Hi Everybody,
I live in the northern Virginia area. I have recently been diagnosed with asymptomatic multiple myeloma and my hemotologist has suggested a second opinion from Dr. Huff at Johns Hopkins. Does Hopkins have a good reputation for multiple myeloma? Or would you suggest I look for a second opinion somewhere else, such as Sloan-Kettering or Mayo? Thanks for your feedback.
Forums
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: Where to go for 2nd opinion
My husband went for a 2nd opinion at John Hopkins last month. They were very easy to work with a coordinator arranged to have records and slides sent. It couldn't have gone smoother. We met with Dr. Borrello and his NP Amy I thought they were very thorough and well prepared for our consult. A prompt 5 page letter was sent back to our local oncologist out lining a treatment plan.
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Mrs.Wood - Name: Alicia
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 59
Re: Where to go for 2nd opinion
I went to Little Rock for my second opinion, and it was a 3 day affair, with bone marrow biopsy, PET, CAT, and MRI. With a lot of other tests for heart function, blood tests, Gene testing, etc. It was extensive. My insurance covered it, but I know it was expensive. What was the process and cost for Johns Hopkins. I think a lot of people don't get a second opinion, because of the hoops you have to go through at some institutions, the cost, the time, and ignorance of the need to get a myeloma specialist on your team. I had read posts before that MD Anderson required a large up front deposit before treatment. I saw a recent google search that had an on line second opinion that a patient can get on there web site: https://2nd.md/disease/multiplemyeloma The institutions are notable, but the only one that I have heard of with a great record for multiple myeloma was the Ohio State James Cancer Center. How to get a second opinion is something that I have been looking into for my Myeloma Blog. I did my stem cell transplants at Little Rock and my monthly treatments at Mayo Jacksonville. So far 6 years in CR. Best of luck on your multiple myeloma journeys. Gary
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GaryP
Re: Where to go for 2nd opinion
Gary
First -- it is always great to hear of success stories of long-lasting CR.
Second -- I have to ask: what is your current quality of life in CR? Is it back to normal? Or are there lingering effects of initial treatment. Just curious.
First -- it is always great to hear of success stories of long-lasting CR.
Second -- I have to ask: what is your current quality of life in CR? Is it back to normal? Or are there lingering effects of initial treatment. Just curious.
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Dan D
Re: Where to go for 2nd opinion
Dan D. By the way I love the name. I followed the Little Rock program, and it was extensive, but I thought it was worth the effort. So after 6 years in CR, I am not taking any drugs, and Dr. Barlogie let me know that he thought the multiple myeloma was not coming back. I always felt blessed to never have the worst of the CRAB except for kidney failure. My kidneys came back and now I am off of dialysis as well. Right now life is Dan D, but if you read Pat's column on the Beacon he sure made me remember all the things I used to do that I do not do now. I roller bladed, ran, and I now know it was not the new normal, but my new reality. I start to think now that I am back to near normal that I need to find out what I am going to do when I grow up. Good Luck and God Bless you on your journey. Gary
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GaryP
Re: Where to go for 2nd opinion
I've been to the MIRT clinic at the University of Arkansas for two years now and can't say enough about the care. They have been wonderful each time. I'm from Delaware so it's quite a trip for us. I see Dr Anaissie, whom I just adore, for my care. He is starting his own clinic with a team from Arkansas at the University of Cincinatti Cancer Center and I've decided to follow him. He feels the patient and doctor should work hand-in-hand with a treatment plan. I've never hand a doctor that will contact me anytime day or night, email daily for two weeks, and has spent so much time reviewing my case. He works with my doctor in Delaware for my care. I've been blessed as I only have Smoldering Myleloma; however, both doctors are carefully watching for the first sign of progression. I receive IVIG every three weeks and that has greatly helped ward off my shingles and infections as well as antibiotics at the first sign of infections. You will be in great hands with either the doctor or medical center. God bless.
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Silly girl 2010
No Deposit Required at MD Anderson
GaryP wrote:
> I went to Little Rock for my second opinion, and it was a 3 day affair,
> with bone marrow biopsy, PET, CAT, and MRI. With a lot of other tests for
> heart function, blood tests, Gene testing, etc. It was extensive. My
> insurance covered it, but I know it was expensive. What was the process
> and cost for Johns Hopkins. I think a lot of people don't get a second
> opinion, because of the hoops you have to go through at some institutions,
> the cost, the time, and ignorance of the need to get a myeloma specialist
> on your team. I had read posts before that MD Anderson required a large up
> front deposit before treatment. I saw a recent google search that had an
> on line second opinion that a patient can get on there web site:
> https://2nd.md/disease/multiplemyeloma The institutions are notable, but
> the only one that I have heard of with a great record for multiple myeloma
> was the Ohio State James Cancer Center. How to get a second opinion is
> something that I have been looking into for my Myeloma Blog. I did my stem
> cell transplants at Little Rock and my monthly treatments at Mayo
> Jacksonville. So far 6 years in CR. Best of luck on your multiple
> myeloma journeys. Gary
To respond to the comment about a deposit. I went to MD Anderson because they specialize in multiple myeloma and do more Stem Cell Transplants than anyplace, anywhere. They did my up front testing and analysis with NO PAYMENT at all and never needed a deposit prior to my treatments. I have had three stem cell transplants and am living now in my seventh year of treatment. I HIGHLY recommend anyone with multiple myeloma to go there! I am 67 years old!
