July 11, 2007
Memorial Sloan Kettering
Dr. Abou-Alfa
Got to the appointment went in around 12 noon. Dr. David Huitzil, from Mexico, came in and did complete history. He had done a complete research of my records and he checked me over.
I had a time line of all my events and his were accurate with mine. I told Dr. Huitzil of the different regimens suggested to me. Irinotecan & Vincristine. I also told him of the three options that Mayo gave me. 1. Nexavar & Adriamycin 2. RFA 3. Monitor w/ scans. He left to get Dr. Abou-Alfa. Dr. Abou-Alfa came in and he was in there for around 25 minutes. He started off by saying, I guess you are here to see what I recommend you do. He said I realize you’ve been going through this for several years now and at this point I recommend you to do Nexavar with possible Adriamycin. He said he would not do the Irinotican and Vincristine. He said there are no studies and no proven facts that this would work. He said the doctor that recommended that regimen was way before their time and if it did work for someone else, that is great but it may not work for me. I told him that the Irinotecan and Vincristine worked for Rachel after doing it for 1 ½ years and he said you can’t go on what someone else has done. (This kinda threw me for a loop b/c there are no proven studies for this type of cancer, so what else do you have to go on besides what someone else has done???)
I asked did he have any patients he was treating with Nexavar and he said yes. He said it’s not a proven drug for FHC. He said he was nervous about the Adriamycin with Nexavar b/c the doctor would definitely need to know what they were doing with combining the two drugs. With the Adriamycin you have to be very careful with the heart. You have to have Muga scans to make sure your heart can handle the drug. By the way, Nexavar is a pill you would take every day and Adriamycin you would take by shot in the muscle once every 3 weeks.
I asked him if the tumor could be resected and he said absolutley not. He said he would not do the RFA at all.
I told him some had suggested to monitor with scans only and he said he would definitely not do that. He would be active in treatment. He said as you know this cancer is not curable, but it is treatable. You don’t sit and wait for something to happen, for new growth.
He told me I looked good and healthy. I asked how long would he do the Nexavar and possible Adriamycin and he said forever. It would be lifelong. He said you do it for as long as your body can stand it. He said you would have to monitor very carefully while doing this. I asked him if the chemo would get rid of the tumors or would it shrink them and he said no. He said the chemo would be done to stop new growth. Again he said he strongly suggested not to do the Irinotecan and Vincristine.
Side effects of Nexavar would be rash, fatigue, diarrhea, rare side effect is bleeding....again very rare. 1% chance.
Adriamycin, lose hair, orange urine, monitor hear with Muga scans for heart.
I asked him about what dosage to give and he said the doctor would know. It’s a routine dosage. It’s a normal protocol.
He told me to be very careful of what I read on the internet. He said each persons body is different and I can’t go on what they experienced.