Friday, March 13, 2015

The Kindness of Strangers: Getting my IVIG to Control my CLL (chronic lymphocytic leukemia) induced ITP

" I have always depended on the kindness of strangers."

Blanche DuBois from A Streetcar Named Desire

As did Blanche,  I too have depended on the kindness of strangers.

For the last nine years, every few weeks I show up at the cancer infusion center to sit for hours to receive intravenous immune globulin or IVIG. Recently I have stretched the interval between IVs to 7 weeks. 

By mechanisms that are not fully understood, it blocks my stupid auto-immune antibodies from attacking my own platelets that in the past has lead to multiple hospitalizations and fearful encounters with my own mortality when my platelet counts crashed and I was at risk for major bleeds. Thankfully, that is all behind me now.

I  have gradually and cautiously been able to taper off all the other meds for my ITP (immune thrombocytopenia) and my platelets have not fallen. 

Perhaps my ibrutinib helps turn off my auto-immune triggers. As seen in this recent post there is good reason to be hopeful. There are case reports of ACP-196, another promising BTK inhibitor helping too.

Perhaps I no longer need the IVIG, but I am not brave enough to stop it to find out. ITP is scary.

There is another reason not to quit.

My infusion 7 or 8 x year may also protect me from all sorts of infections. And that is important in my work as a doctor and in my fun as a grandfather where I exposed to lots of germs.

Due to the recent measles scare, all the doctors at the hospital where I work were ordered to have blood work to confirm their immunity. I objected for several reasons:
  1. I had had measles as a child
  2. Due to my CLL, I couldn't take the live vaccine even if my test came back negative.
  3. My antibody levels are not my own.
This last one is because of the IVIG that I receive. It is a pooled blood product from 1000s of strangers and by definition contains their antibodies against everything they have either had or been vaccinated against.

No wonder I was immune to everything that I was tested for.

But am I really?

Truth is that it's not me. It is the kindness of strangers' blood that is protecting me. It is known as "passive" immunity as I played no role in forming the antibodies. When the IVIG disappears as measured by the IGG level in my blood dropping after a few weeks as it must, my immunity fades too. IVIG does not boost IGA or IGM, two other important antibody classes, only IGG. 

Compare this to a vaccination where we attempt to mount an "active" immune response that is remembered and always ready to respond. Sadly in CLL, this is usually a barren effort. Flu shots and  other immunizations don't usually work well for us. And we must never risk getting a live vaccine as it might run amok in our bodies due to out immune-incompetence. We are notoriously lousy at making healthy antibodies.

So while I take my IVIG to protect my platelets, it is clearly helping me in other ways.

Thank you kind strangers. Your generous gift of your own blood has touched so many lives that you will never know.

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2 Comments:

Blogger Lisa said...

Wonderful story !!

March 16, 2015 at 5:54 PM  
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March 24, 2015 at 10:58 PM  

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