Raw Data from seeing Dr. Kipps and starting lenolidamide

Here are my very rough notes written in the courtyard of the Moore Cancer Center before the drive back to Newport Beach from seeing Dr. Kipps in San Diego.

My own musing on what it all means will follow, but this may get you CLLers thinking about the next move.

I am warning you these are unedited notes. And this is all Kipps, or at least my understanding of Kipps, and not my comments on his comments:

Dr Kipps 4/26/10

ITP RX (Dex-R) recommended by Dr. Miklos?

Kipps not keen as he feels ITP may just recur even if it works (which he doubts) and no problem with the present approach of IVIG I am getting a twofer (infection protection and ITP management)

Continued IVIG

IVIG OK for years for ITP may be able to get down to every 28 days or even DC may have turned off the mechanism of ITP with the IVIG, it also protects against many virus, some unknown - has strong anti-viral activity and effects we don’t understand

BTW, Kipps thinks it is the R in the FCR that lead to the life extension in German Studies

Consider lenolidamide- risk? DVT, decreased pl, neuts, TF, TLS, but last two worse if wait too long Would need to take ASA 81 mg for DVT prevention

Might it trigger ITP? A definite risk because of immune effects Might raise my IGG

Also more flare if less prior RX esp F

May not qualify for any study as I have had a HSCT Probably not, so need to take L off study

EXAM:

Largest node now 1 x 2 cm L supraclavicular

Also more numerous nodes by palpation Groin OK LS OK

Also A-Lymph-C is higher ( A-Leuk-C and % lymphs) and LDH (Kipps says too non specific to give much value) is higher so disease is recurring?

Could start Lenoladimide now but not clear yet – disease is definitely progressing, but at what rate?

Will wait three months and decide –Get BMB 1 ^st and probably CT

Need to do before disease takes off. It is indolent now.

Discussed starting now or waiting three months- It is my call.

Not keen on CAL 101 no CRs but have seen CR with Lenolalimide

It's gone

Somebody very smart grabbed by King's ticket.

I am enjoying a leisurely breakfast with family and friends in the loft in Emeryville.

My son-in-law, Nick, did a dramatic transporting presentation with much conceptional sparing with the review committee last night.

It took every once ounce of control for me not to shout, GO NICK GO!

The price of Love, eh

This is how much I love my son-in-law. I'm trying to sell my great ticket to the 6th game of the Stanley Cup playoffs tomorrow so I can stay longer to play with my daughter and husband in Emeryville, post thesis defense.

So here is my crass commercial pitch, but it is for good cause- Hockey

Wanna a great seat to the game? Go to http://www.ticketmaster.com/ticketexchange/ Navigate to the LA Kings for the game tomorrow. My single ticket is Section 332, 2W, 10 Front row where the Kings shoot twice. It is one of the best seats in the cheap section and it is price below market to sell.

I am now certain my Canadian citizenship is in jeopardy. Despite the fame of Frank Gehry and Author Erickson and Moshe Safdie and Bing Thom, to favor architecture over hockey, I must be labeled a traitor.

Boring

Boring. Another normal blood count.

Platelets were a fabulous 241,000 16 days after by last IVIG when they were only 155.

Now I just must be brave and try to stretch my time between infusions to a full 3 weeks

I like boring,

Primary Issues

I am very proud of the first online edition of Primary Issues or PI. I wrote the Medical Directors' Corner editorial focused on how the healthcare changes will effect family doctors.

Relax, it is not nearly as controversial as my Washington Times commentary, but is fiercely pro family practice.

PI is a great online resource for primary care providers. I am glad to be there at its launch as an interactive source for medical and relevant information for docs like me.

Soon, I will be writing an article dear to my heart on medical blogs so the professional community can catch up with their patients on what is happening in the blogosphere.

If you keeping going back, over the next few weeks, you'll probably find something I will be putting together on the new Physician Payment Sunshine Act and an article on vaccinations.

Please check it out: http://www.primaryissues.org/

Thanks

A cool picture of John and Paul in LA in 1973

This rare photo is rumored to have been taken on John's lost weekend, giving lie to the stories that the two boys from Liverpool had a major falling out.

It has nothing, nada, zilch to do with CLL which is precisely why I am sharing it.

Thank you, Howard. I love you.

I also wear my Beatles watch all the time. It is a little known medical secret that anything Beatles is good for platelets and bad for leukemia.

Let it be.

A lighter note: HAIRSPRAY

Patty and I am just back from seeing Hairspray.

