The videos for Tom Brokaw's appearance on "The Daily Show with Jon Stewart" is now available. Here it is:
(You can also view it at this page at the Daily Show website.)
Forums
Re: Tom Brokaw diagnosed with multiple myeloma
We haven't mentioned anything about this until now, but it's perhaps worth saying that we have no control over the advertisements that are shown with the videos we've been including in this thread. Also, we receive no financial benefit from them. They are advertisements arranged for by, and for the benefit of, the different programs shown in the videos.
Re: Tom Brokaw diagnosed with multiple myeloma
We hadn't seen this until now, but Tom Brokaw also did a detailed interview with Charlie Rose ten days ago. Here's the video for that interview.
(You can also view it at the Charlie Rose show website.)
(You can also view it at the Charlie Rose show website.)
Re: Tom Brokaw diagnosed with multiple myeloma
FYI,
Tom Brokaw and his daughter Jennifer Brokaw, who is an emergency physician, will be speaking at Chautauqua Institution in New York on August 27th. My Mom and I are planning on going ... unless I'm having an allo transplant right then.
http://ciweb.org/calendar-month/eventdetail/3290/-/an-evening-with-tom-and-jennifer-brokaw
Tracy
Tom Brokaw and his daughter Jennifer Brokaw, who is an emergency physician, will be speaking at Chautauqua Institution in New York on August 27th. My Mom and I are planning on going ... unless I'm having an allo transplant right then.
http://ciweb.org/calendar-month/eventdetail/3290/-/an-evening-with-tom-and-jennifer-brokaw
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Tom Brokaw diagnosed with multiple myeloma
Tracy,
Lucky you! That would be fun to see him speak.
Regarding the earlier discussion on how he ought to lead his life, I can't think of a better way to go than to be traveling overseas on a bike ride on the way to my favorite fishing hole ... regardless of what shape my poor body is in at the time
Lucky you! That would be fun to see him speak.
Regarding the earlier discussion on how he ought to lead his life, I can't think of a better way to go than to be traveling overseas on a bike ride on the way to my favorite fishing hole ... regardless of what shape my poor body is in at the time
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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
JPC wrote:
My GF just bought his book. I will start reading it soon. I suspect, too, from seeing the Beacon on his TV episode, and from what you said about the book, that he has probably been reading the Beacon (and likely many of the other myeloma-focused web sites out there) like the rest of us. I can understand why, to the best of my knowledge, he has not posted to any of these forums using his real identity. It could lead to a lot of problems. It could bring a lot of unhelpful media attention, more attention than he would like focused on him, people who have an ax to grind with him on off-topic issues posting, people faking post under his identity, etc.
Then again, maybe not, but maybe he just does not want to risk the potential downside it might bring.
I think that, for the parts of the book where he addressed his multiple myeloma experience, it was very, very honest. His experience is just as valid as anyone else's. Although he has not contributed to the forum (as far as we know), he has participated in the forum from reading it, as observed in the book and the television documentary. I have a hard time grasping why individuals would denigrate his multiple myeloma experience.
My GF just bought his book. I will start reading it soon. I suspect, too, from seeing the Beacon on his TV episode, and from what you said about the book, that he has probably been reading the Beacon (and likely many of the other myeloma-focused web sites out there) like the rest of us. I can understand why, to the best of my knowledge, he has not posted to any of these forums using his real identity. It could lead to a lot of problems. It could bring a lot of unhelpful media attention, more attention than he would like focused on him, people who have an ax to grind with him on off-topic issues posting, people faking post under his identity, etc.
Then again, maybe not, but maybe he just does not want to risk the potential downside it might bring.
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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 don't want to invade Mr. Brokaw's privacy, but after reading more entries here and articles than I have patience for, I still do not know what type of multiple myeloma he had and why, if he is in remission, he has to continue on chemotherapy. I also do not know what he means by saying, "I have one marker down to go." As he is providing a good deal of information, perhaps he can tell us this as well.
My diagnosis was made eight years and three months ago. (I was misdiagnosed for a year.) I have gone through various chemotherapies, plus radiation and vertebrolasties for fractures at 3 levels of my spine; I have not had transplantation, which the "oncology panel" said I was too old and too Ill to be a candidate for.
Recently, my oncologist admitted that when he first saw me and did bone marrow biopsies and a bone scan – which lit up like a Christmas tree – my myeloma was pretty far advanced and he did not expect me to survive. But I did. My "key marker," the M-protein test, has been stable at 0.4 for seven months. My oncologist said this puts me into what is called "stable condition;" He said it is not really remission, although some like to call it that. The marker needs to be at 0.0 before he will consider it remission. (Is this the same marker Mr. Brokaw was referring to?)
I am on a chemotherapy regimen of Pomalyst (21 days on, 7 days off) and Decadron (every ghastly Wednesday), with Zometa (replacing Aredia starting this month) every for months.
David
My diagnosis was made eight years and three months ago. (I was misdiagnosed for a year.) I have gone through various chemotherapies, plus radiation and vertebrolasties for fractures at 3 levels of my spine; I have not had transplantation, which the "oncology panel" said I was too old and too Ill to be a candidate for.
