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jelrog
@jelrog

Posts: 3
Joined: Feb 13, 2017

Stem cells for Pulmonary Fibrosis

Posted by @jelrog, Feb 13, 2017

Has anyone heard about stem cell implants for pulmonary fibrosis?

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Posted by @colleenyoung, Feb 13, 2017

Welcome to Connect, @jelrog.
At Mayo Clinic, research is leading the development of new regenerative therapies (stem cell therapies) for people with a wide range of lung diseases. Regenerative medicine has the potential to provide innovative new therapies for people with lung diseases, including chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, cystic fibrosis, pulmonary arterial hypertension and bronchiolitis obliterans. You can read more about it here: http://mayocl.in/2ieWfYH

I’m tagging @mike0m @pd02 and @powderpuf as they too were looking into stem cell therapy and pulmonary fibrosis.
Jelrog, how are you currently managing IPF?

jelrog
@jelrog

Posts: 3
Joined: Feb 13, 2017
Posted by @jelrog, Feb 14, 2017

This is for my husband. He has a family medicine doctor; an Allergy and Immunology doctor; a Rheumatology doctor; an Oncology & hematology doctor; and a Pulmomology doctor. These are his medications:

20 mcg Forteo injected daily
IVIG infusion every 28 days
200 mcg Breo daily
75 mg high blood pressure medicine daily
3 liters oxygen continually
nasal sprays

pfists
@pfists

Posts: 58
Joined: Dec 27, 2016
Posted by @pfists, Feb 13, 2017

Yes I have been considering it.
Lunginstitute.com
I thing its pretty expensive and not covered by medical insurance though.
They use your own stem cells from either blood or your fat.

tula
@tula

Posts: 16
Joined: Feb 11, 2017
Posted by @tula, Jul 11, 2017

My pulmonologist said, while stem cells work for some diseases, it doesn’ work for lung disease. You will be given your blood stem cells and spend lots of money, time and effort and it will not help you! A complete sham!

jelrog
@jelrog

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Joined: Feb 13, 2017
Posted by @jelrog, Jul 14, 2017

My husband’s pulmonologist said the very same thing. He actually went and checked one out. He said it is also very difficult for older people to get lung transplants in the U.S.

Posted by @colleenyoung, Oct 26, 2017

I’m reanimating this discussion about stem cell therapy for lung conditions.

It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.

To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

As @tula said, it is early days for lung conditions and stem cell therapy. Do you due diligence before getting treatment.

Posted by @colleenyoung, Oct 26, 2017

I’d also like to direct you to the new Chest Surgery Page on Connect: https://connect.mayoclinic.org/page/chest-surgery/

The thoracic team has written several blogs on regenerative medicine and lung conditions:
– Renaissance in Medicine https://connect.mayoclinic.org/newsfeed-post/renaissance-in-medicine-1/
– Lung Regeneration https://connect.mayoclinic.org/newsfeed-post/lung-regeneration-2/
– Regenerative Medicine Offering New Treatment for Bronchopleural Fistulas https://connect.mayoclinic.org/newsfeed-post/regenerative-medicine-offering-new-treatment-for-bronchopleural-fistulas-1/

robertjr
@robertjr

Posts: 46
Joined: Jul 14, 2017
Posted by @robertjr, Oct 28, 2017

colleen,was just reading about stem cell treatments,vwas also contacted and watched a presentation on stem cell treatments.Right now home from hospital ,forth time this year,starting to get a bit worried,especially for my wife.Am now considered end stage copd and lost my chance for transplant when they found lung cancer 3 years ago.Curious,does stem cell have a wait time after remission like a transplant.I didnt really seem to be that sure stem cells good.

robinson
@robinson

Posts: 11
Joined: Oct 25, 2017
Posted by @robinson, Oct 30, 2017

I’m considering stem cell therapy for treating IPF. Does anyone out there have any experience with this treatment? Does Mayo Clinic do this therapy using your own blood or fat tissue as promoted by the Lung Institute? Many testimonials make this treatment sound valid and helpful. Looking for information and other places that have done this treatment.

oldkarl
@oldkarl

Posts: 354
Joined: May 25, 2016
Posted by @oldkarl, Oct 30, 2017

@robinson You need to go on to the Mayo site and watch a video or ten of their Grand Rounds series about Autologous Stem Cell treatment. Or many other matters, as well. They are a great source of info. Just put Autologous Stem Cell in the search blank space, or Grand Rounds Videos, or even Martha Grogan. She does many of the videos.

Posted by @charlillie, Oct 31, 2017

Although the field of Regenerative Medicine continues to make strides in helping heal the body from within, there is much that science still needs to understand. A safe and effective way to utilize regenerative therapies, such as stem cells, is still being researched. Because of this, Mayo Clinic does not currently offer stem cell treatment for lung diseases. Many for-profit stem cell clinics throughout the United States and the world offer unproven treatments for a multitude of diseases and disorders. Typically, they charge a significant fee for these treatments and many have shown to be ineffective when tested under the rigor of medical research. If you would like to discuss this further or learn more about current research at Mayo Clinic, please call the Regenerative Medicine Consult Service at 1-844-276-2003. An appointment will be scheduled to speak with one of our experts. This service is offered at no charge.

robertjr
@robertjr

Posts: 46
Joined: Jul 14, 2017
Posted by @robertjr, Oct 31, 2017

Charlillie,thanks for info ,going to make a call hopefully tomorrow.

robinson
@robinson

Posts: 11
Joined: Oct 25, 2017
Posted by @robinson, Oct 30, 2017

Ok, thank you oldkarl, I’ll check Autologous Stem Cell

Posted by @colleenyoung, Oct 30, 2017

@robinson and @robertjr, I urge you to call the Regenerative Medicine free Consult Service at 1-844-276-2003. They can answer your specific questions about the status of stem cell therapy for lung conditions such as IPF and COPD. See more about here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration

robertjr
@robertjr

Posts: 46
Joined: Jul 14, 2017
Posted by @robertjr, Oct 31, 2017

Colleen,thanks for answer,going to call this week.Since leaving hospital been visited everyday by a nurse and have my wife and family here.My copd is end stage but once i can get my self so i can start getting more physical tberopy ,hop
efully things will get better.having trouble with broken ribs and foot.At first stem cell sounded great but some answers didnt sound that helpful for me.

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