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Thread: Update on my results from the RENEW Study for Coils at Beth Israel, Boston

  1. #31
    Join Date
    Aug 2013
    Location
    South Africa
    Posts
    9

    Default Coils / Stem Cell Treatments

    Quote Originally Posted by barbara View Post
    Thanks for the update Jeannine. Margz - How are you doing?
    Hi Barbara, Its been 9 months since my coil placements and I can't say that I feel a great difference in my breathing. I have however been of cortisone for 6 months and have lost 12 kg and that I feel has given me extra energy and I feel and can go a bit further now. I had stem cell treatment at the lung institute in Tampa bay in July 2013 and am considering going for another treatment, but really need your advise as I know you are more into the stem cell treatments and have a great deal of knowledge in that area. It is a 17 + hour flight for me from South Africa so I would appreciate your view on me taking a second shot at this.. After the first treatment I did feel great for 6 months then it seemed to wane.

  2. #32
    Join Date
    May 2007
    Posts
    12,653
    Blog Entries
    5

    Default

    Margz - Sorry to hear that the coils didn't do much (if anything) for you. I think as with anything a lot has to do with each individual's condition as to whether or not improvements are seen.

    As for more stem cell treatment, personally I would never be able to make a 17+ hour flight, so I don't feel as if I could advise you on whether or not you should undertake it. It sounds like your first treatment was beneficial. That doesn't always guarantee results on a second go round however, but I am a believer that stem cell treatment has kept me from being completely debilitated. I did not stop at one treatment.

    This is really a personal decision that only you can make however.
    First treatment in 2007. Pioneering ever since.

    Barbara

  3. #33

    Default

    Hi Jeannine,
    Thanks for the update on your lvrc procedure. Have been following your posts here and glad to hear your doing great after a rocky start. I was in the control group and the 7th of this month had my first procedure done in the follow-on trial. I'm pleased to report that my results have been all that I had hoped for. I havent done any follow up testing yet but I do know that my O2 stats have increased at least 4 pts. I still get sob with exertion but I'm able to do more with a shorter recovery period. Looking forward to my 2nd lung being done on the 25th of Aug.
    Bill in Nor-Cal

  4. #34
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,977
    Blog Entries
    1

    Default

    Hi Bill

    Thank you for sharing your results. It is definitely a life saving procedure and I hope it is fast tracked within the next year so more people can be given the opportunity. For me, the second set seemed to see the most improvement. Please keep us posted and best of luck on your next procedure.

    There are several other people I know who are in the study who have recently gotten or will be getting them soon. They belong to a group on Facebook called COPD - New Treatments and Advice. I started the group to track the progress of people receiving coils and valves and any new trials coming up.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  5. #35

    Default Pulmonary diseases

    Hello Jeannine
    I hope so that you will get better results next time. Further, stem cell therapy is an effective treatment option available for lung disorders. So, why donít you try this. I have heard about a company called Advancells, providing these treatments successfully.

  6. #36
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,977
    Blog Entries
    1

    Default Update to coil trial.

    It has been over 15 months since my first coils were inserted and 9 months since the second set. I am still holding my own. FEV is 35% (21% before coils). I can shower without much trouble and am keeping active without any major problems. I have been told that pneumrx is in the process of submitting the results to the FDA. Let's hope they fast track this.

    The valve trial is still recruiting for anyone who might be interested. Here is a link to the locations.

    https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  7. #37

    Default

    Wonderful news Jeannine. I can't get the link to work however about the ongoing valve trials.

  8. #38
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,977
    Blog Entries
    1

    Default

    Maybe this link will work better.

    https://clinicaltrials.gov/ct2/resul...&Search=Searchhttps://clinicaltrials.gov/ct2/resul...&Search=Search



    Quote Originally Posted by Donna View Post
    Wonderful news Jeannine. I can't get the link to work however about the ongoing valve trials.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  9. #39
    Join Date
    Aug 2013
    Location
    South Africa
    Posts
    9

    Default RENEW Coils

    Quote Originally Posted by Jeannine View Post
    It has been over 15 months since my first coils were inserted and 9 months since the second set. I am still holding my own. FEV is 35% (21% before coils). I can shower without much trouble and am keeping active without any major problems. I have been told that pneumrx is in the process of submitting the results to the FDA. Let's hope they fast track this.

    The valve trial is still recruiting for anyone who might be interested. Here is a link to the locations.

    https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
    That's is fantastic news Jeannine, so If my understanding is correct, the put 2 sets of coils into your lungs, so you have 20 in each lung. I'm getting a call today from Tampa Lung institute to chat about more stem cell. This time the bone marrow one. have you have this stem cell before. I've only had the blood. I hope its not too much different. It is a long way to come but I'll have my portable O2 with me and make use of wheelchair.

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