For all the patients who have been treated by Dr. Bart Barlogie at UAMS, there was the big question-should I stay at UAMS or change to Mt. Sinai, where Dr. Barlogie now practices? My decision was not that easy. So I went to see Dr. Barlogie at Mt.Sinai, and let me count the WHYS I will continue to go.
- Dr. Van Rhee is at UAMS and he has a similar philosophy to Dr. Barlogie, so I did not have to worry about a major change in treatment philosophy. I like both doctors, however Dr. Barlogie has been my doctor for several years and even a tie would go to Dr. Barlogie. Advantage, Sinai
- UAMS has seen so many patients and has a support system which is well oiled and efficient. Can I get a similar experience at Mt. Sinai? If I had been one of the first flood of new patients from UAMS to Sinai in the first few months, I would have said UAMS by a mile. With Dr. Barlogie's move to Mt. Sinai, there was a sudden flood of new patients. When I went they had already made the adjustments to handle the increased volume, and it was one of the few times I did not have to wait hours for my appointment with Dr. Barlogie. He was always overbooked and overextended. In addition, I was able to get all of my results in a three day period rather than 4 days at UAMS. By a slim margin Advantage, UAMS but with a little more time I think this may change to Sinai.
- New York is less costly to travel to than Little Rock and easier to get to with many cheap direct flights from Jacksonville. Advantage Sinai
- My wife just retired, so my insurance is now Medicare and Blue Cross Blue Shield Part F. Will this new changed insurance provide coverage at UAMS and Mt. Sinai? They were accepted by each location. Tie for UAMS and Sinai
- My daughter lives in Brooklyn, so I would be able to make it a family visit along with a myeloma checkup. No cost for a hotel, and no car required (use the subway). Without this the cost of hotel would be higher than in Little Rock. You can find hotels for $100 to $150 per night in New York if you don't mind a $20 cab ride or a $3 subway fare. Just as UAMS has had for long stays, Sinai is negotiating long term rates for those who need a longer stay for transplant. I can hardly imagine New York will have an advantage in this area over Little Rock. For me Advantage Sinai, for most others Advantage UAMS
- Little Rock is a nice city, however during breaks in treatment in New York you can walk to the MET museum or the Guggenheim museum, and on your off day do a half price Broadway play. Advantage Sinai.
- What is the level of the other doctors and support staff at Sinai as compared to UAM? UAMS has Dr. Morgan, Dr. Maurizio Zangari, and Dr. Fritz Van Rhee, while Sinai has Dr. Jagannath, Dr. Barlogie, and Dr. Chari. Dr. Barlogie noted the support staff at Sinai was outstanding and above his expectations. I have to rate this a Tie for Sinai and UAMS
Final Tally - For Me Advantage Dr. Barlogie and Mt. Sinai!
Now how was my visit. The visit with my family and the myeloma checkup all went well. Before I left I was given all my results except those for my MRD test, which takes several days. I flew into New York on Tuesday, and took an hour subway ride from Brooklyn to Mt. Sinai on Wenesday. Being from places which do not have subways it was a little intimidating, but I found New Yorkers more than happy to help us get where we needed to go. On Friday I had a PET scan at 7:30am in the morning and Dr. Barolgie's meeting at noon. The PET scan info was already available. How cool was that, it saved me a day. Dr. Barlogie gave me an all clear sCR(stringent complete response), no bone lytic lesions, no M spike, and normal light chains and ratio. So I went home joyful. I had been MRD negative for the last 2 years and was hoping to make a three-peat. When my MRD test came back in a few days it had showed the following:
MRD was slightly vague: when Bart returns from Japan we will get his take on it.
A very low-level population of CD38+ plasma cells is detected that coexpresses lambda cytoplasmic light chain, comprising 0.01% of all analyzed white blood cells (cKappa 0%, cLambda 20%). COMMENT: Significance of this finding is uncertain but may represent minimal residual disease. Suggest clinical correlation. Cytogenetics were 46 XY in 20 metaphases.
Signal Genetics, Gene Expression Profile:
- Dr. Van Rhee is at UAMS and he has a similar philosophy to Dr. Barlogie, so I did not have to worry about a major change in treatment philosophy. I like both doctors, however Dr. Barlogie has been my doctor for several years and even a tie would go to Dr. Barlogie. Advantage, Sinai
- UAMS has seen so many patients and has a support system which is well oiled and efficient. Can I get a similar experience at Mt. Sinai? If I had been one of the first flood of new patients from UAMS to Sinai in the first few months, I would have said UAMS by a mile. With Dr. Barlogie's move to Mt. Sinai, there was a sudden flood of new patients. When I went they had already made the adjustments to handle the increased volume, and it was one of the few times I did not have to wait hours for my appointment with Dr. Barlogie. He was always overbooked and overextended. In addition, I was able to get all of my results in a three day period rather than 4 days at UAMS. By a slim margin Advantage, UAMS but with a little more time I think this may change to Sinai.
