Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 2903
Joined: Feb 07, 2018
@joelars Mayo did just what you described-they grew millions of stem cells and "introduced" them into the lungs of COPD sufferers. (As I said) only 5-10% really benefited. They (Mayo researchers) have "no clue" as to why the results weren't better. Mayo is planning to re-run the trial as early as this summer. I have asked to be included. While the people who obtained significant improvement was small, no one has had adverse side-effects. I understand that is because we use our own stem cells "foreign" or donor cells are not used so rejection wouldn't be a side effect. However, I understand that the quality of the stem cells may be related to the extent inf lung injury, therefore severe lung damage may not be suitable for effective stem cell harvesting-but that is something I read in the literature. I have no medical training, and the Mayo researcher I spoke with did not offer that as a reason for the disappointing result.
@joelars, @justapril,@jgpolachek, @hazelnut – Good morning. I don't know if any of these will help you but give a look. https://stemcellsportal.com/clinical_trials_lung_disease
Unfortunately stem cell research for lungs has a ways to go. But looking at all of these different trials is certainly encouraging.
Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 2903
Joined: Feb 07, 2018
@justapril See above
justapril- Please use @ and names. It gets very confusing with all of the posts we see during the day. It will help us a lot. thank you
joangma
@joangma
@joangma
Posts: 86
Joined: Aug 27, 2018
@hazelnut I have a friend that suffers from pulmonary hypertension and also COPD and emphysema. I understand that many lung treatments concerning stem cell are covered by insurance. But, the FDA has not approved stem cell procedures for knees and hip problems. I have also been told that medical cannabis also helps many with lung conditions. Anyone have info on either comment? Thank you.
let me know what you hear on medical cannabis for my copd thanks alot
joangma
@joangma
@joangma
Posts: 86
Joined: Aug 27, 2018
@justapril jgpolachek there are stem cells in all areas of our bodies. If someone is in their early 20's so are their stem cells. I am 66 so my stem cells will not be as active as a younger persons and may not work as well or at all. For this reason I am choosing to use Umbilical Cord stem cells. Hopefully from the placenta. Umbilical Cord stem cells come from women who have delivered a healthy baby by Cesarean section and have donated the afterbirth to help either science or people like me to have a fighting chance at life. Some people save their cord blood for use by the family. In the United States they can only use your own stem cells to treat you with. The stem cells come from either your fat or bone marrow. I have read of many people being helped by their own stem cells though they may have to get it done every 5-7 years. Since I can only have treatment by raising enough money to get it done I will only be able to do this one time. I have done a lot of research and I've seen where those who have used Umbilical Cord stem cells have shown better results and have only done one treatment. Unless they are having something else done. Such as had hip done now going to look younger. Ect. I had read that the Mayo Clinic used people's own stem cells in the trial and that may be why their results were not as good.
thanks if u hear anything new please advise
joangma
@joangma
@joangma
Posts: 86
Joined: Aug 27, 2018
@justapril I have both bronchitis and emphysema as well. I am on oxygen 24/7 and I hate using it so much. I honestly believe my only option will be stem cell therapy outside of the United States where it is legal to use Umbilical Cord Placenta stem cells as they offer the best possible help for COPD from what I have read. Sadly I am still working on raising money on Gofundme to help pay for the treatment. Best of luck to all of us dealing with COPD.
is the gofundme approach doing you any good at all. thank you
@joangma thanks if u hear anything new please advise
my advice for now is to google alldaychemist and check out med prices , been using them for ten yerars.
@joangma is the gofundme approach doing you any good at all. thank you
@joangma I have been fortunate to raise about $3,000 so far with what I have raised and what friends have just given to me that I have not deposited yet. I have a couple more ideas that may help me reach my goal. I can get 200 million stem cells for just about $6,500 and about a $1,000 for transportation, food and lodging. So need another $3,500 for treatment. They recommend 300 million stem cells but I'm doubtful my lungs would hold up to the time it would take to raise the additional $4,000. I will feel blessed if I can get 200 million. My son set up my page. If you want to read it it is under April Cyr. Haven't shared that as not sure I'm suppose to. It may be alright since I am not asking you to donate. I'm sure they will let me know if I broke any rules…
@joelars To Justapril
how much is the 300 million and where is the procedure done? Are they posting results, if so where?
Realize, the success achieved with lab mice was not achieved using umbilical stems but adult lung stems (as I interpreted the article). So, it may be (and this is pure speculation) that the health of the stem cells is the issue, not necessarily the age, and that in many COPD patients they have areas of relatively, healthy stem cells that can be used to produce millions more.
Can anyone with medical knowledge clarify?
@joelars I am planning to go to dream body clinic in Puerto Vallarta, Mexico. I believe the cost for 300 million stem cells is $8,000 and I would be there at least 4 days. So far they appear to be the best rated clinic for cleansliness, quality and cost. If you decide to go there joelars please let me know what you think. What are you having treatment for if you don't mind me asking??
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Merry, Volunteer Mentor
@merpreb
@merpreb
Posts: 2903
Joined: Feb 07, 2018
@justapril– Good morning. I love Puerto Vallarta for vacations. But I'm worried about going out of the country for stem cell implantation. In America there hasn't been enough research to even consider it a trust worthy treatment. I haven't heard anything about Mexico being a mecca of medical breakthroughs, so why would you chose to go there?. I don't want to lecture but sometimes when we feel desperate or we think that some thing sounds too good..to be true, it often is.
Please please be careful and really think about this. Have you talked about this with your family or doctors?
Liked by joelars
@merpreb @justapril– Good morning. I love Puerto Vallarta for vacations. But I'm worried about going out of the country for stem cell implantation. In America there hasn't been enough research to even consider it a trust worthy treatment. I haven't heard anything about Mexico being a mecca of medical breakthroughs, so why would you chose to go there?. I don't want to lecture but sometimes when we feel desperate or we think that some thing sounds too good..to be true, it often is.
Please please be careful and really think about this. Have you talked about this with your family or doctors?
Great advice
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@waterboy 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.
I read that yesterday it's FDA approved I wonder does most insurance cover that and there is a risk they say collapsed lung do you know of anyone who had it done.
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@clipper 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.
Temple Lung Center in Philadelphia Pennsylvania
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@debora29 Temple Lung Center in Philadelphia Pennsylvania
It is FDA approved but it's also clinical trail does have risk factor collapsed lung
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@justapril
In reply to @jgpolachek
jgpolachek there are stem cells in all areas of our bodies. If someone is in their early 20's so are their stem cells. I am 66 so my stem cells will not be as active as a younger persons and may not work as well or at all. For this reason I am choosing to use Umbilical Cord stem cells. Hopefully from the placenta. Umbilical Cord stem cells come from women who have delivered a healthy baby by Cesarean section and have donated the afterbirth to help either science or people like me to have a fighting chance at life. Some people save their cord blood for use by the family. In the United States they can only use your own stem cells to treat you with. The stem cells come from either your fat or bone marrow. I have read of many people being helped by their own stem cells though they may have to get it done every 5-7 years. Since I can only have treatment by raising enough money to get it done I will only be able to do this one time. I have done a lot of research and I've seen where those who have used Umbilical Cord stem cells have shown better results and have only done one treatment. Unless they are having something else done. Such as had hip done now going to look younger. Ect. I had read that the Mayo Clinic used people's own stem cells in the trial and that may be why their results were not as good.