Treatment "I just dropped in to see what condition my condition was in."
Just Dropped In, The First Edition, 1967
Treatment: Round 1, September 9
Like cancer, itself, no two people's reaction to chemotherapy will be the same. There are too many variables. My treatment called for five days of four basic, initial leukemia treatment drugs. But my white blood count was so high, they decided to try to reduce the count before starting the chemotherapy. They used a drug specifically targeting the white blood cells, and it was very effective as a short term solution. My chemotherapy treatments began within a matter of days.
My body tolerated the chemo drugs well enough. My friend in New Jersey says it's because of all the junk food I've consumed over my 76 years. I was fortunate to not have the nausea that frequently accompanies chemotherapy, and we could see the white blood count begin to decrease daily. That is not to say that I was without side effects. If it were a boxing match, day one was a draw. Days two, three kicked my butt. And, truthfully, I don't remember much from day four until the last ten days of my stay.
Somehow I had become infected with pneumonia, the flu and the common cold. The chemo treatment was making the pneumonia worse. Treatment was dropped to focus on the double pneumonia that was filling my lungs. Antibiotics, alone, were not enough, so heavy doses of steroids were used. The steroids caused my blood sugars to rise, so they countered that with insulin, even though I am not diabetic. My arms and legs began to swell to, perhaps, three times their normal size, and my eyes became slits in my face. Later, a chest tube was inserted to drain the liquid that was gathering around my heart and in my lungs. After several days of treatment, my lungs began to e clear, and the swelling began to go down.
Treatment changed to recovery. I needed to be strong enough to leave the hospital, which meant learning to walk with a walker, and I needed to build enough immune system to survive being out of a contained environment. The last week was a parade of physical, vocational, and respiratory therapists squeezed between diuretic IV's to reduce the swelling throughout my body.
Treatment: Round 2, October 5
We arrived at the hospital expecting the 3-4 day treatment with an outpatient recovery. but the doctors decided a round 1 do-over would provide the best opportunity for success. We were, both, disappointed by the results and a little apprehensive about another 28 day hospital stay. Like so many of the decisions we've had to make, there really wasn't any alternative.
The difference between the two treatments was amazing. No oxygen. No steroids. No insulin. No multi-day stretches where I was too sick to get out of bed. It took me a week to regain the strength to stand and another week to walk with a walker in September. I walked at least a mile everyday during the do-over. Obviously, the double pneumonia was the difference, and the decision to start over had been the right one.
My recovery also allowed my medical team to view me in a different light. No longer old and weak, I was now seen as hard working, determined, and willing to push the boundaries. Transplant became a treatment option for the first time.
Treatment: Round 3, November 1
AML + Philadelphia chromosome is very rare. It represents less than three percent of all leukemia cases. A clinic the size of Texas Oncology might see 200 new leukemia cases a year. In comparison, they might see an AML + Philadelphia chromosome case once every two years. Because of the rarity, there aren't many studies to use as treatment guidelines. Most of the drugs are considered "experimental" by the insurance companies because of the lack of supporting data, and the low volume allows the manufacturers to charge extremely high prices for their products. Welcome to the third round of treatment.
Dr. Bhushan has selected two very powerful drugs used for different leukemia variants, but ones that have shown some promise against the Philadelphia chromosome. They are both in pill form, allowing me to be treated on an outpatient basis. The plan is to try one drug for six-eight weeks, then switch to the other to see which is most effective.
We are about six weeks into the first drug, which we have named, Kick-Ass drug #1. While pleased with the lab results, it takes a bone marrow biopsy to reveal the whole story. My fifth bone marrow biopsy is scheduled for December 1.
Treatment: Round 4, December 8
My December 1 biopsy bought good news. Kick-Ass drug #1 did its job. My percentage of infected cells to 10%. We were elated.
Dr. Bhushan has decided to layer Kick-Ass drug #2 on top of number one to get the maximum impact, as we try to get the number of infected cells under 5%, our ultimate target. I started the second drug on December 13. The next bone marrow biopsy will happen in six to eight weeks, some where around March 1.
Patient Goals
Every patient's goal is remission. In the case of AML + Philadelphia chromosome, remission only comes with a successful stem cell transplant. In order to be eligible for a transplant, fewer than 5% of your cells can be infected with leukemia, and your white and red blood cells, your platelets, and your ANC cells must be within their normal ranges.
So, when I talk about labs, these are the values (numbers) that we are tracking with the weekly blood draws and bone marrow biopsies.