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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Tom Brokaw diagnosed with multiple myeloma

by kjpoppit on Fri May 08, 2015 1:57 am

I enjoyed the Dateline program, although it sounds weird to call it enjoyment.

Tom, if you read this, thank you for sharing. If you ever visit Alaska, I would be happy to show you some hot fly fishing spots for salmon. This is going to be my first summer in two years I get to fish since I was diagnosed.

Be well and live life everyone.

Kim

kjpoppit
Name: Kim Nelson
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept. 19th, 2013
Age at diagnosis: 47

Re: Tom Brokaw diagnosed with multiple myeloma

by Beacon Staff on Fri May 08, 2015 6:32 am

Thanks, everyone, for keeping us updated about what was in the program last night.

We haven't been able to grab any screenshots yet from the Dateline program. However, NBC News did a short report earlier last night about the (at that point) upcoming Dateline program, and there was a shot in that segment of Tom Brokaw's daughter Jennifer viewing The Beacon. Here's a screengrab from that scene:

NBCNewsBrokaw1.jpg
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If you're interested, here's the NBC News report (if the video doesn't show on your screen, you also can view it at this page).


Beacon Staff

Re: Tom Brokaw diagnosed with multiple myeloma

by Multibilly on Fri May 08, 2015 7:07 am

Here's the full show:


(You can also view it at this page at the NBC Dateline website.)

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

by Beacon Staff on Fri May 08, 2015 8:36 am

Thanks for the info on how to view the full show, Multibilly.

As already has been pointed out, the Myeloma Beacon was quite visible in parts of the program. At one point, a view of the Beacon's news page took up almost the entire screen. Here's a screengrab of that shot:

Dateline1.jpg
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Also, Beacon Medical Advisor Dr. Heather Landau spoke many times during the program, since she apparently directed Tom Brokaw's treatment. Here are two screengrabs of her from different parts of the program.

Dateline2.jpg
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Dateline3.jpg
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You can view a list of the contributions Dr. Landau has made to discussions here in the forum by going to this list of her postings.

Beacon Staff

Re: Tom Brokaw diagnosed with multiple myeloma

by Nancy Shamanna on Fri May 08, 2015 9:10 am

Thanks so much for following this news story about Tom Brokaw from NBC Dateline yesterday! I should have PVR'd it, but was out all day, and was looking for it about half an hour late!

Nice to see that Mr. Brokaw's daughter, a doctor, was reading the Myeloma Beacon! I enjoyed watching the entire documentary, thanks to the posting from Multibilly! It is beautifully produced and very informative. Best wishes to the whole Brokaw family!

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

by Castaway on Fri May 08, 2015 10:18 am

I just wanted to say thanks to Multibilly for letting us know about the Tom Brokaw Dateline show. It was informative, and I would have to say somewhat like myself and a lot of others who just gut through any type of pain so others are not worried about you. Just take another ibuprofen or two and hit the road. Until the Ibuprofen stops working and you break some bones.

I guess a lot of us can also know that we have become shorter like Mr. Brokaw. I think he said 2 inches (5 cm). Myself a little less at 1.5 inches.

One of my early posts was answered by Dr. Landau, and it was really nice to see her on the show. At this point, I take it that Mr. Brokaw has had several treatments, but the first that he mentioned was Velcade. Then went on to mention Revlimid and dexamethasone.

Of course, I wish there was more on his treatments and plans and less on his travels. There was no mention that he did a SCT or harvest. It sounds like he just hung in there with drug treatments. I have to say that some of the suggestions on the show – to get a second opinion, for one – is always a good idea, and to not only have a great oncologist but also see a multiple myeloma specialist is key in fighting this disease.

I guess if you are lucky enough to be close to a multiple myeloma specialist, that's great, but when you are hundreds of miles from a multiple myeloma specialist and hospital, that becomes extremely hard financially and physically. Also, insurance plays a huge part in this. I am glad that this was mentioned on the show.

I personally felt like it was a great show and will hopefully bring more awareness to multiple myeloma. I do wish there was more to his treatment details that led to his remission. At 10:00 p.m. it was all I could do to stay awake till 11:00, so I am sure I missed a few things. I believe it will repeat at an earlier time, so I will watch again.

Castaway

Castaway
Name: George
Who do you know with myeloma?: just myself
When were you/they diagnosed?: 1/24/14
Age at diagnosis: 62

Re: Tom Brokaw diagnosed with multiple myeloma

by NStewart on Fri May 08, 2015 1:14 pm

I, too, watched the show and remembered those first months and year of watchful waiting and then treatment. One of the things that I learned in my journey was to speak up about any symptoms that I may be experiencing. This was after having a pathologic fracture of my left humerus following several months of severe pain. I thought that it was arthritis from my shoulder and tennis elbow. WRONG!

With his consistent back pain even with successful treatment, it was later found that he had spinal compression fractures. If he had complained about the continuing back pain, he might have had the spinal procedure earlier and saved himself months of discomfort. Even with some of the best care available, the compression fractures were not noticed in earlier scans of his spine.

It definitely was a show worth watching. I can now understand more why he was so silent about his diagnosis and treatment for so long. Not only because he is a public figure dealing with a private matter, but it is hard to come to terms with your diagnosis, your health problems related to it, and your treatment during those first months. We don't own the private life of those we know because of their fame. Kudos to him for becoming more public with his journey now. I also was surprised to hear of the other public figures in the news world who lived with myeloma.

As a follow-up to this program, Tom Brokaw will be a guest on "Kelly and Michael", ABC daytime, on Monday, May 11. Will there be a discussion of myeloma? Who knows? But, it might be worth watching to see what he is asked and what he has to say. The show airs at 9 am EDT and the guests begin to be interviewed about 9:20 am.

