My Acute Lymphoblastic Leukemia Journey
I will add definitions and links in areas that may need a bit more explanation so you can do a bit more research yourself.
In February 2013, I was feeling a bit ill but thought nothing of it. Over the few months the illness was showing up on and off until late May. I woke up one morning to all of my lymph nodes swollen and feeling like they were going to explode. When I say all I mean all, my arms, chest, neck, face, etc. All of them were very swollen and extremely painful. I contacted my primary Dr. to see what in the world was going on. He did every blood test he could think of and was stumped at my condition. My primary Dr. consulted with his partner who was also stumped. All blood tests they ran came back normal. They then set up an appointment with a surgeon to do a biopsy on one of my nodes to get to the bottom of this. They ended up taking one from my neck under my right ear. While I was waking up from the surgery the surgeon consulted with my wife telling her he believes it is cancerous, but not the type. The surgeon then scheduled an appointment at Nebraska Cancer Specialists with a blood cancer Oncologist the next day. Just knowing I had an appointment with an oncologist terrified my wife and I. My Oncologists name is Dr. T. He ordered several tests to be completed the next day. We were in such a daze that I didn’t pick up on words like lumbar puncture, bone marrow biopsy, MRI, and cat scan which were now scheduled. With all tests now complete it was a waiting game until our scheduled appointment with my Oncologist a few days later.
The appointment: We just cut straight to the chase. Dr. T said I have a form of childhood Leukemia called ALL (Acute Lymphoblastic Leukemia). Now the realization and magnitude of the situation really started to set in. My next questions was about the treatment. He basically just told me chemotherapy. The chemotherapy treatment suited for me and my condition was called HYPER CVAD. Treatment in a nutshell: The term ‘hyper‘ refers to the hyperfractionated nature of the chemotherapy, which is given in smaller doses, more frequently, to minimize side effects. ‘CVAD‘ is the acronym of the drugs used in course A: cyclophosphamide, vincristine, doxorubicin (also known by its trade name, Adriamycin), and dexamethasone.
Next appointment, surgery to install the power port in my left chest area
I completed all treatments at Bergan Mercy Hospital. I can’t say enough about the facilities and nursing staff.
Treatment schedule is as follows: Thank you Wikipedia!
Part A –
- Cyclophosphamide (Cytoxan) is an alkylating agent given at 300 mg/m2 by IV Q12hours over 3 hours (6 doses) Days 1, 2, and 3
- Vincristine (Oncovin) is a mitotic inhibitor, 2 mg IV Days 4 and 11
- Doxorubicin (Adriamycin or Rubex) is an antibiotic with anti-tumour effects, 50 mg/m2 IV Day 4
- Dexamethasone (Decadron) is an immunosuppressant 40 mg/day IV or PO Days 1-4 and 11-14
- Cytarabine or Ara-C (Cytosar) is an antimetabolite 70 mg IT Day 7
- Mesna (Uromitexan) is a compound used to reduce the incidence of haemorrhagic cystitis, a common side effect of the administration of cyclophosphamide. It is generally given via intravenous infusion or orally at the same time as cyclophosphamide.
- Methotrexate, an antimetabolite, may be given via the intrathecal route when it is necessary to get chemotherapy past the blood–brain barrier. 12 mg IT Day 2
- Multiple nausea medicines.
Part B –
- Methotrexate 1000 mg/m2 IV over 24 hours Day 1
- Leucovorin 25 mg/ m2 IV 12 hours after completing methotrexate infusion Q6H X 6 doses. Leucovorin is used as a ‘rescue’ agent to prevent excessive cellular damage by methotrexate.
- Sodium bicarbonate 600 mg PO (starting day before methotrexate) TID X 4 Days. Sodium bicarbonate is used to produce a mild metabolic alkalosis, desirable when administering large quantities of methotrexate. Urine pH values will be checked to ensure alkalosis prior to the commencement of methotrexate.
- Cytarabine3000mg/m2 IV over 2 hours Q12H X 4 doses Days 2 and 3
- Multiple nausea medicines.
***24 hours after being release from the hospital I received my Neulasta shot – Bone marrow stimulant. It can help the body make white blood cells after receiving cancer medications.
The one major side effect of Neulasta was bone pain. I remember talking to Dr. T during my first shot. He said to contact him if the bone pain get’s too bad. What? Bone pain? What is the world is that supposed to mean? So I asked if he meant a little discomfort or as he put it, pain? He said pain. I’ll tell you what, roughly 24 hours after the shot my hip bones were throbbing so bad it belt like they were going to explode from the inside out. Many sleepless nights due to the insane throbbing pain.
*** Every 1st (in the hospital) and 8th (out of the hospital) day would be a lumbar puncture, 1st day draw, 2nd day draw and replace with Methotrexate.
I had only one lumbar puncture headache from a 1st day draw, some of the worst pain I have ever had! The only way to eliminate the pain was to lay down flat on my back and fall asleep.
The average hospital stay for each parts A and B were 5-7 days depending on how my body reacted to the treatment. 24/7 chemo drips with little breaks in-between some chemo medicines. Others ran the entire time.
Little did I know I would have 8 rounds of parts A and B or 16 stays in the hospital.
I told him to be as aggressive as possible and to start immediately.
Just the start! I will be updating frequently.
Thanks for stopping by.