Tom Brokaw definitely seems to be on a whirlwind tour of the talk shows these days. Here is an interview he did today with Terry Gross on the NPR program "Fresh Air."
(You can also read a summary of the interview, and listen to it, at this page at NPR's website.)
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Re: Tom Brokaw diagnosed with multiple myeloma
The program was painful to watch. We've all been through so much suffering. Brokaw made it seem like he was in remission and everything is fine now. He does not seem to realize, come two to three years on RVD, or whatever chemo he will be on to keep the multiple myeloma in check, how the drugs will take their own toll on his body.
Hopefully God will inspire a dedicated doctor or scientist to develop a drug with no side effects. Better still, a cure. Please pray for this as there really is no other way.
Hopefully God will inspire a dedicated doctor or scientist to develop a drug with no side effects. Better still, a cure. Please pray for this as there really is no other way.
Re: Tom Brokaw diagnosed with multiple myeloma
I am just happy to have a living famous face behind the disease, no matter his possible misspeaks, self promotion, etc. The reality is that any publicity is good publicity for such a little known disease. I just hope that one day he will speak to a multiple myeloma-savvy group, because we all have our own questions about his treatment and lessons that we might be able to learn.
I just hate to hear the word remission, particularly so soon in a patient's journey. For me, with a disease that is incurable but treatable, remission can be a somewhat misleading term; particularly if you are on maintenance therapy. I agree that to the external world, remission means cured, so that is a problem for all of us who struggle every day with this disease.
I just hate to hear the word remission, particularly so soon in a patient's journey. For me, with a disease that is incurable but treatable, remission can be a somewhat misleading term; particularly if you are on maintenance therapy. I agree that to the external world, remission means cured, so that is a problem for all of us who struggle every day with this disease.
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micallie
Re: Tom Brokaw diagnosed with multiple myeloma
There is some interesting information in the NPR interview.
Brokaw says his "blood count has returned to normal", which suggests, to me, that he has no M-spike. It's not possible from what he says in the interview to tell if he's met the criteria for a complete response, let alone sCR or MRD negative status.
He says that he is on maintenance therapy, and expects to be on some form of treatment continuously for the rest of his life. He likens it to being a diabetic and having to take insulin. My guess is that he's taking Revlimid maintenance, because he says he's taking "a pill" everyday.
He does add that perhaps he won't have to be treated all of the rest of his lifetime, because he thinks there will be a cure sometime within his lifetime. (!)
He notes that Dr. Ken Anderson told him multiple myeloma is a "nasty" disease, which is something he hadn't heard up until that point in discussions with his doctors, but he thinks it's a good description. On that note, he added that the pain he experienced related to the disease was "excruciating" and "paralyzing", worse than any pain he had experienced before (and he's been in some major accidents).
He recommends that anyone over 60 who has very bad back pain that doesn't go away should not just assume it's something benign. They should get a blood test to check to see if it might be multiple myeloma.
Brokaw says his "blood count has returned to normal", which suggests, to me, that he has no M-spike. It's not possible from what he says in the interview to tell if he's met the criteria for a complete response, let alone sCR or MRD negative status.
He says that he is on maintenance therapy, and expects to be on some form of treatment continuously for the rest of his life. He likens it to being a diabetic and having to take insulin. My guess is that he's taking Revlimid maintenance, because he says he's taking "a pill" everyday.
He does add that perhaps he won't have to be treated all of the rest of his lifetime, because he thinks there will be a cure sometime within his lifetime. (!)
He notes that Dr. Ken Anderson told him multiple myeloma is a "nasty" disease, which is something he hadn't heard up until that point in discussions with his doctors, but he thinks it's a good description. On that note, he added that the pain he experienced related to the disease was "excruciating" and "paralyzing", worse than any pain he had experienced before (and he's been in some major accidents).
He recommends that anyone over 60 who has very bad back pain that doesn't go away should not just assume it's something benign. They should get a blood test to check to see if it might be multiple myeloma.
Re: Tom Brokaw diagnosed with multiple myeloma
Nancy Shamanna wrote:
Nancy, I was also treated with Revlimid when I was newly diagnosed in August 2013. I received the same cocktail as Tom Brokaw. I went into complete remission December 2013 and had a stem cell transplant February 2014. I believe they are using Revlimid as a first time treatment more and more. I am now on maintenance Revlimid at 10 mg a day.
