Clearing Up Misconceptions
In May, right after we decided to stop treatments, I had a CT scan. The results of the scan showed a shadow on my liver and some slight soft tissue thickening in a spot in my abdomen. Neither area was fully consistent with a reoccurance, so Dr. W ordered a PET/CT scan to check for metabolic activity. There was a substantial amount of difficulty getting the paperwork through to get the scan. The day before the scan, I had an appointment with Dr. W and he said we should go ahead and schedule chemo for the following week. At that point, he also had an oncology fellow perform a bone marrow biopsy on me due to the ongoing problem of the low platelets. Bone marrow biopsies are not fun - ouch!
The next day I had the PET scan, but there was a problem with the IV and instead of injecting the radioactive isotope and the contrast into my bloodstream, it went into my arm which swelled up. It also meant that the scan was worthless. We had to schedule another one for that Friday with an extra appointment with the oncology clinic to have them insert the IV.
On Thursday, I went in for more blood tests. I briefly spoke with Dr. W on the phone and he let me know that the bone marrow biopsy results were good and the low platelet problem was not coming from there. I also had tested strongly positive for the platelet antibody. He said he felt comfortable diagnosing me with ITP - Immune (Ideopathic) Thrombocytopenia Purpura. In other words, my own immune system is attacking my platelets. He prescribed a high dose of prednisone to try to raise the platelet count.
The following Monday, I went in expecting the PET results and chemo treatment. Well, the PET results were not in yet and my platelets were still low. So Dr. W postponed my treatment until Wednesday and ordered two treatments of IVIg (intravenous immunoglobulin) which meant that I had to sit in the clinic for hours on Monday... and Tuesday... and Wednesday. Wednesday Dr. W came in and gave me the results of the scan. My liver is clear. The shadow did not show up at all. There is metabolic activity in the spot in my abdomen and a couple of lymph nodes. So I started treatment that day.
I am on FOLFIRI (5FU, Leucovorin, Irinotecan) with Avastin every two weeks. My second treatment was delayed because the day after the first treatment finished, I left to visit my family, my college friends and attend the wedding of my LA friends Sarah and John. The day after I returned - actually a few hours after I returned, but that's another story - I had my second treatment.
My third treatment is scheduled for this Tuesday. Good times...