Saturday, December 31, 2011

To do list

If I put it online, I will do it.

I like to do "to do list". It gives me this warm false sense of making progress. It's virtual progress, but if the illusion of tackling a problem is good enough for our do nothing congress, can't I borrow a page from their book.

Here goes, my immediate, no big picture but the small details that all add up hopefully to something positive at the end of the year, get moving soon list.

CLL Related:

CLL is so often on my front burner (the important and urgent quadrant of what needs to done). It would be so great if only it was on the "give back" burner.

Clinical trial:

1: Stay on top of my insurance issues. (Calls, emails, documents, thank yous)
2: Stay on top of getting medical records (UCSD, CoH, and St. Jude)
3: Update and fill out my clinical summary
4: Research where to stay, where to eat (vegan), and where to pray (Kaddish every Friday night for my dad)

Disability Insurance:

Complete my part of the same form again that keeps roof overhead and food on the table and get the doctor's part to my doctor

CLL Hypnosis Self-Help Audio Files:

1: Read my friend Dr. Larry Deutsch book and help plan how we can get these files to everyone who needs them while raising money for CLL research.

CLL ASH Education for Primary Care Providers:

1: Final Video editing by Tuesday
2: Education text between video clips
3: CME Q+A
4: Reference checks
5: Posting on line

CLL ASH for Education for Patients

1: Clean up and post links to a yet to be established U-Tube or such link. I think my son can help with this.

CLL Research:

1: Get back to my basic research on how CLL trials are conducted. I have only tabulated 10% of the data so far.

CLL Conferences:

Looking into Niagara Falls again and ASCO in Chicago. Dreaming (and researching) funding for the European Hematology meeting in the spring

CLL Adventures:

Cancel Hawaii. More on that later.

CLL CME Lectures:

Prepare three powerpoint lectures on CLL, transplants, and anemia for other doctors that I will giving in Las Vegas and Anaheim this spring

This does not include the daily intake of CLL related emails and articles.

Not wanting to sound too chipper, I am happy to be this busy. It feels alive and purposeful.

I think I will put off on the non-CLL parts of the list.



Friday, December 30, 2011

Blue Angel

An angel swooped in from my past and called from Blue Shield with good news. My former part time case manager who helped me so much with my transplant three years ago got things back on track with clear lines of communication and clearer directions on what is needed for the answer on whether Dr. Byrd's consult costs will be covered by next week.

More importantly, she has promised to stay involved when I apply for the trial coverage.

I am very grateful, and cautiously optimistic and I am very pleased with Blue Shield.

All's well that ends well.

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I am being very nice, honest, though at times it is not easy, answering the same questions over and over again after waiting on hold to cheery recordings of all the same tips about how to save my insurance company money.

Today is my third day of hours on the phone with Blue Shield of California member services, prior authorization, appeals, case managers, and supervisors, and who knows what and who else trying to get authorization for the Ohio State University consultation with Dr. Byrd for my clinical trial with PCI-32765.

It seems that their right hand doesn't know what the right wrist and the right pinkie is doing.

It's an appeal. It's a prior authorization, It's wrapped in with the clinical trial. No, it's back to a prior authorization. It's Super-Conflated.

After hours on hold and multiple lateral passes yesterday, I thought that when I finally got a phone number and a reference number from a case manager for my local oncologist to use with clear instructions of what he needed to do, the path was clear to a yes or no.

Boy, was I naive. His nurse got the same polite run around that I did today.

But everyone (even me), is very sweet and tries to be oh so helpful.

Remember all I am trying for is authorization for the relatively cheap mandatory consult to assess whether I am a candidate for the trial, not for the pricey trial itself. I understand quite sensibly that once it is ascertained that I indeed qualify, OSU will then apply for the trial coverage, and that is the real critical action. I am quite confident that will work out. And I am very confident that I will be in the trial by February.

I suspect, again probably naively, that the authorization for the trial itself is a more traveled route and an easier path to navigate.

This is just a fun and informative diversion in learning how the other big blue (not IBM but Blue Shield or BS) works.

The trial is the goal. I can pay for the consult, but not the trial. This is the practice run. I am keeping detailed records. I am hoping that I don't need them.

I am keeping my eyes on that prize. For a chance for real durable disease control. The excitement of a healthy and lengthy old age, a new drug that offers a true truce with my leukemia: these joyful possibilities almost get lost in these side battles.

I remain realistically confident that 2012 will be the beginning of the end of CLL struggles.

And very polite and helpful.

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Wednesday, December 21, 2011

Death and Renewal

Today is the winter solstice, the shortest, darkest, blackest day of the year.

Six months ago on June 21, the first day of summer, the brightest longest day of the year, I lost my father.

I have said Kaddish (the Jewish prayer for the dead) every Sabbath for him except thrice where a could not find a minion, the 10 Jews necessary to formally pray. It happened once in Cusco, Peru, once in a distant suburb of Dallas near the airport, and once on the road in Arizona. Other than that, I have enjoyed hospitality at all types of temples and synagogues all over the USA.

Though Kaddish is prayed ostensibly to guide his soul to a well deserved place of rest, it is more for me to remember what a son received and a father gave. We were good friends and honest counsel for each other, especially over the last part of out 60 years together. I miss him so much it still hurts .

I lost a sweet friend one year and one day ago. Another father but of three young children, not of one older son about to enter his seventh decade like my 84 year old father. Robert died of CLL too young, too soon, too unfairly, and with too much love left to give and receive.

Not much in life is guaranteed, but one thing for sure is that the days will grow longer and the nights shorter.

