Tuesday, July 5, 2016

Mixed Messages and the Sound of Distant Train Whistles

"I swear that too great a lucidity is a disease, a true, full-fledged disease."
NOTES from UNDERGROUND
By Fyodor Dostoevsky

Sometimes the ability to see around the corners into the dark or hear the distant train whistle when the railroads cars are still five stations away can create as many problems as these enhanced abilities promise to solve.

Case in point: 

My flow cytometry that looks for the clones of B cells that are characteristic of CLL has shown a slow but relentless progression of my disease over the last 18 months, but they still have to look pretty hard to find any cancer cells in my blood.

My mutation testings that looks for changes in my cellular pathways that are proven and as yet unproven to make my CLL resistant to ibrutinib shows many mutations but the biggest concern was that they found a mutation in PLCɣ2:p.S707F in 4% of sequencing reads. This is known to confer resistance by turning on the BTK pathway downstream from where it is being blocked by ibrutinib, blunting its ability to block B- cell receptors (BCR) signaling and so in theory allowing the cancer to grow again.


All this genomic instability should send me running to discover my next magic bullet or as my friend Wayne Wells (WWW) says, at least carefully choose what safe stone in the raging river to jump to next.

But this story is not news. It has been unfolding at glacier pace with these changes occurring over more that 18 months.

And here is the punchline.

My CBC or complete blood count is normal. Completely normal. No anemia. Normal platelets. Normal white cells in all lines. Normal!

All my blood chemistries are normal. My uric acid is low.

Both my LDH and B2M, well known markers of tumor activity are low and getting lower.

And my absolute lymphocyte count is a measly 1.6 and isn't moving anywhere. 

And I have no enlarged palpable nodes.

It is hard to get worked up when you ALC is in the low range of normal and you have no enlarged nodes. I wouldn't quality as having CLL as a newly diagnosed patient. Not even close.

Maybe the run away CLL train is coming to wreak havoc at my home station in the future, but it ain't here yet and G-d willing, it may never arrive.

So I am enjoying my life. We are getting ready for the trip of lifetime, a photo safari in Kenya in a few weeks. One of the best aspect of this vacation is that I will be on radio silence for 3 weeks and there is no CLL angle to the travel. Just pleasure.

A few weeks later, I am off again, this time to Estoril, Portugal where I will lecture to the European School of Hematology in September on ensuring patients get the benefits of the breakthroughs in therapy.

Of course I am not ignoring these faint signs that the labs are telling me. 

I am not just traveling and burying my head in the sand. 

I am looking at my options, but there is no urgency. I would be lying if I said there wasn't  some worry, but I know I have time. And treatments only get better with time.

Here's my point:

If it wasn't for the fantastically sensitive and frequent monitoring that I get as part of a clinical trial patient of Dr. John Byrd at Ohio State, I would be blissful unaware of any possible storm clouds. 

Am I better off knowing that something bad might happen (or not),  sometime in the future and there is no clear present agreed action to be taken?

Or would I be better off not knowing and simply being thrilled with an ALC of 1.6 (end of the story), as would be the case if I was receiving my ibrutinib in the community?

Each of us will have a different answer to this question and there is no right or wrong approach.

For me, I want to know. The more data I have, the better quality decisions I can make. That is worth the slight pangs of hearing that plaintive distant train whistle.

Stay strong

We are all in this together

And please take a look at the CLL Society's latest newsletter. Great stuff from fellow patients and leading researchers. 

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7 Comments:

Blogger Breast Cancer Initiative East Africa said...

Thank you for sharing Brian, I love your attitude and the fact that "you want to know" because you want to make quality decisions-----isn't this the essence of life. Yes we all in this together, to add value to each other and focus on the life we have! I celebrate you and wish you continued success in your fight! Gods Speed and enjoy Kenya, just came back from there! Healthy Wishes, Brian!
Philippa

July 6, 2016 at 4:07 AM  
Blogger Unknown said...

Hang in there Brian. I totally understand what you are going through as I am also a patient of Dr. Byrd. I started Ibrutinib in 2010, became resistant in 2015, and then went on the venetoclax trial. I am doing well and I am so thankful for all of the information and hope you share with us. Keep fighting and never, never, never give up. Marsha Glose

July 6, 2016 at 5:40 AM  
Blogger Judy Cleri said...

Enjoy your trip. Can't wait to see pictures.

July 6, 2016 at 10:40 AM  
Blogger Lois Tow said...

I like data, too, although sometimes I don't like the uncertainty that comes with it. I appreciate your ruminations on the risks and benefits of advance notice. I hope that train stays far distant for a long time!

July 6, 2016 at 11:41 AM  
Anonymous Anonymous said...

I've been on W&W for 14 yrs with no symptoms. I've been very lucky, but as I told my new onc if it were not for the blood tests I could have spent the last 14 yrs in ignorant bliss.

john

July 7, 2016 at 7:12 AM  
Anonymous Anonymous said...

Reminds me of the Simon and Garfunkle song- "Sittin in a railway station, got a ticket to my destination..." We're all "homeward bound", waiting for the train to take us home... Are we better off, hearing the whistle in the distance? You be the judge.

July 16, 2016 at 5:02 AM  
Blogger shaha jalal said...

thanks

August 21, 2016 at 8:48 AM  

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