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Thread: Splinda (Linda) Going to Bioheart in Sunrise FL for Clinical Trial for COPD

  1. #1
    Join Date
    Feb 2015
    Location
    Pensacola Florida
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    3

    Default Splinda (Linda) Going to Bioheart in Sunrise FL for Clinical Trial for COPD

    Hi all,
    I'm Linda from Pensacola FL. I was recently diagnosed with stage 4 COPD . I have been on O2 for a year now and the last FEV1 was 37%
    The last six months have been very challenging as the cough and shortness of breath have gotten noticeably worse. My husband came upon the Stem Cell Transplant Therapy as a possible treatment for my condition last year and has been looking for the best one he could find in FL. I have been accepted and so far medically cleared to receive the treatment this month. Bioheart has been very honest about the possible side effects and possible benefits of the treatment. My Lung Dr has signed off on the trial as it is FDA approved. We are going with lots of hope and prayers for the best outcome. We have gotten a lot of useful information and technical advise from this site and thank everyone here. Thank Linda & Gary

  2. #2
    Join Date
    May 2007
    Location
    New Hampshire
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    Default

    Best of luck to you. Please come back after treatment and let us know how you are doing.
    Quote Originally Posted by Splinda View Post
    Hi all,
    I'm Linda from Pensacola FL. I was recently diagnosed with stage 4 COPD . I have been on O2 for a year now and the last FEV1 was 37%
    The last six months have been very challenging as the cough and shortness of breath have gotten noticeably worse. My husband came upon the Stem Cell Transplant Therapy as a possible treatment for my condition last year and has been looking for the best one he could find in FL. I have been accepted and so far medically cleared to receive the treatment this month. Bioheart has been very honest about the possible side effects and possible benefits of the treatment. My Lung Dr has signed off on the trial as it is FDA approved. We are going with lots of hope and prayers for the best outcome. We have gotten a lot of useful information and technical advise from this site and thank everyone here. Thank Linda & Gary
    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

  3. #3
    Join Date
    May 2007
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    Default

    Thank you. Jeannine and co-founded the Stem Cell Pioneers in 2007. It's hard to believe it was that long ago. I hope your treatment goes well. Looking forward to hearing all about it.
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #4

    Default reply

    Something doesn't sound right ! I was unaware the FDA was approving trials for COPD.
    ------------------------------------------------------------------------------------------------------------
    P.S. My fev'1 was 33 and is now 36 with only minor changes . I'm very active such as climbing a few small trees to trim them, with an oxygen bottle on my hip and many other tasks so don't rely to much on the numbers ; When I get exhausted I just fall down and wait to recover my breath.
    (No joking) I really have done this a time or 2.
    I have pictures of me up in the tree .

    Wish you the best !

  5. #5
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    Default

    grimm - Thanks for bringing this up so that I can explain it for everyone. Your input is always appreciated so stay safe and out of those trees!

    To clear things up:

    For the COPD study, Bioheart works under a FDA compliant IRB. Institutional Review Boards are responsible for continuing review of ongoing research to ensure that the rights and welfare of human subjects are protected. FDA regulations require that continuing review of research be conducted at intervals appropriate to the degree of risk, but not less than once per year[21 CFR 56.108(a)(1) and 56.190(f)]. The frequency and extent of continuing review for each study will be adequate to ensure the rights and welfare of research subjects, and will be documented in the initial approval letter.

    Bioheart does have a FDA phase 3 MARVEL Trial for congestive heart failure patients. It's budgeted to cost $10 million dollars for 100 patients. The trial is a double blind placebo controlled trial which is not what the COPD study is.


    Also, if anyone missed this month's Ask the Doctor, Kristin Comella, CSO of Bioheart was the host.


    http://www.stemcellpioneers.com/show...a-Bioheart-Inc
    First treatment in 2007. Pioneering ever since.

    Barbara

  6. #6
    Join Date
    Feb 2015
    Location
    Pensacola Florida
    Posts
    3

    Default Splinda Stem Call Treatment update.

    In February this year we drove to Sunrise Florida for Linda's first stem cell treatment from the US Stem Cell Clinic. Not wanting to imagine any improvement that may have been gained, I waited until I could be positive that there was definite improvement in her condition. I can now say that her fatigue has improved at least by 40% and that her 02 use has gone from 24/7 to only when she is doing laundry, making the bed, cooking, and walking in the yard (which she hasn't been able to do for the last 8 months). She can complete the 6 minute walk with her 02 concentrator again and has gone many nights sleeping without 02 at all (sitting without 02 on, she is at 93% again). I don't think this is a placebo effect and hopeful that its not. The best news is the constant cough has all but stopped and no infections so far! We are looking forward to next treatment in August or September, depending on how well she is doing. For us, we feel we may have found a real way to slow this terrible disease down.

