Hi Bmrazz1,
When I was first diagnosed, I was also prescribed 40 mg dex per day, 4 days on and 4 days off, in continuous cycles. I can relate to your fatigue – I remember my hands shook all the time like I had palsy. But it knocked my kappa free light chains down fast. Dex is one drug I hope never to have to take again.
My grandmother died of what they called leukemia when she was 69 (back in 1977). I wonder if it was multiple myeloma.
I have 3 children and I got them each a bottle of curcumin with Bioperine and asked them to take at least one 500 mg tablet daily in case one of them has a genetic predisposition to multiple myeloma.
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
I just bought Tom's book on his multiple myeloma. I have not yet started to read it, but expect it to be informative as his news broadcasts were.
Tom - From the interview, it sounds like you are doing as well as any of us. Best of luck in this fight.
N . G.
Tom - From the interview, it sounds like you are doing as well as any of us. Best of luck in this fight.
N . G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Tom Brokaw diagnosed with multiple myeloma
David,
I find your statements interesting, as they somewhat parallel my own in some respects.
I believe I was misdiagnosed several times and then, in 2004, when I became unable to walk due to a disintegrating spine, I was in and out of the hospital till my primary care physician asked for a test for multiple myeloma. I received one treatment that lasted for 10 months (thalidomide and dex), and have been told that my numbers are good but never told I am in remission.
I have had no further treatment for multiple myeloma of any kind for 10 years, but go in every 6 months for blood tests, which so far has proven to be acceptable.
N.G.
davidincalif wrote:
I find your statements interesting, as they somewhat parallel my own in some respects.
I believe I was misdiagnosed several times and then, in 2004, when I became unable to walk due to a disintegrating spine, I was in and out of the hospital till my primary care physician asked for a test for multiple myeloma. I received one treatment that lasted for 10 months (thalidomide and dex), and have been told that my numbers are good but never told I am in remission.
I have had no further treatment for multiple myeloma of any kind for 10 years, but go in every 6 months for blood tests, which so far has proven to be acceptable.
N.G.
davidincalif wrote:
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.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Tom Brokaw diagnosed with multiple myeloma
Well, okay, here it is June of 2015, and Brokaw's book about his multiple myeloma, "A Lucky Life ... Interrupted," has been published.
Interrupted. Here is my "lucky" life, which was "interrupted" by cancer, and now I'm, well, "lucky" again. Let's forget about the fact that a diagnosis of multiple myeloma is a virtual death sentence. That doesn't apply to Tom Brokaw! I'm through it, no more markers to go! Cancer "interrupted" my "lucky life," but now it's over and I can move on while the rest of you poor fools are all going to die, and soon. I can keep on writing boring books about things and people and events nobody since the 50's cares about anymore. But my main point is that cancer only "interrupted" my life, like an unpleasant but mandatory task that had to be taken care of.
What an insult to the memory of all those who have died at the hands of multiple myeloma and those who are dying from it now, like me! Brokaw's denial that multiple myeloma is terminal is not only wishful thinking, it's damaging and dangerous to the community, it stands mortality on its head, defies the odds and spits in the face of facts and figures.
Does he not understand that "remission" is just that, a respite from the Last Wave? Multiple myeloma does not give up. As long as new blood vessels continue to grow and feed out the cancer into the body, and until doctors and researchers can find a way to halt or inhibit angiogenesis favorable to the spread of cancer, we will continue to die of multiple myeloma's handmaidens: infections, system failures, heart attacks, strokes.
And so will Tom Brokaw. Because of that, he is my brother and he has my compassion and support; one day it will dawn on him – he picked a lousy title for an important book!
Interrupted. Here is my "lucky" life, which was "interrupted" by cancer, and now I'm, well, "lucky" again. Let's forget about the fact that a diagnosis of multiple myeloma is a virtual death sentence. That doesn't apply to Tom Brokaw! I'm through it, no more markers to go! Cancer "interrupted" my "lucky life," but now it's over and I can move on while the rest of you poor fools are all going to die, and soon. I can keep on writing boring books about things and people and events nobody since the 50's cares about anymore. But my main point is that cancer only "interrupted" my life, like an unpleasant but mandatory task that had to be taken care of.