Cheap rush seats at the last minute. The theater was not full which was a shame.

I had seen it with the amazing original Broadway cast with Harvey Fierstein years ago and loved its exuberance. The touring company here in the OC did a great job with all that dancing and singing. A fun time.

My only regret is that I was the only one in my section dancing at the end of the show. I guess OC is just uptight.

Please forgive me, but I love musicals. Patty doesn't but even she was captured in the energy of this one.

A great escape.

Another Soul Gone

This is getting tough. Another soul gone about two years post transplant. Same hospital as me. Same doctor as me. Found out in a chance encounter with the recent widow.

I can't share all the details as that might breach the grief of his wife, but let me say that even though I really didn't know her husband in his life, this one sears. This one leaves scars. This one is a punch in the gut that I didn't see coming.

Last year, we sat across from each other at the 2009 transplant reunion in the gardens in front of the City of Hope. We are in the same group photo. Today I sat across from the wife bereft of her life long companion. We both were having trouble digesting the cold and lumpy reality that I am still here and he's not.

Swine flu was piece of his final downhill spiral pulled faster in the wrong direction by scarred lungs and weaken immunity.

Like my other friend, he was cancer free at the time of his death. Does that help his wife of 41 years cope with an emptied world? Is macabre irony part of the divine plan?

What comfort can I offer? What light can I shine?

I told her that the only way out is through.

.

The only way out is through.

The only way out is through.

Does this Gestalt mantra console? No, but it's true.

To add to the irony, I came home to an email with my first assignment as a member of the Social Media Advocacy and Response Team (SMART) volunteer force for Be The Match. New plans to help with the good work of recruiting more donors for more bone marrow transplants. More transplant, do I want that, I ask myself.

Yes I answer, but only after too long a pause.

I know we need more saints on the registry. I know more lives can be saved by a stranger, including my own a second time around with this blunt and potent tool of life and death.

I know I need time to recoup first.

Preparing for Death

I hate to be so bleak, but this issue comes up not because I am anticipating my imminent demise, but because I am still around while others are not, and I must deal with the pain.

It is the natural course for a child to bury a parent. While painful, the other way around is unimaginably sadder. My dad is doing better since his recent stroke and its complications, but 83 is a fragile age, especially when you smoked for about 65 of those years. I will visit him again next week.

I must be prepared. So I am turning to my root, reading on Kaddish and sitting Shiva.

To my Christian friends this is a time of renewal and resurrection through faith in a power much greater than any that exists only on this earthly plane. To my Jewish readers, a time of passing over, dodging the angel of death by knowing the right signs and keeping the covenant. To all my friends on this side of the equator, this is the season of rebirth and daffodils and promise.

With my dad's recent close call, with Ron's funeral, with too many fellow CLLers who must first swing closer to death with dangerous treatment options, to ultimately slingshot past it, I need some shelter in this storm.

I will construct my edifice out of my tradition, but will it be strong intellectually, but a flimsy fortress against the stabbing emotional winds?

Like how I approach immunotherapy or DLIs, I will be hitting the books starting with

The Mystery of the Kaddish: Its Profound Influence on Judaism [Hardcover] By: Leon Charney

Guess you can tell I am an Amazon fan. Bibliotherapy.

Will it be enough? I doubt it. I must walk the walk, not just read the read, but this will give me a direction.

As a doctor, I spent much of my life helping people with this issues. Now it is time for this physician to heal and comfort himself.

I have not lost sight of the here and now joy that springs from the coldly wonderful fact that I am on this side of the dilemma, dealing with handling the losses and the unanswerable questions and the pain, and not being the source of them.

I also have not lost touch with the responsibilities, the mitzvahs this engenders.

Doing this work will help me. It always has.

Lessons learnt but at what cost?

A letter I wrote to others with leukemia. This is an expansion on a recent post.

Friends,

I don't think anyone has posted on the sad news of the recent passing of my friend, Ron after a valiant struggles with an aggressive 17p del CLL, complicated by severe GVHD and recurrent infections after a transplant and DLIs at MDACC, Houston. He survived only 3 and 1/2 years from the time of diagnosis.

Ron was 48, a father of 5, a clean living, marathon running, church going sweetheart. I knew him from our local support group and he was a kind and generous intelligent man.

I don't share this bring you down, but to see what can be learnt from those who did not follow his blog.

I don't recall all the details of his therapy but I'll will tell you what I have gleaned.

First, while I am sure Ron lived longer because of his faith, his exercise, and his healthy lifestyle, sadly for most that is hardly enough.

