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Restaging My Chronic Lymphocytic Leukemia (CLL) After Seven Doses of Epcoritamab for My CLL: Your Mileage May Differ

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I will soon be rescanned to see if my total of seven doses, with the last three being the full therapeutic dose of 48 mg of epcoritamab, has shrunken my lymph nodes.

In a different CLL trial, the median time to response was about two months, but that was with a more accelerated ramp-up than mine, so I am a little early in this recheck, but still looking forward to seeing my results.

In that same trial, more than half of the responders who achieved a complete response took, on average, a little more than three months before all their lymph nodes and organs were shrunk to normal size. It is usually defined as equal to or less than 1.5 cm in maximum diameter for lymph nodes.

Everyone’s’ results will differ. I will share mine, good or bad, when available. But understand, we will all respond differently, so if considering epcoritamab, decide based on your circumstances.

On another note, my unpleasant cytokine release syndrome (CRS) symptoms have essentially all disappeared. It was certainly not fun, but not all that bad, at least in retrospect.

More on iwCLL in Boston in another post, but I also wanted to share the other good news is that by eating a ton of fish and veggies in Boston plus something definitely off my diet, a few bowls of Boston clam “chowda,” I am regaining the weight I lost.

All good.

Stay strong; we are all in this together.


7 Responses

  1. Dr. Koffman,

    All great news! Thanks again for putting yourself out there for the rest of us patients. I am very appreciative. I am sure you know that we are supporting you all the way!

  2. Agreed! Thanks for the continued updates, Dr. Koffman, and well wishes all around. Your blog is an encouragement, and also a reality check, for many of us that don’t know what to expect.

  3. Doc,
    I’m so glad that you seemed to have come out the other end of the treatment with lots to be hopeful for.

    You are such an inspiration to us all and wait everyday for an update on your journey.

    I will say a prayer for you and also for all of Israel to weather the storm and come out even stronger and healthier.
    Jeff Z

  4. Can’t miss a chance for “real Boston clam chowda”! Glad you indulged and enjoyed. Standing by for your updates. So glad the CRS symptoms have dissipated. Onward to better health!

  5. Brian, the classic cod chowder is also not to be missed if you are still there.
    Good to be talking about food!!

  6. I see a minor mention of weight here. So good to see because I have been trying to gain some insight into weight loss and gain with SLL. Lots of questions:
    1) Can you gain weight or stop the current loss while on watch and wait?
    2) obviously eating in a healthy fashion and exercise is good for the fight and your health but you are not going to gain weight in this scenario. Any thoughts on how to do both be health and retain your weight.
    3) Does the data indicate that you regain your lost weight soon after you star treatment.
    4) More weight questions but will end with wondering why there are no articles or search information regarding weight and CLL / SLL? Just the cursory yes weight loss is a symptom to consider treatment.

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