Emory notified Franklin today that Dr. Lonial and team decided no Kepivance before transplant due to his tongue condition. The Emory schedule begins on the morning of Jan. 4 and remains the same. We still do not know if he will have Velcade before chemo or after. We will be heading up there on the afternoon of Jan. 3 to get settled before the busy day of Jan. 4th. Everything is in place to have Bobby Hall house and dog sit while we are gone and we feel very good about leaving thing in his care. Thanks for all the comments, we both enjoy reading them and are so thankful for all our friends and family and especially all the prayers going up for Franklin.
A little humor - Franklin has the best attitude about all this- In the tennis group he was known as the BIG PEACH, he now thinks OCTOPUS is more appropriate. Reason being that his hair was falling out so he had a buzz cut.
I also forgot to tell everyone that 8 million stem cells were collected. 3 is needed for a transplant and they like to have enough for 2 transplants. Great Job!!!
Happy New Year!!!
Wednesday, December 27, 2006
Sunday, December 24, 2006
Merry Christmas to All and to All a Happy New Year!
We are so very thankful for time to enjoy the Christmas season. When we began this adventure it looked like our Christmas season would be enjoyed at Emory Hospital but we were fortunate enough to be at home and Franklin as drug free as possible. Since Thanksgiving, we have been blessed with wonderful visits from most of our immediate family and have enjoyed quality time together. We would like to sincerely wish all of you, that we have not been lucky enough to see, a wonderful Christmas and a prosperous new year. Please continue to hold Franklin in your prayers for a healthy 2007.
Now for an update on the game plan as of last visit to Emory on Dec. 19, 2006.
Doctor Lonial has asked Franklin to participate in a research study that has been successful in France and Italy but has not been tried in the U.S.. It will be the same protocol but will be adding randomized Velcade to the mix. Franklin agreed to participate. Lonial assured him that it would not hurt and could help with remission success. He of course could not promise that he would not experience some side effects from the addition. Franklin has taken Velcade previously with little adverse side effects, so we are banking on this for good results. This study has several downsides - he will have to have two additional bone marrow biopsies to check for success of the study but Franklin made sure that they would be conducted with Emory's no pain policy.
Jan. 2 - Infusion of Kepivance (Drug to reduce mouth sore side effects)- out patient
Jan. 3 - same as Jan. 2
Jan. 4 - Labs, B.M. biopsy, Kepivance and possible Velcade
Jan. 5 - Admit to Emory, Infusion of Melphalan(high dose chemo- burns out bone marrow to ready body for transplant)
Jan. 6 - Infusion of Melphalan
Jan. 7 - Rest day and possible Velcade
Jan. 8 - B.M. biopsy, Kepivance, Transplant
Jan. 9 - Kepivance
Jan. 10 - Kepivance
Time in the hospital after transplant could be 2 to 3 weeks.Criteria for discharge - walking 1 mile daily, no fever, white counts up and eating.
There may be minor changes to the beginning process but dates of chemo and transplant are set. Lonial wants to discuss with team of doctors about use of Kepivance due to Franklin's amyloidosis. This drug creates large amount of activity in mucous membranes of the mouth and he is concerned how it may affect tongue swelling.
We have decided to reserve a suite at Holiday Inn Express which is only about 5 minutes from Emory. Sorry no wild parties just yet, we will hold off until the adventure draws to a close.
Our plans right now are to go up on the 2nd of Jan. ready to stay. This will allow us to have a base camp during Franklin's hospital stay and after when he will need to be close to Emory for observation. The length of time all depends on how well things progress. Franklin is such a fighter that we are assured of complete remission and fast recovery.
Lately, he has been dealing with tremendous muscle weakness but continues to dedicate himself to walking a mile a day, lifting his weights and squats using the exercise ball. We again hope you will communicate through the comments section on our blog. Thanks for the comments so far.
Now for an update on the game plan as of last visit to Emory on Dec. 19, 2006.
Doctor Lonial has asked Franklin to participate in a research study that has been successful in France and Italy but has not been tried in the U.S.. It will be the same protocol but will be adding randomized Velcade to the mix. Franklin agreed to participate. Lonial assured him that it would not hurt and could help with remission success. He of course could not promise that he would not experience some side effects from the addition. Franklin has taken Velcade previously with little adverse side effects, so we are banking on this for good results. This study has several downsides - he will have to have two additional bone marrow biopsies to check for success of the study but Franklin made sure that they would be conducted with Emory's no pain policy.
