Hi there,
My parents let me know yesterday that my dad was diagnosed with multiple myeloma a few months back. It doesn't sound like there are any symptoms yet, so I'm guessing it's either smoldering or stage I?
He currently has an appointment in about a month to begin treatment for an autologous stem cell transplant at Mount Sinai hospital in New York. (My parents live in Brooklyn.)
I was wondering if anyone has any experience with myeloma treatment at Mount Sinai and is able to share their thoughts and feelings on how it went.
Thanks very much for your time, and apologies if these questions are excessively naive or inappropriate -- this is all quite new to me.
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Re: Autologous stem cell transplant at Mount Sinai
Hi Yossi,
Welcome to the forum.
I'm sorry to hear your dad was diagnosed with multiple myeloma. I know that there is a lot of info and feelings to take in just now. But be clear that treatments and the prognosis for multiple myeloma patients have really advanced a lot in the past few years.
A few things to help you with understanding this situation:
1. If doctors are talking about a transplant, your dad is very likely not smoldering, but instead has symptomatic multiple myeloma (see the patient handbook below). You can often be symptomatic without feeling any the worse for it.
2. You might want to educate yourself a bit more on the disease and when one gets treated by reading this handbook.
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
3. I have not personally been to the Mount Sinai hospital, but it looks like they have some good docs there with a good understanding of multiple myeloma. Some other folks on the forum that might have used Mount Sinai may chime in.
Quite a few folks on this site have also used Memorial Sloan-Kettering in NY. With this disease, it's always good to get a second opinion from a different institution, especially if one is talking about beginning treatment. See this link for a list of multiple myeloma specialty centers in NY.
https://myelomabeacon.org/resources/treatment-centers/#New%20York
Hope this helps get you jump started. Folks on this forum are happy to help you.
Welcome to the forum.
I'm sorry to hear your dad was diagnosed with multiple myeloma. I know that there is a lot of info and feelings to take in just now. But be clear that treatments and the prognosis for multiple myeloma patients have really advanced a lot in the past few years.
A few things to help you with understanding this situation:
1. If doctors are talking about a transplant, your dad is very likely not smoldering, but instead has symptomatic multiple myeloma (see the patient handbook below). You can often be symptomatic without feeling any the worse for it.
2. You might want to educate yourself a bit more on the disease and when one gets treated by reading this handbook.
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
3. I have not personally been to the Mount Sinai hospital, but it looks like they have some good docs there with a good understanding of multiple myeloma. Some other folks on the forum that might have used Mount Sinai may chime in.
Quite a few folks on this site have also used Memorial Sloan-Kettering in NY. With this disease, it's always good to get a second opinion from a different institution, especially if one is talking about beginning treatment. See this link for a list of multiple myeloma specialty centers in NY.
https://myelomabeacon.org/resources/treatment-centers/#New%20York
Hope this helps get you jump started. Folks on this forum are happy to help you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Autologous stem cell transplant at Mount Sinai
Hi Multibilly -- Thanks very much for the care and consideration evident in your response, and for the handbook.
Re: Autologous stem cell transplant at Mount Sinai
Hi Yossi,
Welcome. I did my auto at Mt. Sinai. My primary myeloma doc is with Mt. Sinai and my secondary is at Sloan. I can't speak as to any comparison between Sloan and Sinai, because so far I've done a transplant at only one of these institutions, but luckily you are asking for overall experience and not for comparison. That is easier to comment on.
I was relatively happy with the service I receive at Mt. Sinai. My main complaint was regarding the food, but I understand that now they have remedied that. The personnel was very accommodating and helpful. For example, if the patient asks, they will schedule blood work so that you are not waking up at midnight every night. Little things like this could mean a lot when you are in the hospital for 20-30 days like I was. They have a significant number of specialists on staff that do regular visits. If you need a dermatologist, for example, you get a dermatologist without having to wait for days. For auto patients, there are also individual suites with television sets and so on.
That said, I am sure Sloan offers a top notch auto transplant service as well. In fact, I plan on using Sloan for an allo when the time comes.
