May 27, 2016 - Remaining Test Results, Treatment Plan

Unfortunately, the testing for the mutational status did not work for technical reasons, presumably because there were too few leukemia cells left after my last chemo-immunotherapy. This test can be repeated at some point in the future, but it may not work when there are so little leukemia cells in place (from the chemo). Sometimes, even with small numbers of CLL cells, the test can still pick up a signal, but in my case, despite several attempts, it did not work.

So the next step is to wait and watch. There are little leukemia cells in my system (yay!) at this time. Upon choosing this route, Dr. Burger (at MD Anderson) suggests monitoring the disease from now on with serial blood draws and physical examination, initially every 2-3 months. Once the disease becomes active again, I would begin to take the kinase inhibitor, Ibrutinib. Ibrutinib (Imbruvica) is the pill I mentioned previously that has been shown to control CLL without the risks involved with receiving chemo-immunotherapy.

So for now, I will live my life to the fullest as long as I am feeling well. If things start to deteriorate, I will get to Houston sooner than later. At this point, Dr. Burger wants to see me next in August or September.

PS My left arm, where I had the chemo, is STILL purple, bruised, and painful to touch from my first chemo 4/18-4/19. It is not a phlebitis or infected, just normal bruising. I cannot imagine having to again stick this arm and run IV infusions for 6 hours 1 day and 2 hours the next day. I know people do it; I just cannot imagine. I may have to do chemo again in my lifetime, but I am just thankful its not today! Cheers! 

May 13, 2016 - some results from MD Anderson

Lyn, Dr. Burger's Nurse Practitioner with MD Anderson, emailed me today. They do NOT have the mutational status of my CLL just yet. What they do know so far:

• FISH test is negative - which is good. This means there are no cytogenetic abnormalities detected (like deletion 13, deletion 17) with my CLL.
• I still do have some CLL in my bone marrow. They said a "small amount" which is probably because I have had one round of chemo. 
• The somatic hypermutation (IgVH) is still pending - the mutational status. 
• ZAP 70 is positive - which is a "higher risk feature." This is a marker on the cell which may be associated with more aggressive disease. 

Dr. Burger is currently out and returns next week. The nurse practitioner will consult with him and let me know a treatment plan once he returns. 

May 5, 2016 - We are home! New plan...

I realized many of you still think we are in Houston! We are home now, and I feel an overall sense of relief about my life!

Next steps: await the mutational status of my CLL. I will then discuss with Dr. Burger, at MD Anderson, the plan of care - whether we "wait and watch" or we begin the Imbruvica/Ibrutinib tablet treatment for control of the CLL.

I have decided to no longer seek treatment at West Clinic in Memphis. My next chemo/immunotherapy appointments have been CANCELLED. [Oh, that is such a relief to even type.] I am going to make trips to Houston as needed for blood work, doctor visits, etc. We are very disappointed that I was initially advised at West Clinic to begin chemo/immunotherapy immediately, WITHOUT being told of the impending risk factors (mainly the real risk of developing other blood cancers within my lifetime that have no effective treatment!).

For anyone who may stumble on this blog in your diagnosis journey - whether its CLL or another form of cancer - hindsight is 20/20. So use my hindsight as YOUR foresight, and save yourself some heartache! Once diagnosed, seek out specialists for your type of cancer BEFORE beginning any treatment - especially for a chronic cancer (which means slow growing). Don't just see the nearest oncologist a referring doctor recommends. Get to someone who is connected to the research!

It is depressing knowing that I do have cancer and that there is no cure for CLL (yet!). This is something I will battle for the rest of my life. But luckily the good news is I am able to live a long life with CLL. We were very scared for several weeks about all those unknowns so having some clarity and being in the right hands has been life changing!

Many thanks to all my friends and family who helped me get to MD Anderson, whether by cooking food for my family, bringing us food during chemo, driving me to/from West Clinic, babysitting Jackson, and sitting with me during long doctor appointments keeping me laughing through it all. Thank you to the amazing Dr. Leah Tonkin, who I am lucky enough to call a friend, for getting all my paperwork to MD Anderson and doing the research with the best at St. Jude to get me with the best at MD Anderson. I am eternally grateful!

I will keep you posted as I continue this journey with my bad blood.

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!

May 3, 2016 - MD Anderson, Houston, TX

We're here! Jack and I arrived in Houston yesterday. I have appointments all day at MD Anderson. I am seeing Dr. Jan Burger. We are anxious about his work and knowledge about CLL. Stay tuned!