Thank you for attaching that link, Multibilly. My sister sent me an email about the Dateline show and I knew it was on, but it was a bit too painful for my hubby to watch, so we missed most of it. I appreciated the link - I could watch the entire show today.
I really liked the show. The name reflected how upbeat he was: "A Lucky Life, Interrupted." Tom did not make his situation overly melodramatic, but I could relate to much of his story. I could relate to drawing closer to family, to how shocked he was to have less energy, to get sick so easily and have the flu be life threatening.
I could relate to the time when he could not think of anything except his cancer – and when he went to meet the veterans, and realized that he was lucky to have lived as long as he had.
Cathy
Forums
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Tom Brokaw diagnosed with multiple myeloma
Did anyone else catch the part when he asked his primary doctor how he decided to do further tests? And then his PCP said "because he had a low white count ..."
I was very surprised to hear that because a low WBC was my ONLY symptom for years. Yet I still get doctors telling me that would not have been from multiple myeloma. Why not?
I was very surprised to hear that because a low WBC was my ONLY symptom for years. Yet I still get doctors telling me that would not have been from multiple myeloma. Why not?
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heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
Re: Tom Brokaw diagnosed with multiple myeloma
Catherine,
Maybe we will find out more about his entire transplant decision in his book, which I am curious about as well. The way I see it, he only had 40 minutes to cover a lot of ground in a human-interest story intended for the masses on prime-time TV. There's only so many topics that can be covered in that short period of time.
I'm on the waiting list at my library to get his book next week.
Maybe we will find out more about his entire transplant decision in his book, which I am curious about as well. The way I see it, he only had 40 minutes to cover a lot of ground in a human-interest story intended for the masses on prime-time TV. There's only so many topics that can be covered in that short period of time.
I'm on the waiting list at my library to get his book next week.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tom Brokaw diagnosed with multiple myeloma
Hi all,
The show was a bit more personal for me than I had expected. I'm being treated at Memorial Sloan Kettering too, and Dr. Landau was my stem cell transplant doctor.
What made the biggest impression on me from the program was his emphasis on the importance of family. One person in the family having cancer affects, and changes the lives of, everyone else in the family. And he talked a lot about how fortunate he is to have a strong, supportive family that has rallied around him and around each other.
Sean Murray's recent Beacon column on bravery ("Too Brave To Cry") was a real thought-provoker for me. I think the people who stand up and tell their cancer stories are exhibiting a form of bravery, because there is a choice involved.
Through this show and his book, Mr. Brokaw is attempting to improve the public's understanding of what it is like to have cancer and also to raise awareness about multiple myeloma. To me, he is exhibiting his bravery, and I salute him and wish him and his family well.
Mike
The show was a bit more personal for me than I had expected. I'm being treated at Memorial Sloan Kettering too, and Dr. Landau was my stem cell transplant doctor.
What made the biggest impression on me from the program was his emphasis on the importance of family. One person in the family having cancer affects, and changes the lives of, everyone else in the family. And he talked a lot about how fortunate he is to have a strong, supportive family that has rallied around him and around each other.
Sean Murray's recent Beacon column on bravery ("Too Brave To Cry") was a real thought-provoker for me. I think the people who stand up and tell their cancer stories are exhibiting a form of bravery, because there is a choice involved.
Through this show and his book, Mr. Brokaw is attempting to improve the public's understanding of what it is like to have cancer and also to raise awareness about multiple myeloma. To me, he is exhibiting his bravery, and I salute him and wish him and his family well.
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: Tom Brokaw diagnosed with multiple myeloma
I watched the show last night and, to me, it seems a lot of thought went into putting this together and what to put into it. It was clear to me that Tom is not doing this to get back into the media spotlight and market himself as some sort of reality TV star like the Kardashians, who I do not doubt would do such a thing in similar circumstances. I do not know Tom on any level outside of what I see in the media, but that simply does not seem the kind of person he is to do such a thing.
He also took time to acknowledge he is not the first person of fame to get myeloma – there have been many before him and there will be many after him. Myeloma is not going to become “Tom’s disease," and I do not believe he wants that to happen. Money from a book? I seriously doubt that is any part of his motivation. He does not need it. He went quite some time keeping quiet and low key about his illness. As he said, he – like many others – did not want myeloma to define who he is. He had ample opportunity to promote himself and his difficult circumstance some years ago early in his treatment, but did not. Remember the part where he asked to be pre-seated on the Daily Show, so the back pain would not be evident and hid from John Stewart just how bad he was doing at that point in time?
But now he feels differently and has decided to come forward, and it makes sense to me. After a few years into his myeloma journey, now he, like many Beacon writers and contributors, has a story to tell about his experience that can be beneficial and helpful to those who unfortunately may just be starting down this road.
As many have already said, his experiences with myeloma is very similar to mine. I cringed when he had the sudden onset of back pain just a few days after being told of his diagnosis like I did. But I was not way out in the Montana wilderness. That had to have been a tough spot to be in.