All of this said, for an auto, I believe that you can't go wrong with either Sinai or Sloan. If you have more specific questions, maybe I can answer if you message me personally.
Good luck.
Welcome. I did my auto at Mt. Sinai. My primary myeloma doc is with Mt. Sinai and my secondary is at Sloan. I can't speak as to any comparison between Sloan and Sinai, because so far I've done a transplant at only one of these institutions, but luckily you are asking for overall experience and not for comparison. That is easier to comment on.
I was relatively happy with the service I receive at Mt. Sinai. My main complaint was regarding the food, but I understand that now they have remedied that. The personnel was very accommodating and helpful. For example, if the patient asks, they will schedule blood work so that you are not waking up at midnight every night. Little things like this could mean a lot when you are in the hospital for 20-30 days like I was. They have a significant number of specialists on staff that do regular visits. If you need a dermatologist, for example, you get a dermatologist without having to wait for days. For auto patients, there are also individual suites with television sets and so on.
That said, I am sure Sloan offers a top notch auto transplant service as well. In fact, I plan on using Sloan for an allo when the time comes.
All of this said, for an auto, I believe that you can't go wrong with either Sinai or Sloan. If you have more specific questions, maybe I can answer if you message me personally.
Good luck.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Autologous stem cell transplant at Mount Sinai
Hi Yossi,
As Multibilly said, welcome to the Myeloma Beacon. You'll find a lot of good information here.
I am getting treated at Memorial Sloan Kettering. I'm very pleased with the care and treatment I've gotten there. My treatment has been successful in getting me into stringent complete response and minimal residual disease negative categories. (I won't try to explain those to you at this point, but being in both of those is a very good thing!). So I second Mutlibilly's suggestion about your possibly getting a second opinion at MSKCC, if it is in network for your father with his insurance.
Stephen Kramer, a former monthly columnist for the Beacon, was treated at Mt. Sinai, so you might be interested in checking out some of his columns.
Best wishes to you, your father, and the rest of your family. Please keep us posted on how your father's treatment goes.
Mike
As Multibilly said, welcome to the Myeloma Beacon. You'll find a lot of good information here.
I am getting treated at Memorial Sloan Kettering. I'm very pleased with the care and treatment I've gotten there. My treatment has been successful in getting me into stringent complete response and minimal residual disease negative categories. (I won't try to explain those to you at this point, but being in both of those is a very good thing!). So I second Mutlibilly's suggestion about your possibly getting a second opinion at MSKCC, if it is in network for your father with his insurance.
Stephen Kramer, a former monthly columnist for the Beacon, was treated at Mt. Sinai, so you might be interested in checking out some of his columns.
Best wishes to you, your father, and the rest of your family. Please keep us posted on how your father's treatment goes.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Autologous stem cell transplant at Mount Sinai
ivanm, mikeb -- thanks very much for offering your perspectives and your support.
Re: Autologous stem cell transplant at Mount Sinai
I guess one other thing I'm curious about ...
Obviously, how you're treated by the staff and what your general experience is like during an extended hospital stay is of crucial importance.
But, beyond that, do different centers take different approaches to the implementation of the actual treatment? Do some centers do a "better" job than others -- that is, tend to yield more successful outcomes than others?
Thanks,
Yossi
Obviously, how you're treated by the staff and what your general experience is like during an extended hospital stay is of crucial importance.
But, beyond that, do different centers take different approaches to the implementation of the actual treatment? Do some centers do a "better" job than others -- that is, tend to yield more successful outcomes than others?
Thanks,
Yossi
Re: Autologous stem cell transplant at Mount Sinai
Just about anywhere a myeloma patient will have an autologous transplant done, the treatment part of the process is the same. It's high-dose melphalan, and there really isn't variation in terms of the dosing and timing of when the drug is administered during the process. There are often differences in other parts of the process, but the actual drug that's administered, and how much of it is given, is fairly standard.
