May 3, 2016 - Dr. Jan Burger Initial Appointment

What a day! We got a much needed, clearer picture of CLL today than in the last 33 days since diagnosis. We spent 6 hours at MD Anderson. I gave 15 vials of blood, told my past medical history more times than I can count, and met some amazing practitioners who know more about cancer than I can even tell you.

We learned that I do not have a Stage 4 CLL; it is Stage 1 (mainly, but not limited to, my platelet count). He does use a different staging system (Rai staging), per the nurse practitioner, but we certainly like the sound of Stage 1 vs. Stage 4. My lymph nodes are MUCH smaller since my first chemo treatment, so Dr. Burger did say its hard to say whether he would have even recommended to begin treatment. There is usually a "watch and wait" period in CLL. I was diagnosed and treated immediately. My lymph nodes were of a concerning size, but they are not now, so he said treatment may have been warranted - or maybe a watch and wait would have been recommended. 

My FISH panel is normal. I do not know much about this test (from the bone marrow) except that it gives us a good picture of how to treat this cancer. Normal equals good!

The most obvious question I had, and it seemed extremely logical to my non-oncologist brain was, "WHY, if you have cancer, would you NOT treat it? Don't you want to get rid of it??" He said it is a great question and that with CLL there is no cure, so you treat it only if its active, causing symptoms, or in advanced stages of the disease. With my enlarged lymph nodes, the argument can be made to treat me - which we did begin. He said there is no clear answer here - guess that's just how it goes sometimes with cancer. 

There is one piece missing to determine my treatment: the mutational status. Do I have mutated vs. un-mutated CLL. If its un-mutated, the cancer often acts more aggressive. If it is mutated, it is usually less aggressive. (I would have thought the opposite, but whatever.) This is a key factor in determining treatment; however, I have had a round of chemotherapy so there may not be many leukemia cells to test in my blood. 

Treatment options:

Bendamustine and Rituxin  (BR) [the chemotherapy/immunotherapy I received 4/19-4/20] - is mostly used in elderly people. Dr. Burger has not used it on a CLL patient in over a decade. 

Fludarabine, Cyclophophamide, & Rituximab (FCR) - another chemotherapy/immunotherapy treatment option. This is the one he would recommend in younger people, like myself. 

Both of the above would put mutated CLL into remission after 4-6 months of treatments. Why FCR over BR or vice versa? He recommend FCR over BR because patients are usually in remission for much longer. So overall it is more effective, but it does also have more side effects - the main one being even lower WBC's and resulting infections. 

The main drawback to the chemo/immunotherapies is 5-8% of these patients develop other blood cancers in their lifetime - those being MDS (Myelodysplastic Syndrome) and AML (Acute Myeloid Leukemia) which have NO EFFECTIVE TREATMENT.

Whoa. So that was a game changer TO SAY THE VERY LEAST. Especially because of my age.

He mentioned this risk SEVERAL times in our consultation. He said this is why there is a "huge push" to move away from these types of treatments. He even once said "that's 1 and 20 who end up with these terminal conditions."

This brings us to the treatment he recommends: It is called Ibrutinib. It is a NON-chemotherapy, kinase-inhibitor tablet that would be taken daily. It is a continuous treatment, not a cure. It is something one may end up taking for years keeping the disease under control. This is a newer drug, recently just approved as a front-line medicine, that does NOT come with the same toxic side effects to the healthy stem cells, like the above scary side effect of chemo/immunotherapies. Yes, it hasn't been around as long (since 2010). Nothing like that has been seen and because of the mechanism of how it works, they do not expect to see it. 

Next steps? Wait for the mutation testing to be completed. It should be available in 10-14 days. Once it is back, he will recommend: a.) no treatment for now - just every 3 month blood tests with him to monitor the disease; or b.) begin the Ibrutinib tablets daily. 

I have not cancelled my next chemotherapy appointment yet at West in Memphis. We are going to take a BREATH, soak this all in, and I will be in contact with Dr. Burger, and his FNP, Lynn. We will wait on the next mutation test and go from there. 

THIS PLACE IS AMAZING!