Sunday, August 21, 2016

Terry Evans Discusses his Evolution as a CLL (chronic lymphocytic leukemia) Patient and Advocate

It has been incredibly busy since I returned stateside at LAX from Nairobi. Between the jet lag and catching up with work and upcoming activities for the CLL Society, I’m in desperate need of sleep!

But I have some very good news. My lab tests done the morning after I landed that had shown an ominous left shift signaling a significant infection or the start of CML or worse has disappeared as quickly as it came. My ALC is back around its sleepy normal level of about 2 and I have no immature cells that should be in my marrow hanging out in by peripheral blood. 

Also on the money side, the errors in insurance billing are being corrected, I am finally being paid and my long standing problems with my Canadian pension may be worked out. 

Once again, under reacting and watching the trend has been the motto to live by. The middle way.

Last January, Terry Evans, long-term CLL patient, and I traveled to New Jersey to tape an interview about his CLL journey starting out as a naïve patient and the experiences that led him to understand the importance of having a CLL expert on his team, and the many factors to consider if you are considering a clinical trial. We worked on this project in partnership with Haymarket Education. You can watch the video here: http://cllsociety.org/2016/08/discuss-cll-patient-journey/

TRANSLATION NOW AVAILABLE: Just an FYI, in the upper left hand corner of the CLL Society website is a “Translate” button. You can now select your preferred language to learn about CLL.

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL. This one features Dr. Furman, so attend if you can

·      September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. Dinner will be served and there is no charge to attend. You can find out more information and register here. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9419387

Heads Up! The CLL Society has become aware of a series of unbranded patient meetings coming up in September and October (with a few more to come in November and December). CLL patients will share their personal stories, and local CLL experts will be providing a talk on the basics of CLL. A complimentary meal will be provided and parking is free. You are welcome to bring a guest.

One member of the CLL Society will be at most meetings including these two listed below to show a brief video and give a talk about the impact support groups have had on their CLL journey. We will also have an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. We look forward to meeting you there. The first  confirmed meetings are:

·      Tuesday, September 6th in Rosemont, IL at the Chicago Marriott Suites O’Hare. More details can be found in the flyer. Access it @ http://cllsociety.org/docs/CLL_Flyer_RosemontIL.pdf

·      Wednesday, September 21st in Madison, WI at Gilda’s Club Madison. More details can be found in the flyer. Access it @ http://cllsociety.org/docs/CLL_Flyer_MadisonWI.pdf

In the meantime….
Stay strong.

We are all in this together.

Brian Koffman, MD
8/18/16

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Sunday, August 14, 2016

I have found the FAST FORWARD, but where is the PAUSE button

Us with our guides and safari organizer in Kenya

I returned stateside at LAX late Monday after leaving Nairobi on Sunday. Our arranged transport didn't show. In the confusion, I lost my favorite sweatshirt.

The next day I had three conference calls scheduled related to CLL or patient and medical education, my IVIG infusion, and lab draws for my local clinic with 9 more tubes for special testing being done at Mayo.

My car told me I had a flat tire on the drive to the clinic- I didn't, but the pressure was a bit low. Then the same thing happened with the van.

Most importantly, my blood tests done on Tuesday morning showed a significant left shift, something brand new for me, prompting a call from my local hematologist, Dr. Sharma to see if I was acutely ill- I am not or at least not knowingly sick.

In a left shift, immature blood cells are released prematurely from the bone marrow into the blood stream. This is usually a response to an infection, but can be a sign of a secondary blood cancer.

Also in a potentially foreboding development, my absolute lymphocyte count jumped above normal for the first time in many many years. And my LDH, a chemical marker of active inflammation or tumor activity or worst, was above normal.

Something is clearly going on. But what is it?

I have to follow my own advice and will simply wait to see if it was simply an abnormal blip in response to the extraordinary stress of my recent travels and jet lagged status, or was it the beginning of some new trend. Lab work will be repeated at UCSD at the end of next week. Until then, I refuse to worry.