As for treating myeloma more broadly – beyond just transplantation – there are different approaches, including what treatments are used upfront, whether or not to do a transplant early or later in the treatment process, whether or not to do maintenance therapy, etc. You don't see as much variation in treatment practice in countries other than the U.S., because there typically are guidelines that keep treatment the same for most patients for at least the first couple treatments patients get. But, in the U.S., there is variation from doctor to doctor and from treatment center to treatment center in how myeloma is treated. You see that variation mainly because, when it comes to a lot of key issues related to the treatment of myeloma, there are more questions than answers.
Is it better for a newly diagnosed patient to get a transplant early in their treatment, or after their first relapse? We don't know yet.
Is it better to give all myeloma patients very intensive, multi-drug therapy as part of their first-line treatment, or should treatment be tailored based, for example, on the sort of chromosomal abnormalities the patient has? We don't know because there are no data that allow for accurate comparisons of the two approaches (and there certainly hasn't been a clinical trial comparing the two approaches).
So what your father has to do, first of all, is make sure he's being seen by a myeloma specialist. This is important because a myeloma specialist will be current on all the latest studies and also will have access to clinical trials that might be relevant.
It looks like your father is already planning on doing this, so that's not an issue.
Beyond that, probably the next step is for your father to decide whether he's comfortable with the approach his myeloma specialist recommends to him. Does the approach mesh with his personal preferences? Does it seem to be based enough on his particular circumstances?
As for treating myeloma more broadly – beyond just transplantation – there are different approaches, including what treatments are used upfront, whether or not to do a transplant early or later in the treatment process, whether or not to do maintenance therapy, etc. You don't see as much variation in treatment practice in countries other than the U.S., because there typically are guidelines that keep treatment the same for most patients for at least the first couple treatments patients get. But, in the U.S., there is variation from doctor to doctor and from treatment center to treatment center in how myeloma is treated. You see that variation mainly because, when it comes to a lot of key issues related to the treatment of myeloma, there are more questions than answers.
Is it better for a newly diagnosed patient to get a transplant early in their treatment, or after their first relapse? We don't know yet.
Is it better to give all myeloma patients very intensive, multi-drug therapy as part of their first-line treatment, or should treatment be tailored based, for example, on the sort of chromosomal abnormalities the patient has? We don't know because there are no data that allow for accurate comparisons of the two approaches (and there certainly hasn't been a clinical trial comparing the two approaches).
So what your father has to do, first of all, is make sure he's being seen by a myeloma specialist. This is important because a myeloma specialist will be current on all the latest studies and also will have access to clinical trials that might be relevant.
It looks like your father is already planning on doing this, so that's not an issue.
Beyond that, probably the next step is for your father to decide whether he's comfortable with the approach his myeloma specialist recommends to him. Does the approach mesh with his personal preferences? Does it seem to be based enough on his particular circumstances?
Re: Autologous stem cell transplant at Mount Sinai
Hi again Yossi,
Just one thing to add to what Ian said. Regarding the stem cell transplant procedure specifically - some treatment centers will let you do the procedure as an outpatient, while others require you to be inpatient. I think you'll see descriptions of what it was like for folks from both approaches here at the Beacon.
At MSKCC, where I had my SCT, my understanding is that they had recently started to let some patients go the outpatient route when I had my transplant in May 2013. Because I was in a clinical trial, I needed to do mine as an inpatient since the trial protocol specified that. I'm not sure what the policy is at Mt. Sinai. And, of course, there are pros and cons both ways to doing it either inpatient or outpatient.
Mike
Just one thing to add to what Ian said. Regarding the stem cell transplant procedure specifically - some treatment centers will let you do the procedure as an outpatient, while others require you to be inpatient. I think you'll see descriptions of what it was like for folks from both approaches here at the Beacon.
At MSKCC, where I had my SCT, my understanding is that they had recently started to let some patients go the outpatient route when I had my transplant in May 2013. Because I was in a clinical trial, I needed to do mine as an inpatient since the trial protocol specified that. I'm not sure what the policy is at Mt. Sinai. And, of course, there are pros and cons both ways to doing it either inpatient or outpatient.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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