Ron knew that and went quickly to Dr Khouri at MDACC. After a hard fought deep remission with different aggressive therapy combos , which included Campath. He chose to be aggressive with an earlier transplant .

He did well after FRC conditioning for his HSCT 1000s of miles from his Californian home because he had done his research. This is the same protocol I had 2 months later.

Ron's chimerism stayed mixed, and the CLL crept back. He kept going back to Houston for DLIs at escalating doses. they did nothing but he looked great. Ran a half marathon post transplant. The last DLI finally cleaned up his CLL, but at what a cost. He may have died freed of cancer, but he was soon back in Houston with severe GVHD. He was hospitalized longer for GVHD than his transplant .

At some point he made a decision to stop flying back to Houston, but there was never a clean handoff to a transplant team in SoCal.

The immunosuppressive drugs including steroids took their toll. Recurrent infections, bacterial and fungal, treated with antibiotics lead to toxic mixes. His kidneys shut down. Dialysis was started. Nausea led to weight loss and weakness.

The last infection was too much. He was only 48 years old with 5 kids.

So here's what I have learnt.

It may not matter to CLL how cleanly you live or how hard you work out or what a nice guy you are or who prays for you. (This is coming from someone who still believes in the power of all these).

You can do all the research and pick the top CLL guns and still have a lousy outcome.

There are risks in being aggressive, both with chemo and transplants and especially with DLIs ( Remember I am the guy who griped about NOT getting DLIs for my mixed chimerism)

The therapy can kill you as well as the disease. We all know this intellectually, but in Ron's case this burdensome fact is impossible to ignore.

There are risks in being treated a plane flight away, especially if you don't arrange in advance a clear and clean handoff to the appropriate local experts. Community oncologists will be the first to admit they are not transplant experts. Few doctors are. Few are CLL experts, truth be told.

Finally, this is a bloody rotten disease.

Victor Frankl (author of the life changing book, Man's Search for Meaning) said tragedy is suffering without meaning. I am look for meaning in this loss, but in a heartbeat i would throw away any lessons and any meaning to have my friend alive.

So sad.

Stay strong.

Brian

It should be stoooopid!

My oldest son, Ben, is doing an instillation at the event, so we will come early for the art, but are not likely to stay late for the partying.

Occasionally I needed to be reminded that life can be more light hearted and whimsical that reading the Vilna Goan and medical texts.

Come if you are able.

Open Your Mind

Type:

Music/Arts -

Start Time:	Saturday, April 3, 2010 at 6:00pm
End Time:	Sunday, April 4, 2010 at 6:00am
Location:	TOW Art Space, 1450 E. 6th Street, Los Angeles 90021

Description

The show titled Question Mark will be a spectacle that we have all been awaiting in 2010. Minimal theme, genre, and general idea. THERE IS: Significance, F.U.N., and bliss. Eight musical performers accompanied by a twenty person collaborative installation.

Visual display, art, live art, instillation, music, performance, miscommunication, spontaneity, and blah blah blah leading to an experience.

FUNDERSTORM (LA) - Punk electro hip hop
CLASS PROJECT (LA) - Hip hop
ROOFTOP RIDICULE (Las Vegas) - Alternative Now
LOW SYNC (LA) - Brazilian Heavy Metal
COCO COLUMBO (LA) - Indie Rock
SLUMBER BEAST (LA) - Chamber style string arrangements
DJ FRANE (LA) - BEST funk soul DJ
DJ ALASKA (LA) - Fierce Dubstep "Wobble" Electronic

ARTISTS: Non-stop hunger to live life full

FUZZ BEAST
ROXANNE ABELL
ANTOINE JUAN-ELVIS APHESBERO
JAKE T. REUL
BRADLEY THOMAS WATKINS
CAT WALSHAK
BEN KOFFMAN (LA MURAL FRONT)
MONTANA JOE

Possible appearances by: Meagan Boyd, Tumbleweed & Turtle. We will all be working on the behalf of Ashira Siegel.

This is going to be Stooooopid! Grilled Cheese, Home Brew, Tacos, BYOB (If you don't love home brew...)
Correlating bicycle rides posted on MidinightRidazz.com, heavy hitters.

FIVE DOLLAR COVER TO BENEFIT THE SPACE, MUSICIANS, AND ARTISTS
6 P.M. TO 6 A.M.
FOR THE MUSIC COME AROUND 9PM
FOR THE ART COME EARLY AND STAY LATE