Happy Mother's Day to all of the mothers on this forum who have myeloma or are caregivers, family members, and friends of someone with myeloma.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Tom Brokaw diagnosed with multiple myeloma

by Rico Suave on Fri May 08, 2015 4:09 pm

OK, it was, overall, a very nice story. But let's be clear: That was a story about Tom Brokaw, not multiple myeloma. Brokaw was the courageous protagonist, and multiple myeloma simply played the role of the villain. The others play supporting roles in Tom's dramatic movie. What­ever. In the end, it's just a TV show in which he's promoting his book.

A couple of things:

  • How is it possible that, if his back pain was so debilitating and Dr. Gertz diagnosed him, ANYONE could have missed the compression fractures in his vertebrae? How was a kypho­plasty not on the top of his pain management treatment list? That is astounding to me. He kind of threw some unnamed radiologist under the bus there ...
     
  • If Brokaw is on the Board of Directors at Mayo, why ... um ... was there not more in­volve­ment by the Mayo Clinic and Dr. Gertz? (I know, Brokaw lives in NYC.)
     
  • Gotta tell ya, I felt a little bad for our boy, Morie. He was kinda portrayed as the 2nd villain. The Mini-Me to M​M. The only splice of tape they aired of probably a 0:30 interview was that he was blunt and un-caring about delivering the diagnosis. That's not Dr. Morie Gertz. And, fade back to Tom's movie. Aaaand CUT! That's the last we hear from Dr. Morie Gertz.
     
  • I don't know Dr. Heather Landau, but the piece kinda portrayed her as ultimately taking direction from Brokaw's physician daughter. I know that wasn't the case, but they were hinting at it.
What did we learn? That Tom Brokaw is a stoic, uniquely courageous individual with a super-human pain tolerance. All in all, a very nice plug for my favorite website: myelomabeacon.com

Rico Suave

Re: Tom Brokaw diagnosed with multiple myeloma

by Toni on Fri May 08, 2015 6:08 pm

I thought it was well-done. The emphasis was not only on how cancer affects an individual, but more importantly, how it affects the whole family. This is something we all can relate to regardless of the hurdle(s) we must face in life. And his daughter pointed out that they never had a hurdle before.

The intent was not a multiple myeloma documentary, but rather the experience of what it's like to have your whole life dismantled by cancer. Any cancer. Tom just happened to have multiple myeloma. I thought his purpose was to give us a glimpse of the existential process one goes through with that diagnosis: who am I? why is this happening? will I make it through? will I see another season? what of my family and those I love dearly.

We've often had conversations on these boards about the necessity of seeking specialists in the field, traveling to the best, and staying apprised of the latest treatment advances. And he wistfully reflects on those who far less fortunate than he who do not have access to this type of healthcare for many reasons.

Many have hoped he would put more efforts toward myeloma awareness due to his position and wealth. But I think we have to remember that he, too, is human. He has a loving partner in his wife and wonderful daughters ... and grandchildren he loves dearly. His energies have been devoted to his own treatment and healing. We all have our own path to travel. I wish him well.

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: Tom Brokaw diagnosed with multiple myeloma

by Cwilkerson on Fri May 08, 2015 7:01 pm

Watching Dateline last night, the similarities between the stories of Tom Brokaw and my husband were eerie. I am a physician and the wife of a multiple myeloma patient, who also is a physician, and who underwent a stem cell transplant at Mayo under the care of Dr. Morie Gertz in October 2014.

Like Tom Brokaw, my husband, Bill, had back pain that was misdiagnosed as benign by a specialist. I don't know if Brokaw had had an MRI when he saw the orthopedist. In my hus­band's case, he had, in fact, already had an MRI, which we would learn 6 months later had showed vertebral compression fractures that the University of Michigan spine specialist misdiagnosed as sacro-iliac joint dysfunction. During those 6 months, like Brokaw, my husband suffered from severe back pain and lost over 2 inches of height.

The correct diagnosis was immediately picked up by a different specialist shortly after my husband was diagnosed with IgG lambda multiple myeloma, Stage III. That specialist stated that the original MRI had shown the fractures. I should add that Bill is a Vietnam veteran exposed to Agent Orange during his stint as a helicopter pilot in 1965-66. I know that Brokaw spent time in Vietnam as well, where the US sprayed millions of gallons of the carcinogenic defoliant.

Bill initiated care with Dr. Daniel Lebovic at the University of Michigan and after 6 cycles of bortezomib (Velcade) / cyclophosphamide / prednisone, with achievement of very good partial response, he was advised to have a stem cell transplant. His cytogenics placed him in standard / intermediate risk. We went to Mayo for a second opinion. Dr. Gertz recommended that Bill proceed with the transplant, citing his age, 69, and his otherwise relatively good health. Bill underwent the transplant as an outpatient in Rochester under the care of Dr. Gertz. Al­though grueling, he got through it and has had a much better quality of life in the last several months, as Dr. Gertz predicted when he recommended the procedure.

When we watched Dateline last night, Bill and I had some sentiments similar to those ex­pressed by others. Most especially, we would like to have seen more useful information for people dealing with multiple myeloma, particularly a discussion of the decision-making pro­cess re­garding stem cell transplant. Many of the thousands of viewers who are multiple myeloma patients and their loved ones have wrestled with this decision and are left curious as to why this was dis­pensed with so superficially in the program. We're glad, though, that Brokaw and Dateline brought multiple myeloma to the attention of millions, some of whom may benefit from learning about it.

Cwilkerson
Name: Catherine Wilkerson
Who do you know with myeloma?: Husband
When were you/they diagnosed?: December, 2013
Age at diagnosis: 69

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