ASH 2015: Dr. Stephan Stilgenbauer on clonal evolution in CLL (chronic lymphocytic leukemia) and update on many upcoming meetings

This week in the 2015 Conference Coverage section of the CLL Society website, we have posted an interview with Dr. Stephan Stilgenbauer as he discusses clonal evolution at the American Society of Hematology annual meeting in December 2015 in Orlando. You can see a summary and view his interview here.

Last week was very busy as I attended the CLL Research Consortium meeting from Wednesday through Friday and then took a redeye flight to Atlanta for a CLL educational meeting on Saturday. I spoke to the 30 attendees, and was thrilled that almost 90% of them already knew of the efforts we have been making with the CLL Society.

There are more meetings coming up for those of us affected by CLL:

March 12th at 7:30 AM in Scottsdale, AZ: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options will be hosted by the Lymphoma Research Foundation. You can find out more information and register here. There is no charge to attend.

March 17th at 6 PM in Chicago, IL: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here.  There is no charge to attend.

March 19th at 8 AM: The Southern California Blood Cancer Conference sponsored by the Leukemia and Lymphoma Society will be held at the Anaheim Marriott. You can find more information and register here. The CLL Society will have an exhibit table at the conference. We look forward to seeing you there. There is no charge to attend.

March 21st at 7 PM: First CLL Society Support and Education Network Patient Support and Education Meeting will be held at City of Hope: For those of you in the Los Angeles area, a new patient support and education group is forming. For more information, view the flyer. [http://www.cllsociety.org/docs/cohmarch2016.pdf] There is no charge to attend.

March 22nd at 6 PM in Atlanta, GA: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here. There is no charge to attend.

April 2nd at 7:30 AM: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options hosted by the Lymphoma Research Foundation will be held in Manhattan Beach, California. It will be held at the Manhattan Beach Marriott from 7:30 AM to 3:30 PM. You can find out more information and register here. The CLL Society will have an exhibit table at the conference. We look forward to seeing you there. There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD
Volunteer Medical Director of the CLL Society

http://cllsociety.org
http://bkoffman.blogspot.com

Traveling Blues related to CLL (chronic lymphocytic leukemia)

Stairs to the beach at Torrey Pines State Nature Reserve

February may be an extra day longer this year, but that still doesn't justify my travel schedule.

I was in Charlotte, Tampa, and Atlanta this month to speak to patients and caregivers about the importance of a CLL support group. The meetings were successful beyond our highest expectations, and if the cards and the support line up, and I expect they will, we soon will be starting CLL specific support and education groups on the east coast with strong  local enthusiasm and support.

When I am on the plane, I wear my N95 mask and using prodigious amounts of hand sanitizer to preserve my health.

I was in cold and snowy Columbus at Ohio State for my CLL clinical trial (more on that in a later post). It is not easy to leave warm and sunny Socal for the snow.

I was in Dallas for just a few hours at the airport to meet others to discuss the changing nature of medical education for family doctors.

And I drove to San Diego twice. The first time was for a wonderful meeting with a fellow CLL patient who is doing important and worthy work to educate and counsel those fighting a major illness or dealign with a serious life event (much more on that later too).

The second trip (that gave us time to hike at the beautiful Torrey Pines State Nature Reserve on the way down) was to attend the two day international CLL Research Consortium (CRC) meeting with folks such as Drs. Kanti Rai and Bill Wierda and Neil Kay and Tom Kipps and John Gribben and Matt Davids and Mike Choi and Cathy Wu and Jeff Jones and Januario Castro and Jennifer Brown and Carlo Croce and Nick Chiorazzi and Philip Thompson and Jackie Barrientos and many many others. What a privilege to be there and to hear their ideas on new research directions and to be able to insert a patient's perspective.

Many of the trips saw me flying across the country for only a few hours before scurrying home.

All this time in planes and cars is crazy and unhealthy and expensive and inconvenient, and very very tiring, but I do it because when there are these opportunities to make an impact or learn something or forge a new alliance, if I can go, I will try to be there.

March sees me in Denver and Dallas, back to San Diego again to see Dr. Kipps, and a quick trip to the beach.

I will be speaking at the LLS Blood Cancer Conference in Anaheim on March 19. This is a great conference for patients and caregivers. Tanya Siddiqi from the City of Hope will be talking about CLL. Those who heard her at our City of Hope CLL Patient Forum in December know what a great  speaker she is and how deeply she understands CLL. Try to attend if you are in the area.

