The start of chemo

2/20/12 – submitted by Chellie

Last night the oncologist came to visit & gave us all of the final diagnostic factors. Luckily my genetics tests came back and show no “Philadelphia chromosome” which would have been another factor to consider for my chemo treatment. The genetics test did show that I have a mutation known as MLL which means that my specific type of leukemia has a tendency to relapse. Dr. McGuiness explained that with the MLL mutation, I’ll likely be up for a bone marrow (aka stem cell) transplant once I get into my first remission. (Obviously the bone marrow transplant is down the road a ways, but when it happens my care will be transferred from Kaiser/St. Joe’s Hospital over to an oncologist at the Colorado Blood Cancer Institute @ PSL (the hospital next door). PSL and University Hospital are the only hospitals here in Colorado that do bone marrow transplants. I feel so lucky to live in Denver where I have access to this amazing care and we don’t have to drive long distance to get treatment (John and Scotty can stay at home and its only a 30 minute drive to the hospital to visit)!!

So, chemo starts today. Round 1 will consist of 2 phases (Phase A and Phase B). Phase A starts this afternoon and will last for 4 days. Most of my chemo this phase will be through my central line but on day 2 (tomorrow) I’ll also get a dose of chemo through a lumbar puncture as a preventative measure (to protect my spinal fluid from any leukemia cells). During and after Phase A of chemo I will be at very high risk for infection so I’ll have to be SUPER careful not to contract anything. The doc also mentioned that I’ll likely require red blood cell and platelet transfusions to keep my numbers up as the chemo kills all the cells (good & bad). Phase B of my chemo will start 21 days from today. If everything is going well I get to go home between phases, but if there is any sort of concern (fever, need for blood/platelets, etc) then I’ll have to stay put. All of my chemo will be done on an inpatient basis because it is so intensive and my team needs to be able to monitor my vitals every 4 hours, need to be able to give me “blood products” as needed according to what my labs say, and keep me isolated and away from any possible infections. One of the most interesting things that I learned from Dr. McGuiness yesterday is that once I get into my first remission & get ready for the bone marrow biopsy that I’ll have to get re-immunized for everything (perhaps Scotty and I can get our shots together  lol).

 She explained it very well and it makes sense that they are totally “deleting” my current immune system & “rebooting” it with the new bone marrow when we get to that point. I find that totally fascinating! Other good news: My MUGA scan (cardiac function) came back completely within normal limits so we are all set on that front! (One less thing to have to worry about with the initial phase of chemo). And the spinal tap earlier this week showed that there wasn’t as much progression into my spinal fluid! :-)