What an insult to the memory of all those who have died at the hands of multiple myeloma and those who are dying from it now, like me! Brokaw's denial that multiple myeloma is terminal is not only wishful thinking, it's damaging and dangerous to the community, it stands mortality on its head, defies the odds and spits in the face of facts and figures.
Does he not understand that "remission" is just that, a respite from the Last Wave? Multiple myeloma does not give up. As long as new blood vessels continue to grow and feed out the cancer into the body, and until doctors and researchers can find a way to halt or inhibit angiogenesis favorable to the spread of cancer, we will continue to die of multiple myeloma's handmaidens: infections, system failures, heart attacks, strokes.
And so will Tom Brokaw. Because of that, he is my brother and he has my compassion and support; one day it will dawn on him – he picked a lousy title for an important book!
Re: Tom Brokaw diagnosed with multiple myeloma
Wow Jack, I saw the TV program and read his book. I believe he is quite aware that he has a treatable but incurable cancer. With his daughter being a physician and all of the experts he sees, including Dr. Landau who contributes to the Beacon, he is well aware that remissions don't last and that the cancer is likely to return. I never got the impression at all that he is in denial that he has a terminal condition. I give him credit to write about his experience and to put multiple myeloma into the spotlight.
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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
Jack,
So much sarcasm and anger in your comments. I did not come away at all with the impression from seeing the Dateline episode or reading the book that he felt he was cured from myeloma. In the Dateline episode he clearly states that he learned the disease is treatable but rarely cured. But there was another Beacon contributor who said they had a friend who watched the Dateline episode and came away thinking Tom has been cured, so I can understand that some people could come away confused about this.
From reading the book, my impression is he clearly understands that at his age he knows his time remaining is limited, myeloma or not, and this has guided his choices and treatment. His lucky life in no way meant he was lucky because he has been cured, but just what it means at face value; his has had a very fortunate life compared to most others including his brother –professionally, financially, and largely at home, and he is grateful for being so fortunate.
My impression and take away is that he has accepted death is coming and does not feel he has been cheated having the lucky life he has had. He is looking at the glass being half full, not empty and obsessing about death.
I suppose he could have written a fear-mongering book that focused on the pain, death, and misery of myeloma and cancer in general. There may be a market for such a book, and it seems that is the book you want. My grandmother would have wanted that too; she was chronically depressed most of her life and was obsessed with and fearful of getting cancer many decades before she eventually died.
But while that aspect of cancer is true, it is not a secret and, for myself, I am not interested in reading such a book and spending my remaining days obsessing about death and being depressed and angry. We are all going to die someday of something.
So much sarcasm and anger in your comments. I did not come away at all with the impression from seeing the Dateline episode or reading the book that he felt he was cured from myeloma. In the Dateline episode he clearly states that he learned the disease is treatable but rarely cured. But there was another Beacon contributor who said they had a friend who watched the Dateline episode and came away thinking Tom has been cured, so I can understand that some people could come away confused about this.
From reading the book, my impression is he clearly understands that at his age he knows his time remaining is limited, myeloma or not, and this has guided his choices and treatment. His lucky life in no way meant he was lucky because he has been cured, but just what it means at face value; his has had a very fortunate life compared to most others including his brother –professionally, financially, and largely at home, and he is grateful for being so fortunate.
My impression and take away is that he has accepted death is coming and does not feel he has been cheated having the lucky life he has had. He is looking at the glass being half full, not empty and obsessing about death.
I suppose he could have written a fear-mongering book that focused on the pain, death, and misery of myeloma and cancer in general. There may be a market for such a book, and it seems that is the book you want. My grandmother would have wanted that too; she was chronically depressed most of her life and was obsessed with and fearful of getting cancer many decades before she eventually died.
But while that aspect of cancer is true, it is not a secret and, for myself, I am not interested in reading such a book and spending my remaining days obsessing about death and being depressed and angry. We are all going to die someday of something.
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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
Being angry at someone's optimism serves no purpose. There is much to hope for in remission and eventually a cure, which will happen.
Re: Tom Brokaw diagnosed with multiple myeloma
Hi Jack.
I have dealt with multiple myeloma for 3 years and have worked through the raw emotions you are expressing. I notice that you wrote at 1:30 a.m. and so I would guess you could not sleep and were anxious. That first few months after diagnosis, I had a friend who told me to expect the stages of grief (and she was right):
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance.
