clipper
@clipper
@clipper
Posts: 26
Joined: Mar 22, 2017
@merry I did meet with Dr Criner at Temple U Lung Center today regarding the Zephyr valves. I was informed that Medicare does cover the cost of the procedure. The process to determine if a person is a good candidate is a bit involved. Based on the first meeting I might be a candidate, now have to go through a long list of tests before there is a final decision.
This procedure is for people with emphysema who have a problem with residual air volume, hyper inflated lungs. It is basically lung volume reduction surgery without the surgery.
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@merpreb
@merpreb
Posts: 2929
Joined: Feb 07, 2018
@clipper I am going to jump in here. At this time time there are no legitimate, effective FDA approved stem cell treatments. Unfortunately the private companies that offer stem cell treatments are not proven to be effective nor are they proven to be safe. There are lawsuits and the FDA is attempting to shut them down. Here are links to official statements on stem cell treatment by reliable trustworthy organizations…
American Lung Association https://www.lung.org/our-initiatives/research/about-our-research/stem-cell-therapy.html
COPD Foudnation https://www.copdfoundation.org/Take-Action/COPD-Policy-Issues/COPD-Foundation-Position-on-Stem-Cell-Therapy.aspx
FDA https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm
And an assembly of world wide organizations https://www.thoracic.org/members/assemblies/assemblies/rcmb/working-groups/stem-cell/resources/statement-on-unproven-stem-cell-interventions-for-lung-diseases.pdf
There is legitimate stem cell research being done so we might have an option in the future but unfortunately not today.
Hello Clipper@Clipper. I do realize there are no approved treatments or procedures available in the United States for COPD. Many Dr's in America are offering to do these procedures over the border in Mexico and charging $12 to $15 thousand dollars per treatment and claim you will need at least 3 treatments. Many hospitals and Clinics in Mexico are offering Umbilical stem cell treatments in Mexico and other Countries for $3,000 to $5,000 and tell you 1 treatment is sufficienent. There are a lot of fakes out there so I really have to do my homework. Many have gone over the border for hip, knee and shoulder procedures and many have had great success. Not all but just like other treatments not all work for all people.
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clipper
@clipper
@clipper
Posts: 26
Joined: Mar 22, 2017
@justapril Hello Clipper@Clipper. I do realize there are no approved treatments or procedures available in the United States for COPD. Many Dr's in America are offering to do these procedures over the border in Mexico and charging $12 to $15 thousand dollars per treatment and claim you will need at least 3 treatments. Many hospitals and Clinics in Mexico are offering Umbilical stem cell treatments in Mexico and other Countries for $3,000 to $5,000 and tell you 1 treatment is sufficienent. There are a lot of fakes out there so I really have to do my homework. Many have gone over the border for hip, knee and shoulder procedures and many have had great success. Not all but just like other treatments not all work for all people.
@justapril Hi, there are approved procedures in the US just not stem cell therapy as of yet. The existing stem cell therapies do not work and because there have been no valid clinical studies the potiential risks are unknown. It is unproven science, people should not be wasting money they need to pay medication that does help.
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Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 2929
Joined: Feb 07, 2018
clipper
@clipper
@clipper
Posts: 26
Joined: Mar 22, 2017
@merpreb @clipper– Hello. This is very interesting. Are there studies that you can point me to that indicate that they don't work? I'd love to read more about this procedure.
@merpreb There are no clinical studies, it can’t even get that far but there is early research and they are making progress. There have been a few articles on the topic but no true clinical studies, it’s just not there yet. I have to run now but this afternoon I will dig some of those links and post them.
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@merpreb
@merpreb
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clipper
@clipper
@clipper
Posts: 26
Joined: Mar 22, 2017
I hope my posts weren't too abrupt, I was rushing to get out the door. I also didn't mean to imply it won't ever work, just that the companies selling stem cell therapy today have not undergone robust clinical studies showing it to be effective. All the class action lawsuits against the company selling it in the US would suggest otherwise.If you look at where the real science is today, it is very hard to imagine that anyone has a full blown successful stem cell therapy for lung disease.
I also need to correct something, there are clinical studies underway. There are 39 clinical studies, 14 are active. There are 12 studies that have completed, only two have published results. When results are published, it is usually because they don't have any. One of the two is the Lung Institute, the company that the FDA is trying shut down. The other one was a study done in Brazil and was legit but it was an open, non-randomized study with only 4 patients. It doesn't much look like much came from that.
However there is a lot of valid research going on so it remains hopeful. Here are some useful links I tried to keep it current, nothing older than 2017.
Feb 2018 Researchers have identified a lung stem cell that repairs the organ's gas exchange compartment, according to a new study from the Perelman School of Medicine at the University of Pennsylvania.
https://www.sciencedaily.com/releases/2018/02/180228131106.htm
https://copdnewstoday.com/2018/03/06/copd-newly-identified-stem-cells-can-restore-lung-alveoli-mice/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6146161/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5864644/
https://med.stanford.edu/news/all-news/2017/11/researchers-find-lung-stem-cell-heal-lung-injury-in-mice.html
https://www.pulmonologyadvisor.com/home/topics/copd/adipose-tissue-transfer-lung-scaffolds-the-future-of-stem-cells-in-copd/2/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5829274/
fracturedd
@fracturedd
@fracturedd
Posts: 47
Joined: Mar 01, 2019
@clipper I hope my posts weren't too abrupt, I was rushing to get out the door. I also didn't mean to imply it won't ever work, just that the companies selling stem cell therapy today have not undergone robust clinical studies showing it to be effective. All the class action lawsuits against the company selling it in the US would suggest otherwise.If you look at where the real science is today, it is very hard to imagine that anyone has a full blown successful stem cell therapy for lung disease.
