to become paranoid from reading Henry's thread, or the fact that two long-term survivors have been diagnosed in the past month with lymphoma. It is all too easy to become overly anxious.
Jeff G:
I agree with Miss P . Henry , Im glad you decided to post . You are loved by all who know you and being able to support you and let you know we care is a true blessing . Jeff .
Fisher:
Sorry you have to deal with this, Buck. Sounds like a bit of a hassle. Hope the Chemo doesn't drain you too much. Thinking of you and your smile and wonderful disposition.