bb729; they all seem to give hope then pull rug out. The best lung Dr. I ever seen once told me I don't want you to give up hope, but remember there is no money in cures. He also said big Pharma control trials and a lot of doctors.
Liked by Merry, Volunteer Mentor, alamogal635
Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 3068
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@jgpolachek– Welcome to Mayo Connect. I am a volunteer mentor with Mayo Connect. I'm a lung cancer survivor with COPD and Emphysema. One of my doctors told me about certain doctors and pharmacies playing with trials. It's disheartening at best. And I agree, how does that give hope to anyone?
May I ask what brings you to Connect and how can we help?
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@merpreb @jgpolachek– Welcome to Mayo Connect. I am a volunteer mentor with Mayo Connect. I'm a lung cancer survivor with COPD and Emphysema. One of my doctors told me about certain doctors and pharmacies playing with trials. It's disheartening at best. And I agree, how does that give hope to anyone?
May I ask what brings you to Connect and how can we help?
About 12 years ago a friend was in trial at Cleveland Clinic for atherosclerosis a shot for six weeks of ApoA-1 Milano. Great results, Pfizer came in, pulled trial, paid 1.25 billion for all rights. This made possible all the money drug companies made on statin drugs. I was having flares every six months until I found good pulmonary, he put me on Zithromax three times a week m-w-f and started me on lung flute twice a day. My flares are now about every 2-3 years.
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joelars
@joelars
@joelars
Posts: 88
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I learned that Mayo is running stem cell trials for COPD. I understand the last trial was a disappointment with only 5-10% reporting substantial improvements. Still, 5-10% gives me hope. I'm trying to be included in the next trial, maybe by then they will have figured how to improve the outcomes.
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bb729
@bb729
@bb729
Posts: 29
Joined: Aug 06, 2017
@jgpolachek About 12 years ago a friend was in trial at Cleveland Clinic for atherosclerosis a shot for six weeks of ApoA-1 Milano. Great results, Pfizer came in, pulled trial, paid 1.25 billion for all rights. This made possible all the money drug companies made on statin drugs. I was having flares every six months until I found good pulmonary, he put me on Zithromax three times a week m-w-f and started me on lung flute twice a day. My flares are now about every 2-3 years.
I was placed on Zithromax three times a week m-w-f and it has reduced my flares are way down also. I have to check out the lung flute though to go with it. Always a struggle to get the gunk out and I've just learned to live with it . I also take Sprivia , Advair and 1200 m of mucinex morning and night.
I am far from a medical person but I would love to see Mayo Clinic that can multiply stem cells by the millions, multiply Alveolar Epithelial Progenitor cells and then put them in somebody with emphysema. These cells regrew alveoli in mice, if it would do that in humans, emphysema would be slowed or stopped..
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@bb729 I was placed on Zithromax three times a week m-w-f and it has reduced my flares are way down also. I have to check out the lung flute though to go with it. Always a struggle to get the gunk out and I've just learned to live with it . I also take Sprivia , Advair and 1200 m of mucinex morning and night.
The lung flute will get that gunk out if you use it by directions, it's not pretty but boy it clears the gunk!
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bb729
@bb729
@bb729
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joangma
@joangma
@joangma
Posts: 86
Joined: Aug 27, 2018
@merpreb @jgpolachek– Welcome to Mayo Connect. I am a volunteer mentor with Mayo Connect. I'm a lung cancer survivor with COPD and Emphysema. One of my doctors told me about certain doctors and pharmacies playing with trials. It's disheartening at best. And I agree, how does that give hope to anyone?
May I ask what brings you to Connect and how can we help?
big pharma controls people and drugs, I just had a lung biopsy and waiting for my doomed answer. is there any thing else new besides,Zephier valve? there must be something out there ?
joelars
@joelars
@joelars
Posts: 88
Joined: Dec 19, 2018
@llwortman Hello BlueHealer: I am a lung cancer survivor or 10 years and 7 months and never smoker . Definitely see your Mayo Clinic Pulmonologist. It may be helpful to think about paced breathing, Mindfulness and Resiliency training with Dr Amit Sood. After
lung cancer surgery I was afforded an amazing opportunity to be in his research study that I personally felt helped save my life
with what is now in a several books, "Happiness" is one of my favorites.
The program took me from pursed lip breathing while walking very slow, heal toe, heal toe, to accomplishing running three years
later. I have been running and bicycling since. Please understand, I clearly understand the fear factor of not being able to take a
deep breath. In the last few years there have been remarkable medical advances in the world of lung research. It's all about getting the proper care and proper diagnosis. All my best,
I'm intrigued by your story. I was diagnosed with COPD at 50. I was a heavy smoker. I quit and went on a desperate "health kick' including weight training yoga and jogging. I was told I wouldn't be able to jog. Initially I struggled to do a .25 mile jog. Eventually (2-3 years later) I got to 10 miles at 12-13 minute pace. Now, at 65 I generally do 5k-10k jogs at 11-12 minute average (I start at 15 minute pace and end at 9)
Sorry for the history, but I'm curious about your distances and speeds and if you know many lung cancer or COPD people who became fit runners. I haven't met any personally.
I believe my strict exercising routine has substantially slowed the disease progression.
Liked by girlbybay, alamogal635
@joelars I'm intrigued by your story. I was diagnosed with COPD at 50. I was a heavy smoker. I quit and went on a desperate "health kick' including weight training yoga and jogging. I was told I wouldn't be able to jog. Initially I struggled to do a .25 mile jog. Eventually (2-3 years later) I got to 10 miles at 12-13 minute pace. Now, at 65 I generally do 5k-10k jogs at 11-12 minute average (I start at 15 minute pace and end at 9)
Sorry for the history, but I'm curious about your distances and speeds and if you know many lung cancer or COPD people who became fit runners. I haven't met any personally.
I believe my strict exercising routine has substantially slowed the disease progression.
I was diagnosed at 65 could do well on treadmill, only had chronic bronchitis, now 75, have both bronchitis and emphysema, do 3.2 miles an hour. Sounds to me your lucky and only have bronchitis, to me, emphysema is far worse. You have the right idea how to treat COPD.
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Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 3068
Joined: Feb 07, 2018
@jgpolachek-This sounds as if you have a lot under control. I have both too but I can't tell what is causing what as I have lost about 1/2 of my lung capacity
@bb729 I was placed on Zithromax three times a week m-w-f and it has reduced my flares are way down also. I have to check out the lung flute though to go with it. Always a struggle to get the gunk out and I've just learned to live with it . I also take Sprivia , Advair and 1200 m of mucinex morning and night.
try alldaychemist.
@bb729
In reply to @jgpolachek
A few years back I read some Japanese scientist discovered the same thing in mice and that more studies needed to be done. From what I've seen stem therapy doesn't seem to be toxic. It may not work but shouldn't kill you. Maybe I'm wrong but if not why can't the step up the pace?? I'm ready to be a human mouse 🙂
Liked by alamogal635