Jan. 2 - Infusion of Kepivance (Drug to reduce mouth sore side effects)- out patient
Jan. 3 - same as Jan. 2
Jan. 4 - Labs, B.M. biopsy, Kepivance and possible Velcade
Jan. 5 - Admit to Emory, Infusion of Melphalan(high dose chemo- burns out bone marrow to ready body for transplant)
Jan. 6 - Infusion of Melphalan
Jan. 7 - Rest day and possible Velcade
Jan. 8 - B.M. biopsy, Kepivance, Transplant
Jan. 9 - Kepivance
Jan. 10 - Kepivance
Time in the hospital after transplant could be 2 to 3 weeks.Criteria for discharge - walking 1 mile daily, no fever, white counts up and eating.
There may be minor changes to the beginning process but dates of chemo and transplant are set. Lonial wants to discuss with team of doctors about use of Kepivance due to Franklin's amyloidosis. This drug creates large amount of activity in mucous membranes of the mouth and he is concerned how it may affect tongue swelling.
We have decided to reserve a suite at Holiday Inn Express which is only about 5 minutes from Emory. Sorry no wild parties just yet, we will hold off until the adventure draws to a close.
Our plans right now are to go up on the 2nd of Jan. ready to stay. This will allow us to have a base camp during Franklin's hospital stay and after when he will need to be close to Emory for observation. The length of time all depends on how well things progress. Franklin is such a fighter that we are assured of complete remission and fast recovery.
Lately, he has been dealing with tremendous muscle weakness but continues to dedicate himself to walking a mile a day, lifting his weights and squats using the exercise ball. We again hope you will communicate through the comments section on our blog. Thanks for the comments so far.
Tuesday, December 5, 2006
No News
Emory is giving us a break. We have not heard from Emory on the next course of action. Franklin is enjoying a few days free of chemo and doctors. He is trying to build back his strength by walking and weights. Mouth is much better which allows him to enjoy the wonderful art of eating again, still working on regaining his appetite back to normal. Each day seems to bring a little more energy and side effects from growth factor shots and chemo seem to be subsiding. As far as we can tell from recent blood work, numbers are looking good and drugs seem to be bringing cancer cells down.
Sunday, December 3, 2006
This past week we have been at Emory about every day trying to collect stem cells.I have been takin growth facto shots 3times a day a home. Aimee had done a great injection job.
The shots stimulate cell production but really make me weak.
Thurs and Fri there was a successful collection. This involves staying hooked to a machine for about 4 hours that separates out the stem cells. Now I have enough for a
transplant and enough left over for a backup. My white count went up to about 40000(normal is about 11000).
Before I started the shots I was given a high dose of cytoxin and this has made me lose some hair but not much
The shots combined with cytoxin take away most of my energy but this is physical and not mental. I feel good,appetite is coming back.(Lived on liquids like ensure about a week) No pain.
Emory is going to evaluate my progress and we should know what happens next fairly soon. The next step is going to be the actual transplant and this will be the hardest part and involve several weeks in the hospital,heavy duty chemo and who knows what else.
I am very sure that that this procedure will work and put me into remission but I understand that this takes months of recovery.
Thanks for your interest and comments.
The shots stimulate cell production but really make me weak.
Thurs and Fri there was a successful collection. This involves staying hooked to a machine for about 4 hours that separates out the stem cells. Now I have enough for a
transplant and enough left over for a backup. My white count went up to about 40000(normal is about 11000).
Before I started the shots I was given a high dose of cytoxin and this has made me lose some hair but not much
The shots combined with cytoxin take away most of my energy but this is physical and not mental. I feel good,appetite is coming back.(Lived on liquids like ensure about a week) No pain.
Emory is going to evaluate my progress and we should know what happens next fairly soon. The next step is going to be the actual transplant and this will be the hardest part and involve several weeks in the hospital,heavy duty chemo and who knows what else.
I am very sure that that this procedure will work and put me into remission but I understand that this takes months of recovery.
Thanks for your interest and comments.
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