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A CLL List Reply

Posted by Frederick Wasti
Jul 07 2012

I peruse, and occasionally participate in, a couple of CLL lists. (There are also several online CLL forums out there, too, but I have found them to be less useful.) I responded this morning. directly by email, to a person who described his situation and then asked the question, "Anybody on the list have any experience with Alemtuzumab or Rituximab in combo with high-dose Methylprednisolone?", and, while I was trying to compose a concise (well, at least for me - <grin>) response, I realized that my email reply might be useful as a blog entry, too, since it did summarize my current status, between Parts A and B of my clinical trial. So, here it is. (I did make a few changes, in that I have expanded a number of abbreviations - used so much in the CLL lists - to make it easier to read here.)

Hi, [name of person].

I've been in a clinical trial at Dana-Farber in Boston, involving high-dose Methylprednisolone, Ofatumumab, and Alemtuzumab ( http://www.clinicaltrials.gov/ct2/show/NCT01465334 ). Just this week I finished the four cycles of Part A, involving high-dose Methylprednisolone and Ofatumumab, and next week I start the six cycles of Part B, involving Alemtuzumab and Ofatumumab. (There is also a long "maintenance" Part C, which can optionally be replaced with a stem cell transplant instead.)

As you said, Ofatumumab is "a monoclonal antibody supposedly more effective than Rituximab". They both attach themselves to the CD20 molecule on B-cells, but supposedly Ofatumumab latches onto it closer to the cell membrane, perhaps making it more effective. Being fully humanized, Ofatumumab may be more tolerable for some than Rituximab, as well.

I found that Ofatumumab (each week) was quite tolerable, while the high-dose Methylprednisolone (every four weeks) caused more profound, more long-term effects (not permanent, but slow to fade away each time).

My total WBC has gone from 58K to 6K, my lymphocytes dropped from 85% of total WBC to 33%, and my neutrophils went from 0.5% (my reason to start treating) to 58%. My palpable lymph nodes shrank away to nothing on the very first day, and CT scans have shown that my spleen and internal nodes have shrunk to "unremarkable" (<grin>) size.

I assume that both Ofatumumab and high-dose Methylprednisolone can take credit for the above, although I do not know which was more effective. (Of course, acting synergistically, they both probably worked together to do this.)

Part B should really start clearing out my marrow (although Alemtuzumab will hurt my T-cells as well as the B-cells, unfortunately). My first bone marrow biopsy (from before Part A started) showed 30% marrow involvement - however, my second bone marrow biopsy was performed only just yesterday, and I don't have any results from that test yet.

The combinations in this trial may be a bit "odd" (of course, that's why it's a clinical trial - <grin>) - I think the literature shows high-dose Methylprednisolone used more often with Alemtuzumab than with Ofatumumab, for example. The trial is aimed at 17p-deleted people.

I did have one serious "unexpected event" during the trial - my second CT scan (at 2 cycles into Part A) showed a pulmonary embolism not present in the first CT (before Part A). Because of this, I have been giving myself daily injections of Fondaparinux. Whether the clot was related to CLL, or to the CLL treatment, or is unrelated to either, I really don't know.

I can try to answer any questions you might have - please feel free to ask.

Carry on then...

Fred (Frederick Wasti)

dx 2010 - 17p deleted - IgVH unmutated

[I will have more to say about Friday's blood test results, CT scan, bone marrow biopsy, and meeting with Dr. Fisher in an upcoming post.]

Categories: Leukemia