It's Always Something: Latest Lab Results Bring the Unexpected in my CLL (chronic lymphocytic leukemia)

Every seven weeks or so, I go to the cancer center associated with St. Jude in Fullerton, CA for my IVIG (intravenous immune globulins) infusion to keep my platelets nice and normal following my years of ITP (an auto-immune destruction of my platelets). And to enjoy the side benefit of preventing some infections and the chance to monitor my labs.

I always have blood drawn before the infusion. The CBC is back almost instantly and was nearly normal. My absolute lymphs were 1.6 which is high for me, but very normal and my platelets were a bit high due to prior splenectomy. No anemia or other concerns. Basically all good news.

The next morning (now),  I get my blood chemistries back. My LDH had been slowly climbing at Ohio State but was rock stable at my local lab. YEAH, as LDH can be a sign of cancer reviving up. Mu uric acid was normal but had climbed up a tad.

Bood sugar and kidneys tests were all good and my proteins were their usual minimally low due to my lack of making decent amounts of immunoglobulins, but the surprise was my markers of liver injury (AST and ALT) that have been reliably very low and healthy were unexpectedly slightly elevated. Two other liver tests that are raised when the liver ducts are obstructed were normal.

Liver tests show up at the bottom of the page of the comprehensive metabolic panel (CMP)print out, so I almost didn't scroll down to the bottom of my computer to see them as they have been my faithful and reassuring marker of normalcy for all my years with CLL. One touchstone of stability that I attribute in part to my healthy plant based lifestyle.

Ironically I rely on this very blog to jog my memory and it reminds of two forgotten times that my liver enzymes were high before: they were the worst when I first started on this trial almost 4 years ago and was getting the anti CD-20 antibody ofatuzumab, and again briefly after I returned from a cold and grueling trip to China in the winter of 2011. They soon normalized in both incidences.

This uptick today is vey slight. I don't drink alcohol and have no high risk behaviors.  In the past, I have screened negative for hepatitis A, B, and C.

I did just started CoQ-10 from my dentist and that, in doses three times what I am taking, can cause this exact issue.

I have recently recovered from a violent vomiting and diarrhea episode that was likely norovirus. It was raging through the local elementary school and senior housing. That nasty bug (a common cruise ship spoiler) can rarely cause acute severe liver inflammation, but my GI issues were gone two weeks ago.

Of course my white knight, ibrutinib itself, could be the culprit, even after more than 3 years, but that too is unlikely. IMBRUVICA  usually leaves the liver alone. And that too is good.

So no obvious villain to blame. And I feel just fine.

My plan is to advise Dr. Byrd, stop the CoQ-10 and not sip any champagne tonight.  Easy stuff.

And recheck levels in 7 weeks when I next get my IVIG.

Because the trend is my friend,  I refuse to worry about one lab blip. But that doesn't mean I won't do what I can to research and prevent the trend from moving in the wrong direction.

Take a look at our latest new letter on the CLL Society website, sign up for our alerts. They will be fast and furious in 2016 so you don't want to miss out.

2016 will be an amazing year for those of battling CLL.

Stay strong.

We are all in this together.

Happy New Year to all.

Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies.

This has been a banner year for developments in the treatment of CLL. In this last week of 2015 on the  CLL Society website, in our  Conference Coverage section, we share an interview from ASH 2015 with Dr. Nitin Jain where he discusses the Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies. The success of the latest targeted therapies has increased the number of patients who are living with CLL (prevalence), but what is the economic burden of these therapies? You can view my interview with him here. Last week, we published our second quarterly newsletter, The CLL Tribune. Don't miss this special collection of research news (Dr. Byrd's interview about ACP-196) in Conference Coverage, Dr. Furman's answers to reader's questions in Ask the Doctor, basic CLL information (What is a Lymph Node?), fun facts and a wealth of wisdom and shared experiences from our fellow patients. If you are receiving this information for the first time here, you are missing out on a lot of research news, so please consider signing up to receive it here. That said, all our content is accessible whether you sign in or not If you have questions you like addressed in future newsletters, OR are interested in the results of the Q3 Reader Poll, OR are willing to answer a couple of questions in our current Reader Poll about the CLL Society website, please go to the  Ask & Tell section. Our goal is to fulfill the unmet needs of the CLL community, so we always welcome your feedback and questions. For those of you in the Charlotte or Atlanta areas, we just became aware of 2 patient meetings coming up in February: Thursday, February 4th in Charlotte starting at 5:30 PM at the Hampton Inn & Suites Charlotte (View Charlotte flyer), and Saturday, February 27th starting at 9:30 AM at the Sheraton Suites Galleria-Atlanta (View Atlanta flyer). CLL patients will be sharing their personal stories, and local CLL experts will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. Complimentary breakfast and parking  are provided and you are welcome to bring a guest. I will be at both meetings with an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. I look forward to meeting you there. Happy New Year! Stay strong. We are all in this together Brian Koffman

PS: I easily passed my family medicine recertification exams, despite doing little family medicine continuing education and mostly hematology for the last 10 years. Next exams in 10 more years.