And all the emotions can hit at the same time, or come and go in a twisted knot of emotion - I felt angry that I had been "cheated" of 25 years of life. You mention that you are lucky again - and that you are dying of multiple myeloma.
I am so sorry your prognosis looks bad. I hope things are going better for you now in the light of day.
Cathy
I have dealt with multiple myeloma for 3 years and have worked through the raw emotions you are expressing. I notice that you wrote at 1:30 a.m. and so I would guess you could not sleep and were anxious. That first few months after diagnosis, I had a friend who told me to expect the stages of grief (and she was right):
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance.
And all the emotions can hit at the same time, or come and go in a twisted knot of emotion - I felt angry that I had been "cheated" of 25 years of life. You mention that you are lucky again - and that you are dying of multiple myeloma.
I am so sorry your prognosis looks bad. I hope things are going better for you now in the light of day.
Cathy
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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
Folks:
I don't think anybody can / should stake out the High ground of "enlightenment" in this disease. Doing so, is presumptively arrogant and wrong. It also just tends to piss people off.
Perhaps inartfully stated, I think that is Jack's point and gripe.
I won't tell him he's wrong, or "to correct his thinking", or push a diet on him, or even push Kubler-Ross on him, etc. Too self-absorbed.!
Just as I won't tell Tom he wrote a sh--ty, or even a great book. Too pre-supposing !
It is what it is. It is their respective journey(s).
I confess I have "blown a few folks in the a--" lately, for typical stupid and moronic thinking and actions--that they try to continually foist upon me, and others. When people can't see, think,read nor write--especially, when they refuse to--and they insist on being stupid ---they cease to be rational in my book...and are just blowing smoke. They lack perspective. They lack empathy. Sometimes completely.
I have a terminal disease--and unfortunately, I know it. I don't have time to suffer any more fools--especially chronic fools. So, I get Jack's point. Acutely.
I also get Tom's point(s). They are different from Jack's. Both in approach and content.
I'm not angry, mind you, I'm just out of patience with fools. But, I do see how that dynamic affects / effects others to similar actions. A buddy of mine is on his last couple of miles--3 months expected til death. ( Lung cancer-wide metastasis ) He has been accused of "being angry" by similar patronizing idiots.
He is absolutely not angry--just direct and rational. He often says to the self-absorbed--"please leave and quit taking up my oxygen."
I get his point.
The allure of Greg House MD, is that he had that wonderful directness, that popped " Political correctness" and " feigned arrogance", with a vigor rarely seen. A truly well written role.
I personally did not think House to be depressed, angry or worse--just mostly weary of idiots, who lacked any appreciable perspective and insight(s)....and worse yet, just didn't even try. Despite his chronic pain, House still cherished the insights (and Ironies) of others.
I still love his story of the humble janitor--who the top Japanese Physicians consulted, to cure the patient whose disease had baffled them. Then, was relegated back to his "lowest class" function, after he solved the case...back to scrubbing the dirtiest of floors and commodes.
I will now return to my white collar job, do my best, despite chronic pain and reducing physical function ( I know I am slipping--despite great labs) , and think of this very point,...the next time some self-absorbed idiot blithely says, "Well, you don't look ill to me,... are you sure you are as sick as you are saying, and really suffer from an incurable disease?"
Hopefully, I will think of Jack, Tom, and Greg House, before I respond.
Alas, I know for certain I am neither as humble, nor as wise as the Janitor.
But, I'll make do...and I'm okay. So is Jack, Tom, ...and most of you folks.
I don't think anybody can / should stake out the High ground of "enlightenment" in this disease. Doing so, is presumptively arrogant and wrong. It also just tends to piss people off.
Perhaps inartfully stated, I think that is Jack's point and gripe.
I won't tell him he's wrong, or "to correct his thinking", or push a diet on him, or even push Kubler-Ross on him, etc. Too self-absorbed.!
Just as I won't tell Tom he wrote a sh--ty, or even a great book. Too pre-supposing !
It is what it is. It is their respective journey(s).
I confess I have "blown a few folks in the a--" lately, for typical stupid and moronic thinking and actions--that they try to continually foist upon me, and others. When people can't see, think,read nor write--especially, when they refuse to--and they insist on being stupid ---they cease to be rational in my book...and are just blowing smoke. They lack perspective. They lack empathy. Sometimes completely.
