Bronchiectasis - Stem Cell treatment

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I live in the states and attended a webinar concerning the use of stem cells for the treatment of bronchiectasis.  It was very informative.

They remove stem cell from the patient, treat the cells, then put them back into the patient.  The new cells will gravitate toward the scared cells in the lungs and start to repare the scared issue.  It won't improve the airways, but will lower infections and improve lung function.

Since its research, insurance won't cover it. It can cost from $7,500 - $12,000.

Has anyone had any knowledge of Stem Cell Research?

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  • Posted

    So you can actually have this procedure done if you can afford it??

    I would try anything. I have not long finished 3 weeks of ivs an I'm back in bed coughing up blood for 2 days and feeling very weak.

    I'm at the end of my tether with it all if I'm honest. Please advise Elizabeth.

    Thanks Rachel

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    • Posted

      It may best to do a bit of research before making a decision on this Rachel as the treatment is in its early stages of development - I'll be looking on line to find out more, but the success rate may not yet be known.

      John

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    • Posted

      Hi John

      I agree with what yr saying. I'm clutching at straws at the moment and any developments can only be a good thing.

      I'm so poorly and just want to feel well again. I'm only 47 and used to run 3/4 times a week and I've always tried to maintain good health but now it's an effort to get out of bed some days. My main problem is the pseudomonus bug that I can't get rid of and it's making me feel unwell. I'm now waiting on starting another course of ivs.

      It's lovely to talk to others who suffer with bronchiectasis..

      Kind regard

      Rachel

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    • Posted

      If you are coughing up blood, you need to see a doctor asap.

      Do you live in the United States?

      You have to go thru a screening first: are you cancer free, do you have diebetes, do you take blood thinners, etc.

      The clinics are in Scottdale, Arizona, Tampa, Florida, Pittsburg, PA and Nashville, TN. The cost of a hotel room is included in the price of treatment.  The treatment takes place over 3 days as an out patient.

      If you go to the web and google: stem cell research for bronchiectasis, it will show The Lung Institute.  Click on their website.

       

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  • Posted

    This is very interesting Elizabeth, thank you.  When were the trials done for this procedure do you know and how many bronchs took part in the trials?  Is this generally available in the States?  Did they also say in the webinar how long before any repair and improvement in infection frequency can be expected or has been found.  Sorry for so many questions hun but I am passionate about the renewed interest in NCFBE, the 'Inhaled Drugs for Bad Bugs' trials in Europe and the 50m euros is so exciting after decades of bronch being the orphan condition of the respiratory world, and I have lived through those decades with bronch.

    Thank you once again.

    Love c x

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    • Posted

      Cofalot,

      There are 4 clinics in different areas of the states.  They have been doing this research for 3 yrs, so there is no knowledge of long term results.  They didn't say how many bronchiectasis cases they have treated.  But they treat 1,000-1,500 cases of pulomary illnesses a year.

      It takes about 3 months to notice an improvement, and you need to be checked every 6 months or so.  Sometimes people will need a second or third treatment in the following year or so.

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  • Posted

    It's good to know of these developments Elizabeth. Stem cell treatment is still quite new and the effectiveness may not yet be fully understood. Did they give any information on the side effects and the success rate at the webinar? In the UK there is rigorous testing of all drugs and treatments before they are approved for use by our National Health Service. But at least there is some light on the horizon for sufferers of this horrible disease. I am not sure what the difference is between improving lung function but not airways - are they not the same thing? Do you have the web address you could post?

    John

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  • Posted

    It's good to know of these developments Elizabeth. Stem cell treatment is still quite new and the effectiveness may not yet be fully understood. Did they give any information on the side effects and the success rate at the webinar? In the UK there is rigorous testing of all drugs and treatments before they are approved for use by our National Health Service. But at least there is some light on the horizon for sufferers of this horrible disease. I am not sure what the difference is between improving lung function but not airways - are they not the same thing? Do you have the web address you could post?

    John

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    • Posted

      I don't think we can post website at this forum. But if you go to the web and google; stem cell research for bronchiectasis, the Lung Institute will be brought up, it seems to be the only one involved with stem cell and pulomary illnesses.
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  • Posted

    Well, I signed up for Stem Cell Treatment. It will take place at the end of December.  We will be heading south for the month of January and a clinic is on the way.  I choose the more aggressive procedure, using my bone morrow.  Unfortunatly, it takes 3 months to notice any changes.

    Elizabeth

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    • Posted

      Hi Elizabeth

      Good luck with the treatment. Can you please keep me posted on how you get on. I'm so interested in what your doing I didn't even think it was possible yet!

      Kind regards

      Rachel

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    • Posted

      I bet you are! My main problem is the pseudomonus bug. They can't seem to get the levels under control. I did 3 wks of ivs just over 3 wks ago and now I'm travelling to Papworth hospital (its a well recognised hospital in the uk that just deals soley with heart & lungs) week for a stint to see if they can sort me out. This is my 6 lot of ivs this year an I'm fed up of feeling poorly!

      Your post has given me hope that one day my lungs could be better!

      Rachel ☺

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    • Posted

      I hope they can give you additional treatment and/or meds.  I went to the Mayo Clinic here in the states earlier this year.  Mayo has the best of the best doctors.  They were able to give me a different perspective and advice toward this illness.  So I hope you get additional knowledge to treat this illness.
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  • Posted

    Hi Elizabeth

    This is so exciting and I am pleased for you.  I am hoping nothing but the best for you.  Please let us know how you get on.  Will be with you all the way, rooting for you.

    Love cx

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    • Posted

      Thanks,

      I have really enjoyed this website and just knowing that there are people out there that truely understand what I'm going thru.

      My husband, family and friends understand my illness and are supportive, but unless they have gone thru what we have, they truly don't understand how depressing this illness is.

      All that I am hoping for is this stem cell treatment will, at least, slow down the progressiveness of this illness.

      Thanks for the support, Elizabeth

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    • Posted

      Hi Elizabeth,

      Have you looked at the COPD Foundation website? It has got a good discussion on stem cell treatment. It's not approved by the FDA in the States and the copd foundation discussion raises serious concerns about the treatment. Apparently there is no evidence that suggests stem cell treatment has any benefits, and in fact they provided examples of it doing harm. They also question the ethics of providing this expensive treatment without evidence of effectiveness. The treatment has been provided in Mexico for several years, and now the organisations have moved into the southern states.

      We would all love to believe in this 'miricle' cure, but I suggest caution at this stage, particularly when you live in the States where medical treatment is provided for profit. The only evidence I was able to find was a study done in mice in 2011 in Boston.- nothing since. Please look further into this before proceding.

      John

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    • Posted

      John,

      I have looked at other websites, in fact, one clinic in Chicago, called me back and after talking to her, she also recommended the Lung Institute.

      This is all based on research, but I'm willing to try it and hope that it helps. It's not a cure, just a slowing down on the progression, and best case an improvement of the lung function, resulting in less infections that leads to scaring. It does not help in the repair of the airway walls weakness.

      I'm taking a leap of faith, Elizabeth

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    • Posted

      Glad to hear that you're going into this with your eyes open Elizabeth, and that you are realistic about what can be achieved. I'm sure all who contribute to this website will be hoping for your treatment to be a success, and I look forward to hearing about it.

      Best wishes,

      John

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