CLL: Report From The Infusion Center

It has been six weeks since my previous infusion of IVIG for my now well-behaved ITP and my platelets remain near 400,000, a very healthy level. Post splenectomy counts tend to run a touch higher than normal limits but it certainly seems with these results, I can safely stretch out visits to the cancer center to every seven and then eight weeks.

Dr. Byrd is behind this as long as my trough IGG (immune globulin G) level stays > 600. That level is a bit below normal, but safe.

More good news.

My absolute lymphocyte count remains nice and low. Neutrophils remain rock steady. Monos remain a touch high. All good.

The only slight annoyance to an otherwise joyous lab report was the slight drop of my hemoglobin to 13.1, back into the mildly anemic range. Last time it was 14.4. The time six weeks before that was 14.6.

Those last two blood counts represented the first time since my hematopoietic stem cell transplant more than five years ago that I have had two CBCs in a row that showed no anemia.

However, if I look back to April 2013 my Hgb. was 13.2. 

I was hoping it would be staying in the > 14 gram range and maybe even start to climb to where it was pre-CLL in the high 15s, but it continues to bounce around in a narrow range of low normal to normal. I refuse to be concerned unless I see a downhill trend. What I see instead is this pattern of the same minor ups and downs over the last three years of blood counts.

I teach others that in most circumstances, one blood count in CLL means little. It is the trends that matter.

I will listen to my own counsel.

So no worries. At least until my next infusion seven weeks from now in October! My veins are so happy.

Talking about IVs, while here with a needle in in my right arm, I spoke with a young CLL friend doing well after HDMP+R (high dose methylprednisolone and rituximab) at UCSD with Dr. Castro who now is considering a Campath mop-up.  With his blood clean and no abnormal nodes, he has only < 1% CLL left in his marrow. He is less inclined, and I agree, to follow such a course with all the new meds in the pipeline. The calculation of the risk benefit ratio of prolonging the remission versus the real danger of serous infection from the knocking out of the B and T cell population with Campath may be shifting.

And I Skyped with a friend in Ireland whose wife with CLL has a growing solitary cervical node and a upper respiratory infection on the same side. We discussed the differential diagnosis with a reactive benign node (the typical nodes that swell in response to an infection) being number one, relapse number two, and Richter’s the least likely in the absence of a rising LDH and more malaise.  Also she was only received rituximab therapy in the past, has no high-risk deletions, and is mutated, making the last diagnosis even less likely.

I point these two cases out to remind us all that there is no one size fits all in CLL, and along the way, we are faced with a myriad of big and little decisions and worries.

Infusion Time Again

And I am no talking green tea infusions.

Tomorrow, I return to the Infusion Center  at the Cancer Clinic for the first time in over a year, the first time since I was discharged for my transplant last July. I am back for my old friend, the ultimate protein shake: Intravenous Immunoglobulin or IVIG as it is known to its fans and detractors.

It is a pooled blood product, screened and cleaned for all KNOWN infectious agents. The operative word is KNOWN. Could some unknown prion or virus be lurking, ready to strike in 20 years or the next time I might be neutropenic (low neutrophils or one type of white blood cells that fight infection)? Could be, but the track record over the last decades is perfect. No reason to expect trouble now. Plus I am planning on never being neutropenic again.

With my lowered immunity and the bugs in the air these days and the days to come, the risk of me dying from a pneumonia or the flu is pretty real and much more present. There is only the present, the Zen master teaches.

I will act on the known and not fear the unknown. IVIG here I come. No last minute cancellations this time around.

But being back in the "chair" at the Cancer Center is a stark reminder of my scary past when I alway wore long sleeves to hide the IV marks from my multiple treatments and lived in fear about what my next platelet count would show and even, at its darkest moments, if I would wake in the morning. It hints too at my uncertain future. 

And it confronts me with my present vulnerability.

But it is also a bond with the community of those still up to their eyebrows in their cancer fight. Not that I have left the fold. I pledge that I will never leave  the fold, even on the other side of a cure. That's where I am headed, and I plan to pull as many of you out of those troubled waters to the safety of that blessed shore. Maybe not pull you, but at least show you that it can be done and one way to do it. If IVIG is part of my swim to that promised land, so be it.