Next I got home to find a bill for almost $5,000 for my prior IVIG infusion, the same infusion at the same place (my own medical group's cancer center) at the same dose that I have been getting for nine years now. What's changed?  More hassles to deal with. I am sure it too will all work out. It's got to.

And it turns out that I have not been getting paid for my work at my family medicine clinic for a long time despite working more hours than I have in years. This I am told is due to a book keeping snafu. It also will all work out, sooner rather than later I hope.

I have never been paid at the nonprofit as we need all our cash for programming. Hopefully that too will change as our community continues to grow.

in a spare moment, I argued with Amazon but was eventually able to returned for a partial refund the brand new but defective Nikon camera bought specifically for the trip.

Next month the CLL Society is starting direct peer to peer counseling for hundreds of fellow patients monthly with over a dozen volunteers and everything has to be encrypted and HIPAA compliant.

In September, we are also jumpstarting and organizing several support and education groups all across the country.

The list of the things that need to be sorted or fixed and not worried about goes on and on and on.

I have found the FAST FORWARD, but where is the PAUSE button? I would love to be languishing in the afterglow of the safari, but it was not to be.

Life is still sweet even it is a bit too fast.

Cheetah Mom with Her Pups
(lovely photos courtesy of our fellow traveler Chris-
we have no time to sort our photos)
SaveSave

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Tuesday, August 9, 2016

Reflections on Risking a Safari in Kenya when Fighting CLL (chronic lymphocytic leukemia)

Was it a good idea to go on a photo safari all over Kenya?

The safest and maybe the smartest course is to stay put.

Or maybe risk a trip to the beach for the weekend.

Many fellow CLLers have asked about the trip wondering if it they too could take such a safari. Is it safe or is it foolhardy?

Consider the pre-trip facts:

It would take two full days with lay overs in Qatar, I would fly across 10 time zones to land in Nairobi, AKA Ni-robbery, a high crime city in Kenya, a country the State department says is dangerous to visit with a terrible shortage of good medical care and way too few doctors and supplies and then I would travel from there for seven hours or more on dangerous two lane highways or barely maintained one lane gravel road through shallow river beds and deep rocky pits in rumbling Land Cruisers with red dust flying and bones shaking in what is jokingly called an African massage crossing the equator to get to a tent camp in the middle of nowhere and then I would do the same road trips again and again.

When you have a compromised immune system and a blood cancer, is a trip such as this a clear sign of….
  • Craziness? Maybe.
  • Risk taking behavior?  Of course.
  • Saying no to cancer saying no to me? You bet.
  • A carefully calculated gamble that turned out amazingly well? Absolutely.

This was a fantastic trip and I loved everyday of it.

I felt safe and healthy and fully alive.

So here’s my advice to others.

If your doctors say OK, do it.

And don’t believe all that you read.

I still bought travel insurance that waived the pre-existing conditions included coverage for an emergency MEDI-VAC flight if I needed to get to a good hospital back home or in London.

With a proper safari company (we used the wonderful team from As You Like It Safaris whom I highly recommend) we were well cared for from the moment we stepped into the arrival lounge at the airport.

We were met at the airport and whisked away to the elegant colonial era Muthaiga Country Club for lunch. Nairobi traffic is infamous and street hawkers hang on to the car at every stop which are frequent and lengthy, but we never felt threatened.

Most western hotels in Nairobi have airport like security with barriers for the cars entering and x-rays machines and metal detectors.

I stayed away from salads and fresh juices but most fellow safarians ate everything and did fine. All my water was boiled or bottled (listen for the click), even for brushing my teeth. Food was great- mostly Indian for me, but it was easier to be vegan in Kenya than in Louisiana or most of Texas. 

I got all my shots. Unlike Tanzania, Kenya does not require a the live Yellow Fever vaccination that would have made the trip a non-starter.

I was up to date on typhoid (the shots, not the live oral form), tetanus, hepatitis A and B.

