Ups and Downs: Time to Under React Again

My blood count has gone from anemic to normal to anemic and back to normal all in about two weeks.

My platelets remain nice and high near 400,000, my ALC (absolute lymphocyte count) remains nice and low at about 1.0 Even at that low count, the sensitive flow cytometry done six months still showed the cancerous clone at very low levels. My T cells and the CD4/CD8 ratios are all healthy. My neutrophils are normal and my monos are as always a bit high, a potential marker of a recovering from a damaged bone marrow. But more on that story later.

My blood chemistries were all within normal limits. To all but the most astute observer of my labs, there is no hint of leukemia.

My wife says it’s the high iron in the blackstrap molasses that she uses to bake Cajun gingerbread that has cured my anemia.

I say it was lab error that caused it. Or a lab variation. Four different doctors and three different labs in two different states. I am not expecting agreement, even on the basic numbers.

After years of these ups and downs, I am finally practicing what I preach and underreacting to these blips.

My hemoglobin today at 14.2 grams is within one gram of where it has been for the last few years – somewhere in the range of 13 or 14 grams. Long gone are the days of blood counts near the top end of male normal 15-17 grams. I have to go back to August 2009, about one year post-transplant days when I topped out at 16.4.

In 2010 through 2011, while my CLL and ITP were advancing and I was clearly a sicker patient than I am now, my Hgb jumped around 12.7 and 15, but for with a few exceptions, since Dec 2010, it has been mostly hanging in the 13-14 range.

My bone marrow obviously took a hit with the chemo-immunotherapy (FCR) for the conditioning for my transplant in July 2008, but it was only one week and you’d think it would have fully recovered by now.  The lowest it ever got post transplant was an amazing resilient 10.2, to me a sign at the time that I had not been hit hard enough with chemo and ATG (see my prior posts on this topic from the weeks following transplant) to clear out my marrow of my own stem cells to make room for the donor cells to engraft. Sadly my worries turned out to be dead on and I rejected the graft and got none of the benefits or risks of the potent and potentially curative graft versus leukemia, but on the good side, I never had any graft versus host disease, and I have been never transfused. My hemoglobin had started to climb and stay above 12 grams just 60 days post transplant.

Water under the bridge. Eight years with an aggressive CLL and only one week of chemo in that time.

I think of myself as pretty lucky.

Ready to learn a little basic nonmalignant hematology? Don’t fret. It’s easy, logical, and will help you understand your own blood counts.

For a long time I was slightly macrocytic (macro or bigger than normal red blood cells or in medical talk, a greater than normal mean cell volume or MCV for short). They are many causes for that finding including low levels of vitamin B₁₂ and folate, but the one that gets my attention is a damaged marrow that can lead to a too common complication of CLL and its old school chemo treatment, a nasty cancer deceptively named myelodysplastic syndrome or MDS. CLL itself probably increases our risk of this secondary cancer. So does FCR. The macrocytosis has been less of an issue recently, but the reason may be my lowish iron (veggies have lots of iron, but it is not easily absorbed as is the iron in a juicy steak). Anemia from low iron tends to be microcytic (that’s right, micro or small red cells- you see that hematology terminology is not that difficult). So when the red cells go through the automated “Coulter” counter, some are too big and some too small, so the average is normal. Hematologists have a few ways to look for that possibility and one is even automated. They review the RDW, or the red blood cell distribution width, a freebie and part of most CBCs (complete blood counts). When all the RBCs (red blood cells) are the same size the RDW is usually in the normal range. In an anemia of mixed causes, the RDW can be high. Mine is high.

But I am not anemic, so it’s all moot. Just something to keep an eye on. Abnormal RDW and MCV are not often significant and don’t usually deserve a work-up in the absence of anemia.

I walked you through this to help you understand how a doctor thinks about these things, even when there are not “action items”. Just sniffing the air, looking for trends that might portend future dangers.

In the meantime, I under react. Know our options, keep exploring, and have a plan. Don't give up.

On an entirely different scale, for the second week in a row, I have been rerouted on American Airlines coming home. Twice, first time in Atlanta, next in Columbus, I have breezed through the TSA pre-screen security, twice I was upgraded to first class, twice I has thinking this flying ain’t so bad and twice my bubble was burst because twice, my flight was so delayed by mechanical issues that I needed an entirely different route home. Today, due to changing delays and missed connections, I was booked on a total of four different air route to various nearby airports in California as I was informed that there were absolutely no seats left on any flights to Orange County. I didn’t have a ticket home until I left the secure gate and the overworked gate agents who by their own admission were in over their head, walked out past the TSA security zone and went to the American Airline ticket counter where a smart agent nabbed me a seat home though Chicago instead of Dallas. Not first class anymore, but who cares, I get home the same day.

Had I arrived at LAX as I was at one time rescheduled at 5:10 PM on a workday, it would have added at least two hours and $40 for a “stop everywhere on the way home” shuttle, so I am very grateful to the helpful staff at the ticket counter in Columbus. 

Under react. Know our options, keep exploring, and have a plan. Don't give up.

No Bloody Nose is Going to Spoil my Thanksgiving

Acting on the advice of Dr. Byrd, last night I went out and after some research bought a warm mist humidifier for our bedroom. I was already using Bactroban ointment daily in the effected nostril to keep the tissues moist.

This morning, I woke up with yet another nosebleed, minor, easily controlled, but unpleasant, inconvenient, and unpredictable.

Doesn't my nasal mucosa know that I have work to do, patients who are counting on me being at my best, family and friends with whom I want to be fully engaged, and important pending lectures and meetings that are the culmination of weeks of work, months of planning, and years of being aware. 