That must be enough for now.

The world of CLL is changing fast and it's good.

For the last week, I have wrestled long hours with many demons in the form of questions of insurance and chance and convenience and travel and risk and unknowns and timing and money.

I have had help from so many especially my family and a few dear friends, but also my insurance broker and my case manager and my local oncologist.

In CLL, there are three types of crises. The disease related ones, the treatment related ones, and the decision related one.

I have just slayed the last one- for now. I have made my next treatment decision.

I am gambling everything on getting into and doing great in the Ohio State University trials that include PCI-32765.

I am full of hope.

Tomorrow will be less dark than today for sure.

Fewer long shadows, more sunlight.

PS I have not forgotten my promise of a recounting of ASH. First I needed to heal myself. Or at least decide what was my my chance of getting to that place.

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Wednesday, December 14, 2011

Home from ASH

Finally home and ready to sleep after a long late meeting of our local CLL support group

Let me just say that the world of CLL is changing, and changing for the better.

Mechanistic understandings of what goes wrongs in the CLL clone and how to right it are starting to be translated from the bench to bedside.

Nothing is definite, but things look better than any time in the past.

More soon. I promise.


Tuesday, December 13, 2011

ASH Day 4

Yesterday was 13 hours of CLL, with a 1/2 break to discuss MDS.

I am heading home today with hope and information overload and sleep deprivation.

I will be posting some reviews of important sessions here soon, and after some editing, some audio and video over the next few weeks.

My friend Andy Schorr interviewed me as a patient/searcher and I will post that video later too.

But first I need to get home to my own raw food and some sleep.


Monday, December 12, 2011

Live from ASH ( Even Quicker interlude)

Looks as if the 11 q deletion is a much more complicated story than just ATM deletion.

This is good news and is one tiny step on the road to personalized therapy. More to come. Off to chat with Dr. Adrian Wiestner from the NIH.

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Live from ASH (Quick interlude)

Before I rush off to 90 minutes covering several research papers with new data on the genetics of CLL, I thought I would share want will be a theme in upcoming post.

There is greater and greater light being shone on the misguided pathways in CLL. Messages to be fruitful and multiply and live a long life are heard loud and clear. Messages that you need to change your evil ways, that it is time to let a new and more healthy well rounded clone take over the real estate that you are hogging in your malignant old age, these messages fall on deaf ears (or actually on corrupted signaling pathways).

But there is hope to realign this failed there are new targeted ways to unjam the circuits and turn up the volume.

Progress is being made.

Gotta run. Stay with me.

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Live from ASH

So much to share- mostly very good news for those fighting CLL or with family and friends facing similar struggles.

The problem is trying to blog about the meeting during the actual meeting is similar to trying to text while playing hockey. Something is going to go wrong.

Makes me understand why people tweet.

I will have video, audio, and text to share. I am even being interviewed myself.

Let me me just tease you by sharing that this is a most promising time ever for CLL research.

Stay tuned. Stay strong.

We are all in this together.

Brian Koffman- your faithful cub reporter live from ASH 2011


Monday, December 5, 2011

Insurance woes with Clinical Trial NCT01217749 at OSU using PCI 32765 and Ofatumumab

It looks like a tough decision I made to take the next step in my treatment path could be undermined by the big bad insurance company and the university teaching hospital with its inflated fees.

Here is what I wrote my online friends in the CLL community. This is aggravating stuff, but not the real bad stuff. Bad stuff is crashing or skyrocketing counts and worse. This is about money and a tilted system of health insurance. What could be bad, but I am not there yet is the removal of choice, the removal of a hope. I would hate that, but I am not there yet.

Soon I will post why this is my favored course of action today, but right now I am just trying to find a way to make it a realistic possibility. This is only the beginning. The door is not shut yet. I just need the pass code. Or the route to the backdoor. Or....


My CLL needs treatment again, and after much thought and research, my first choice is Clinical Trial NCT01217749 at OSU using PCI 32765 and Ofatumumab, BUT my insurance, ANTHEM HMO covers nothing non emergent out of state.

What I understand about the trial is that the meds are free but everything else (usual standard of care is the coy term used) would be at my expense at the wrack rate- pricy for the individual payor (unlike the insurers who often pay pennies on the dollar). Labs, doctors' visits, BMB, CT scans all would be my responsibility. Maybe over a $100,000 for the whole deal.

Do I have this right?

Any advice?

Is it possible to negotiate to get a discount rate or a flat rate for the study?
Is it possible to get the bulk of the work-up done in my home state where my only cost is the co-pay?

Any other thoughts? Insights?

It is hard enough to make a treatment decision, even it is a preliminary and tentative one.

As the old joke goes: Besides bankruptcy, what other side effects does this treatment have?

Thanks as always. I bet there is a way to make this trial happen if it should. Just another challenge. Compared to CLL, this should be easy.

On a less challenging note, I am excited to be off to ASH next week as a accredited reporter (I keep picturing Jimmy Olson at the Daily Planet). Lots of good stuff on CLL especially PC! -32765 and CAL 101 and lenalidomide. In addition to trying to save my own skin by learning the latest on CLL and transplants and ITP, I am looking to help other family docs learn more about hematology and will be videotaping interviews with several experts.

Email if you have any burning questions or thoughts on what you or a good primary care provider should know about blood disorders. I will let you know when I post the videos.

We are all in this together (well maybe not the insurance companies).


I always have the rebbe to help me:

"Life is a very narrow bridge. The important thing is not to be afraid".- Rebbe Nachman of Bratslav

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