I brought antibiotics (Cipro and Zithromax and used none), GI meds (Pepto and Imodium-AD and used none of it), pain meds, ointments and creams, hand sanitizer, sunscreen, and a full extra week of my ibrutinib and all my other meds.

I had a note from my doctor listing all my meds.

Due to the time change, I switched to take my morning meds in the evening and vice versa to keep the intervals between doses on the travel days with the 10 hour time change. Ibrutinib only binds the BTK sites for about 24 hours and I didn't want to stretch that out.

I took Malarone with no side effects to protect against malaria, wore long pants and long sleeve shirts treated with permethrin, and used high dose DEET twice daily during game drives. I got a total of two mosquito bites in the whole two weeks. I woke a hat and a buff for the sun and the dust.

The tent camps in the bush were marvelous and often quite luxurious. Except for the mischievous monkeys that want to steal anything and everything, it was very safe. Power might be intermittent and run off a generator, but we are out in the savannah.

And the night sounds were loud, melodic and startling. I could have done without the scent from the hippo pool.

But where else would I get a Maasai warrior walking me to my tent to guard against the wondering hippos or a Samburu villager with a sling shot keeping away the monkeys and mongooses away from our food when we dined by the river watching the Nile crocodiles bask in the sun or the elephants cross the shallows?

Folks left I-Pads and expensive cameras lying out and returned to find them untouched hours later.

The Serena chain of hotels in the National Parks and Reserves were all first class- clean, beautifully designed with gorgeous views, good food and great service.

All the Kenyans we met were friendly and helpful. Guides/drivers can make or break the trip and ours were encyclopedic in their knowledge of the local flora and fauna and wise in the ways of keeping us safe and comfortable. And kind and generous.

The wildlife doesn’t disappoint. Seeing a lion stalk and kill a wildebeest or watching them mate (it is female initiated, very, very quick and oft repeated every 15 minutes or so for about 3 days ), or a leopard or cheetah mom with her cubs or an elephant family care for their young, on a gerenuk get up on its hind legs to sample some high up tasty leaves or more colorful birds than I can remember or giraffes spread their legs widely to reach down for a drink or vultures and Marabou stork fight over a carcass or flamingos turn the sky pink when they all take flight together or countless herds of zebras and gazelles and oryx and cape buffalo and impalas living together has made me never want to go to a zoo again.

All animals need lots of room and many need their families to live a normal life.

But the highlight of the trip had to be the wildebeest and zebra crossing of the Mara River as part of the great migration.

More on that in a later post.

And pictures to follow.

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Sunday, August 7, 2016

Guest Post from Betsy while we are in Kenya on Safari

Here is the latest update from Brian:

We are doing fine in a lovely tent camp in Kenya with limited Internet when the generator is running. This is a land of amazing people and magnificent animals. It’s been an amazing trip so far, but a bit tough. Wildebeests and zebras are common, but the Internet is a rare commodity.

According to his itinerary, most of this week they will be at the Mara Bush Camp doing game drives (aka driving to see wild animals). Sounds so exciting!

This week in the 2016 Conference Coverage section, we’ve posted the second half of the interview with Dr. Jeffrey Jones from EHA. We had posted the first half of the interview on the role of venetoclax in CLL in The CLL Tribune. http://www.cllsociety.org/newsletter/quarter-2-2016-volume-2-issue-2/interview-2016-eha-dr-jeffrey-jones-role-venetoclax-cll/ This time Dr. Jones and Brian discussed the latest data in novel combination therapies in CLL – what combinations result in better outcomes, and which don’t seem to. You can see it here. http://cllsociety.org/2016/08/eha-2016-jeff-jones-novel-combination-therapies-cll/

TRANSLATION AVAILABLE: Just an FYI, in the upper left hand corner of the CLL Society website is a “Translate” button. You can now select your preferred language to learn about CLL.
Thanks to everyone who participated in the Reader Poll from the Q2 2016 issue of The CLL Tribune. We will share the results in the next issue of the newsletter.
From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL, specifically:

·      September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. Dinner will be served and there is no charge to attend. You can find out more information and register here. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9419387

In the meantime….
Stay strong.