Recently, my oncologist admitted that when he first saw me and did bone marrow biopsies and a bone scan – which lit up like a Christmas tree – my myeloma was pretty far advanced and he did not expect me to survive. But I did. My "key marker," the M-protein test, has been stable at 0.4 for seven months. My oncologist said this puts me into what is called "stable condition;" He said it is not really remission, although some like to call it that. The marker needs to be at 0.0 before he will consider it remission. (Is this the same marker Mr. Brokaw was referring to?)
I am on a chemotherapy regimen of Pomalyst (21 days on, 7 days off) and Decadron (every ghastly Wednesday), with Zometa (replacing Aredia starting this month) every for months.
David
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davidincalif - Name: David
- When were you/they diagnosed?: Feb 2007
- Age at diagnosis: 67
Re: Tom Brokaw diagnosed with multiple myeloma
Tom chose a path that I chose – a drug only procedure. Induction type therapy to drive the multiple myeloma into a remissive state then continues with a reduced cocktail as maintenance.
I like to use the term "remissive state" as opposed to "remission." In my case, and I suspect in Tom's case, the multiple myeloma is at a very low level but is still present. So it is not a true remission, which I would define as no trace of it in any of the tests. Even with people who have an ASCT, maintenance still appears to be recommended, usually with Revlimid and often with Revlimid and dex. So maintenance now appears to becoming the new follow-up protocol even though there is no solid proof that it extends life.
Tom was prescribed Revlimid twice a day. He did not say at what level (5 mg, 10 mg or 25 mg). That is a bit different – most people only take Revlimid once a day, on 21 then off 7. Why twice a day would be interesting info.
I am in the process of reading his book, so I don't know if he goes into the level of detail if has IgG, IgA, whether he has excess kappa or lambda light chains, or if he had any chromosome deletions. I gathered that he does not have light chain only multiple myeloma, since his book and the program made reference to an M spike.
That type of info would not be of much use to the general population, who really have never heard of multiple myeloma, let alone the sub types of the disease. So I suspect he decided not to go down that road and possibly risk boring the general public that he is trying to communicate with. We of course, as patients, would love to know more details so we can compare his experience to our own. However, we are like policy wonks and that is not who he is targeting with this book.
I like to use the term "remissive state" as opposed to "remission." In my case, and I suspect in Tom's case, the multiple myeloma is at a very low level but is still present. So it is not a true remission, which I would define as no trace of it in any of the tests. Even with people who have an ASCT, maintenance still appears to be recommended, usually with Revlimid and often with Revlimid and dex. So maintenance now appears to becoming the new follow-up protocol even though there is no solid proof that it extends life.
Tom was prescribed Revlimid twice a day. He did not say at what level (5 mg, 10 mg or 25 mg). That is a bit different – most people only take Revlimid once a day, on 21 then off 7. Why twice a day would be interesting info.
I am in the process of reading his book, so I don't know if he goes into the level of detail if has IgG, IgA, whether he has excess kappa or lambda light chains, or if he had any chromosome deletions. I gathered that he does not have light chain only multiple myeloma, since his book and the program made reference to an M spike.
That type of info would not be of much use to the general population, who really have never heard of multiple myeloma, let alone the sub types of the disease. So I suspect he decided not to go down that road and possibly risk boring the general public that he is trying to communicate with. We of course, as patients, would love to know more details so we can compare his experience to our own. However, we are like policy wonks and that is not who he is targeting with this book.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Tom Brokaw diagnosed with multiple myeloma
Ron:
Methinks, Tom was (wisely) advised to skip the exact details of his particular multiple myeloma Scenario.
Writing rule #1--who is your audience? Joe Public.
Too many issues bound up in the details of this / his disease--such that the overall message would be lost.
I talked with a Judge today about my disease. I have shared many details with this person over the past 3 years. He is interested due to an ill father in-law. He is also wise--having survived a bout with Prostate cancer, hisself.
Any way, he inevitably asks some really pretty dumb questions, that I have to politely refer him back to the basics of Hematology and Oncology--much less the fine nuances of multiple myeloma and it's treatments. (Why do people become anemic ? Why do they have so many white cells? Why do they get sick ? Why are your/ his bones dissolving ?)
I realize that multiple myeloma has a pretty hard "Learning curve" to climb.
I, like many others here, often take my 3 year crash course for granted.
When MD's say "you know a bit about this disease"..you can believe them. We do.
The Public is generally clueless.
I'm not obnoxious about this--as I know next to nothing about Large scale Nuclear Fission.
I don't think Tom wants to write a book for multiple myeloma'rs, as they prolly know as much, or more, than he.
Multiple Myeloma is a VERY specialized and variable Cancer, that I have to confess, I knew little about before my own Diagnosis.
Tom purposely wanted to keep the "BIO-MARKER TOM" out of the tome, as he would lose his audience.