The CLL Society will again have a table there so please say hello. Last year's LLS Blood Cancer meeting was our "coming out party", and this year we get to brag about all that we have accomplished in our first year and our plans for 2106 as a non-profit.

Yes, it has been and will continue to be crazy with seven trips out of town in the month (and one I didn't include on January 27), but today, I have nothing except for some phone calls that I must do on my schedule.

I plan to enjoy my down time listening to the Beatles and some be-bop and then going for a long walk.

Sunset at Torrey Pines on our way to San Diego

From One CLL trial to Another for An Aggressive CLL (chronic lymphocytic leukemia)

Friends,

This week in the Clinical Trials section of the CLL Society website, we have posted an article authored by Adam Irgon. He shares the story of his fast moving CLL and his struggles to control it especially in the context of two different clinical trials. His gritty tale of courage spares no details and is not for the faint of heart, though it does finish on an upbeat note. You can read about his ongoing journey here.

This week will be another busy one. I’m heading to the CLL Research Consortium meeting on Wednesday and then taking a redeye flight on Friday heading to Atlanta for a CLL educational meeting on Saturday, February 27th. It starts at 9:30 AM at the Sheraton Suites Galleria-Atlanta [http://www.cllsociety.org/docs/atlanta.pdf ]. CLL patients will be sharing their personal stories, and a local CLL expert will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. A complimentary meal and parking will be provided and you are welcome to bring a guest. I will be at the meeting with an exhibit table and will stay afterwards to meet with attendees to discuss the resources available from the CLL Society. I look forward to meeting you there.

Wednesday, February 24^th: For those of you in the Miami area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held at the Miami Marriott Dadeland at 5:00 PM. A complimentary buffet dinner will be provided. I’m not able to attend this meeting, but you’ll have the opportunity to ask questions of the expert speakers. [https://www.flasco.org/events/living-with-cll-miami/] The one I attended in Tampa was super.

March 21^st at 7 PM: First Patient Support and Education Meeting at City of Hope: For those of you in the Los Angeles area, a new patient support and education group is forming. For more information, view the flyer. This is modeled on the group I have been attending in Orange County for more than 8 years, and I can not overstate its value.

THIS IS THE LAST WEEK: Join lymphoma patients around the world to help others understand the lymphoma patient experience and especially the subtype of CLL! Complete the 2016 Global Patient Survey today! 

In the meantime….

Stay strong.

We are all in this together

.

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com

HealtheVoices: A Blogging and Social Media Patient Advocates' Summit this April in Chicago

HealtheVoices 2016 is a great idea and a super opportunity for anyone wanting to share best practices and needing to learn that we are not alone in our struggles to build an online patient community.

What is it is a summit that mixes together established online superstars and passionate health advocates and new learners in the digital domain.

What we all have in common is a passion to advocate for our fellow patients and caregivers, a willingness to share, and an openness to learning.

Last year there were folks there from the HIV and cancer and arthritis and colitis and diabetes and psychiatric worlds, all using the internet as a tool for education and support. While it is mostly young advocates, all ages are represented. I learnt so much and made many new friends.

Here's a video from last year's event:

HealtheVoices Revised 2015 Highlights Reel 2.2.16 from Tonic Life Communications on Vimeo.

If you look carefully, you might see me and catch my name in the credits.

This year the conference will be in Chicago April 15-17.

So if you share  my need to help other patients on the world wide web through your blog or Twitter of Facebook or wherever, please consider applying.

The link to apply and learn more is here.

See you there.

Brian

Dr. Tam on Venetoclax (ABT-199) for treating CLL (chronic lymphocytic leukemia)

Friends,

This week in the Conference Coverage section of the CLL Society website, we have posted an interview from the 2015 iwCLL meeting with Dr. Constantine Tam. We talked about Venetoclax (formerly ABT-199), the early experiences and the results that are being achieved now. It's very informative and worth watching all the way to the end. You can see that interview here.

I have posted about quite a few CLL educational meetings that have been organized by other associations in 2016 and will be posting about more as we become aware of them. We will travel to as many as possible to both create awareness of the CLL Society and our resources, but also to help organize patient/caregiver support groups where there is interest. Many of you have shared with us your locations and your interest in having a support group in your area. Know that we have captured that information and will post new information as it becomes available. The CLL Society will also be planning a few patient/caregiver educational meetings this year and we will keep you updated.

