I mentioned recently the rather astonishing debulking effect that methylprednisolone -- being used to treat autoimmune hemolytic anemia -- has had on my chronic lymphocytic leukemia. Sometimes a picture is worth a thousand words, so I am posting two pictures today in lieu of writing 2,000 words.
The top photo is me on February 7, before the AIHA came calling and any treatment was done. Someone was kind enough to say that my thick neck made it look like I had been working out, but the only workout was being done by the CLL, which was ever expanding itself into lymph node masses.
The second photo was taken March 25, a little more than a week after starting treatment with 72 mg of methylprednisolone for the AIHA (and also 20 mg/m2 of low-dose Rituxan three times a week). Who is that man with the neck?
Now, imagine that sort of lymph node impaction throughout my abdomen -- I have no doubt that the bothersome pelvic nodes I have written about in the past were in a similar mass -- and you know why I slimmed down there, too, and no longer need my "maternity clothes." Altogether, I have lost 22 pounds since starting the steroids, which are now tapered to 16 mg daily. (As to the AIHA, I am doing OK but the red counts are still not normalized.)
I hope these photos show what unmutated, 11q-deleted clones of "the good cancer" can do. Often we patients get used to a slow change in our appearance and forget what we looked like before the lymph nodes began to swell. And while this shows what the CLL visibly did, another big part of the story is what it did that I couldn't see -- compromised my immune function, allowing something, probably an infection, to trigger the AIHA.
By the way, I made this note to myself on the third day of methylprednisolone therapy: "After two days of steroid, nodes reduced to about the least since initial (Rituxan) treatment three years ago. Six pounds lost." In other words, the debulking occurred substantially within the first few days of steroid therapy. Today, only two palpable, almond-sized lymph nodes remain in the fleshy area under my jawline, both vastly reduced from before.
The challenge ahead, after recovering fully from the AIHA, is to maintain my slimmer physique by good diet and exercise and to keep the CLL at bay. Seeing the massive bulk that was built up in me, and coping with the hidden consequences of the disease running amok which suddenly came to the fore as AIHA, has caused me to do a little thinking about the possibility of using something a little stronger to solidify my remission.
In the meantime, here are the photos, before and after:
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
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