Status at 27 months of Ibrutinib

I visited the National Institutes of Health (NIH) again on May 12. This visit differed from previous ones in that I had an MRI of my lower back region to see if anything could be seen that might be causing the neuropathy in my feet. It showed nothing that could be at fault. So, cross that possible cause off the list.

 

As for the CLL, itself, blood test scores continue to look good---still improving---except for those that pertain to the immune system.  Red blood cell indicators, such as hematocrit and hemoglobin, are now officially in the normal range.  White blood cell numbers are again inching downward toward the normal range, although they still have a way to go. But that IGg (immunoglobulin) number is still looking pathetic. I guess it is something I'll have to learn to live with, and see if there are some nutritional boosts I can find.

 

When I think back to the state of my health in late January 2012 (so weak I had to be wheeled across the airport to get to NIH), a bit of discomfort from neuropathy in my feet, which might have nothing whatever to do with Ibrutinib, is nothing.  Heck, Nancy and I bicycled about 30 miles a day across southern Holland in early May.

 

Nothing to do but keep on keeping on---gratefully.

The mystery of neuropathy

The fact that I am now writing about neuropathy and not CLL says a lot.  Ibrutinib is awesome stuff.

Tests performed by Dr. Tanya Lehky, a neurologist at NIH, produced results that she called "consistent with chemotherapy damage"  (and not much different than results from pretty much the same test done locally back in October, she said). 

But that fact that something like 24 months had transpired between the final infusion of FCR (fludarabine-cyclophosphamide-Rituxan) and the onset of neuropathy in my feet tends to argue against FCR being the culprit.  Usually it shows up right away if it is going to at all.

Docs at NIH, having decided that my neuropathy was probably not a result of Ibrutinib (me being the only one), suggested I ought to have an MRI done of my lumbar region to see if something weird was impinging on nerves as they headed south to my feet.  A doctor there wrote a prescription for the MRI, to be performed back in the Albany, NY, area.

Then came the "medical bureaucracy game." 

Medicare is now my primary insurance. Fine.  Capital District Physicians Health Plan (CDPHP) is my secondary insurance. Fine. Except that CDPHP, for some inexplicable reason, farms-out its approval process for such tests to a third party called Medical Solutions company. Not fine. Medical Solutions refused to approve the test because the NIH doctor who wrote the prescription did not have an IRS tax number!  Of course he doesn't.  He's not in business to make a profit.

Got that?  Lack of a TAX NUMBER stands in the way of getting a medically approved test. 

Wow.

Update at 23 months on Ibrutinib

Once again it has been quite a while since I posted anything new.

Once again there isn't a lot new.

The neuropathy in my feet continues to creep inexorably from my toes to my heels. Next month the folks at NIH want to do a batch of tests to determine---and they think they can---if it is a result of the Ibrutinib treatments. Apparently I am the only "human lab rat" in their clinical trial of about 80 patients to experience this, so the odds that it stems from the Ibrutinib are slim.

Similar tests done locally, here in the Schenectady, NY, area resulted in the neurologist leaping to the conclusion that of course it had to be from the Ibrutinib, although he really had no idea.  It just seemed the most plausible cause to him.

So, stay tuned for news on that.

Second, I did have a new round of three IVIG infusions in late summer/early autumn to help my damaged immune system get through the winter and flu season.  I was stunned to learn that each infusion was billed at $7,700.  I don't want to seem ungrateful, but I am tempted to ask the local clinic that provided them just how they arrived at that price tag. Wow.

And, by the way, neither the infusions nor a flu shot kept the flu at bay. I came down with it in early December, just about got over it, and then had either a relapse or a new variety of it just after Christmas.  I am still blowing out and hacking up great gobs of disgusting green and yellow mucous. (More than you wanted to know, I'm sure.)

The good news: still no return of lymph node swelling. Blood test numbers remain pretty stable. The drug works.

Last bit of news . . . this blog has now had almost 12,000 page views. Hard to believe.