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.

Worrying

I am revisiting an old theme on worry and decision making. Maybe it is the recent death of my dear dear friend that evokes my need to again look inward. Old themes for me, but I needed a refresher course in mindfulness.

When we have cancer in general and CLL in particular, it is easy to imagine that any minor issue represents the tip of an iceberg that is going to sink our ship.

At least it is easy for me.

I can worry that my clogged ear could be due to a salivary or lymphoid tumor compressing my right auditory canal. Odds are way against it, I am not  really too concerned, but still my ENT wants me to have a MRI and it is scheduled tomorrow.

Could my pain in my calf on the elliptical trainer be from a sore muscle or is the first warning of a blood clot? Worrying minds want to know.

Is my occasional cough a well recognized side effect of my blood pressure medication, or is it telling me to get a chest x-ray to rule out something more sinister?

Is my rash dry skin or an early infection? What does this or that pain mean?

I suspect that I am not alone in these mind games. Don't we all let our fears gallop ahead of us?

It is so easy to catastrophize when we have cancer.

Mark Twain is quoted as saying:

"I have suffered a great many catastrophes in my life, most of which never happened."

Still we are admonished to stay vigilant, so cultivating the place of awareness without the worry is the goal.

Aware and calm. That is the sweet spot.

Some tricks to getting there include recognizing that most bad things progress, so anything with ups and downs is likely not the grim reaper sending ahead a search party.

With the critical exception of infections in those of us who are immune compromised, most bad things are bad from the get go and waiting a bit of time does not often change the final outcome. A delayed diagnosis is almost never fatal mistake.

So I do my best to acknowledge and then gently dismiss most of my worries and only check things out when they hang on and on or they get really annoying. And I remained detached. As best I can.

Another place that we must cut ourselves some slack and show ourselves some compassion is the worrying we do about our choices. In CLL, we are blessed to have some time to ponder and consider our decisions. But that extra time can give us a chance to over analyze and agonize.

This doctor or that cancer center?

This supplement or that diet?

CT scan or no CT scan?

FISH or cut bate?

Watch and wait or treat early?

FCR or BR or a clinical trial?

Transplant or CAR-T?

Is it safe to travel to Kenya or China or next door, eat sushi or drink grapefruit juice, visit the sniffly grandkids or a friend in hospital?

These questions big and small never stop, but the second guessing should.

None of us nail it every time. CLL is a slippery disease and it is constantly morphing. Even the big name gurus famously can't agree on much.

So let us forgive ourselves when we make what might seem at least in the short term to be a wrong move, and simply learn from it and move forward.

Congratulate ourselves on the good choices. We are still here, aren't we? We still have choices, don't we. The real trouble begins when we run out of options.

So the uncertainty is a good thing. The only things that are completely ordered are dead or divine, and although I believe we all carry a spark of the holy inside us, we are all fallible and faulty. Heck, we have cancer, the poster boy for chaotic dysfunction at the cellular level.

Still we are bumbling our way forward, groping for answers. The path ahead actually looks wider and brighter with more options coming online at an increasing pace. New therapies such as ibrutinib (PCI-32765) or GS1101(CAL 101) or CAR-T or new MABS open more possibilities and even more decisions.  This is all good,

We need to share our experiences, good and bad with each other because we can't do it alone.

After all, we are all in this together.

No news is good news

I get worried when friends don't post for weeks on end. I fear they are not wanting to share challenging news. They are hiding something perhaps.

I can too quickly envision the worst.

So I should be more sensitive and empathetic about what others may be thinking when my posts go cold for weeks on end.

In my case, no news is good news. Labs are not trending any way, up or down. Nodes aren't gone, but aren't growing. Energy is still low, but not lower.

Boring boring boring, which is perfect! I love it.

There is little new to write about from the CLL perspective, but I have a bone marrow biopsy scheduled and a few new thoughts on how I plan to handle imaging studies and maintenance therapy all that need to be formulated and posted before the end of the month.

Mostly I have some internet access issues, and it will be a short spell before they are all resolved, so my next post is likely at least a week away.

So no worries, mate.