CLL Society Newsletter with Dr. Byrd on ACP-196 and Dr. Furman answering chronic lymphocytic leukemia questions and much more

The CLL Society’s 2nd newsletter is out at http://www.cllsociety.org/newsletter/.

There is a fresh interview with Dr. Byrd on his exciting ACP-196 data, Dr. Furman answers your questions, Dr. Sharman discussed antibodies, especially Gazyza, I review the basic anatomy of a lymph node in CLL, Terry Evans interviews Sheila Hoff, RN about being a clinical trial nurse, and most importantly fellow CLL patients write about compassion and nutrition and dealing with cancer and a transplant and much more.

Please take a look and let us know if you have any questions or even better if you want to write for us. Any feedback is welcome. 

We did 14 sets of interviews of live interviews with experts on CLL from ASH 2015 so please consider signing up for the alerts ( http://cllsociety.org/newsletter-sign-up/ ) so that you don’t miss any upcoming posting, but as always, all our content does not require your sign in. If you do sign up, we won’t share your data with anyone.

Stay strong.

We are all in this together.

Brian

http://cllsociety.org

Radiation Doses- What to Worry about and What to Shrug Off when we have CLL (chronic lymphocytic leukemia)

No amount of radiation is good for us. Ionizing radiation damages DNA and increases cancer risk. No question about it. 

So avoid x-rays unless they are truly needed. Even more so for CT scans, that are rarely indicated for CLL under most normal circumstances. 

We have reviewed our increased cancer risk in prior posts when we have multiple CT scans. And Wayne Wells has written this extensive review for the CLL Society on our website. Here is a link to an article I wrote titled "The Risk Of Secondary Cancer Associated With > 8 CT Scans In Patients With NHL (Non Hodgkins Lymphoma)" Remember CLL is a type of NHL.

But what about the risk from a minor dental films or an x-ray of an extremity?  When should we worry?

My dentist has been bugging me for years to have some x-rays, and I finally said yes after he provided me with this sheet that compares a dental x-ray to a CT scan to Chernobyl. 

It gets complicated, but the bottom line is that what this chart is basically tells us is that if the x-ray machines are properly calibrated, and are used properly, and are functioning normally, we don't need to sweat the small stuff when it comes to getting imaging. Also with dental films, miscalibration, should it occur is less likely to be a big deal than it is with CT scans.

This chart is from my dentist. Click on it to expand it. Lots of good information so it is worth the squinting. Apologies for the small text.

One tiny blue box equal 0.5 μSV and that is roughly equivalent to the radiation exposure from eating 1/2 a banana. Pretty low risk. The sugar is probably more dangerous.

The unit SV or Sievert is a measure of the health effects of exposure to low dose radiation. The sievert represents the equivalent biological effect of the deposit of a joule of radiation energy or 1 gray or Gy in a kilogram of human tissue. μSV is 1 millionth (micro SV) of a Sievert. 

A chest x-ray is equal to 1 green box or 20 μSV. In the chart, there are 400 blue boxes in every green box. Next there are 500 blue boxes for each one orange box that is equivalent to 10 mSv or ten 1/thousandth of an SV or ten milli-SV. For reference 1 mSv is the average accumulated background radiation dose to an individual for 1 year, exclusive of radon, in the United States. 1 mSv is the dose produced by exposure to 1 milligray (mG) of radiation. 5000 - 8000 mG is exposure dose that kills about half of us, known as the LD50 though the damage is dependent on many factors including duration of exposure.

100 orange boxes equals one yellow box of 1 SV.  Remember that 5-8 SV  is a likely fatal dose. Ten minutes exposure next to the Chernobyl core after meltdown resulted in 50 SV, 6-10 times the usual killing dose.

Life is full of risks, but a dental x-ray is not one to worry about.

Starting a CLL (chronic lymphocytic leukemia) Society Support Group in LA area

Dear friends and fellow CLLers,

If you live has been touched by CLL, then you realize how valuable a CLL specific support group can be.

And some of us live in Socal and know how long it takes it get anywhere, anytime, any day.

Regardless, let’s try to find a way to make a CLL specific support group work for as many of us in the LA area as possible. It will be worthwhile and the CLL Society will support you to ensure success.