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!
Nancy, I was also treated with Revlimid when I was newly diagnosed in August 2013. I received the same cocktail as Tom Brokaw. I went into complete remission December 2013 and had a stem cell transplant February 2014. I believe they are using Revlimid as a first time treatment more and more. I am now on maintenance Revlimid at 10 mg a day.
Re: Tom Brokaw diagnosed with multiple myeloma
That's interesting, Smurfett682! I just go on what I read is literally approved here in Canada. I know that oncologists do as much as they possibly can for their patients.
Are you by any chance on a 'private' health care plan for Canadians, such as Great Life or Sunwest? For patients on those plans, they may take any drug approved by Health Canada, before the provinces approve funding, if the insurance plan is willing to pay for it. Not sure about the 'indications' though ...
Are you by any chance on a 'private' health care plan for Canadians, such as Great Life or Sunwest? For patients on those plans, they may take any drug approved by Health Canada, before the provinces approve funding, if the insurance plan is willing to pay for it. Not sure about the 'indications' though ...
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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
Mayo Clinic should never have let Tom return to his remote ranch. I doubt he was given any proper testing to determine the severity of his spine. He should have gone under surgery immediately.
It is obvious the guy is in denial. He should not be riding a bike in Central Park NYC ... a safe stationery bike is more in order. He slipped and fell carrying groceries into that ranch ... give me a break ... where the hell was his caregiver??
He should stay on Revlimid and dex .... Do not take Velcade, Tom ... you'll probably end up with peripheral neuropathy and then really feel that you have one foot in the grave. I suggest you retire, you might live another ten years. This constant travel abroad is not good for your health and your hemoglobin might drop down to 6.99. Mmmm ... transfusion time.
If you take 40 mg of dex with 20 mg of Cialis at the same time, you will feel wonderful, just like when you were healthy.
Your oncologist at Sloan Kettering is cute ... and we'll leave it at that. I suggest you visit Moffett in Tampa and see Dr. Batz. You should also check for a vitamin D deficiency.
It is obvious the guy is in denial. He should not be riding a bike in Central Park NYC ... a safe stationery bike is more in order. He slipped and fell carrying groceries into that ranch ... give me a break ... where the hell was his caregiver??
He should stay on Revlimid and dex .... Do not take Velcade, Tom ... you'll probably end up with peripheral neuropathy and then really feel that you have one foot in the grave. I suggest you retire, you might live another ten years. This constant travel abroad is not good for your health and your hemoglobin might drop down to 6.99. Mmmm ... transfusion time.
If you take 40 mg of dex with 20 mg of Cialis at the same time, you will feel wonderful, just like when you were healthy.
Your oncologist at Sloan Kettering is cute ... and we'll leave it at that. I suggest you visit Moffett in Tampa and see Dr. Batz. You should also check for a vitamin D deficiency.
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velmous
Re: Tom Brokaw diagnosed with multiple myeloma
I would remind you that this disease is extremely variable, .....and very Individualized.
Maybe back off some,...and give him some of the space,.... that we all crave.?
I know that having someone dictate to me, my activities, and my work, would just piss me off.
We all have to have our reasons to get up in the morning. Let Tom have his.
Maybe back off some,...and give him some of the space,.... that we all crave.?
I know that having someone dictate to me, my activities, and my work, would just piss me off.
We all have to have our reasons to get up in the morning. Let Tom have his.
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Rneb
Re: Tom Brokaw diagnosed with multiple myeloma
Let me chime in agreement with RNEB.
I am 80% through with Tom Brokaw's book. From a literary stand point, not thrilled with it and could have many, many criticisms. He is a public figure, after all.
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.
On the contrary, I am aware that he has stepped his advocacy of multiple myeloma and cancer in general, and I would expect that he will continue to do so in the future. Best wishes to Tom and keep up the good work.
Regards,
JPC
I am 80% through with Tom Brokaw's book. From a literary stand point, not thrilled with it and could have many, many criticisms. He is a public figure, after all.
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.
On the contrary, I am aware that he has stepped his advocacy of multiple myeloma and cancer in general, and I would expect that he will continue to do so in the future. Best wishes to Tom and keep up the good work.
Regards,
JPC
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JPC - Name: JPC
Re: Tom Brokaw diagnosed with multiple myeloma
Anyone criticizing Velcade and lauding Revlimid here, please compare risks and benefits for us.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66