@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.
marczappa curious to know if you ever found an answer to this question as I too just asked about stem cell treatments?
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clipper
@clipper
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@justapril marczappa curious to know if you ever found an answer to this question as I too just asked about stem cell treatments?
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.
Bill
@waterboy
@waterboy
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There is a new treatment. FDA approved, ZEPHYR VALVES… GOOGLE IT. The procedure places one way, exhale, in damaged lung making it resembling lung volume reduction surgery without surgical intervention. It will require about 5 days in the hospital.
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Merry, Volunteer Mentor
@merpreb
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@waterboy– Good morning- This has been on the market for about 8 months. I'm not sure how beneficial this has been or how many people it's been used on. It is for sever emphysema. There are a lot of contraindications but I couldn't find how well it is doing. Any idea what the cost has been?
clipper
@clipper
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@merpreb @waterboy– Good morning- This has been on the market for about 8 months. I'm not sure how beneficial this has been or how many people it's been used on. It is for sever emphysema. There are a lot of contraindications but I couldn't find how well it is doing. Any idea what the cost has been?
I know someone that is getting the valves on Wednesday. I have an appointment with Dr Criner at Temple University Lung this Thursday. I will pass on what I learn.
It is for severe to very severe emphysema. https://www.atsjournals.org/doi/10.1164/rccm.201803-0590OC
This article mentions heterogeneous emphysema but they are also using them on patients with homogenous emphysema.
Colleen Young, Connect Director
@colleenyoung
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@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.
Thanks for jumping in @clipper. You're absolutely right. I appreciate your posting these links. I hate to see people throw money at unproven treatments. It is so hard to accept that the promise of regeneration medicine isn't ready yet.
Where evidence shows effectiveness, FDA approval can be expedited, like for the Zephr valves.
– FDA Approves Zephyr Endobronchial Valve For Treating Severe Emphysema https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/1391/FDA-Approves-Zephyr-Endobronchial-Valve-For-Treating-Severe-Emphysema.aspx
All the best with the procedure and yes, please return to tell us about your experience. How long are you expected to be in the hospital?
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Merry, Volunteer Mentor
@merpreb
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@clipper I know someone that is getting the valves on Wednesday. I have an appointment with Dr Criner at Temple University Lung this Thursday. I will pass on what I learn.
It is for severe to very severe emphysema. https://www.atsjournals.org/doi/10.1164/rccm.201803-0590OC
This article mentions heterogeneous emphysema but they are also using them on patients with homogenous emphysema.
Thank you @clipper. This is valuable information and gives hope to everyone with emphysema!
joangma
@joangma
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Posts: 53
Joined: Aug 27, 2018
thanks for the tip bill going there now.
Will the VA approve it
clipper
@clipper
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@colleenyoung Thanks for jumping in @clipper. You're absolutely right. I appreciate your posting these links. I hate to see people throw money at unproven treatments. It is so hard to accept that the promise of regeneration medicine isn't ready yet.
Where evidence shows effectiveness, FDA approval can be expedited, like for the Zephr valves.
– FDA Approves Zephyr Endobronchial Valve For Treating Severe Emphysema https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/1391/FDA-Approves-Zephyr-Endobronchial-Valve-For-Treating-Severe-Emphysema.aspx
All the best with the procedure and yes, please return to tell us about your experience. How long are you expected to be in the hospital?
I am going for my first consult Thursday. If the first appointment goes well then I believe there will be a series of tests to determine if I really am a candidate or not. It could be weeks/months before I know.
I believe the procedure takes about an hour and it is a 5 day stay in the hospital. They keep you that long for observation in case of complications.
I will be sure to post about it.
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clipper
@clipper
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@walkro9 Will the VA approve it
I don’t know about the VA. There aren’t that many hospitals doing it yet. I am sure in time more and more hospitable will offer it.
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@clipper I don’t know about the VA. There aren’t that many hospitals doing it yet. I am sure in time more and more hospitable will offer it.
I would wondering if they would take on a test patient that can’t afford the procedure, I had a broncostamie done n I got a fungal infection that almost killed me, before I had the procedure I could breathe and know I can’t n I went from 110 lbs to my regular weight n I have a very strong heart that kept me going I’ll do anything to
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clipper
@clipper
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@walkro9 I would wondering if they would take on a test patient that can’t afford the procedure, I had a broncostamie done n I got a fungal infection that almost killed me, before I had the procedure I could breathe and know I can’t n I went from 110 lbs to my regular weight n I have a very strong heart that kept me going I’ll do anything to
You could talk to your pulmonologist, maybe they can help you locate a hospital doing the Zephyr valve procedure in your area. That is how I would go about it.
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Merry, Volunteer Mentor
@merpreb
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@walkro9 I would wondering if they would take on a test patient that can’t afford the procedure, I had a broncostamie done n I got a fungal infection that almost killed me, before I had the procedure I could breathe and know I can’t n I went from 110 lbs to my regular weight n I have a very strong heart that kept me going I’ll do anything to
@walkro9 and @clipper – I know that it seems redundant but please use a person's name at the beginning of each conversation. There are so many posts that after a while it gets confusing. Thank you
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@joangma
In reply to @colleenyoung
there is a vibrating vest that works well, and a vibrating hand held breathing device also not much for cure as of yet besides lung replacement.