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Re: Tom Brokaw diagnosed with multiple myeloma
He's starting to look like George Burns, especially in Profile view.
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Rneb
Re: Tom Brokaw diagnosed with multiple myeloma
OK, I'd like to echo all the positives that so many others have already mentioned. And I, too, wish he had been more specific on his treatments, but I also understand why he wasn't.
I was also hoping that someone else in the Forum would ask this question so that I wouldn't have to. Tom referred to Revlimid as "chemo" (several times actually), and said that Velcade is a thalidomide derivative. As I understand these drugs, it's the exact opposite, right?
It seemed peculiar to me that either his daughter, the M.D., or his editors didn't catch these mistakes before airing? While this is not an issue that would even have much meaning for the vast majority of the viewing audience, I find that inconsistencies confuse me, so I work really hard to resolve them.
Additionally, although he didn't state so directly, I somehow got the impression that he had been given one of the new monoclonal antibody drugs as part of his protocol. If I'm correct, that might further explain his lack of specifics since, as far as I know, they are normally only available within the context of a clinical trial.
I am grateful for the exposure Tom has brought to cancer generally, and myeloma specifically. I continue to believe that sharing our stories, however horrific they may be, is cathartic and, perhaps more importantly, creates a sense of hope for us all.
Aloha
Daniel
I was also hoping that someone else in the Forum would ask this question so that I wouldn't have to. Tom referred to Revlimid as "chemo" (several times actually), and said that Velcade is a thalidomide derivative. As I understand these drugs, it's the exact opposite, right?
It seemed peculiar to me that either his daughter, the M.D., or his editors didn't catch these mistakes before airing? While this is not an issue that would even have much meaning for the vast majority of the viewing audience, I find that inconsistencies confuse me, so I work really hard to resolve them.
Additionally, although he didn't state so directly, I somehow got the impression that he had been given one of the new monoclonal antibody drugs as part of his protocol. If I'm correct, that might further explain his lack of specifics since, as far as I know, they are normally only available within the context of a clinical trial.
I am grateful for the exposure Tom has brought to cancer generally, and myeloma specifically. I continue to believe that sharing our stories, however horrific they may be, is cathartic and, perhaps more importantly, creates a sense of hope for us all.
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Tom Brokaw diagnosed with multiple myeloma
I was disappointed, but should not have been. It is, after all, TV.
It felt like it was a lot of navel gazing by Brokaw, who seems to think he is the anointed one in terms of life experience. Perhaps this is a baby boomer phenomenon or just human nature to believe your experience of a fairly common life event is revolutionary and brand new and worthy of an hour special in prime time (see marriage, childbirth, and death).
It was interesting to see what he learned about himself and to see how his family was impacted, but it was not enlightening to me in any way. It did not add anything to the cancer survivor narrative, which I first came into contact with at 19 when I learned a rugby teammate had been living with Hodgkins. He was dead five years later. It’s horrible, humbling, and brings your life into sharp focus.
If it wasn't Tom "I coined the term, Greatest Generation" Brokaw, it would not have been on TV. And if I did not have the exact same kind of cancer, with basically the exact chemo drug regimen (but not as much as him; report said he was taking 17 pills a day!), I would have turned it off after 5 minutes.
His big takeaway was that cancer affects the entire circle of friends and family, not just the individual afflicted. No kidding!
But it does bring awareness to the situation, which leads to more donors, and more advances in treatment, which is of course a very, very good thing.
I was diagnosed last October, live in NYC, and am fortunate enough to be a short subway ride away from some of the world's best places to go for treatment. My Mt. Sinai doctors are a gift from the heavens.
As is the Beacon, I have concluded.
It felt like it was a lot of navel gazing by Brokaw, who seems to think he is the anointed one in terms of life experience. Perhaps this is a baby boomer phenomenon or just human nature to believe your experience of a fairly common life event is revolutionary and brand new and worthy of an hour special in prime time (see marriage, childbirth, and death).
It was interesting to see what he learned about himself and to see how his family was impacted, but it was not enlightening to me in any way. It did not add anything to the cancer survivor narrative, which I first came into contact with at 19 when I learned a rugby teammate had been living with Hodgkins. He was dead five years later. It’s horrible, humbling, and brings your life into sharp focus.
If it wasn't Tom "I coined the term, Greatest Generation" Brokaw, it would not have been on TV. And if I did not have the exact same kind of cancer, with basically the exact chemo drug regimen (but not as much as him; report said he was taking 17 pills a day!), I would have turned it off after 5 minutes.
His big takeaway was that cancer affects the entire circle of friends and family, not just the individual afflicted. No kidding!
But it does bring awareness to the situation, which leads to more donors, and more advances in treatment, which is of course a very, very good thing.
I was diagnosed last October, live in NYC, and am fortunate enough to be a short subway ride away from some of the world's best places to go for treatment. My Mt. Sinai doctors are a gift from the heavens.
As is the Beacon, I have concluded.
