Published on January 25, 2018
Hello—long time no blog! As evidenced by the fact that I recently started ibrutinib (Imbruvica), a lot of stuff obviously hit the fan these past few months. For caregivers and patients who are in the CLL fight, there are a lot of takeaways from the recent portion of my journey. It also sheds light on the need for an addition of a new character to the control room of our CLL minds. So please, read on.
Okay, as backstory and context, the following things occurred in the last 16 weeks, including:
- My daughter’s seizure disorder went out of control requiring multiple trips to the ER.
- I got a new job.
- My other daughter deployed to California and promptly broke her hand.
- My annual physical in early October indicated I was in good shape CLL notwithstanding.
- Death nearly knocked on my door two weeks later during a nasty weeklong fight with CLL-induced autoimmune hemolytic anemia (AIHA).
- I learned the hard way about esophageal spasms, and got a nice 1 AM ambulance ride to the local ER as a consequence.
- My mother-in-law passed away.
- I started front-line treatment with ibrutinib.
Whew! The Biblical Job has nothing on the Chris family. In a perfect example of the last four months of lunacy, on the day I was to go for my first checkup after surviving my AIHA scare, my daughter had another bad seizure just as we were literally about to leave to see the hematologist. There were seven EMTs in the house (We are becoming regular customers). A neighbor was here too and my wife told the EMT that we really needed to get to the hematologist and our daughter would be fine with our neighbor. We left. The EMT was aghast…Ahhh, welcome to the Chris family!
Each of these events could be their own blog (and very well may be) but for now let’s focus on some of the more immediately relevant takeways. Each of these has helped myself and my family get through a really challenging time.
- First: Attitude Is Everything. Stubborn positivity makes a difference. When formally diagnosed with CLL, I simply refused to be a victim nor play the part of one. When my two daughters hit their recent medical issues, they just kept on rolling. Life goes on and you can either shrink away or step up and make the best of it. As a caregiver, shrinking away is simply not an option. Specific to CLL, I always hoped to make it to an era of newer treatment paradigms and compounds for front line such as Ibrutinib, Ventaclax, and others. I’m not out of the woods but at least we are headed in the right direction!
- Second: Get in the best physical condition you can. Simply put, my physical conditioning likely saved my life. At one point during my hospitalization for the AIHA, my hemoglobin had dropped to 3.5, and half of my blood was replaced. Not to put too fine a point on this, but one person out of three doesn’t survive at these low levels. I knew I was in real trouble when twice asked if I had a “do not resuscitate order.” Through all of this, the medical professionals were incredulous that I was functional and cogent. They repeatedly said that a big reason I’m here to write this is my conditioning. So, walk, run, swim, do yoga, but Do SOMETHING!
- Third: Knowledge Truly Is Power: Patient Power uses the phrase “Knowledge is the Best Medicine of All” and it is spot-on. There is an enormous amount of publicly available information about CLL, its treatments, new approaches, your medical care providers, and just about anything else that’s relevant. Like most other people with this malady, I have been reading voraciously for years about the topic. However, when the decision to treat presented itself, I read, read, and read some more. I contacted anybody and everybody who could remotely help me. And, I got second and third opinions on treatment options.
- Fourth: Be Your Own Best Advocate: Over a five-week period, there were a lot of steps, tests, and conversations that led up to the decision to use Ibrutinib. To get to that point, a lot of bureaucracy needed to be surmounted as well. My hematologist/oncologist was leaning towards BR, because he simply had more experience with it. However, he was greatly supportive of the ultimate choice. Prior to walking into the decision meeting with him, my wife and I made an agenda that had all the key points and topic areas that we needed to review (see below). We gave the agenda to him, and he knew my wife and I were loaded for bear; and we knew he was a damn smart doctor who has fully engaged us every step of the way. The agenda framed the conversation and information framed the agenda.
- Fifth: Recognize Opportunity When It Presents Itself: Life and circumstance does not often provide a second chance. Recognize the moment when it appears, seize it, and run like your life depends on it. In my situation, I have a second chance at living now that we are aggressively trying to kick CLL outta Dodge. Secondly, it took three years to find a company that values the whole person and their family, wants what I bring, and does not treat people as throwaways. Bottom line—there is a lot of living left and I am not looking back.
And now let’s introduce a new emotion to the CLL control center in our minds. In a previous blog, we added Pollyanna and Negativity to our core team of Joy, Sadness, Disgust, Anger and Fear. Our newest emotion is Grateful. In my case, Grateful is embodied by just being here to write this missive in the first place. Grateful is also embodied by being surrounded by family and friends (my shtetl), by modern medical science that led to the advances keeping me alive and moving forward, and a medical / physical training team whom let me march to my different drummer over the past five years.
So in closing, I am gratefully calling in from the front line.
Please share your story, thoughts, what you are grateful for, and anything else for that matter in the comment section. It will help others in their battle.
Thank you for reading!
Always hope. Never quit.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
MEETING WITH DR. F
TREATMENT REVIEW MEETING AGENDA
DECEMBER 6, 2017
LOCATION: Vxxxxx Hospital Center, 1xxxx Street Address, Suite Gxxxx.
The purpose of this meeting is to review current medical status, potential treatment modalities, and identify best course of action.
1) Current medical status.
2) Overall goals / guiding thinking:
- Evade treatment as long as possible.
- As few drugs as possible.
- Treatment naïve only once – take the best shot now.
- Least impact on quality of life – travel, work, exercise, etc.
- Treatment choice considerations:
i. Most efficacious (longest PFS, OS, CR).
ii. Longest / durable remissions.
iii. Minimize side effects / max tolerability.
- No or minimal DNA damage – don’t burn the village to save it.
- Set up for “one and done” in the future without cumulative effect of multiple relapses.
- Secondary cancers.
3) Specific concerns:
- Side effects – Fatigue, GI, diarrhea, constipation, vomiting/ nausea, infections. (Real Percentages, AE severity).
- Bleeding / stroke, AFIB, interactions between drugs. (Need real percentages, AE severity).
- DNA permanently scrambled.
4) Treatment options:
- Characteristics including description, mode of action, administration, efficacy (PFS, OS, CR), side effects, cost, pros/cons, other considerations.
- RCP/RCD (Mayo).
- BR (Drs. F, C, and Mayo; GD).
- obinutuzumab / chlorumbucil (GD).
- ofatumamab / chlroumbucil (GD).
- rituximab / chloruumbucil (GD).
- ibrutinib (Drs. C and Mayo; GD).
- ibrutinib / riituximab – ECOG 1912 Protocol (Mayo).
- Others beyond standard of care (Biogene Study, Announcements from ASH 2017).
5) Other items:
- Balancing AFIB & bleeding against clotting (apixaban vs ibrutinib). Which condition takes precedence? Cancer versus clotting?
- The ibrutinib / apixaban circular logic – AIHA correlates with clots, take apixaban to stop clots, ibrutinib with apixaban correlated with bleeding, ibrutinib suppresses AIHA which reduces or eliminates need for apixaban. Which is the chicken and which is the egg?
- Likely to relapse on most treatment options and will end up on ibrutinib anyway for second line. Why beat your body up in the first place? (See Dr. Furman’s discussion).
6) Next steps – where to from here?