Hi everyone,
My dad was just diagnosed, and my parents are looking for their second opinion and need to decide on a hospital. My dad is undergoing further testing this week to determine the stage, but we do know it is neither very early or very late in the game. His current oncologist (who treated my aunt who had breast cancer, so not specifically myeloma, which is why they're looking) recommended taking stem cells every week right away to freeze for future use, and get started knocking out what they can right away.
In the meantime, we live in Hartford County, CT. We've got a number of friends and family researching to find the best multiple myeloma doctors, but you would know best. We figure we can choose between Dana-Farber in Boston and Sloan-Kettering in NY. Sloan-Kettering has the advantage of having a new partnership with Hartford Healthcare Cancer Institute - they're calling it an alliance - but only if the doctor there is the best for my dad.
Please post if you know of any great doctors at either of these hospitals. I so appreciate it. This website has already proven to be so helpful to me in understanding what's happening without too much of a mental breakdown.
Best,
Britt
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9 posts
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: Dad just diagnosed - doctor / hospital recommendations?
My dad goes to Hackensack Hospital in northern New Jersey. Dr. David Siegel and Dr. Vesole are absolutely wonderful. My dad is going 6 years and I can't say enough about them.
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Jersey
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: Dad just diagnosed - doctor / hospital recommendations?
Hi Britt,
Both Sloan-Kettering and Dana-Farber have excellent teams of myeloma specialists. There are world class specialists at both centers, so you really can't go wrong in this case.
Both Sloan-Kettering and Dana-Farber have excellent teams of myeloma specialists. There are world class specialists at both centers, so you really can't go wrong in this case.
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JimNY
Re: Dad just diagnosed - doctor / hospital recommendations?
Hi Britt,
First of all, I'm sorry to hear about your father's diagnosis. However, you've come to a good source for information here at the Myeloma Beacon. A lot of what you may read on the web may be scary and discouraging. However, it's important to keep in mind that most of the survival stats you will see quoted on the web are out of date. There are a lot of reasons for optimism because of important research discoveries that are coming along at a very fast rate.
Second, all of the myeloma facilities mentioned in this thread are good. You are wise to go to a center like any of these three where your father will be treated by someone who specializes in multiple myeloma. I am being treated at Memorial Sloan Kettering, have had an excellent response to the treatment I've received, and have been very pleased with all of the care I've received there.
Finally, I may be misunderstanding part of your post, but stem cell collection is a one-time process, not something that is done weekly. It might take several sessions over the course of a week to collect the necessary number of stem cells, though. And before stem cells are collected, the patient usually goes through several cycles of induction chemotherapy, with the goal of substantially reducing the number of myeloma cells present in the bone marrow (and hopefully achieving some level of response/remission) first.
Best wishes to your father and to you. Please keep us posted on how things go for your father.
Mike
First of all, I'm sorry to hear about your father's diagnosis. However, you've come to a good source for information here at the Myeloma Beacon. A lot of what you may read on the web may be scary and discouraging. However, it's important to keep in mind that most of the survival stats you will see quoted on the web are out of date. There are a lot of reasons for optimism because of important research discoveries that are coming along at a very fast rate.
Second, all of the myeloma facilities mentioned in this thread are good. You are wise to go to a center like any of these three where your father will be treated by someone who specializes in multiple myeloma. I am being treated at Memorial Sloan Kettering, have had an excellent response to the treatment I've received, and have been very pleased with all of the care I've received there.
Finally, I may be misunderstanding part of your post, but stem cell collection is a one-time process, not something that is done weekly. It might take several sessions over the course of a week to collect the necessary number of stem cells, though. And before stem cells are collected, the patient usually goes through several cycles of induction chemotherapy, with the goal of substantially reducing the number of myeloma cells present in the bone marrow (and hopefully achieving some level of response/remission) first.
Best wishes to your father and to you. Please keep us posted on how things go for your father.
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: Dad just diagnosed - doctor / hospital recommendations?
Thank you so much everyone. My family has decided on Dana-Farber and I will be accompanying my parents next week to talk to the specialist and get further clarification on the treatment plan. The good news is that my dad is otherwise in excellent health for his age, and even though the myeloma he has is aggressive, it has not yet damaged his bones or vital organs. Now we just pray he responds extremely well to treatment. Will keep you posted.
As always, thank you for your incredible support!
-Britt
As always, thank you for your incredible support!
-Britt
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: Dad just diagnosed - doctor / hospital recommendations?
Mike - Yesterday I read the MMRF website - seems to be the reason for the faster R&D to market of new treatments and therapies, and it's based right here in CT! I just hope they keep going at the same pace or faster and come up with better and better options. Please keep the optimism coming! It is not easy for me.
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: Dad just diagnosed - doctor / hospital recommendations?
Hi Britt,
Your dad will certainly get excellent care at Dana Farber.
The MMRF does good work, but they toot their own horn a little bit too much for my taste sometimes.
According to my local oncologist (and his theory makes a lot of sense to me), the main reason for the current fast pace of research is that multiple myeloma is a cancer that people now tend to live with for years and we need long-term treatment (chemo agents) during those years. So there is a ton of money for the phama companies to make if they can develop new "hit" drugs. Lenalidomide (Revlimid) is an example. Many of us are taking it for years during maintenance therapy, and the list price for it is over $100K/year. I don't know of anyone who pays that price, but the cost to patients can still be substantial depending on your insurance coverage.
For new multiple myeloma patients and caregivers, in addition to the Myeloma Beacon, the International Myeloma Foundation is a good source for information. Their Patient Handbook (http://myeloma.org/pdfs/Patient_Handbook_2013.pdf) is an especially helpful thing to read for an overview.
Again, best wishes and please keep us posted on your father's progress.
Mike
Your dad will certainly get excellent care at Dana Farber.
The MMRF does good work, but they toot their own horn a little bit too much for my taste sometimes.
According to my local oncologist (and his theory makes a lot of sense to me), the main reason for the current fast pace of research is that multiple myeloma is a cancer that people now tend to live with for years and we need long-term treatment (chemo agents) during those years. So there is a ton of money for the phama companies to make if they can develop new "hit" drugs. Lenalidomide (Revlimid) is an example. Many of us are taking it for years during maintenance therapy, and the list price for it is over $100K/year. I don't know of anyone who pays that price, but the cost to patients can still be substantial depending on your insurance coverage.
For new multiple myeloma patients and caregivers, in addition to the Myeloma Beacon, the International Myeloma Foundation is a good source for information. Their Patient Handbook (http://myeloma.org/pdfs/Patient_Handbook_2013.pdf) is an especially helpful thing to read for an overview.
Again, best wishes and please keep us posted on your father's progress.
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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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
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