  7. #7
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    Default

    What wonderful news! I'm sure the naysayers would say it was the placebo effect, but she knows, you know and most of us who have this horrible disease and have had treatments that have helped us, know that's not true.

    Is she participating in their clinical study or did they just recommend a follow up treatment in August or September or is it something she just wants to have done?

    Now that she is able to be more active again, this will also help improve her health. That's another indirect benefit of stem cell treatment. Keep giving us good news!! Thank you for the update.
    First treatment in 2007. Pioneering ever since.

    Barbara

  8. #8
    Join Date
    Oct 2015
    Location
    Florida
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    Default How Many treatments do they recommend and at what cost?

    Quote Originally Posted by Splinda View Post
    In February this year we drove to Sunrise Florida for Linda's first stem cell treatment from the US Stem Cell Clinic. Not wanting to imagine any improvement that may have been gained, I waited until I could be positive that there was definite improvement in her condition. I can now say that her fatigue has improved at least by 40% and that her 02 use has gone from 24/7 to only when she is doing laundry, making the bed, cooking, and walking in the yard (which she hasn't been able to do for the last 8 months). She can complete the 6 minute walk with her 02 concentrator again and has gone many nights sleeping without 02 at all (sitting without 02 on, she is at 93% again). I don't think this is a placebo effect and hopeful that its not. The best news is the constant cough has all but stopped and no infections so far! We are looking forward to next treatment in August or September, depending on how well she is doing. For us, we feel we may have found a real way to slow this terrible disease down.
    So glad you're improving.
    stemcellenthusiaist

  9. #9
    Join Date
    Dec 2015
    Location
    Silicon Valley, CA
    Posts
    12

    Default Introduction and Questions - Splinda's thread from Feb and August 2015

    Good morning:

    My name is Joanne, and I'm from Silicon Valley, CA. As part of trying to educate myself on the benefits of stem cell treatments for COPD (mine results from a birth defect which caused asthma / pneumomia, and which has repeatedly damaged my lungs over the years), I am also noticing that there may be a need for repeated treatments if one goes the stem cell route.

    I am considering services from The Lung Institute located in Arizona, and at $7,500 per treatment, minimum, My doctor would prefer I wait 6 months to a year for considering treatment, vs. being an "early adopter".

    So, I am very interested to learn from you what results you saw from the August treatment, if it was completed, and if additional stem cell treatment therapies are advised. I am hopeful that things are continuing to go well for you.

    Regards,
    Joanne

  10. #10
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    May 2007
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    Default

    Welcome to the forum careyje - I'm not sure what "early adopter" means, but considering that the FDA does not allow for the expansion of stem cells for treatment with our own stem cells in the U.S., it will most likely be years before treatments that may help regenerate lungs will be available here. Right now, treatments are helping with quality of life improvements for some patients. Dr. Grossman addressed the question when he hosted Ask the Doctor. Here is his response:


    Q: Why do some patients seem to respond so much better than others? I have heard of COPD patients who have had multiple treatments and feel no real change (either way which could be argued is good), but then I read about other patients who seem to have gotten a lot of improvements and have become active once again. Is it age or do some people have more stem cells than others or is it how the treatment is done and the stem cells are processed?
    A: COPD represents a broad spectrum of disease states and includes patients who have more of an emphysema-like condition while for others chronic bronchitis is more dominant. Patients with more of the emphysema component have already experienced loss of the alveolar walls, which is where oxygen exchange in the lungs occurs. Regenerative therapies, at least at this early stage in their development, do not seem able to re-grow damaged alveoli. As a result, patients with predominantly an emphysema component to their disease would be less likely to experience benefit. Other patients have more of a chronic bronchitis aspect with airway inflammation and mucus production being hallmarks of their condition. Regenerative therapies utilizing adipose tissue possess anti-inflammatory properties, which theoretically could be of value treating these types of conditions. We would therefore expect this group to respond better. COPD patients typically fall somewhere between these extremes and have components of each. Depending on where you are on the spectrum can help determine how much improvement regenerative therapy might have on your condition.
    First treatment in 2007. Pioneering ever since.

    Barbara

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