I have a pretty good idea what he has-- ( Low risk/Std Risk Disease--amenable to Velcade/Dex/etc in Induction--with Revlimid as maintenance ) (10/10 mgs-day--now down to 10 mgs/ day)--and zometa.
I guess I don't need to read his complete bio-markers to have an appreciation for his disease and the difficulties he has had / will encounter.
I think he does a good job on--SUDDEN PAIN, FUNCTIONAL LIMITATION, SURGERY, DRUGS, MORE DRUGS, ETC, WEAKNESS and FATIGUE and a TIREDNESS THAT DOESN'T EVER GO AWAY. AND NO CURE. AND DEATH. AND I NEVER SAW IT COMING....
The public can absorb some of that.
PS--I take Revlimid -10 mgs/daily /365 days a year ( until my labs dictate otherwise). It's working so far.
Methinks, Tom was (wisely) advised to skip the exact details of his particular multiple myeloma Scenario.
Writing rule #1--who is your audience? Joe Public.
Too many issues bound up in the details of this / his disease--such that the overall message would be lost.
I talked with a Judge today about my disease. I have shared many details with this person over the past 3 years. He is interested due to an ill father in-law. He is also wise--having survived a bout with Prostate cancer, hisself.
Any way, he inevitably asks some really pretty dumb questions, that I have to politely refer him back to the basics of Hematology and Oncology--much less the fine nuances of multiple myeloma and it's treatments. (Why do people become anemic ? Why do they have so many white cells? Why do they get sick ? Why are your/ his bones dissolving ?)
I realize that multiple myeloma has a pretty hard "Learning curve" to climb.
I, like many others here, often take my 3 year crash course for granted.
When MD's say "you know a bit about this disease"..you can believe them. We do.
The Public is generally clueless.
I'm not obnoxious about this--as I know next to nothing about Large scale Nuclear Fission.
I don't think Tom wants to write a book for multiple myeloma'rs, as they prolly know as much, or more, than he.
Multiple Myeloma is a VERY specialized and variable Cancer, that I have to confess, I knew little about before my own Diagnosis.
Tom purposely wanted to keep the "BIO-MARKER TOM" out of the tome, as he would lose his audience.
I have a pretty good idea what he has-- ( Low risk/Std Risk Disease--amenable to Velcade/Dex/etc in Induction--with Revlimid as maintenance ) (10/10 mgs-day--now down to 10 mgs/ day)--and zometa.
I guess I don't need to read his complete bio-markers to have an appreciation for his disease and the difficulties he has had / will encounter.
I think he does a good job on--SUDDEN PAIN, FUNCTIONAL LIMITATION, SURGERY, DRUGS, MORE DRUGS, ETC, WEAKNESS and FATIGUE and a TIREDNESS THAT DOESN'T EVER GO AWAY. AND NO CURE. AND DEATH. AND I NEVER SAW IT COMING....
The public can absorb some of that.
PS--I take Revlimid -10 mgs/daily /365 days a year ( until my labs dictate otherwise). It's working so far.
-
Rneb
Re: Tom Brokaw diagnosed with multiple myeloma
I was diagnosed 5 years ago but have had this possibly 7. Many bones tumors and holes in my skull. chromosome 13 and 80% plasma cells was the diagnosis.
I was on same meds as Tom (Revlimid, Velcade, and dex) but, after two months, wanted off one so I could get to my grandson's games. I was on 160 mg of dex a WEEK and flying fatigue! Refused stem cell for personal reasons, and asked my oncologist to reduce my treatments as bone marrows looked good. Third chemo, when light-chain numbers were 168, Pomalyst, did wonders for my numbers, but I ended up with bi-lateral pneumonia and leg and chest blood clots.
I was on chemo for 41/2 years straight until now ... post hospital. Just waiting for things to change, but I am a casual myeloma patient. Bone pain and neuropathy is constant now, but ballgames are more important. Dislike pain meds. and not knowing the duration of this disease for me, I tend to be conservative. My Mom died from multiple myeloma when she was 65. I am 73 but guess Ig can be transferred in the placenta?
Bless all you who are struggling with this disease as there are so many issues to deal with besides the cancer itself.
I was on same meds as Tom (Revlimid, Velcade, and dex) but, after two months, wanted off one so I could get to my grandson's games. I was on 160 mg of dex a WEEK and flying fatigue! Refused stem cell for personal reasons, and asked my oncologist to reduce my treatments as bone marrows looked good. Third chemo, when light-chain numbers were 168, Pomalyst, did wonders for my numbers, but I ended up with bi-lateral pneumonia and leg and chest blood clots.
I was on chemo for 41/2 years straight until now ... post hospital. Just waiting for things to change, but I am a casual myeloma patient. Bone pain and neuropathy is constant now, but ballgames are more important. Dislike pain meds. and not knowing the duration of this disease for me, I tend to be conservative. My Mom died from multiple myeloma when she was 65. I am 73 but guess Ig can be transferred in the placenta?
Bless all you who are struggling with this disease as there are so many issues to deal with besides the cancer itself.
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bmrazz1