I like how he focused a lot on how this affected his family and caregivers, including his doctors and the nurses who treated him, as this is an important part of myeloma journey or any other challenging illness. There was a moment when I thought he was really holding back from losing it on camera during these interviews. He, like most of us, is keenly aware that having this disease is not all about us. There were parts where the scene would cut to him sitting in an office where he would look into the camera and speak of some lesson he learned as if he were speaking directly to the people and their caregivers who may just be starting down a similar path, and I believe he was.
I cannot recall anything he said I would disagree with. He seemed to be on the mark with everything he said. He addressed that he was fortunate enough to have the resources to have access to the best medical care and specialists, which tend to be in major metropolitan areas while others – especially in rural areas – are not as fortunate. He does not seem to have forgotten his roots in South Dakota.
Another lesson that was on the mark and frequently brought up in the Beacon was having a caregiver or someone who can help manage everything that needs to be done. His statement he made that, unlike with something like building a house, there is no contractor to hire to manage what needs to get done, and that can be a big problem for many people, I find to be true. I see this with elderly people trying to work their way through the complicated medical and insurance system we have with no one to help them. It is a real problem. Tom did not have the answers or a solution, but he sees the problem.
While as a someone with myeloma I am also keenly interested in what he has done for his treatment, he did not go too much into the details of that and it makes sense to me he did not. That would be focusing too much on him and his specific treatment, and those really are not important details to include in the hour he had to communicate the lessons learned from his cancer experience he wanted to convey with others in similar circumstances.
I also like how this did not turn into an infomercial for the pharmaceutical companies. Yes, there was mention of the drugs he took, but not much more than that. I do not remember seeing commercials from myeloma pharmaceutical companies; maybe this was intentional? He also took time to include the MMRF and what they have done in the fight against myeloma, and the placement of the screen shots of the Myeloma Beacon was not accidental.
It seems to me that this was Tom’s way of reaching out and contributing back, helping those who are starting down or are already in a similar cancer journey or experience. The target audience for the Dateline episode seemed to be those in similar circumstances and their caregivers – those who were not probably watching something else that night. I suspect this Dateline episode will be recommended to the newly diagnosed for quite some time.
He also took time to acknowledge he is not the first person of fame to get myeloma – there have been many before him and there will be many after him. Myeloma is not going to become “Tom’s disease," and I do not believe he wants that to happen. Money from a book? I seriously doubt that is any part of his motivation. He does not need it. He went quite some time keeping quiet and low key about his illness. As he said, he – like many others – did not want myeloma to define who he is. He had ample opportunity to promote himself and his difficult circumstance some years ago early in his treatment, but did not. Remember the part where he asked to be pre-seated on the Daily Show, so the back pain would not be evident and hid from John Stewart just how bad he was doing at that point in time?
But now he feels differently and has decided to come forward, and it makes sense to me. After a few years into his myeloma journey, now he, like many Beacon writers and contributors, has a story to tell about his experience that can be beneficial and helpful to those who unfortunately may just be starting down this road.
As many have already said, his experiences with myeloma is very similar to mine. I cringed when he had the sudden onset of back pain just a few days after being told of his diagnosis like I did. But I was not way out in the Montana wilderness. That had to have been a tough spot to be in.
I like how he focused a lot on how this affected his family and caregivers, including his doctors and the nurses who treated him, as this is an important part of myeloma journey or any other challenging illness. There was a moment when I thought he was really holding back from losing it on camera during these interviews. He, like most of us, is keenly aware that having this disease is not all about us. There were parts where the scene would cut to him sitting in an office where he would look into the camera and speak of some lesson he learned as if he were speaking directly to the people and their caregivers who may just be starting down a similar path, and I believe he was.
I cannot recall anything he said I would disagree with. He seemed to be on the mark with everything he said. He addressed that he was fortunate enough to have the resources to have access to the best medical care and specialists, which tend to be in major metropolitan areas while others – especially in rural areas – are not as fortunate. He does not seem to have forgotten his roots in South Dakota.
Another lesson that was on the mark and frequently brought up in the Beacon was having a caregiver or someone who can help manage everything that needs to be done. His statement he made that, unlike with something like building a house, there is no contractor to hire to manage what needs to get done, and that can be a big problem for many people, I find to be true. I see this with elderly people trying to work their way through the complicated medical and insurance system we have with no one to help them. It is a real problem. Tom did not have the answers or a solution, but he sees the problem.
While as a someone with myeloma I am also keenly interested in what he has done for his treatment, he did not go too much into the details of that and it makes sense to me he did not. That would be focusing too much on him and his specific treatment, and those really are not important details to include in the hour he had to communicate the lessons learned from his cancer experience he wanted to convey with others in similar circumstances.
I also like how this did not turn into an infomercial for the pharmaceutical companies. Yes, there was mention of the drugs he took, but not much more than that. I do not remember seeing commercials from myeloma pharmaceutical companies; maybe this was intentional? He also took time to include the MMRF and what they have done in the fight against myeloma, and the placement of the screen shots of the Myeloma Beacon was not accidental.
