Feeling Better

1901 Life Magazine Cover

I slept well past noon today- one of many things that I am thankful for, and even took a long post meal nap, and except for a sore, slightly pink, and swollen upper arm where I got the vaccine, I am feeling much better. Still tired and a bit achy, but clearly on the mend.

I assume that yesterday's high white count and low blood pressure were an exaggerated response to the PREVNAR 13.

Or perhaps I was about to get sick and the IVIG infusion aborted the pathogen's attack.

I will never know, but I am grateful for feeling much better.

Our Thanksgiving vegan feast with family was lovely. I was righteously teased by my wife and my boys for some of my idiosyncrasies, we listened to Klezmer music, lit the menorah, and ate latkes with vegan sore cream and homemade apple sauce,  homemade stuffing with  homemade vegan gravy, salad, broccoli, stuffed baked pumpkins, seiten with onions,  homemade pumpkin pies, and Ben brought his homemade amazing stuffed baked apples served with coconut milk "ice- creme".  Sent the boys home with tons of leftovers.

An amazing feast, rightly designed to overwhelm with its abundance this one time a year.

Many of us have much to be thankful for, but until we create the best opportunities for all of us with CLL in particular and cancer in general, until every one of us, has had what I have had, the best chance for a long and meaningful life post diagnosis, our work is not done.

Happy Thanksgiving, my friends.

Old Vaccine for a New Population: Prevnar 13

Good news. I pasted this article from a link sent by Therapeutic Daily about approval of "kid's" vaccine for adults over 50. This news is about the conjugated form of the pneumococcal vaccine that kids have been getting for years. Protein conjugated vaccines such as Prevnar are better at eliciting an immune response than the wimpy antigenic stimulation of a polysaccharide vaccine such as Pneumovax that until recently was the only FDA choice for adults. Moreover, protection against 13 subtypes of this potentially lethal bacteria in those with compromised immunity is better than the old Prevnar 7 but still not up to the high water mark of Pneumovax 23. More quantity, less quality. So if we are early in your CLL, and haven't had recent rituximab or chemo, we should ask our doctor about it. The longer we wait, and the more immune damaging drugs that have hit our veins, the less likely of any meaningful response. Still, the risks are low, though the timing of boosters can be tricky and the small but real chance of untoward reactions are issues best discussed with our local providers.

More importantly, suggest that appropriate family members and friends do the same. See my recent post about the importance of herd immunity. Remember that the leading cause of death in CLL is infections. The leading infection is pneumonia. The leading bacteria that causes pneumonia is what old school doctors like me called pneumococcus, but now more commonly answers to streptococcus pneumoniae. This invader can also cause a host of other infections including meningitis and sepsis. This vaccine offers an extra modicum of protection and for that I am grateful. I have been suggested the off label use of this vaccine for years in adults, Now the FDA has caught up so it should be less of a stretch for a primary care provider to OK the shot. Here's the pasted text:

FDA Approves Pneumococcal 13 Vaccine From the PharmaLive.com News Archive - Dec. 31, 2011 From UPI Health News (Business) (December 31, 2011) Prevnar 13, a pneumococcal 13 vaccine, was approved by the U.S. Food and Drug Administration for people age 50 and older to prevent pneumonia, officials said. Dr. Karen Midthun, director of U.S. Food and Drug Administration's Center for Biologics Evaluation and Research, said pneumococcal pneumonia, caused when the bacterium Streptococcus pneumoniae infects the lungs, is the most common disease caused by this bacterium in adults. When the bacterium invades parts of the body that are normally free from germs, such as the blood or spinal fluid, the disease is considered "invasive," Midthun said. "According to recent information for the United States, it is estimated that approximately 300,000 adults age 50 and older are hospitalized yearly because of pneumococcal pneumonia," Midthun said in a statement. "Pneumococcal disease is a substantial cause of illness and death. Today's approval provides an additional vaccine for preventing pneumococcal pneumonia and invasive disease in this age group." The new use for Prevnar 13 was approved under the agency's accelerated approval pathway, which allows for earlier approval of treatments for serious and life-threatening illnesses, Midthun said. The pathway allows for the demonstration of effectiveness of a vaccine using an immune marker that is reasonably likely to predict clinical benefit.

Herd Immunity and transplant decision

Dr. STEVEN L. WEINREB is a young 52 year old board certified hematologist and oncologist with CLL who recently underwent a hematopoeitic stem cell transplant in an effort to cure his cancer.

What he wrote in his op-ed piece in the New York Times is an important variation on my mantra of us all being in this together. He argues persuasively for the value of everyone eligible getting vaccinated so that all our communities reach the critical mass, passing the threshold for "herd immunity" that protects those like us and newborn and others with weak immune systems who can not protect ourselves.

Please read and share his opinion piece as I have done. This editorial is an essential teaching especially this time of year. I am grateful that he wrote it and that the New York Times published it.

Dr. Weinreb is obviously bright and thoughtful, a big picture kind of guy, which make my musings about his particular circumstances even more intriguing.

What I find so interesting is that the doctor had chosen about three months ago a transplant as his way out of the CLL morass. Knowing none of his circumstances, I am itching to speak with him and pick his brain on why he, as did I, chose the most dangerous of all paths.

Maybe he'd disagree that a transplant is the most dangerous way to go.

I have argued that doing nothing is sometimes the most risky way to go. With a transplant, it's a 50/50 proposition that I am around in 10 years. Without it, I am waiting on a miracle.

Certainly throwing more toxic myelo- and immuno-suppressive chemo that the CLL clone has already proven it can tirelessly chew up and spit out, while our fragile marrow and immune cells take all the collateral damage is not only dangerous but foolish. A potential fatal misdirected drone attack, a self inflected wound. Too many cellular casualties from "friendly fire"can be the deciding factor in our final mortal battles.

But what if those were not his only alternatives?

Does Dr. Weinreb doubt the new miracle cures? Surely as a hematologist, he'd be ahead of the curve on the latest research on PCI-327654 and CAL 101 and GA-101 and lenalidomide and so many more. Did he see the paucity of bone marrow data and the short follow-ups and the infection risks as cautionary flags?

Had he run out of time or patience to wait for the perfect trial or to open his veins to yet another promising cocktail?

Had he been there and done that, tried one of the new pathway blockers or immune modulators and it failed?

Had he already set sail for a transplant in order to grab a new immune system and the treasure was too precious and fleeting to pass up?

Three months can be a life time in the quickly changing world of CLL research these days. Would his choice be different today?

Dr. Weinreb is sensibly not seeing patients right now, a time that I so well remember. I don't have his email address. I will try to reach him by a call to his office or an old school USPS letter, doctor to doctor and see if he might write a guest post here.

One more thing to do that was not on yesterday's to do list.

Happy New Year to all.

We are all in this together. And that is a good thing.