A stuffy nose is no fun and doesn't help my focus, but my real concern is the unpredictability. Will it reoccur when I  walk into an exam room or onto the stage? 

I preach to anyone who will listen that control is an illusion, that life is random, and that it is how we cope with the challenges that is the measure of our mettle. Maybe I need to pay better attention to my own rants. And maybe I should consult my reassuring ENT specialist to see if there is a nasal vessel that needs to be cauterized.


Will my nose be my Waterloo, my Achilles tendon? I doubt it. More likely it will turn out be just a speed bump  rather than a dead end.

So it was particularly timely that today I received these warm wise words of my fellow CLLer.

"Feeling gratitude can be hard in the face and aftermath of super storms or
the diagnosis of a cancer. Frank evidence that life is fragile and that we
are temporary.

But again and again we see how adversity restores our awareness of the
beauty in the world and the value of our relationships to one another. 

Happy Giving Thanks day to all. 

~ Karl"

Patients Against Lymphoma
Patients Helping Patients

Thanks Karl

A rough day: Bloody nose times two and a tender rash minutes before my CLL and MDS lectures in Chicago

I am all better now, but yesterday after finally catching up on some desperately needed sleep in my Chicago hotel, in the bathroom in the morning, I had a nasty sudden bloody nose that wouldn't stop until I applied 20 minutes of direct pressure with both hands.

It was reassuring to know that my platelets had just been checked the day before at OSU in Columbus and were nearly 400,000 so I knew it wasn't my ITP returning, but could it be some platelet dysfunction related to one of the many meds that I was taking? Use of coumadin excludes you from an ibrutinib trial due to possible increased bleeding risks, but was there a concern if you weren't on a blood thinner? Aspirin and other anti-platelet drugs are OK so the concern may be very specific. Being the information hound that I am, I reviewed some old articles on the subject. A study in Blood (2000) looked at the platelets in patients with XLA (an X linked congenital lack of BTK) suggested "These results suggest either that the Btk/Tec family kinase activity is dispensable to platelet function or that there is sufficient Btk/Tec kinase functional redundancy to rescue signaling in specific receptor pathways." In other words, BTK inhibition may have some effect on platelet function, but it is not critical. Another article in the same journal (2006) states: "In summary, the data presented here demonstrate the previously undocumented and critical role of Btk in bt/VWF-induced signaling in vitro and GPIb-dependent stable thrombus formation in vivo." This seems to suggest BTK may play a significant role in proper platelet function. Current Biology in 1998 concludes: "Our results demonstrate that Btk is important for collagen signaling via GPVI, but is not essential for thrombin-mediated platelet activation." I don't pretend to understand all the nuances of these reports, all of which are several years old and predate the era of BTK inhibitors and none of which were studying ibrutinib or any other BTK inhibitors. Rather, they were looking at the platelets of patients born without BTK. Still the data seems to suggest there is a definite role for BTK in clot formation. However,  I am not sure that it is clinically important as there are also clearly redundant pathways and signaling to get a healthy thrombus going in response to an arterial injury. 

Every trial visit I am asked about nosebleeds and bruising, so there must a need for some vigilance. But then again I am also asked about a myriad of other possible problems. That's why we do trials, to find out the benefits, and the risks.

I had no other worrisome bruising or bleeding issues, so I practiced my own advice and tried to under react.

After the bleeding finally slowed down, I needed to rush to clean up, shower and dress in a a blood red sweater and black jeans to give my CME lecture on MDS (myelodysplastic syndrome) to about 250 primary care providers in Chicago.

It all went well, but I had to fight the urge to sneeze more than once while on the stage.

My day wasn't done. The next speaker in the line-up, a good friend who is an expert in dementia wasn't feeling that well with stomach issues and asked if I could hang around and perhaps switch times with him and go on in his slot. As it worked out, he spoke as planned, so I went upstairs to my hotel room to rest and to quickly email Dr. Byrd who quite sensibly blamed the dry air of the plane and the hotel heating system and not the meds. He did not think it was a significant issue. Further reassured, I took a very short power nap, woke up early for my CLL lecture with a second milder more easily controlled bloody nose and just made it down to the stage for my final 90 minute presentation.

Ironically, the lecturer-friend on dementia who was at the podium between my two talks had to briefly leave the stage because of his gut issues and the moderator needed to jump in with the save. Fortunately Alzheimer's Dementia was one of her areas of expertise. She however warned me I was on my own, as she was not prepared to talk on CLL if I exited the stage with a Kleenex pressed against my nose.

The lecture was uneventful and well received and I hung around to answer questions including one from a doctor whose husband is enrolling in an ibrutinib trial. Today I am feeling fine. A tender mysterious rash came and went on my nose last night (maybe from all that pinching to control the bleeding), but I have had no other issues.


A bloody nose can be a harbinger of trouble or a false alarm, but in either case, it is startling, annoying, messy and inconvenient. It all made for a dramatic and stressful day, but all's well that ends well and it was ultimately of no consequence. If Dr. Byrd isn't worried about a bleeding issue, either am I.

Still I will be glad to be home tomorrow.

Labs were just great at OSU. My counts are all essentially normal on ibrutinib. No nodes to be felt. Anywhere. Like the vast majority of patients, I am responding well. Without a CT scan or bone marrow biopsy, you could not tell that I have CLL. And maybe soon, even those won't show any evidence of my evil clone.

I will soon be reporting on important issues from the Lymphoma Research Foundation Meeting that took place in Manhattan Beach last week, and I will be going to ASH this year, so watch for some newsy posts soon.