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CLL Support Association
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Chicago LRF Conference News

Hi everyone,

Just a quick highlight from the Conference: We are beginning to see a move from single use of the exciting new targeting agents to see if better remissions if not cures can be achieved through combining these newer agents. Dr. Craig Portell had a Poster presentation on a Clinical Trial combining Ibrutinib and Venetoclax (ABT-199) clinicaltrials.gov/ct2/show... BUT restricted to relapsed MCL patients. Our CLL community may have MCL lurkers who might want to know that this Clinical Trial has 17 slots left if you are interested. This Trial’s direct relevance to CLL is that these patients will likely be our “canaries” for any unexpected side effects when this combo may be offered to our guys. Just as I and others who participated in early Ibrutinib Trials should be used by our community to better assess the risk vs benefit so we should also be aware of human Trials that use all drugs applicable to CLL.

Especially for newly diagnosed CLLers, PET scan are not appropriate in the context of CLL period. ….. Except in cases where indications for aggressive lymphomas, most commonly for us DLBCL (Diffuse Large B Cell Lymphoma), are indicated.

CT scans are not necessary for CLL diagnosis nor is a Bone Marrow Biopsy. CBC (Complete Blood Count) Blood work is all you need for CLL diagnosis period. Except ….. when CLL (leukemic presentation) of the B-cell cancer manifests as SLL (lymphoma presentation) only in the lymph tissue at which time CT scans are useful. In any case where imaging of any kind is used it can not diagnose the REASON for swollen lymph nodes. Any scan requires further workup to identify the cells involved for swollen lymph nodes or masses detected. PET scans for example give twice the radiation of a CT and can give false positive results due to inflammatory causes outside of cancer.

Progress is being made on introducing blood observed clonal-typic marker detection testing that will eventually replace much ionizing radiation imaging CT & PET scan usage in monitoring for relapse after treatment.

Become knowledgeable to effectively challenge authority - Keeping our antennae up and our powder dry,


5 Replies

Great info. Thanks!


Thanks for being there and informing us.


For those who aren't aware of this, Ohio State is conducting a trial in CLL patients combining Obinutuzumab, Ibrutinib and Venetoclax. The trial is still on-going, but the early results so far are exciting. The Phase 1b group of 9 patients is having really great results, myself included. I've been told that, midway through their trial treatment, more than half of the Phase 1b patients were MRD- in their bone marrow. As of 2 weeks ago there were still a few slots open in the Phase 2 trial for previously treated patients who have not been on Ibrutinib.

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Wayne: I was going to try to stop by the conference and say Hi, but at $50 admission and $40 parking I had to take a pass.



Hi Johnl,

It was a packed house and sorry to have missed seeing you. If you are in the area and have any interest in being part of a Chicago CLL/SLL support group let me know. I have several in our community local to Chicago who have expressed interest already.

My understanding is that LRF will be alternating its Conferences east of the Mississippi between NYC and Chicago so save up for next time.



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