September 8, 2009 is the new launch date for the journey into the wild blue unknown of amyloidosis treatment.
We met today with Dr. Schwarzberg to discuss the new regimen, how it will work, the possible side effects and what we hope to accomplish.
I will be receiving my dose of Velcade combined with 20mg of Dexamethasone once a week for four consecutive weeks.
There will then be a one week chemo holiday to allow my body to heal and get itself running again.
Once vacation is over, we start back in again for four weeks, one week of rest and so and so forth.
While this is going on, there will be close monitoring of blood platelets and kidney function just in case the Velcade decides to affect them detrimentally.
If we find that the results of once a week are not acceptable, the option to go to a twice per week Velcade infusion is always a viable option.
Should we move up to the twice weekly option, it would be administered in cycles of two weeks on with one week of rest in between.
The idea is to try and keep the amount of drugs to a minimal level that produces the desired results. Sometimes, more is not always better, and the risks involved with higher dosages are not worth it unless absolutely necessary.
This proposed protocol was a collaborative effort between Dr. Schwarzberg and Dr. Vaishali Sanchorawala, M.D. who is the Director of Stem Cell Transplant Program at The Boston University Amyloid Treatment and Research Program and Dr. Rosemary O'Connell, Internal Medicine of BU.
I consider myself very lucky to have such competent medical professionals in my corner, well trained, experienced and without egos that would prevent them from working together to keep AMY from claiming another victim.
I have placed a blind trust in these doctors which has required a real leap of faith on my part after some of the incompetent care that I believe I received during the past couple of years of misdiagnoses.
I have always been one to research any subcontractors I needed in business or products that I was considering purchasing in order to establish a good track record in performance and quality.
It is almost impossible to do this with the doctors who are treating you for a capricious disease like amyloidosis.
The choices are more limited and looking at a track record isn't a very good gauge of their success in treating this disease because of the limited options available to them at this time and the individual nuances of every patient.
All one can do is question them to the best of an informed layman's ability and then decide if they inform you properly, have a bedside manner that eases you and are knowledgeable and well enough informed to provide the help that you need.
I guess that I will never really know, but I took that leap and away we go.
Jo Ann and I have no regrets and no mixed feelings about my doctors.
We have placed my care into their hands and in some way that provides comfort and helps reduce the anxiety inherent in the trip down this dark desolate road.
Whatever the outcome, I am content that everything possible and reasonable will be done to achieve the goal of remission and the return of some part of the life we knew before we knew AMY.
If we are successful, it will be party time, and if we aren't, at least we will know that we fought a good clean fight and did everything within our power as mere mortals to win a battle with Mother Nature who has considerably more pull than we do.
We met today with Dr. Schwarzberg to discuss the new regimen, how it will work, the possible side effects and what we hope to accomplish.
I will be receiving my dose of Velcade combined with 20mg of Dexamethasone once a week for four consecutive weeks.
There will then be a one week chemo holiday to allow my body to heal and get itself running again.
Once vacation is over, we start back in again for four weeks, one week of rest and so and so forth.
While this is going on, there will be close monitoring of blood platelets and kidney function just in case the Velcade decides to affect them detrimentally.
If we find that the results of once a week are not acceptable, the option to go to a twice per week Velcade infusion is always a viable option.
Should we move up to the twice weekly option, it would be administered in cycles of two weeks on with one week of rest in between.
The idea is to try and keep the amount of drugs to a minimal level that produces the desired results. Sometimes, more is not always better, and the risks involved with higher dosages are not worth it unless absolutely necessary.
This proposed protocol was a collaborative effort between Dr. Schwarzberg and Dr. Vaishali Sanchorawala, M.D. who is the Director of Stem Cell Transplant Program at The Boston University Amyloid Treatment and Research Program and Dr. Rosemary O'Connell, Internal Medicine of BU.
I consider myself very lucky to have such competent medical professionals in my corner, well trained, experienced and without egos that would prevent them from working together to keep AMY from claiming another victim.
I have placed a blind trust in these doctors which has required a real leap of faith on my part after some of the incompetent care that I believe I received during the past couple of years of misdiagnoses.
I have always been one to research any subcontractors I needed in business or products that I was considering purchasing in order to establish a good track record in performance and quality.
It is almost impossible to do this with the doctors who are treating you for a capricious disease like amyloidosis.
The choices are more limited and looking at a track record isn't a very good gauge of their success in treating this disease because of the limited options available to them at this time and the individual nuances of every patient.
All one can do is question them to the best of an informed layman's ability and then decide if they inform you properly, have a bedside manner that eases you and are knowledgeable and well enough informed to provide the help that you need.
I guess that I will never really know, but I took that leap and away we go.
Jo Ann and I have no regrets and no mixed feelings about my doctors.
We have placed my care into their hands and in some way that provides comfort and helps reduce the anxiety inherent in the trip down this dark desolate road.
Whatever the outcome, I am content that everything possible and reasonable will be done to achieve the goal of remission and the return of some part of the life we knew before we knew AMY.
If we are successful, it will be party time, and if we aren't, at least we will know that we fought a good clean fight and did everything within our power as mere mortals to win a battle with Mother Nature who has considerably more pull than we do.