Hugh
> I went to Little Rock for my second opinion, and it was a 3 day affair,
> with bone marrow biopsy, PET, CAT, and MRI. With a lot of other tests for
> heart function, blood tests, Gene testing, etc. It was extensive. My
> insurance covered it, but I know it was expensive. What was the process
> and cost for Johns Hopkins. I think a lot of people don't get a second
> opinion, because of the hoops you have to go through at some institutions,
> the cost, the time, and ignorance of the need to get a myeloma specialist
> on your team. I had read posts before that MD Anderson required a large up
> front deposit before treatment. I saw a recent google search that had an
> on line second opinion that a patient can get on there web site:
> https://2nd.md/disease/multiplemyeloma The institutions are notable, but
> the only one that I have heard of with a great record for multiple myeloma
> was the Ohio State James Cancer Center. How to get a second opinion is
> something that I have been looking into for my Myeloma Blog. I did my stem
> cell transplants at Little Rock and my monthly treatments at Mayo
> Jacksonville. So far 6 years in CR. Best of luck on your multiple
> myeloma journeys. Gary
To respond to the comment about a deposit. I went to MD Anderson because they specialize in multiple myeloma and do more Stem Cell Transplants than anyplace, anywhere. They did my up front testing and analysis with NO PAYMENT at all and never needed a deposit prior to my treatments. I have had three stem cell transplants and am living now in my seventh year of treatment. I HIGHLY recommend anyone with multiple myeloma to go there! I am 67 years old!
Hugh
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turbineman - Name: Hugh
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Jan 2006
- Age at diagnosis: 61
Re: Where to go for 2nd opinion
Hi Hugh, I was repeating something that I had heard before from someone who may have had limited insurance coverage. It is probably old and aged information. M.D Anderson has a great reputation, and also was where Dr. Bart Barlogie of UAMS came from to start MIRT. Thanks for providing better more timely information. Also, TM648 if you want to see more information on where to go for a second opinion, you can search "Where to go for a second opinion for multiple myeloma". The Myeloma Beacon and M.D. Anderson have posts as well as others/ Gary
Last edited by grpetersen1 on Mon Apr 30, 2012 4:41 pm, edited 1 time in total.
Re: Where to go for 2nd opinion
Hi TP648
The NIH in Bethesda Md. Is an excellent choice. Dr Landgren is a Well known expert. I am from the Midwest and am taking part in a study there on the Natural Progression of SMM. Many others will agree what a great choice that would be. Not to mention there is NO cost once you enter the door. They also reimburse for some expenses if you participate in the study. The staff is wonderful and very efficient. It's part of the NCI and is Federally Funded.
Good Luck on your decision
Art
The NIH in Bethesda Md. Is an excellent choice. Dr Landgren is a Well known expert. I am from the Midwest and am taking part in a study there on the Natural Progression of SMM. Many others will agree what a great choice that would be. Not to mention there is NO cost once you enter the door. They also reimburse for some expenses if you participate in the study. The staff is wonderful and very efficient. It's part of the NCI and is Federally Funded.
Good Luck on your decision
Art
Last edited by Art on Mon Apr 30, 2012 1:09 pm, edited 1 time in total.
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Where to go for 2nd opinion
Hi, Art:
Can you tell me a little bit more about the NIH monitoring program for SMM? How often do you travel to Bethesda? Since some tests, such as SPEP, take quite a few days, do you have your blood drawn locally before you travel to Bethesda? Besides the monitoring trial you are participating in NIH, do you have a local oncologist in midwest monitoring you on a more frequent basis in between your trips to Bethesda? Thanks!
Ben
Can you tell me a little bit more about the NIH monitoring program for SMM? How often do you travel to Bethesda? Since some tests, such as SPEP, take quite a few days, do you have your blood drawn locally before you travel to Bethesda? Besides the monitoring trial you are participating in NIH, do you have a local oncologist in midwest monitoring you on a more frequent basis in between your trips to Bethesda? Thanks!
Ben
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Ben S.
15 posts
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