Clinical Trials and starting treatment
The doctors have determined that a chemo regimen from a clinical trial is the best treatment for my case based on age and presentation. This trial is not a standard treatment yet but shows promising results. For standard treatment any person between the ages of 18-80ish are given the adult chemo schedule and under 18 are given the children’s treatment. Doctors have found that ALL in children is highly curable and in adults not so much. This is for a variety of reasons. Adults are more likely to have underlying conditions and be in poorer health etc and respond differently to treatment. The clinical trial that has been chosen for me uses the children’s treatment protocol to treat young adults with ALL.
The plan was to start treatment on Friday, however, we are awaiting insurance approval. One reason for the wait is that the treatment is considered a clinical trial. Apparently with clinical trials, insurance does not usually approve immediately. Obviously this is frustrating for doctors and patients who would prefer starting treatment as soon as possible but also don’t want to be stuck with a huge bill if insurance doesn’t start. Doctor says he will says he will fight like hell to get approval to start chemo as soon as the insurance office opens for the week. He said he considered sending me home for the weekend but decided against it since I have small children and I would need monitoring of my blood and meds to keep me stable.
Chemo treatment will consist of 4 different scheduled chemo meds that are given in my hospital room with alternating spinal taps (suck) and bone marrow biopsy (major suck) procedures to monitor progress and assess response to treatment. These procedures are performed every other week. I will also be given large amounts of high dose steroids to help my body respond. As for side effects I am told that everyone responds differently. I will definitely be tired with possible debilitating fatigue and I will definitely lose my hair. The other side effects vary and are manageable with medications. I was told that if I was nauseous during pregnancy then I am more likely to be nauseous from the chemo. I had an almost constant mild nausea during pregnancy but didn’t throw up so I would expect it to be like that. There are multiple medications for treating the nausea. My tastes can change and certain foods could taste awful. I will have decreased appetite but that will be counteracted by the steroids which will increase my appetite and also add fluid weight gain. Side effects peak at around days 7-10 following treatment.
The kids have been in to visit frequently. They are having a hard time with all of this, of course. I wish I could protect them from all of this but I can’t. Here’s pick of Xanderrific reading the comics in my room.