In the meantime:

CLL Meeting in Miami, FL: For those of you in the Miami area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held on February 24th at the Miami Marriott Dadeland at 5:00 PM. A complimentary buffet dinner will be provided. I'm not able to attend this meeting, but you'll have the opportunity to ask questions of the expert speakers. Register and find out more information here.

CLL Meeting in Atlanta, GA: For those of you in the Atlanta area, we just became aware of another patient meeting in February: Saturday, February 27th in Atlanta starting at 9:30 AM at the Sheraton Suites Galleria-Atlanta (View Atlanta flyer). CLL patients will be sharing their personal stories, and a local CLL expert will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. A complimentary meal and parking will be provided and you are welcome to bring a guest. I will be at the meeting with an exhibit table and will stay afterwards to meet with attendees to discuss the resources available from the CLL Society. I look forward to meeting you there.

Stay strong.

We are all in this together

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com

Good news from OSU with lab results back to normal including all my liver tests for my CLL (chronic lymphocytic leukemia) Ibrutinib Trial

As some of my readers may know, my liver tests were slightly elevated and then climbed a little higher on a second blood test 3 weeks later for no good reason.

Spoiler alert: they are back to normal, and not barely normal but back into the low teens again.

I refuse to take any blame for why they rose (I don't drink, have no known toxic exposures, take no high risk drugs, have not been sick, and have a very low risk lifestyle for any type of hepatitis), but I will take all the credit (along with my wife) as to why my transaminases normalized.

Before I share what I did with my wife's help, please understand I am not recommended this for anyone else. Your mileage may vary. Please check with your doc before making any changes.

So what did I do?

First I stopped Co-Q10 that my dentist recommended- that didn't seem to help. They continued to climb.

Next I stopped verapamil for my blood pressure- it can significantly raise the blood levels of ibrutinib, but ibrutinib has a very wide therapeutic margin so I am not sure a high level is a bad thing. Anyway, it is not associated with liver inflammation as are other kinase inhibitors such as idelalisib.

My BP is fine off the drug as I suspected, so I am staying off.

Next I started adding fresh home ground and juiced organic turmeric and ginger and garlic to my usual daily green juices. And I noshed on some dark chocolate covered coffee beans (better than the Gershon method of liver detox by coffee enema). Word to the wise: some of these herbs can have a mild blood thinning effect.

My spicy concoction should cure what ails you, whatever ever it is.

And just to be sure, I added in some organic milk thistle tablets whose liver calming effects are celebrated in the alternative medicine world and doubted in allopathic circles. However, they all agree it is pretty safe. I think the data is convincing that it works for some liver issues.

Would my tests have fallen on their own? Probably, but I'll never know and it's empowering to do something as long as it's safe and approved by your treatment team.

My other lab results were good too.

My CBC remains healthy with no anemia, and no real abnormalities. My ALC (absolute lymphocyte count) was 2.1 which is high for me, but is in the bottom half of the normal range.

The rest of my chemistries were good except for a mild elevation of the LDH that is not worth worrying about. It is trending down and is just a touch high.

The fancy tests that may carry heavy prognostic import are pending and will be for weeks.

I am talking about my flow cytometry and the special testing for the mutations that might lead to ibrutinib resistance.

There will be more to share as more results come in, but I wanted to rush out my good news.

Richter's Transformation and on the Road Again

Friends,

This week in the Beyond the Basics section of the CLL Society website, we have posted an interview from ASH 2015 with Dr. Januario Castro, although discussing an abstract that was presented at the 2015 iwCLL meeting. We talked about Richter’s Transformation, one of the most aggressive turns that chronic lymphocytic leukemia (CLL) can take and specifically, a clinical trial that will be available soon that uses a non-chemo approach to therapy. You can see that interview here. [http://cllsociety.org/2016/02/richters-transformation-of-cll/]

CLL Meeting in Tampa, FL: For those of you in the Tampa area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held on February 11^th at the Embassy Suites Tampa Airport at 5:00 PM. A complimentary buffet dinner will be provided. I’ll be there giving a talk about the importance of support groups. Also, you’ll have the opportunity to ask questions of the expert speakers. Register and find out more information here. [https://www.flasco.org/events/living-with-cll-tampa/]

CLL Meeting in Miami, FL: For those of you in the Miami area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held on February 24^th at the Miami Marriott Dadeland at 5:00 PM. A complimentary buffet dinner will be provided. I’m not able to attend this meeting, but you’ll have the opportunity to ask questions of the expert speakers. Register and find out more information here. [https://www.flasco.org/events/living-with-cll-miami/]

CLL Meeting in Atlanta, GA: For those of you in the Atlanta area, we just became aware of another patient meeting in February: Saturday, February 27^th in Atlanta starting at 9:30 AM at the Sheraton Suites Galleria-Atlanta. CLL patients will be sharing their personal stories, and a local CLL expert will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. A complimentary meal and parking will be provided and you are welcome to bring a guest. I will be at the meeting with an exhibit table and will stay afterwards to meet with attendees to discuss the resources available from the CLL Society. I look forward to meeting you there.

