Personal Update on my CLL: I am doing well with a near normal MR and no evidence of resistance to Ibrutinib at 42 months
I had MR imaging of my abdomen and pelvis earlier this week at St. Jude. The results were compared to my CT scans done on June 30, 2014 at Ohio State, about 16 months ago.
I am now on my 42nd month on ibrutinib as part of the OSU clinical trial.
The abdomen showed no adenopathy. No abnormal nodes. None. No big nodes!
WOW!
My pelvis did show one plump node in the left external iliac area (drains the lymph from the left side of GU tract) that was borderline enlarged and probably 2 millimeters bigger than it was before.
Different techniques, different doctors, different times. I don't think the 2 mm. means anything and either does Dr. Byrd so I refuse to worry.
I switched to the less precise technique of MR to avoid the potential cancer causing risks of ionizing radiation of the many CT scans that are part and parcel of clinical trials.
When relapses happen with ibrutinib, they often start in the nodes. And that clearly is not happening in my case. And that is great news.
The other great news was that my blood tests done at OSU for the two common mutations that can lead to resistance to ibrutinib were negative, namely the downstream gain of function mutation of PLCγ2 or the C481S mutation at the BTK binding sites that prevents ibrutinib from irreversibly (covalently) binding. Either one of these mutations could turn back on the signaling. Blocking BTK signaling is the key to the success of ibrutinib in handling the CLL clone, so if the blockade is broken than will lead to resistance and eventually relapse
It is not a perfect test, but I had neither one at detectable levels.
Tomorrow I go for IVIG for my still dismal levels of immunoglobulins and to keep my auto-immune ITP at bay. I will also have routine labs drawn, but I am not expecting any surprises
A week later I am back at OSU for my 3 month check-up.
Flying to Ohio in the late fall and all winter is not predictable, but what I can predict is good care and what I can anticipate is more good good news as I am heading towards 4 years on ibrutinib.
UPDATE: My CBC at the infusion center Nov. 12, 2015 was basically normal. Hemoglobin was really normal at 14.5 so no anemia, platelets were very slightly above normal at 458,000 due to my splenectomy, ALC was at the low end of normal at 1.0 and that makes me most happy and my ANC was a healthy 8.1.
All good. YEAH!
Hope to see you at our after ASH educational bash at City of Hope on Dec 12. Click here for the details.
I am now on my 42nd month on ibrutinib as part of the OSU clinical trial.
The abdomen showed no adenopathy. No abnormal nodes. None. No big nodes!
WOW!
My pelvis did show one plump node in the left external iliac area (drains the lymph from the left side of GU tract) that was borderline enlarged and probably 2 millimeters bigger than it was before.
Different techniques, different doctors, different times. I don't think the 2 mm. means anything and either does Dr. Byrd so I refuse to worry.
I switched to the less precise technique of MR to avoid the potential cancer causing risks of ionizing radiation of the many CT scans that are part and parcel of clinical trials.
When relapses happen with ibrutinib, they often start in the nodes. And that clearly is not happening in my case. And that is great news.
The other great news was that my blood tests done at OSU for the two common mutations that can lead to resistance to ibrutinib were negative, namely the downstream gain of function mutation of PLCγ2 or the C481S mutation at the BTK binding sites that prevents ibrutinib from irreversibly (covalently) binding. Either one of these mutations could turn back on the signaling. Blocking BTK signaling is the key to the success of ibrutinib in handling the CLL clone, so if the blockade is broken than will lead to resistance and eventually relapse
It is not a perfect test, but I had neither one at detectable levels.
Tomorrow I go for IVIG for my still dismal levels of immunoglobulins and to keep my auto-immune ITP at bay. I will also have routine labs drawn, but I am not expecting any surprises
A week later I am back at OSU for my 3 month check-up.
Flying to Ohio in the late fall and all winter is not predictable, but what I can predict is good care and what I can anticipate is more good good news as I am heading towards 4 years on ibrutinib.
UPDATE: My CBC at the infusion center Nov. 12, 2015 was basically normal. Hemoglobin was really normal at 14.5 so no anemia, platelets were very slightly above normal at 458,000 due to my splenectomy, ALC was at the low end of normal at 1.0 and that makes me most happy and my ANC was a healthy 8.1.
All good. YEAH!
Hope to see you at our after ASH educational bash at City of Hope on Dec 12. Click here for the details.
Labels: Chronic lymphocytic leukemia, CLL, CT scan, CT scan. nodes, Dr. Byrd, lab results, lymph nodes, MRI, resistance
posted by Brian Koffman at
11:14 PM
6 Comments:
Cheers Brian K. I am glad to hear all is well. I am on the ACP 196 2nd generation BTK Inhibitor and doing well too. Glad we have people in medicine who do wonderful things. GLTU I am at OSU and scheduled to return on Dec 29 maybe our paths will cross.
Great Dr. Koffman, I´m glad about the good news about your health! Keep us posted!! Best wishes
Dr. Facundo Stingo
I just passed my one year anniversary on Ibrutinib and my counts are all in the normal range. I am so glad to here of your successful treatment. You are an inspiration, my north star of CLL. Please keep up the good work and we wish you continued successful treatment.
Such good news! I appreciate that you share your personal journey. Although we will each follow our own path, your chronicle gives me hope for my own long-term survival. My best wishes for your continued good health.
What a wonderful report. So happy that all is going well for you. You don't have time for any down time.....I have never known anyone as busy as you. Talk about a year with so many reasons to be thankful. Happy Thanksgiving Dr. K.
You have shared here many useful information here with us. Really like the blog you have posted got many thing to know. Thanks and keep updating more with us.
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