We have a very short online survey to help figure out the best options.

Please click on or paste into your browser: https://cllsocietysupport1.questionpro.com and answer the questions.

We will collate this brief single page survey about dates and times and locales and get back to you.

Everything is confidential.

Feel free to contact me with any questions

I would like to start meeting in February or March at the latest. Our group in Orange County started with 3 only members more than 8 years ago and is one of the reasons that I am alive today

Thanks

Stay strong.

We are all in this together.

Brian

Brian Koffman

Volunteer Medical Director, CLL Society Inc.

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

CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM at City of Hope this Saturday

I'll be at City of Hope this Saturday with the latest news from ASH earlier this week and learn how a support group can improve our odds. It's not to late to register at http://cllsociety.org/docs/COH%20Patient%20Meeting.pdf

CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM

In partnership with the City of Hope and the Leukemia and Lymphoma Society (LLS), the CLL Society invites you to attend a CLL patient education forum and the launch of a Los Angeles-based local support group sponsored by the CLL Society Support Network.
Date: Saturday, December 12, 2015 

• 8:30 AM – 9:00 AM Registration
• 9:00 AM – 12:25 PM Program

Location:
Platt 3 Conference Room City of Hope 1500 East Duarte Road, Duarte, CA 91010
AGENDA

• 9:00 AM Diagnosis and Frontline Treatment Tanya Siddiqi, MD
• 9:30 AM Relapsed Disease, Novel Therapies Steven Rosen, MD
• 10:00 AM Q&A Siddiqi, Rosen
• 10:20 AM Break
• 10:35 AM Services of City of Hope
• 10:45 AM Services of Leukemia and Lymphoma Society
• 10:55 AM Being Your Own Advocate Brian Koffman, MD
• 11:10 AM Break
• 11:25 AM Support Group Discussion

Why attend a support group, rules for running and participating in a support group, summary and plans to re-meet and option to sign up for support group meetings and training as a facilitator Terry Evans and OC Support Group Members

• 12:25 PM Conclusion

HEADING HOME FROM ASH

Our flight is delayed from Orlando and we have a tight connect in Phoenix. What else is new! Not looking good.

ASH 2015 was amazing.  So much good news and clarifying news on novel therapies.

Watch here and on the CLL Society website for the news, interviews and updates.

Here are a few teasers:

• Venetoclax (ABT-199) looks very helpful for those who have failed ibrutinib or idelalisib.
• ACP-196, a new BTK  inhibitor has stellar results with few side effects.
• Ibrutinib does a super job upfront in the over 65 gang. Should become standard of care frontline.
• The addition of idelalisib to bendamustine and rituximab (BR) greatly improves outcomes, but the use of idelalisib frontline needs to be managed more carefully to get the good results it offers due to increased risk of liver issues.
• Promising results with new signal blockers such as ONO-4059 and duvelisib and TG-1202 and the immune modulator, CC-122 and high dose methylprednisolone (HDMP) and new antibodies and much more.

More details and other results soon.

Stay strong.

Gotta get ready for our flight, I hope. The problem is a broken bathroom door.

UPDATE: After changing the flight 3 times, we would have missed our connection by about 15 minutes, so we changed everything to fly into LAX  more than an hour from home, but at least in the same time zone. Our bags are a different story.

Brian

I am off to ASH 2015 to learn everything I can about CLL and I have a miserable cold.

I got my biannual cold that seems to come just as I am planning to get on the plane to the be the only family doctor among 30,000 or so hematologists and researchers from around the world.

Despite my aches and cough and runny nose, I am looking forward to learning all that I can on CLL, absorbing it and sharing it here and on the CLL Society website.

Highlights include the first data on an ew BTK inhibitor, ACP-196 (NEWS BREAK: now officially called acalabrutinib), more on other exciting drugs in development including venetoclax (ABT-199) and several promising new signal blockers and more on SYK inhibitors and new antibodies and new combos and more on approved drugs such as ibrutinib and idelalisib and obinutuzumab and ofatumumab and more smartly focused material on chemo and on new understandings of how CLL is treated in the real world and how it might be treated soon and so much more.

Plenty of interviews scheduled with experts from around the world, many whom are old friends and some who are new to me, but have published important research.

Hundreds of great abstracts (I have reviewed about 200 so far) and many oral presentations and press conferences.

I am also meeting with other patient advocates and friends from around the world to share best practices.

I will try to share some live updates from ASH 2015 because it is so exciting, but mostly I like to digest the research over a few weeks so that it can be understood and put in meaningful perspective.

The only thing missing is lots of sleep.

So now I am going to bed. Flight tomorrow AM.