Why Patients Need to Be Heard At Medical Congresses on not just CLL (chronic lymphocytic leukemia) but on All Important Medical Issues

I was asked by friends to help with a campaign to ensure that the voice of informed patients be heard more loudly, more clearly and more often at large medical congresses such as ASH and ASCO. To that end, I shot a series of very short videos, starting with this one that introduces who I am and how I got involved in traveling the world, teaching my fellow patients and physicians about my disease, CLL and how patients approach their medical decisions.

Me in front of bleach painting by my son, Will Koffman

This video effort is directed at doctors, and is an important but smaller piece of my larger work that focuses on providing us patients with the best possible resources to educate and support ourselves in dealing with our largely incurable cancer.

So here is my first "ask".

Please complete this survey to help me and a team of patients, nurses and doctors across the world to meet the unmet needs of the CLL community.  It will take you less than 5 minutes to do.

We plan to start by constructing the most patient friendly, robust and relevant CLL specific website. 

We don't plan to step on the toes of the other great websites out there and replicate what already exists, but to make something different, deeper, and more accessible and searchable. Please remember that our goal is to meet the unmet needs of our community.

Next, we are going to build a facilitated network of CLL specific support groups across the country, linked by the mother website and a common goal to make sure we are all getting the best possible care for our particular circumstances.

We can't do this alone and we already have a strong team of folks in place: doctors, nurses, researchers, advocates and patients, many of whom you already know and respect from the videos hosted on this blog and/or their ubiquity in the CLL forums and other helpful sites.

Truth is that the CLL world has changed radically in the last few years, and what needs to done has outgrown the capacity of this humble blog. It will slowly morph back to my telling my own story and sharing my opinions, but in order to teach and support my fellow CLL patients, a IRS approved nonprofit 501(c)3, The CLL Society Inc. (EIN # 46-4131354) will largely be doing the heavy lifting, starting with designing a web presence from the ground up.

Stay strong. We are all in this together.

ASH 2012: Dr. Adrian Wiestner: Final Thoughts

The thoughtful Dr. Wiestner of the NIH has some provocative things to say in this brief 2 minute wrap up of our interview.

He says that there may be a significant role for chemotherapy in the future for some carefully selected CLL patients.

He reminds us that these new drugs should force us to re-examine our bedrock views about cancer cocktails. They should force us to revisit all our traditional approaches.

That is a hard thing to do, but a good thing. Doctors are by nature conservative and slow to change.

But there is a sea change coming and Dr. Wiestner suggests that this is a time to really consider what  old baggage can be tossed and what we might need on this voyage.

IMPORTANT: Dr. Wiestner's trial at the NHLBI still has openings for treatment naive 17p del patients. Check out http://www.clinicaltrials.gov/ct2/show/NCT01500733?term=CLL+17p+Ibrutinib&recr=Recruiting&rank=2 . This is a great opportunity at the NIH for those who qualify and I understand a number of fellow Canadians have already enrolled.

Soon I will share his updated data on this research.

Right now, here is the second part of the ASH 2012 interview:



I still have a few surprises from ASH 2012, before I start posting from ASCO 2013 later this month.

I am happy to share that my good friend and fellow CLL survivor and patient advocate, Andrew Schorr of Patient Power and I will be combining forces to offer up several interviews on CLL and other blood and solid cancer from ASCO in Chicago.

I am looking forward to working with Andrew and his professional and pro-patient team.

I have so much I want to share here: more on non-chemo approaches, important discussions on the place of cross-overs in clinical trials, new data from the AACR meeting, what we can learn from the death and autopsy of those who didn't make it, new trials starting up and old trials closing down.

So much to share.

On a personal note, May 7th marked my one year anniversary of my taking ibrutinib. I still remember my disbelief that my nodes seemed to be shrinking in those first few days, but they were. And still are. a year later, albeit, in a less dramatic fashion.

So much has happened in this last year. My mission here and elsewhere is push that we patients can get the best possible care, and that involves more research, great doctors, and wise and brave patients.

We have all those and we sure have moved the bar forward in the last year!

Weddings Come First

I have been celebrating a wedding for the last three days and that takes priority over CLL and airplane drama and the latest news.

It was the reason I missed ASCO where I would have loved to have attended the oral presentations on ibrutinib by Dr Byrd and others and wish I could have heard Kanti Rai's acceptance speech for the award he  received in recognition of his lifetime of monumental achievements. And to have just run into all the other CLL gurus I am privileged to know. Do some more interviews. Digest more. Share more.

But weddings come first. The information from ASCO will all be available soon enough.

Nothing new to share about my response.

Back to Ohio next week for my first CT scans since starting on the ibrutinib. That will tell a tale.

Will finish my airplane story, soon, I promise. But  not tonight.

What's New

Patty is out of town for Will's graduation from MICA in Baltimore. Today he received his BFA magna cum laude at the ripe old age of 20.

On the side bar are his old http://killmecomix.com/ and his new Candy for your Eyes web pages. They are wonderful. Patty and I are so proud.

With Ben's graduation from Art Center, Pasadena in film direction last month, all our kids are through college (at least for now).

So if you need someone to help with a film or commercial, especially a documentary, contact Ben http://www.bkoffmanart.com/ and if you need any illustration contact Will. You won't be disappointed.

So now that I am finished shamelessly kwelling (Kvell, a Yiddish term, means 'to be bursting with pride; boast; gloat', and is usually used with the connotation that one is delighted with the accomplishments of one's children) and promoting my sons, let me kvetch ( this Yiddish word means grumble or complain) for a minute. I am getting tired of my own food prep (remember I eat no cooked food) and more tired of just being alone. The cat and dog help, but I get pensive and moody when I am alone for several days at home.

Today I made a raw organic broccoli-avocado-tomato-squash-brazil nut-coconut milk soup. It wasn't that great but I ate it all for lunch and dinner. I sure don't want to face any more of it left over tomorrow.

And the 4.7 earthquake didn't help my mood.

Nuff of this pity party.

I saw the new Star Trek movie at the local IMAX with my son. Dazzling.  Must see for any fans. The best in many years. I hear the Trekkers are complaining that there is so little to complain about.

Heard some great jazz last night at Jack Prather's CD release party. Listen to some of the material @ http://www.myspace.com/jackprathermusic 

Live jazz is hard to beat. My friends Leonard Thompson on keyboards and Dewey Ernie on vocals were there which made it extra sweet.

The ASCO (American Society of Clinical Oncology) meeting is starting. I have been reviewing the abstracts on CLL and transplant.

I wish there was some great breakthrough to report, but I was underwhelmed.  An interesting and important paper on VRE (Vancomycin resistant enterococci) post transplant, a new dosing schedule for OFAR, new monoclonals in the pipeline.

Time to refocus.

A demain