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timcd
Re: Tom Brokaw diagnosed with multiple myeloma
Did I hear correct that Tom said he was taking Revlimid twice a day, I had not heard of that before.
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Music box lady - Name: Margie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 60
Re: Tom Brokaw diagnosed with multiple myeloma
Tom Brokaw also was interviewed yesterday by Katie Couric. Here's the full interview.
He mentions that, initially, the plan was for him to receive a stem cell transplant, but that changed based on his response to his induction therapy. He also discusses briefly the results of his chromosomal abnormality testing, and says that he was treated with Revlimid and Velcade – two drugs, he says, that "both came out of thalidomide."
On that last statement, Brokaw probably was told at some point that Revlimid, Velcade, and thalidomide are all newer, novel agents, and he probably also was told about the chemical similarity between Revlimid and thalidomide. He therefore probably assumed that Velcade is also chemically similar to thalidomide.
(You can also view it at this page at Yahoo.)
He mentions that, initially, the plan was for him to receive a stem cell transplant, but that changed based on his response to his induction therapy. He also discusses briefly the results of his chromosomal abnormality testing, and says that he was treated with Revlimid and Velcade – two drugs, he says, that "both came out of thalidomide."
On that last statement, Brokaw probably was told at some point that Revlimid, Velcade, and thalidomide are all newer, novel agents, and he probably also was told about the chemical similarity between Revlimid and thalidomide. He therefore probably assumed that Velcade is also chemically similar to thalidomide.
(You can also view it at this page at Yahoo.)
Re: Tom Brokaw diagnosed with multiple myeloma
From this interview, it sounds like he also was on a bisphosphonate, since he referred to getting "bone strengthening injections".
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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
I just read Brokaw's book and found it very interesting that under Mayo and particularly Sloan Kettering's care, they decided he did not need a transplant because his M-spike dropped 90 per cent on VRD (Velcade, Revlimid, and dexamethasone). They did harvest stem cells for possible future treatment.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Tom Brokaw diagnosed with multiple myeloma
I found this interview also to be interesting. Although about ten minutes of it is about football, which seems to be a major interest for Mr. Brokaw, a lot of it was about his myeloma journey so far. I don't think he knows about 'proteasome inhibitors' as opposed to 'immunomodulatory agents', but the gist of it is that he was treated well with drugs and is not planning to have a stem cell transplant.
From my perspective, it's interesting that he was treated with Revlimid as a first line treatment. I think that is quite usual in the US, but in Canada, there is now a proposal to Health Canada to change an 'indication' for the use of the drug so that it could be used as a first line treatment, as well as for relapse and 'maintenance'. Mr. Brokaw's treatments so far would put him in that situation.
I hope that the application to HC is successful, since it seems to help a lot of patients to be treated first with Revlimid. Here, I was treated first with Velcade, which worked well, but of course everyone is different, and what works for one patient may not for another one.
From my perspective, it's interesting that he was treated with Revlimid as a first line treatment. I think that is quite usual in the US, but in Canada, there is now a proposal to Health Canada to change an 'indication' for the use of the drug so that it could be used as a first line treatment, as well as for relapse and 'maintenance'. Mr. Brokaw's treatments so far would put him in that situation.
I hope that the application to HC is successful, since it seems to help a lot of patients to be treated first with Revlimid. Here, I was treated first with Velcade, which worked well, but of course everyone is different, and what works for one patient may not for another one.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Tom Brokaw diagnosed with multiple myeloma
I should have added that the application to HC is for Revlimid to be used as a first line treatment for patients who are not planning to have a stem cell transplant!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Tom Brokaw diagnosed with multiple myeloma
Mutterings:
With his obvious rheumatoid arthritis / connective disease, I don't 'spect his Orthopod was really too concerned re: his back complaints pre- diagnosis. ( His hands are getting pretty well deformed)
I also wonder if he got PN from the Velcade, and if the rheumatoid disease potentiates his PN....?
His face also is a little "stiff", and on all these shows he is "Pre-seated". I wonder if there is some Parkinsons creeping in, as well.??
Ah, the joys of being a celebrity "Guinea Pig", that all can weigh in on. Diagnosis by Internet !
Multiple myeloma is such a nasty little disease!
Hope he does well with his health, and multiple myeloma, in the future.
With his obvious rheumatoid arthritis / connective disease, I don't 'spect his Orthopod was really too concerned re: his back complaints pre- diagnosis. ( His hands are getting pretty well deformed)
I also wonder if he got PN from the Velcade, and if the rheumatoid disease potentiates his PN....?
His face also is a little "stiff", and on all these shows he is "Pre-seated". I wonder if there is some Parkinsons creeping in, as well.??
Ah, the joys of being a celebrity "Guinea Pig", that all can weigh in on. Diagnosis by Internet !
Multiple myeloma is such a nasty little disease!
Hope he does well with his health, and multiple myeloma, in the future.
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Rneb