- New York is less costly to travel to than Little Rock and easier to get to with many cheap direct flights from Jacksonville. Advantage Sinai
- My wife just retired, so my insurance is now Medicare and Blue Cross Blue Shield Part F. Will this new changed insurance provide coverage at UAMS and Mt. Sinai? They were accepted by each location. Tie for UAMS and Sinai
- My daughter lives in Brooklyn, so I would be able to make it a family visit along with a myeloma checkup. No cost for a hotel, and no car required (use the subway). Without this the cost of hotel would be higher than in Little Rock. You can find hotels for $100 to $150 per night in New York if you don't mind a $20 cab ride or a $3 subway fare. Just as UAMS has had for long stays, Sinai is negotiating long term rates for those who need a longer stay for transplant. I can hardly imagine New York will have an advantage in this area over Little Rock. For me Advantage Sinai, for most others Advantage UAMS
- Little Rock is a nice city, however during breaks in treatment in New York you can walk to the MET museum or the Guggenheim museum, and on your off day do a half price Broadway play. Advantage Sinai.
- What is the level of the other doctors and support staff at Sinai as compared to UAM? UAMS has Dr. Morgan, Dr. Maurizio Zangari, and Dr. Fritz Van Rhee, while Sinai has Dr. Jagannath, Dr. Barlogie, and Dr. Chari. Dr. Barlogie noted the support staff at Sinai was outstanding and above his expectations. I have to rate this a Tie for Sinai and UAMS
Final Tally - For Me Advantage Dr. Barlogie and Mt. Sinai!
Now how was my visit. The visit with my family and the myeloma checkup all went well. Before I left I was given all my results except those for my MRD test, which takes several days. I flew into New York on Tuesday, and took an hour subway ride from Brooklyn to Mt. Sinai on Wenesday. Being from places which do not have subways it was a little intimidating, but I found New Yorkers more than happy to help us get where we needed to go. On Friday I had a PET scan at 7:30am in the morning and Dr. Barolgie's meeting at noon. The PET scan info was already available. How cool was that, it saved me a day. Dr. Barlogie gave me an all clear sCR(stringent complete response), no bone lytic lesions, no M spike, and normal light chains and ratio. So I went home joyful. I had been MRD negative for the last 2 years and was hoping to make a three-peat. When my MRD test came back in a few days it had showed the following:
MRD was slightly vague: when Bart returns from Japan we will get his take on it.
A very low-level population of CD38+ plasma cells is detected that coexpresses lambda cytoplasmic light chain, comprising 0.01% of all analyzed white blood cells (cKappa 0%, cLambda 20%). COMMENT: Significance of this finding is uncertain but may represent minimal residual disease. Suggest clinical correlation. Cytogenetics were 46 XY in 20 metaphases.
Signal Genetics, Gene Expression Profile:
To me this did not sound very good, and certainty not as good as a three-peat. When Bart came back from Japan, he confirmed I was MRD positive, but it was not really bad news. He said first it was at a very low level, and secondly it was the first time he was able to evaluate my myeloma cells, and the GEP(gene expression profile) showed a very low risk disease. He likened it to a very low risk low level MGUS state. With myeloma there is never a dull moment.
So will I stay or will I go? For now I am going to dance with the one who got me to sCR, when my original diagnosis was for a life expectancy of three MONTHS. So Dr. Barlogie, ready or not you got me now! As long as I had him on the phone, I asked him if he would be on an upcoming Cure Talks panel and he was kind enough to agree. So we will have the pleasure of having Dr. Barlogie on a May or June panel. Whatever works into his schedule. Should be outstanding.
And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com
For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1
So will I stay or will I go? For now I am going to dance with the one who got me to sCR, when my original diagnosis was for a life expectancy of three MONTHS. So Dr. Barlogie, ready or not you got me now! As long as I had him on the phone, I asked him if he would be on an upcoming Cure Talks panel and he was kind enough to agree. So we will have the pleasure of having Dr. Barlogie on a May or June panel. Whatever works into his schedule. Should be outstanding.
And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com
For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1
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