Dr. Susan O'Brien on liver inflammation from idelalisib for the treatment of CLL (chronic lymphocytic leukemia)

This week in the Conference Coverage section, we’ve posted another interview with Dr. Susan O’Brien out of UCI where we discussed an ASCO 2016 abstract about liver inflammation associated with idelalisib in relapsed CLL patients. You can view that interview here. http://cllsociety.org/2016/09/asco-2016-liver-inflammation-idelalisib-cll/

We’re pleased to announce that we’ve posted a CLL Doctor List in our CLL Toolbox. This list is composed of CLL physicians recommended by our readers. We appreciate all who contributed to the list. Thank you! You can access it here. http://cllsociety.org/toolbox/cll-doctors/

Upcoming Patient Support Meetings

Indianapolis, IN: CLL and Indolent Blood Cancers Support Group October 3^rd at 6:00 PM. More information can be found here.

Tucker, GA: LLS Family Support Group October 4^th at 7:00 PM. More information can be found here.

San Diego, CA: UCSD CLL Support Group October 5^th at 4:00 PM. More information can be found here.

Live in the Charlotte, NC Area? A new CLL Patient & Caregiver Support and Education Group will be starting in partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM. Patients and family caregivers are welcome. Find out more about dates and registration here.

Live in Tampa, FL? Another NEW CLL Patient & Caregiver Support and Education Group will be starting in Tampa this fall: Tentative Meeting Date November 1^st at Moffitt Cancer Center. Stay tuned for details!

If you’re aware of other CLL Patient Support Group meetings, let us know and we’ll post them. Thanks!

Patient Education Meetings

From time to time, we will make you aware of in-person Patient Education meetings coming up for those of us affected by CLL and lymphoma, specifically:

·      Wednesday, 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. You can find out more information and register here. Dinner will be served and there is no charge to attend.

·      Saturday, October 8^th at 9 AM at the Teaneck Marriott at Glenpointe: The Leukemia and Lymphoma Society will be hosting their New York/New Jersey Metropolitan Area Blood Cancer Conference. Dr. Anthony Mato from the Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA will be speaking during the CLL breakout session. You can find out more information and register here. Breakfast and lunch will be served and there is no charge to attend. Parking is also complimentary.   

Heads Up! The CLL Society has become aware of a series of unbranded patient education 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 each meeting to show a brief video and give a talk about the impact support and education groups have had on their CLL journey. We will provide practical tips and support for setting up a local CLL group 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. After tonight’s meeting, the next 8 confirmed meetings are:

·      Wednesday, September 21^st in Madison, WI. More details in the flyer. Access it here.

·      Saturday, September 24^th in Framingham, MA. More details in the flyer. Access it here.

·      Thursday, September 29^th in Portland, OR. More details in the flyer. Access it here.

·      Tuesday, October 4^th in Phoenix, AZ. More details in the flyer. Access it here.

·      Thursday, October 6^th in Park Ridge, NJ. More details in the flyer. Access it here.

·      Tuesday, October 11^th in Bloomington, MN. More details in the flyer. Access it here.

·      Tuesday, October 25^th in Golden, CO. More details in the flyer. Access it here.

·      Saturday, October 29^th in San Francisco, CA. More details in the flyer. Access it here.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

9/19/16

http://cllsociety.org

http://bkoffman.blogspot.coms

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.

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.

Update on the trial of ofatumumab and Ibrutinib

Friends,

Here is an update on ofatumumab first part of my ibrutnib trial at OSU. I do this for for 5 more weeks the on the 9th week of the trial, I finally get my first taste of ibrutinib (PCI-32765). Can't wait.

Bad news:

I don't have common mouth numbness and tingling after three doses of ofatumumab, but my liver function tests have climbed a bit. The ALT is worst at 98 (almost 3x normal), but the AST and LDH are also up but not even twice normal . These are relatively mild changes and only found this one time. I was screening for hepatitis of course before starting, I don't drink anything stronger than green tea, and I avoid tylenol. Heck, I avoid everything. I am on a ton of meds that can effect the liver, but nothing has changed in years.

Even after my transplant, my liver tests stayed boring, in fact toward the very low end of normal. There was a much smaller rise in only was AST when I returned from China, but that was short lived and was trivial. Hopefully the same adjectives apply to this too. Maybe I don't take well to "foreign " foods.

The package insert doesn't mention it. But there isn't much on the common oral neuropathy either.

Generally side effects in drugs are not discovered until they get used by a lot of sick people.

Hence the morbid joke: Alway use a drug when it' s new while it still works and before we find out all that is wrong with it.

Lab next week's lab with see if it's a nothing blimp or perhaps a trend.

Good news:

Eosinophils are falling, almost back to normal (700). CBC is pretty normal, and the rest of the chemistry panel is good to go.

CLL is one weird disease. Full of blind spots and unexplained good and bad twists and turns.

Very good news:

Nodes are smaller. Definitely not gone, but definitely smaller, and my GI symptoms are better.

Could the tumor kill and the cleansing action of the liver be the cause of the increases in AST, ALT and LDH? My white count was normal going into the trial and still is now.

Any other CLLers seen a bump in the liver tests with ofatumumab?

Disappointingly, I did not get to talk with Dr. Byrd so I don't have his take on this or on some much bigger and impactful issues and decisions that I am facing.

So I am still chewing on it and trying to round its corners as I move forward.

And I keep my mantra going: Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react.

Slowly and with awareness.

Nice n' easy does it every time (with thanks to BERGMAN, ALAN / BERGMAN, MARILYN / SPENCE, LEW and of course Frank Sinatra).

Please enjoy the linked video. I sure did: the chairman of the board and Gene Kelly together.

Ah, that's better.