We are all in this together.


Wednesday, July 20, 2016

Dr. Furman on genomic testing and MRD negativity in CLL (chronic lymphocytic leukemia)

I am going on radio silence and am writing this from the airport in Qatar so please don’t be upset or worried if I don’t respond to questions or comments.

Betsy Dennison, an oncology RN and NP who handles our website will be posting some interviews from ASH and EHA while I am gone. Today she put up this pretty cool one with Dr. Furman  that really explains the different types of genomic testing and the changing importance  of MRD-  in the era of new therapies.

I must admit for a world traveler, this trip to photo safari in Kenya has me worried. It is a long way aways and it is a long time gone in a poor and dangerous country  in some areas with all kinds of disease that are not a concern here

Once I am there, all should be well. I hear that at the tented safari camps, all is calm and secure if still noisy from all  the nearby animals.

Clothes are sprayed with permethrin, I have a ton of DEET and it is not mosquito season.  I will take Malarone. Kenya does not require a yellow fever vaccine  and risk is very very low and Typhoid can be given as a killed vaccine.  

I am staying away from salads and fruit drinks- that will be hard, and bringing a ton of emergency meds (cipro, immodium, Z-Pak, prednisone, pain meds, anti-histamines, suture kit, disinfectants, and an extra week of all my daily meds including my ibrutinib.)  Sunscreen, N95 masks and hand-sanitizer too.

And I won’t feed the lions, or monkeys or swim with the hippos.

I look forward to catching up when I return.

This is the first trip in years where CLL has not been at the top of the agenda, and where internet is iffy at best.

Stay strong.

We are all in this together.

Brian

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Sunday, July 17, 2016

Short and Sweet News: Less CLL (chronic lymphocytic leukemia) cells in my blood than 90 days ago

Good news. 

The absolute number of my B cells where my cancer lives dropped by almost 1/5 in the last 3 months from 246 to 216 after slowly climbing over the last year and 1/2. 

This is a very welcome and somewhat unexpected finding.

I am planning on it being the start of a new trend in the right direction.

4 plus years on PCI-32765 AKA ibrutinib and counting. 

Only time will tell if my resistant sub-clone and with it my CLL is truly shrinking, but the climb has stopped and that is reason to be celebrate.

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Saturday, July 16, 2016

The Patients' Perspective on the Changes in CLL (chronic lymphocytic leukemia) Treatment from EHA

If you recall, a month ago I was in Copenhagen for the European Hematology Association  (EHA) meeting and I had the privilege to be asked to speak with a very distinguished panel of CLL experts at a symposium that drew over 1,000 hematologists. Recently in our Conference Coverage section, we have posted a video review by Dr. George Follows of that symposium. You can hear about the highlights here. http://cllsociety.org/2016/07/panel-discussion-management-cll-changing/
Presenting the results of the 350 patients who answered our survey on therapy really added to my credibility in front of my fellow doctors. Thanks to those who helped with that.
If you were on vacation during these first weeks of July, we’d like to call your attention to our quarterly newsletter The CLL Tribune and also request that you take 3 minutes to answer our latest short Reader Poll about what you look for in your CLL physicians. You can access it here. https://asktellq22016.questionpro.com/ Thanks to the 140 CLL patients who have already responded. It really helps. The Tribune is the product of many authors, both patients and doctors. Please enjoy the articles and interviews from the Q2 2016 issue of The CLL Tribune:
· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage
· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
· Learn about what bone marrow does in The Basics Section
· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies
· Learn new facts about CLL in the Did You Know section
· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section
· In Living Well with CLL, you can read about:
o Why You Should See a CLL Specialist
o How my Support Group Saved my Life
o I Don’t Have CLL. Yes, I Do. Now, I Don’t.
o On Being a Novice Patient
o May I Remember Never To Forget
In the meantime….
Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
7/16/16

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