proactive patients = better prognosis

Yesterday, 9/11/2016 had for me an additional and momentous memory beyond the horror of the tragic attack on our country perpetrated largely by Saudi Arabian terrorists. While it was the 15 year anniversary since the terror attacks, it was to the day my 10th year anniversary since being diagnosed with CLL.

This is for me a time to reflect, to practice an extra measure of gratitude for the good in my life, to acknowledge the support of my family, friends and ongoing efforts of doctor/researchers to once and for all banish CLL and other cancers. It has been a time to not only remember the rough parts of my journey but to anticipate the progress of the future which will spare others the debilitating past legacy of CLL.

I raise a glass in salute to those who have fallen in their efforts to save us from a similar premature fate. With special mention to Granny Barb, P.C. Venkat, Dr. Terry Hamblin, David Arenson, John Balan and so many others who have impacted my own journey.

With an eye toward the future I would remind all that flu season is here so take precaution and take heart with this bit of good news. “CLL Patients Responded to Influenza Vaccine”


3 Replies

  • Well said and I'm sure echoed by all of us.


  • Wayne,

    You brought me sanity when I was diagnosed. God works in mysterious ways.

    Without people like yourself, many of us wouldn't have the information so necessary to live with with this miserable cancer.

    I join you by raising a glass to you and all of those heroes you mentioned. 🍻


  • The small study I referenced in the previous post showing CLL patients who have responded in a positive way to flu vaccine is important to analyze for several take away messages. At the time I entered into the Phase I Clinical Trial for PCI-32765 (Ibutinib) there was the unknown as to whether or not participants might develop severe hypogammaglobulinemia similar to a congenital condition XLA (X-Linked Agammaglobulinemia) in which a mutation causes an absence of the BTK enzyme in newborns resulting in their inability to fend off infections. Ibrutinib targets and inhibits that critical kinase (BTK) so important for mature B-cell development.

    Curiously and luckily for us Lab-Rats our experience so far has not led to immune deficiency and we have seen in most patients an increase in some immunoglobulin numbers. Numbers must not always be assumed to equate to function but the increases, though possibly temporary are welcome. Some infections correlated with Ibru use are more likely due to inhibition of other kinases such as EGFR (Epidermal Growth Factor Receptor) and or complications from signaling disruptions caused in a number of molecular impacts by this less than precise medication.

    Keep in mind that we are all very different in how our immune systems are made dysfunctional by CLL and any treatments we might receive along our respective journeys. If that is not enough to make uncertain our response to vaccines the variability of which strains of flu we may encounter and at what time each may peak is an important set of variables which are impossible to predict with any precision.

    Hopefully with the progression of individualized medicine, treatment agents will be matched to patient profile needs looking at not only the flavor of CLL but the state of one’s immunity and those needs as well.

    The take away for me in the flu vaccine response for Ibrutinib patients is the wonder at the flexibility of our layered immune system(s) and the counter-intuitive positive results of a BTK inhibitor in the face of many who feared its use. I queried OSU (CLL Consortium Facility) on which flu shot they are recommending, High dose or Regular? Answer came back “Regular”. No contraindications regarding age or condition was mentioned.


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