I also need to correct something, there are clinical studies underway. There are 39 clinical studies, 14 are active. There are 12 studies that have completed, only two have published results. When results are published, it is usually because they don't have any. One of the two is the Lung Institute, the company that the FDA is trying shut down. The other one was a study done in Brazil and was legit but it was an open, non-randomized study with only 4 patients. It doesn't much look like much came from that.
However there is a lot of valid research going on so it remains hopeful. Here are some useful links I tried to keep it current, nothing older than 2017.
Feb 2018 Researchers have identified a lung stem cell that repairs the organ's gas exchange compartment, according to a new study from the Perelman School of Medicine at the University of Pennsylvania.
https://www.sciencedaily.com/releases/2018/02/180228131106.htm
https://copdnewstoday.com/2018/03/06/copd-newly-identified-stem-cells-can-restore-lung-alveoli-mice/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6146161/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5864644/
https://med.stanford.edu/news/all-news/2017/11/researchers-find-lung-stem-cell-heal-lung-injury-in-mice.html
https://www.pulmonologyadvisor.com/home/topics/copd/adipose-tissue-transfer-lung-scaffolds-the-future-of-stem-cells-in-copd/2/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5829274/
I looked into stem cell treatment a while back. My pulmonoligist was definitely not on board. The patient coordinator was pretty helpful. His name was Sal Ingrassia. The lung Institute. I think they have multiple locations.
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joangma
@joangma
@joangma
Posts: 86
Joined: Aug 27, 2018
there is good news there is STEM CELL and now ZEPHER VALVES talk to your doctors about these new break thru devices. good luck god bless you all. I have copd myself.
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@merpreb
@merpreb
Posts: 2929
Joined: Feb 07, 2018
@clipper I hope my posts weren't too abrupt, I was rushing to get out the door. I also didn't mean to imply it won't ever work, just that the companies selling stem cell therapy today have not undergone robust clinical studies showing it to be effective. All the class action lawsuits against the company selling it in the US would suggest otherwise.If you look at where the real science is today, it is very hard to imagine that anyone has a full blown successful stem cell therapy for lung disease.
I also need to correct something, there are clinical studies underway. There are 39 clinical studies, 14 are active. There are 12 studies that have completed, only two have published results. When results are published, it is usually because they don't have any. One of the two is the Lung Institute, the company that the FDA is trying shut down. The other one was a study done in Brazil and was legit but it was an open, non-randomized study with only 4 patients. It doesn't much look like much came from that.
However there is a lot of valid research going on so it remains hopeful. Here are some useful links I tried to keep it current, nothing older than 2017.
Feb 2018 Researchers have identified a lung stem cell that repairs the organ's gas exchange compartment, according to a new study from the Perelman School of Medicine at the University of Pennsylvania.
https://www.sciencedaily.com/releases/2018/02/180228131106.htm
https://copdnewstoday.com/2018/03/06/copd-newly-identified-stem-cells-can-restore-lung-alveoli-mice/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6146161/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5864644/
https://med.stanford.edu/news/all-news/2017/11/researchers-find-lung-stem-cell-heal-lung-injury-in-mice.html
https://www.pulmonologyadvisor.com/home/topics/copd/adipose-tissue-transfer-lung-scaffolds-the-future-of-stem-cells-in-copd/2/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5829274/
@clipper– good morning. I didn't find that you were abrupt at all. Thank you for your hard work in your research. What a wealth of information and hope you have given all of us. Thank you. It's exciting to see medical advances happen in front of your eyes isn't it! To be able to freely breathe again, or near it is the future!
clipper
@clipper
@clipper
Posts: 26
Joined: Mar 22, 2017
@merpreb @clipper– good morning. I didn't find that you were abrupt at all. Thank you for your hard work in your research. What a wealth of information and hope you have given all of us. Thank you. It's exciting to see medical advances happen in front of your eyes isn't it! To be able to freely breathe again, or near it is the future!
@merpreb
Morning. There is lots of really great research going on. We should all have hope, real science is amazing and the field of regenerative medicine will get us there.
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@merpreb
@merpreb
Posts: 2929
Joined: Feb 07, 2018
@marczappa Just joined to try and see if COPD/ Asthma, Emphysema can be helped by Stem Cell treatments . While medication has helped somewhat I am uncomfortable and short of breath most of the time.
Marc; I've read Dr. Morrisey at Penn University found that AEP stem cells will regrow alveoli in mice. I also read where Mayo can produce millions of stem cells quickly. I would like them to get together and see if they could help each other find a cure.
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@walkro9
In reply to @merpreb
Rob walker when I get up I need a Xanax n a shot of morphine just to get out of bed