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Need Info: Myeloma Amyloidosis + Pul. Hypertension

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Need Info: Myeloma Amyloidosis + Pul. Hypertension

Old 10-12-2016, 10:56 AM
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Default Need Info: Myeloma Amyloidosis + Pul. Hypertension

When I first met my buddy about 4 years ago, he was running 10k races, was fit, and trim. Great health at age ~50.

His health has dramatically deteriorated since then.

Unable to ignore his health concerns any longer, he went to the ER last Monday and has been there ever since.

The diagnoses are horrible. First, rheumatoid arthritis. Then congestive heart failure. Blood clots in his lungs. Low blood pressure, but high pulse rate. Then we got into the really bad conditions: Myeloma Amyloidosis (a type of blood cancer) and severe pulmonary hypertension.

There have only been about 20 people in history diagnosed with myeloma amyloidosis AND pulmonary hypertension simultaneously. They survived from 2 days to 7 months after diagnosis. None lived longer than 7 months and none recovered.

My buddy and his wife are amazingly happy with the local hospital. The care and attention he's getting is phenomenal and I would recommend this hospital wholeheartedly.

Still, his wife thinks that the doctors are not acting as a team. She also thinks that he needs a team captain- one single doctor who can oversee all the others.

My questions are:

1. Is there anything to be optimistic about?

2. Of all the doctors in America, which is the best qualified to be the team captain?

Thanks, everyone!

==>Rapi

PS Hug your loved ones tonight.
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Old 10-12-2016, 12:01 PM
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The team captain for this should be the best hematologist/oncologist that can be found. Either a cardiologist or pulmonologist or both should be on the team.

Yes, amyloidosis due to myeloma carries a poor prognosis. There are new treatments for myeloma available.

The pulmonary hypertension is probably due to the heart failure (left side) and/or blood clots in the pulmonary arterial circulation. .
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Old 10-12-2016, 01:01 PM
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Go to (myelombeacon.com) and post question on the forum. Short version answer is you need to see an uber specialist that only does myeloma. MD Anderson Myeloma Center would be good place to start
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Old 10-12-2016, 01:01 PM
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Wow. Very active cardio workouts to have a diagnosis of heart failure. Sorry to hear for your friend.
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Old 10-12-2016, 02:33 PM
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Is mayo in network for them? Can they get to the one in AZ?
http://www.mayoclinic.org/biographie...d/bio-20053425

No personal info but appears very well qualified.

Prayers for them and you.

A good hospital and doctors are ones you like yet aren't just giving you comfortable care. Do your own reading and research and keep at it. Push for the care and tests you want. Don't just do the "he's the doctor" thing. You want someone who will listen, consider and show you why you're wrong or admit when you might be right when you question them and take it all in stride without ego.
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Old 10-14-2016, 10:27 AM
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Thanks for your help, everyone!

This has been a difficult couple of weeks. There is a small bit of hope for my buddy, but it's an outside shot. I will let you know if anything comes of this. It would be a miracle.

==>Rapi
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Old 10-14-2016, 11:27 AM
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Wherever you/he lives you need to get to the very best hospital that specializes in that field. Doesn't matter if it means the Mrs. needs to hotel it for awhile. Assuming they have the money for a hotel and plane tickets etc. they need to go now.

God speed.
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Old 10-14-2016, 11:50 AM
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My son in law was in the prime of his life and came down with myeloma--cancer of the red blood cells. He had chosen to spend his healthcare money on things like drag cars and new pickup trucks.
Instead of visiting a doctor and paying out of his pocket, he began self medicating with illegal drugs and prescriptions.
By the time he was diagnosed by a doctor, the myeloma had gone into amyloidosis. The good news is our daughter had a job with insurance provisions. By that time, the only treatment was a bone marrow transplant. He ended up getting a massive infection in his port, and died within a week (5 years ago.)
No matter the situation, myeloma is a very serious condition and it takes a number of physicians working together.
There are very few medical centers that can handle such a case. I'd be either in M.D. Anderson in Houston or Sloan Kettering in New York City if I had such a disease. And the prognosis not good in the best of cases. But when there are heart problems, etc., the chances of beating it are not good.
Your friend should be getting his business in order, relationships in order and getting right with God--simply put. His chances are not good.
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Old 11-11-2016, 06:51 AM
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An update: The local hospital has been absolutely fantastic, but they have decided that Chuck's condition is beyond their experience and means. The current hospital attempted to transfer Chuck to Jackson in Miami for a heart transplant, but they refused him, saying that he has been on a certain medication too long and that makes a successful transplant less likely.

The local hospital then tried to transfer Chuck to Shands in Gainesville. They refused Chuck, as well, saying that their experience with his conditions is too limited.

Chuck's file was then sent to a team of doctors from Harvard in Boston. They accepted him almost immediately. So, my buddy and a nurse will fly up there later on today. Chuck and his family are having a send off party today.

Chuck is going to Brigham & Women's hospital. This is my mom's hospital. Whenever she needs to see a doctor, she gets in her car in Naples and drives to Boston! (She refuses to fly.) Mom is a bit particular. I am pretty sure Chuck will get the best treatment in the world.

Thanks to all of you for your support, but one member deserves a special shout-out: I would like to extend my most sincere thanks to Crazy Beard!!! This guy is a saint. Even amidst his own health scare, he has been there every day for me, encouraging me, helping me, and making sense of what the doctors are saying.

Thank you, brother! If I can help you live your dream, please let me know.

==>Rapi
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Old 11-11-2016, 07:04 AM
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I think that's good news he's moving Rapi. Will keep praying for Chuck and those around him especially during the move. At least he gets to be outside the hospital even if just for a little bit. Stay strong - You've got my info so get in touch whenever.
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Old 11-11-2016, 07:21 AM
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My wife was treated successfully at the Brigham & Women's collection of Harvard hospitals. She was at both Brigham and Faulkners. Her care was extraordinary. Their Doctors are among the best in the world. He'll be in the best of human hands. Good luck.
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Old 11-11-2016, 07:35 AM
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Originally Posted by Marco_boater View Post
My wife was treated successfully at the Brigham & Women's collection of Harvard hospitals. She was at both Brigham and Faulkners. Her care was extraordinary. Their Doctors are among the best in the world. He'll be in the best of human hands. Good luck.
My daughter is a physician @ Brigham and Womens and Faulkner. She reports their heart failure specialists are the best anywhere.
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