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com

World Cancer Day and The Role of CLL (Chronic Lymphocytic Leukemia)

Friends,

February 4th is World Cancer Day and there is so much we can do.

Visit their website: http://www.worldcancerday.org and learn the many ways that we can help ourselves and help others win the war on cancer.

Those of us whose lives have been touched by CLL can do even more.

No one wants cancer, but we can still squeeze some goodness from the malignant clone in our bodies.

Unlike many more aggressive cancers, CLL almost always gives us time to learn about our disease, to get the support and knowledge we need and to make a plan.

Check out our welcome video if you haven't seen it, and even if you have, visit it again in the bottom right corner on the home screen.

I watch it regularly. It helps center me.

Another weird advantage we share with other blood cancers is that our cancer is easy to sample, to biopsy. Unlike solid tumors that usually require a scalpel or at least a guided needle biopsy by a trained interventionalist, we can easily share samples of our cancer with the lab by visiting any competent phlebotomist.

Hence, CLL and other liquid cancers such as CML (chronic myelogenous leukemia) are the poster children for the development of biological (think monoclonal antibodies such as rituximab) and targeted non-chemo therapies such as imatinib or Gleevec for CML (the first truly targeted therapy and a true miracle drug) and the game changing oral medications, ibrutinib and idelalisib for CLL. And more are coming soon.

These breakthrough therapies were developed in leukemia first because our cancer is so accessible and so easy to study.

Those covering the cancer revolution may give more press to the big four cancers: breast, prostrate, lung, and colon, simply because of their overwhelming numbers, but we are where the revolt began against accepting the old limits.

We changed the paradigm. We lead the charge.

And we will remain at the bleeding edge of the therapeutic revolution if we are willing to share our blood with the researchers.  It is because of these treatment breakthroughs that CLL won the strange award of CANCER ADVANCE of the YEAR awarded by ASCO (American Society of Clinical Oncology) in 2015.

So please give your blood if asked for research.

Support us at the CLL Society in our quest to support and inform others: http://cllsociety.org/donate-to-cll-society/

Support the researchers.

We are getting close. I can smell a cure.

Wishing us all the best for 2016

Stay strong.

We are all in this together

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org
http://bkoffman.blogspot.com

Dr. Kanti Rai on the Future of CLL (chronic Lymphocytic Leukemia) therapy

Friends,

This week on the CLL Society website we have posted an interview with the great Dr. Kanti Rai when he sat down to chat with me during a break from the International Workshop on CLL held in Sydney, Australia in September 2015. He shared with me what is different about CLL management at the end of 2015 compared to the past 40 years. You can see that interview here. [http://cllsociety.org/2016/01/1213/]

If you are not familiar with, or would like a refresher on the staging system that Dr. Rai developed in 1975, you can read about the Rai Staging System here, in TheBasics section.

Dr. Rai has done much to improve the care of us CLL patients and we are all in his debt.

As we are preparing for the 2016 issues of The CLL Tribune, consider sharing your story, or advice, or perspectives on how CLL has impacted your life and consider authoring an article. Send us a message and we can connect to discuss the details. [http://cllsociety.org/contact-us/]

CLL Meeting in Tampa, FL: For those of you in the Tampa area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held on February 11^th at the Embassy Suites Tampa Airport at 5:00 PM. A complimentary buffet dinner will be provided. I’ll be there giving a talk about the importance of support groups. Also, you’ll have the opportunity to ask questions of the expert speakers. You can register and find more information here: https://www.flasco.org/events/living-with-cll-tampa/.

CLL Meeting in Charlotte, NC: For those of you in the Charlotte area, we just became aware of a patient meetings coming up in February: Thursday, February 4^th in Charlotte starting at 5:30 PM at the Hampton Inn & Suites Charlotte The flyer is at http://www.cllsociety.org/docs/charlotte.pdf. CLL patients will be sharing their personal stories, and a local CLL expert will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. A complimentary meal and parking will be provided and you are welcome to bring a guest. I will be at the meeting with an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in the area. I look forward to meeting you there.

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com