I have a terminal disease--and unfortunately, I know it. I don't have time to suffer any more fools--especially chronic fools. So, I get Jack's point. Acutely.
I also get Tom's point(s). They are different from Jack's. Both in approach and content.
I'm not angry, mind you, I'm just out of patience with fools. But, I do see how that dynamic affects / effects others to similar actions. A buddy of mine is on his last couple of miles--3 months expected til death. ( Lung cancer-wide metastasis ) He has been accused of "being angry" by similar patronizing idiots.
He is absolutely not angry--just direct and rational. He often says to the self-absorbed--"please leave and quit taking up my oxygen."
I get his point.
The allure of Greg House MD, is that he had that wonderful directness, that popped " Political correctness" and " feigned arrogance", with a vigor rarely seen. A truly well written role.
I personally did not think House to be depressed, angry or worse--just mostly weary of idiots, who lacked any appreciable perspective and insight(s)....and worse yet, just didn't even try. Despite his chronic pain, House still cherished the insights (and Ironies) of others.
I still love his story of the humble janitor--who the top Japanese Physicians consulted, to cure the patient whose disease had baffled them. Then, was relegated back to his "lowest class" function, after he solved the case...back to scrubbing the dirtiest of floors and commodes.
I will now return to my white collar job, do my best, despite chronic pain and reducing physical function ( I know I am slipping--despite great labs) , and think of this very point,...the next time some self-absorbed idiot blithely says, "Well, you don't look ill to me,... are you sure you are as sick as you are saying, and really suffer from an incurable disease?"
Hopefully, I will think of Jack, Tom, and Greg House, before I respond.
Alas, I know for certain I am neither as humble, nor as wise as the Janitor.
But, I'll make do...and I'm okay. So is Jack, Tom, ...and most of you folks.
-
Rneb
Re: Tom Brokaw diagnosed with multiple myeloma
Rneb, what a great post!
I guess it was the word "interrupted" that really aggravated me. It is NOT the right word to use for getting cancer and then going into remission. It is not a hiccup. It's a death sentence. "Interrupted" implies that once it's dealt with, Tom can go back to his "Lucky Life" and live like he did before.
Dealing with an incurable disease to a certain extent puts patients on a par with their physicians. I noticed since I've been exploring myeloma communities that a lot of patients like to play doctor, becoming experts on their own numbers and lab results, and helping the doctors come up with game plans for fighting multiple myeloma off (all this usually takes place after the transplant and the inevitable relapse).
There is a note of desperation in all of this as we try to help the doctors help us. My own view is that the doctors already know what they are doing, I don't. And even if they are more willing than in most circumstances to listen to their patients' wishes about treatment, dosage, etc., to my way of thinking their opinions and conclusions carry far greater weight than the latest stab in the dark from the Voodoo Oncologist. If you spend all of your time obsessing over your treatment, new clinical trials, the latest "wonder" drug, etc., you are not seeing the forest for the trees.
Let the doctors do their job, you do everything you can to improve the quality of the time you have left, and that of your family and friends. That is really all that's left to do, and those who are buried in numbers and clinical studies are really missing out.
I guess it was the word "interrupted" that really aggravated me. It is NOT the right word to use for getting cancer and then going into remission. It is not a hiccup. It's a death sentence. "Interrupted" implies that once it's dealt with, Tom can go back to his "Lucky Life" and live like he did before.
Dealing with an incurable disease to a certain extent puts patients on a par with their physicians. I noticed since I've been exploring myeloma communities that a lot of patients like to play doctor, becoming experts on their own numbers and lab results, and helping the doctors come up with game plans for fighting multiple myeloma off (all this usually takes place after the transplant and the inevitable relapse).
There is a note of desperation in all of this as we try to help the doctors help us. My own view is that the doctors already know what they are doing, I don't. And even if they are more willing than in most circumstances to listen to their patients' wishes about treatment, dosage, etc., to my way of thinking their opinions and conclusions carry far greater weight than the latest stab in the dark from the Voodoo Oncologist. If you spend all of your time obsessing over your treatment, new clinical trials, the latest "wonder" drug, etc., you are not seeing the forest for the trees.
Let the doctors do their job, you do everything you can to improve the quality of the time you have left, and that of your family and friends. That is really all that's left to do, and those who are buried in numbers and clinical studies are really missing out.