I FINALLY received news on the trial at Vanderbilt. After numerous phone calls daily, they have finally scheduled my appointments. I am pretty sure they were just sick of me calling. At this point, whatever works. I have no issues with being a huge pain in the ass if it saves my life!
So, April 12th we will leave for Vanderbilt.
April 13th I will have scans, labs and appointments. At this point I STILL do not "officially" qualify. My labs have to come back ok in order for me to qualify. At this time I know that my white blood cells and red blood cells are low. All my other counts are in normal range. At the Bright Spot they started me on something (that tastes AWFUL!) to increase my WBC and RBC. Pray that it works.
April 14th I will be hospitalized and will be started on one of the cocktail drugs. Over the next few days I will remain in the hospital and have labs drawn about every 15 minutes. After three days we will head to a hotel (hopefully the Hope House which is free for chemo patients-pray!) and we will stay there 5 more nights. I have to head in for labs for those days at the same time every day.
April 20th I will be started on the RO5 drug. I will take 4 pills in the morning and 4 pills in the evening every day for as long as it works.
May 2nd-18 days later-we will return to Vanderbilt and start the whole process over only this time I will also have the RO5 drug along with the drug cocktails.
That part of the trial will end around May 8th. I will return home and remain on the RO5 as long as it is working.
22-30 days following the first dosage of RO5 I will have to return to Vanderbilt for more scans and derm check up.
Right now the cancer has spread. I know it has. The lymph node in my left groin is enlarged and last night I found a mass in my left chest. Of course I don't know for certain that either of these are cancer, but, trust me, they are. Cancer just has a different feel. It doesn't hurt, persay, but it is just an annoying, constant pain. I am sure that as the tumors get larger they will really hurt. Let's pray that we don't get to that point.
At this time we are still trying to decide whether we should fly or drive. A dear friend has given us several free flights through Southwest and I have several coupons for rental cars. Cost wise it may be about the same. However, for us to drive to Nashville it will take about 11 1/2 hours. That's a lot of time and a lot of miles on my car! The upside is we have the freedom to head home sooner than we would with flights. Decisions, decisions.
4 weeks ago