I've got 5 treatments this week. One down....doing good so far. Still numb in my fingertips.
I have appointment with Dr. Amanze on Tuesday, August 14th.
I guess I will have to wait till the appointment to get my last scan results.
I'll be in touch....
Monday, July 30, 2007
Saturday, July 28, 2007
Finished with one week!
Just letting you all know that I'm done with the first week. Last night my feet started tingling a little bit and this morning my fingers are just the least bit numb on the tips. This is from the Vincristine I received on Monday.
No other side effects and that is great!
Just wanted to keep you all updated!
Have a great weekend.........
No other side effects and that is great!
Just wanted to keep you all updated!
Have a great weekend.........
Tuesday, July 24, 2007
Two days down.....
Just wanted to let you all know that I am feeling well. No side effects.....YIPPEE!
I'll be in touch!
I'll be in touch!
Monday, July 23, 2007
First day....done
I've completed the first day of chemo. It took about 4 hours and now I'm resting. Just wanted you all to know I'm doing good and we are going to make it!
Saturday, July 21, 2007
Confusion
I think I need to clarify one thing. I will not be admitted to the hospital on Monday and Tuesday. I will only recieve the chemo treatment at the hospital b/c the doctors office can't get the medicine yet. It takes them about a week b/c of insurance.
Sorry for the confusion.
Sorry for the confusion.
Wednesday, July 18, 2007
The Plan
I saw Dr. Amanze today and she was a totally different doctor from last time. She was very nice and prepared for my visit this time. :-)
I will have scans this Friday (7/20) and will start chemo on Monday, July 23rd. The regimen is what Dr. Nguyen recommended and is the same thing Rachel did....Irinotecan and Vincristine. Here's hoping I have as much success with it as Rachel did.
I will have my first two days of chemo at the hospital and then after that will have it at Dr. Amanze's office. I will also attend a Chemo Awareness class on Monday night.
When I start Monday, I will go for 2 weeks and then have a week off. Then another 2 weeks and a week off. And the cycle repeats....don't know how long. I will have scans periodically.
Thanks for all your support and your thoughts, I can feel them each and every one.
Much love to you all....
Kelly
I will have scans this Friday (7/20) and will start chemo on Monday, July 23rd. The regimen is what Dr. Nguyen recommended and is the same thing Rachel did....Irinotecan and Vincristine. Here's hoping I have as much success with it as Rachel did.
I will have my first two days of chemo at the hospital and then after that will have it at Dr. Amanze's office. I will also attend a Chemo Awareness class on Monday night.
When I start Monday, I will go for 2 weeks and then have a week off. Then another 2 weeks and a week off. And the cycle repeats....don't know how long. I will have scans periodically.
Thanks for all your support and your thoughts, I can feel them each and every one.
Much love to you all....
Kelly
Tuesday, July 17, 2007
Appointment tomorrow
I have an appointment with Dr. Amanze tomorrow at noon. She is the oncologist I was referred to since Dr. Nguyen is no longer here. Just wanted to let everyone know. I'll update after the appointment.
Monday, July 16, 2007
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.
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.
Wednesday, July 11, 2007
Our "other" blog
Just in case you are interested in our "other" blog. Here it is...
http://kellyandburtpitts.blogspot.com/
I've put some updates about our trip here in New York.
http://kellyandburtpitts.blogspot.com/
I've put some updates about our trip here in New York.
Appointment is over
Dr. Abou-Alfa reccomended Nexavar and Adriamycin for treatment. Not exactly what I was expecting. He was very nice and he told us to contact him whenever we needed to. We have some big decisions to make. More later......we're going to walk around the big city now.
We've arrived in the Big Apple!
Well, our flight from Tallahassee to Tampa was uneventful. Not the case from Tampa to New York. We were supposed to land at 10:06 p.m. in New York and we took off from Tampa at 10:12 p.m. At one point we were wondering if we would make the appointment......but here we are. We are staying on the 28th floor of the Courtyard Marriott. And I must admit that Burt and Mama were both right, the office building Dr. Abou-Alfa is in is also in this building. He's on the 4th floor. So, we don't even have to leave the building to go to the appointment....later this morning. I've got to get to bed. More tomorrow!
Monday, July 2, 2007
Update
A week from tomorrow we will fly to New York for the appointment at Sloan Kettering.
I also have a follow up appointment with Mayo in a few weeks, if necessary. They have me scheduled to see a cardiothoracic surgeon that day also. Not sure if I'll keep the appointment or not. We'll just wait to see what Dr. Abou-Alfa has to say.
We'll be in touch!
I also have a follow up appointment with Mayo in a few weeks, if necessary. They have me scheduled to see a cardiothoracic surgeon that day also. Not sure if I'll keep the appointment or not. We'll just wait to see what Dr. Abou-Alfa has to say.
We'll be in touch!
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