I am Sick - Or Maybe Not

For the first time in years, I have come down with something.

Or maybe not.

Here's the story.

Yesterday I got the relatively new conjugated more antigenic protein based pneumonia vaccine, PREVNAR 13.

My last pneumococcal vaccine, the weaker but broader spectrum Pneumovax, and the older PREVNAR 7 were administered more than seven years ago when I was first diagnosed in the hopes that early in the disease, my immune system had not crumbled too much and I could still mount a protective response.

The new improved PREVNAR 13 made my arm sore, which I took as a good sign, suggesting some immune response. In contrast, the flu jab a few weeks early was a non event.

That night I felt pretty awful- achy, lightheaded, nauseated, chilled, agitated. I slept little.

The next day, today, I went for my every 8 weeks IVIG. This by the way, may also dampen my immune response to the vaccine, but I wanted to get the immunization as far out as possible from the last boost to my passive immunity with the infusion of IVIG.

It was not that long ago that I was getting IVIG every 2 weeks! My veins are much happier.

I still felt terrible this morning.

Although the news was good with my hemoglobin and platelets (both within normal ranges), despite my stretching out the time between the protective dosing with other peoples' antibodies to prevent me from killing my own platelets as I have done so often in the past with my ITP, I got a surprise with the white blood cells.

My lymphocytes were zero, nada, missing in action, on the automated differential although I did have a normal 0.4 count of atypical lymphs.

My lymphs are my cancer cells. I am happy they aren't around.

But they are also my T cells and presumably some healthy non-clonal B cells. Where are they? I need you guys to fight infections and search and destroy any early secondary cancers. Come back!

Strange, but it gets stranger.

My absolute neutrophil count was a very high 16.7, most consistent with a bacterial infection. These are levels one sees in pneumonia or appendicitis or a kidney infection. Serious stuff.

Occasionally however, very early in the course of a viral infection, the neuts will rise. In the past when I was sick, my lymphs shot way up, not the neuts.

And although I had no fever, my blood pressure was as low as 81/45. It was still low, but better by the time I left the cancer center.

Despite the fact my wife was very sick all last week with multiple specific signs and symptoms, I have had no focal problems, just this general overwhelming malaise.

So is it the prodome of a coming illness? The oncologist who saw me at the infusion center wisely wrote a script for a broad spectrum antibiotic just in case, but said to hold it until it is clear I am actually sick with something infectious. Good counsel.

Or was it all just a weird rection to the PREVNAR?

I slept much of the day, and am starting to feel better, so I am betting on the latter. Us CLL patients have pretty weird immune systems.

More bad news.

On a sadder note, another CLL warrior died this week. Ellen Rhudy was a fighter, very actively battling her disease for years in her own unique way with mostly alternative, non allopathic medications. Over the years, we exchange many emails and a few phone calls as she tried to leverage her comprensive knowledge of different nontraditional therapies with the changing and less toxic CLL treatment landscape. We often disagreed, but we were friends because we shared a common enemy.

CLL plays for keeps. I hate it.

I will miss our exchanges, Ellen. Rest in peace.

Really sad.

More Good Lab News

Our EHR (the electronic chart of all the medical records where I work and get my care) is down again, but before it crashed, I was able to view most of my lab results from 3 days ago.

Remember that I had gone a full six weeks between my lab tests and IVIG infusions to control by ITP, representing the longest period my veins haven't been probed for blood in the last seven years and the longest period ever between immunoglobulin infusions.

And the news was only good.

First the CBC.

For first time in many years, I have two blood counts in a row that showed no anemia. My hemoglobin was a robust 14.4.

My platelets were even better, an amazing 405,000. Although I have had a splenectomy, and they would be expected to be higher than in the reported average, this is still a super result, reinforcing the safety of the move to extend the time between infusions. It wasn't that long ago that I needed treatments every two weeks to keep my platelets in a safe range.

My absolute lymphocytes (ALC) was nice and low at 1.2. I want it low because those are the cells that make up my cancer. A high ALC usually means the leukemia has returned. My ANC (infection fighting neutrophils) was a healthy 6.2.

Blood chemistries showed that my liver and kidneys are doing a superior job of ridding me of any toxins or waste, and my sugar, minerals, and electrolytes are well balanced. Uric acid which often rockets up when taking cyclosporin as I do stayed well below the point when it comes out of solution and can cause the agonies of gout. This last result I particularly attribute to my vegan and nearly completely alcohol free diet.

Even my iron studies, consistently low in the past and likely one of the negative results of my longterm meatless diet, had inched their way into the bottom of the normal range, suggesting that using the cast iron skillet and eating more collard greens and molasses was slowly filling my empty tank.

And to top off the good times, my blood pressure was around 110/60 even with an IV in my arm.

When the computers are back up, I will check my Vitamin D, zinc and IGG levels.

I have grown accustomed to getting good lab results, but I never take them for granted and I am always grateful.

Next week, I am off to Ohio for my 84 day check in with yet another set of CT scans and more lab. On the way there, I am leaving early so that I can stop in the bay area to kvell (Yiddish for to feel proud and happy, especially applicable to one's offspring) over my granddaughters, and on the way home, I will be visiting friends in Missouri.

But that is the only travel planned for all of July! It is great to have some down time at home. Even with my boring labs, I still get tired and need my rest. Except for the fatigue, and the constant background noise about my impaired immunity and a host of other potential but G-d willing never going to happen concerns, my CLL is a non-event.

I believe that after this set of scans, I can go a whole six months between imaging, but not between visits to OSU and Dr. Byrd.  Enough scans already!

Starting late in August, American Airline will offer direct flights from LA to Columbus. It may be almost worth the unpredictable drive up the 405 from Newport Beach to LAX to avoid the stopover in Dallas or Chicago for my next trial visit. That could be nice.

I remain busy with prepping video and news material for the blog. Expect the second part of my ASCO 2013 Wierda interview on prognostic factors to be posted here soon.

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.