Imbruvica (Ibrutinib) Day Five, and CLL Networking

Dave started the Imbruvica (Ibrutinib) five days ago. So far the main side effects have been mild nausea and extreme fatigue. Nothing else seemed to change, good or bad, until yesterday afternoon, when we noticed that the lymph nodes in his neck seemed a little smaller.

These kind of blow-by-blow symptoms are mainly for the benefit of other people with CLL. Although we started this blog for family and friends, we soon became aware of the on-line network for CLL (Chronic Lymphocytic Leukemia.) Which is a lifesaver, sometimes literally. Check the sidebar >>> for our favorite links.

This disease is common enough in the general population to warrant interest from the bio-research industry: the National Cancer Institute says that this year (2014) there will be 15,720 new cases of CLL diagnosed and 4,600 deaths from CLL.  About 120,000 people in the US are living with CLL, according to the Leukemia & Lymphoma Society. And the National Institutes of Health estimates that 2% of the population has the condition but are undiagnosed. And yet, it can be maddeningly difficult to get knowledgeable medical care - not only for the main diagnosis, but for all the crazy secondary problems that crop up, due to the peculiar gene mutations in CLL, and a compromised immune system. MD Anderson estimates that 15% of Leukemia patients were misdiagnosed before coming to the cancer center.

Anecdotally, I can say that it's more common than not, to have (non-CLL) doctors just brush off your symptoms, act like they're no big deal and actually tell you that "it'll go away on its own" (like a sinus infection that has lasted for years. Or tonsil/throat/ear/breathing problems that make it hard to sleep- one doctor told Dave that "you're not fit, you need to exercise more.") It's enough to make you feel a little crazy. Until you start reading these blogs by other people with the exact same stories. Suddenly, you realize you're not alone - there are other people out there, dealing with the same issues.

Brave New World of Cancer Therapy

(Actually, these are AmoxKClav - the Ibrutinib hasn't arrived yet.)

This morning we were awakened by a phone call from a pharmacist, who wanted to discuss the side effects, scheduling, lab testing and so on, for Dave’s new oral cancer therapy, Ibrutinib. He put it on speakerphone and I took notes. We both asked questions. It was the usual pre-chemo talk, except this time we were laying in bed, instead of sitting in plastic chairs after a 60minute bus ride. 

(An excellent development for someone whose main complaint is fatigue and shortness of breath. And whose immune system is so shot, a handshake is more feared than welcomed.)

Now we await the Fed Ex delivery of the drugs - I just tracked it online and it’s on a truck, somewhere between South San Francisco and here. Should be here by noon.

We can even do the most frequent blood testing at home, if we can get the system set up: http://www.ptinr.com/home-inr-monitoring/how-does-home-inr-monitoring-work

Wow, some things *are* getting better.

Help is on the Way

Today is a huge step forward. I received word that my prescription for Ibrutinib has been approved and a month’s supply is being shipped overnight. I should be able to start taking it Wednesday morning.

Ibrutinib is extremely expensive ($100 per tablet.) The standard co-pay through my insurance is $1000 per month. But because of the super human efforts of the professionals at Pacific Hematology Oncology Associates at CPMC, specifically Dr. Tuan and especially Pharmacy Technician, Lori Heggli Rand, my co-pay was reduced to $10 per month.

For me at this stage in the development of my CLL, Ibrutinib is the difference between life and death. Ibrutinib was approved for treating CLL only 8 months ago. It hasn’t been in use long enough to know if it will be the last course of treatment I will need. It may be effective indefinitely, we don’t know. There are newer therapies currently in trial phases that may prove more effective and a permanent solution. We will know in 3 years or maybe sooner.

Ibrutinib won’t restore my damaged immune system to a healthy state, but it will suppress the cancer as long as I take 3 tablets every day for the rest of my life.

So all looks promising for now and the most I can hope for right now and, for me that is indeed huge.

New Treatment Plan

Dave, at lunch today, between appointments.

Today, we were at the medical center (CPMC) all day, with a short break for art (saw a couple of photo shows downtown.) Dave's condition has deteriorated rapidly in the last few weeks and a few days ago his primary care doc seemed alarmed at the change in Dave's condition, so he got things in motion. Today we saw the pulmonologist and the oncologist. They have all been in communication with each other, which is a relief, and they are all in the same building, which is the same place where Dave has gone for cancer treatments.

The upshot is, it's only been two years since the last round of chemo, so another round at this time would have a higher risk than benefit. Just a few years ago, there would be no other options. But a new treatment was just approved 8 months ago: Ibrutinib.  It should reduce the cancer cells and their adverse effects, but not right away. Just like the older chemo, it's likely to make him feel worse before he feels better. And it's not without side effects. But it's still better than the alternatives. It's a pill, and he will need to take it for the rest of his life. He's thrilled that he doesn't have to deal with IV infusions again.

The next hurdle is getting our insurance to approve the treatment, and then affording the co-pay. And then obtaining the drug (apparently it has to be shipped here from Texas?) Luckily, Dave's oncologist has a staff person assigned to help us through these issues. We met with her this afternoon and she was very optimistic and reassuring. It might be a week or so before it's all figured out and he actually starts the drug.

2014 Update

Dave, gallery-sitting at our new BigCrow Studios Exhibition Space. 

That good feeling we had, leaving Dave's last treatment, in December 2012 - it lasted about a year. Not nearly long enough, nor as long as we had hoped. About one year later, in December 2013, Dave came down with a vicious respiratory infection. And he has not been well since then. In 2014 it's been one thing after another, mostly respiratory infections, including a few trips to the emergency room. May was the worst month, with pneumonia, shaking chills and a temperature of 104.8. (Good thing Ebola wasn't here then.) He still has shortness of breath on exertion, white spots on the back of his throat (continuous, for months) and lymph nodes enlarging to the point that they are once again impinging on his other organs (per CT scan, and symptoms.) 

He missed a lot of work days and eventually had to stop working. These days, it's hard for him to leave the house (and his air purifier) for very long, or walk more than a few blocks. He applied for disability (SSDI) and was turned down. We have an attorney and are appealing.

Meanwhile, we spend a good portion of every week jousting with insurance companies, health care providers, doctors, lawyers and government agencies. Highlights have been: lab companies and doctors' office staff who can't do simple math; the moron at Lab Corps who told me, "Yo!-F-Y-I- your doctor didn't put the right code on that sample," (so what is the right code?) "I don' know - I ain't no medical person." The doctor who told Dave that he couldn't breathe well because he "wasn't fit" and needed to "exercise more"; the three doctors who told Dave that his months-long throat infection was "just a viral infection - it'll be gone soon" and the $50 to $500 copay we have shell out every time we get one of these blithe pronouncements.

And by the way, I hate Blue Shield of California. If you were thinking of signing up with them, think again. They are expensive; impossible to reach when you have any kind of question; vague and opaque about what is covered and how much they are willing to pay, but one thing for sure is they don't want to pay much. I plan to spend the next 2 weeks trying to research a different insurance that will still let us get Dave's treatment at the Bryan Hemming Cancer Care Center (a wonderful place.)

We see his oncologist again in mid-November and hope to get some kind of serious treatment plan at that time.

All that said, we're both grateful he's still here, unlike some of our fellow CLL travelers (on the sidebar.) We opened an exhibition space in the front of our house, to show artwork and photos by us and our friends. Dave doesn't have to leave the house, he can see friends here, and maybe we'll get lucky and make a little money. If you're in the area, check our other website, www.bigcrow.com for open hours and come by and say "hi."