It seems to me that this was Tom’s way of reaching out and contributing back, helping those who are starting down or are already in a similar cancer journey or experience. The target audience for the Dateline episode seemed to be those in similar circumstances and their caregivers – those who were not probably watching something else that night. I suspect this Dateline episode will be recommended to the newly diagnosed for quite some time.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Tom Brokaw diagnosed with multiple myeloma
I thought the show was very well done. In my opinion, there is no need to discuss individual therapy decisions for the reason Eric H mentioned (you do not want to turn the show into an ad for pharmaceutical companies), and the rest of the audience would not be able to relate to it.
The main points that I thought the show did a great job of showing were the diminished quality of life due to the nature of the disease and the therapies used, the need for a great support system, the financial resources necessary to get excellent care, and the need for a specialist that you can communicate well with.
That is great that the Beacon was shown, since it is such a great resource for patients. Congrats to Dr. Landau. A well known patient deserves a great specialist. I can tell by her replies here in the Forum that she communicates her points very well, which is a very important trait for an excellent doctor.
Mark
The main points that I thought the show did a great job of showing were the diminished quality of life due to the nature of the disease and the therapies used, the need for a great support system, the financial resources necessary to get excellent care, and the need for a specialist that you can communicate well with.
That is great that the Beacon was shown, since it is such a great resource for patients. Congrats to Dr. Landau. A well known patient deserves a great specialist. I can tell by her replies here in the Forum that she communicates her points very well, which is a very important trait for an excellent doctor.
Mark
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Mark11
Re: Tom Brokaw diagnosed with multiple myeloma
I have not yet watched the special, but plan to soon! My dad is currently at Dana-Farber recovering from his first ASCT, and he watched it.
Yesterday, a colleague of mine asked about my "vacation" (I spent last week with my dad at the hospital), and I ended up telling him about my dad and mentioned the Tom Brokaw special. My colleague was under the impression that Mr. Brokaw is cured. In fact, he INSISTED he was cured. I had to interrupt my coworker several times and then was finally able to clarify that remission and cure are not the same thing – especially in multiple myeloma.
If my colleague was left with the impression that multiple myeloma can be cured (and that Tom Brokaw is) from this program, I'm sure others are as well. I'll have to watch the program and see how they handle the topic and terms.
Clearly, there needs to be some public education on the difference between remission and cure.
Yesterday, a colleague of mine asked about my "vacation" (I spent last week with my dad at the hospital), and I ended up telling him about my dad and mentioned the Tom Brokaw special. My colleague was under the impression that Mr. Brokaw is cured. In fact, he INSISTED he was cured. I had to interrupt my coworker several times and then was finally able to clarify that remission and cure are not the same thing – especially in multiple myeloma.
If my colleague was left with the impression that multiple myeloma can be cured (and that Tom Brokaw is) from this program, I'm sure others are as well. I'll have to watch the program and see how they handle the topic and terms.
Clearly, there needs to be some public education on the difference between remission and cure.
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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: Tom Brokaw diagnosed with multiple myeloma
I watched The Tonight Show with Jimmy Fallon last night and Tom Brokaw was on. He again said he was in remission and everyone clapped. It does appear that remission in different types of cancer means different things to different people. One of the definitions of remission according to Dictionary.com is: a temporary or permanent decrease or subsidence of manifestations of a disease.
I am glad that Tom Brokaw is putting a face on multiple myeloma. It's a rare cancer that few people are familiar with. Greater awareness can lead to earlier detection, more research funding, and newer treatments being researched and approved.
I am glad that Tom Brokaw is putting a face on multiple myeloma. It's a rare cancer that few people are familiar with. Greater awareness can lead to earlier detection, more research funding, and newer treatments being researched and approved.
Re: Tom Brokaw diagnosed with multiple myeloma
This was The Tonight Show segment that Spirit referred to:
(You can also view it at this page at the NBC Tonight Show website.)
(You can also view it at this page at the NBC Tonight Show website.)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tom Brokaw diagnosed with multiple myeloma
Tom Brokaw's book came out this morning. In reading half of it, it is not only about himself but many others who have had different types of cancer, a brother with deteriorating dementia, the expense many of us have in the drugs we require, etc. He tells stories of his friends and fishing and hunting trips, but also not being able to get out of bed just to go to the bathroom. Those of us with multiple myeloma can identify with his writings, which deal with his personal fight of multiple myeloma and those that have passed away with either multiple myeloma or other forms of cancer.
I recommend the book, as it goes into more depth of his fight of multiple myeloma, treatment, and his personal stories of family, friends and colleague's that have fought the cancer fight.
Well written and anxious to read the last half of the book.
I recommend the book, as it goes into more depth of his fight of multiple myeloma, treatment, and his personal stories of family, friends and colleague's that have fought the cancer fight.
Well written and anxious to read the last half of the book.
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chad