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.

Never quite normal. My latest lab shows a slightly high neutrophil count

Just once, it would be gratifying to get back a CBC (complete blood count) where every results was within normal limits. 

Just once.

Most of the time I am pretty close, but there is always some value that falls slightly out of the range of normal, causing my lab result to glow"red" in my electronic medical record.

I always disregard all the percentage of the white count and only focus on the absolute counts. Doing this is good medicine and gives me much less to ponder over. All patients should pay attention to the absolute counts, not the percentage.

Today my hemoglobin, my lymphocytes, and my platelets were all good. The size of my red cells (MCV or mean cell volume) remained a touch too big. This is probably a under-recognized consequence of having my spleen removed years ago, so I refuse to worry. I supplement my vitamin B12 as all vegans must (there is no source of B12 outside of animal products), my folate is fine and so it should be with my plant based diet, I don't drink, and my MCV is stable so I doubt it is a reflection of a damaged marrow. That list pretty much covers all the common causes of a macrocytic (big red cell) anemia that might apply to me, and besides I am not even anemic today.

What is new today is that my ANC or absolute number of neutrophils is a slightly high. Normal is under 8,000 (I usually run between 4,000 and 5,600), but today I'm 9,000. As a result my total white blood cell count is also raised at 12,300. 

A high ANC can be a sign of infection, usually bacterial. I have no infections that I know of other than a bit of a sore right nostril, that thankful has not bled in almost 2 weeks. Perhaps that could be enough.

Neutrophils also can jump up from any stress, physical or even emotional. That I alway have.

In my case, there is no cause for concern or worry, but it does demand monitoring to see if there is any trend.  One lab test means nothing. A level this close to the upper end of normal means nothing. 

Under react in my mantra, and this time it is easy.

Eight days from now, after a few days at the beach to relax and read and write, then the crazy busyness of ASH meeting in Atlanta, I will get my blood work all repeated at OSU.

This will all prove to be of no consequence, other than just once it would be great to get all normal results.

I guess it is just my fate, and that I suspect of the majority of my readers, never to be just like all the other kids.

Live from OSU

Back on the second floor of the James, with an IV in my right arm and bandage from the missed attempt on the left. Forget that- what is important is that my lab remains stellar -Hgb is 14.4. That is the first time that I have not been anemic in over a year, but I won't celebrate as it was in the 12s about a week ago, so I know it can go up and down.

I have been off low dose steroids for a few days now, but my neutrophils remain slightly high with my ANC being 9.6 (N: 1.8-7.7) pushing my WBC up to 15,000.

My absolute lymphocytes are 3.5 which is boringly normal and up a bit from last month (2.3).

Platelets are rock stable at a healthy 354,000 and retics is barely elevated at 1.6. Does that mean my marrow is being cleaned out and is responding nicely?

Blood chemistries are also good news. Kidney and liver function tests paint a happy picture. Uric acid is trouble free at 6.1. Only the LD (lactic dehydrogenase) is a smidgen high at 193 (upper end of normal is 190), up from 140 last month. Not worth mentioning and besides it could be from my sore muscles that are being poked and prodded now that I am going to PT to be stretched from here to wherever, seeing my trainer for some heavy duty rub downs, and exercising daily. It's working!

My immunoglobulin levels reveal my usual low IGA and IGM but even those are about as high as they have been in the last few years. IGG is normal thanks to monthly IVIG infusions. Thank you, donors, thank you.

No real change in my nodes. Less than one centimeter in the armpits and the tiny shot above my left clavicle is getting harder to fine. That's it for palpable nodes.

So I am under reacting to all the news, which is easy when everything is copacetic. No worries, mate.

After about two hours since arrival, my meds finally have been released. The three bottles of my magic elixir, ibrutinib were delivered and the first dose (three pills) for this cycle were dutifully swallowed. Even my last ofatumumab infusion in this trial is running.

Still need to be back in Columbus every 28 days until the end of my first year of the trial. They still haven't revised the protocol. Maybe they own airline stock? At the beginning of cycle thirteen next winter, I will enroll in the follow-up trial that only takes me back to OSU every three month, hopefully forever. I understand that I can remain in the study forever unless I progress.

My next set of CT scans is scheduled for October. That is only four months since the June imaging, so it seems too soon. Not sure what to do, but with my palpable nodes being so small and stable, it makes sense to know what's going on inside. Or maybe not.

No sighting on Dr. Byrd again. Hopefully next visit.

All in all, all is good back in Ohio.

Time for a vegan lunch and then a nap.

First of ten Rules to live by with CLL

This is based on the presentation I did at the Niagara Falls CLLPAG Conference where I listed ten rules that worked for me in living with CLL.

These are my rules. They helped me, but may not work for you, and that's fine. Know what is right for you, your spirit, your faith, your energy, your chutzpah, your intellectual curiosity, your level of trust of the medical industry, your tolerance for stress, and your world view.

 Use only what feels helpful and disregard the rest.

I will start with one that anyone who knows me or has read my blog with recognize. Any teacher will tell you, it is good to constantly review the importance principles, so please pardon me if I repeat myself.

This is an oldie but a goodie.

UNDER REACT

Not just to the lows, but also to the highs. I am not suggesting we don't need to express our joy or our worries, that we shouldn't take appropriate action when needed.

I am only saying that we should pause and reflect and react calmly and dispassionately as possible to whatever CLL throws at us.

A cool unemotional look at what needs to be done, which may be nothing, helps you make the most out of a good or lousy hand in both poker and in cancer.

There will be future ups and down. We need to conserve our energy- physical, mental, and spiritual. Everything changes- not always for the better, but not always for the worse either. With change comes a chance to react and act in a new way.

I am not pleading for total equanimity, just that we moderate our responses.

It has helped me immeasurably to live on this wild CLL roller coaster, to live in the moment, and to prepare for the future.

I am continuing to do well in the trial with nothing to report other that a tender pimple on my forehead. Honest!

This should be my biggest problem with ibrutinib.

Avery different Brian Koffman, one that I hardly recognize quoted something like this nugget from Jon Kabat-Zinn.way back on July13, 2008 just a few weeks post transplant, when I was so vulnerable and tender and oh so hopeful.

Do not: COGITATE, AGITATE, AND REHASH

Instead: MEDITATE, ACT, AND BE AWARE

Life goes on.

Under react.

I have never been able to actually find that quote, but if he didn't say it, I bet he would approve it. Maybe I made it up, and like the Zohar, gave it creditability by attributing it to a great author.

It's working already: Ibrutinib (PCI-32765)

My nodes are definitely smaller after only five days. Not nearly gone, not softer, but undeniably shrinking.

Also getting waves of nausea and feeling plain lousy and diarrhea so I know the medication is for real, but it is nothing that I can't manage.

Monday I am at the clinic and will see if the less biased examining fingers of my treatment team confirm my findings of diminishing nodes that I discovered when I showered this morning.

I also expect that those nasty B cells had to go somewhere, so my absolute lymphocyte count should be quite a bit higher when they do the blood work. That's a good thing.

Maybe, just maybe, this is the beginning of the end.

This is very promising news.

Now I must remember to enjoy but under react.