moving forward

[karl wagner]

I found a call from my doctor at the Mayo yesterday very encouraging. He's writing a paper about how patients are taking matters in there own hands and going out of the country for stem cell treatment and wanted to use my case study. I know that's old news but it's coming from a highly credible doctor that is doing it for something other than monetary gain (as far as i know ). He's the head of the pulmonary division in Jacksonville. I know the minnesota mayo clinic has partially funded a trial very similar to what i got so maybe we will have another trial. The more trials the better. I think it's great to finally get press from the this kind of person. Speaking of press i called the office where i was treated to tell them of this report and they said CNN was interveiwing them this month. They were a little nervous because CNN is not really a unbiased network. I hope they don't turn on them.

 

[barbara]

Karl - I sure hope you will urge your doctor to join ASCTA. The site for doctors is www.stemcelldocs.org Right now, there about 100 doctor members and the number is growing. A very large medical group has also recently expressed interest and that is awesome news. More to come on that soon I hope.

As for CNN, I think they could get the facts wrong about what day of the week it is. Their level of investigative reporting belongs on Saturday Night Live except for the fact that it lacks humor. The good news is that Dr. Feinerman has actually received a lot of support from their pathetic stab at him and many new patient inquiries, so if they do a hatchet job on your doctor, he may well benefit too. In the meantime, Dr. Rader, Casey Nabavi and the likes remain under reported as official kings of Quack.

 

[Chas]

Mayo Clinic

Karl,

Your tying of your Mayo Clinic consultation to your Regenocyte treatment one year ago is very illuminating. The problem for me with Regenocyte is the absense of peer review of the Regenocyte treatments of PAH. Although not a general review, I find the recognition by the Mayo Clinic of the improvement in your condition to be very encouraging.

A difference between us is in age. I am 77, and I believe you are in your 40's. There is a suggestion that the stem cells of older folks are not as potent as those of younger people. I believe this may lead to the use of cord blood cells. Also, I note that the Osiris product Prochymal is derived from younger donors. More to think about.

Our local PAH support group is having a picnic on June 27 with the noted Dr. Micheal McGoon as our guest. I'm also to consult with him on July 15. I plan to show him your message, unless you advise me that it would be inadvisable.

Thanks again for keeping us all informed.

Chas

 

[karl wagner]

Hey barbara, my next e-mail is to Dr. Burger with the stemcelldocs message. I gave him a bunch of sites a year ago this one included but i'm pretty sure I know where they went. I'm just glad to see them coming around.The mayo has a huge stem cell wing now ,all they need is permission. I hope they finally see they could walk there 600 patients across the street and bring 80% of them back two function classes.

Chas, show your doctor anything you want I'm an open book
I was not sure of your meaning of absence of peer review. If it is case studies your looking for most of the patients i talked to were closer to my age than yours at least the ones that made the news with big results but all have had 25% to 50% reduction in pressures. Most of the heart patients your age feel a lot better but it only lasts about three years from what i understand.I believe the heart and pah treatment to be the same only injected in different areas. Do they know what is causing the hypertension or are you classified idiopathic? There treatments are changing all the time.

 

[barbara]

Karl - We would love to have your doctor join the Pioneers as well. There is another doctor that is possibly going to have a great operation going in a large hospital facility very soon. I can't give out details yet, but treatments may even be done that are covered by most insurance companies. Sounds very promising and of course I will let everyone know as soon as I hear more. Yes, indeed a few are coming around.

 

[jnelson296]

Stem Cell Treatment and Mayo Clinic

I was at Mayo Clinic (Rochester) in Dec 2008 for severe COPD. They agreed that I have severe COPD. They had no suggestions for feeling or getting better.

This month, I contacted my doctor at the Mayo Clinic by faxing him an article about Dr. Vina. I asked him to get back to me with his thoughts.

He finally called - almost three weeks later. He didn't have my file in front of him but suggested I come back to Mayo and we consider a lung transplant. He certainly does NOT think seeing Dr. Vina is wise.

Nw remember: I sent the same article to my local GP. He responded immediately: go for it! You have nothing to lose! Just be careful of hepititis, etc.

 

[barbara]

This is pretty typical. I can't understand the enthusiasm personally for surgeons urging us to have lung transplants, heart transplants, etc. when researchers and doctors are on the cutting edge of treatments that won't make us have such things done to save our lives. Many may not be able to wait or feel they have no choice, but those same people also may not qualify for a transplant so I hope to heavens they will try stem cell therapy. If forced to select between the two options of transplant or trying stem cell therapy, this is a decision I made in less than 5 minutes.There is too much promise in stem cell therapy for me right now to think of having surgery that can never be reversed. I also am not swayed by those that would try to scare me out of treatment because I might have to have the treatment outside the U.S.
This is just my 2 cents. I understand and admire anyone that has gone through a transplant, but it just is not for me. Sounds like you are leaning the same way.

 

[Jeannine]

JNELSON

Your story reminds me of what hapened to me in 2006. I was diganosed with severe COPD in Feb 2005 after PFT Tests (FEV1 31% at my local hospital - although in Boston they said it was in the high 20s).

I attended Pulmonary Rehab, took my medcines and was still working, but my pulmo guy insisted I go to Boston to prepare for a lung transplant. I went for the appointment which lasted from 8am to 4pm (I ran out of oxygen while waiting in the room for 3 hours for the doctor to come in). They took me on a 6 minute walk which the nurse told me I was one of the few people that even finished it, but they still wantedto sign me up for the transplant list.
I decided against it. After researching the survival rate of people receiving lung transplants was 45% survival after 5 years and having to take tons of drugs every day I decided if I could walk around for 6 minutes without collapsing I didn't think being carved up was necessary at that time.

I don't think I will consider transplant unless I become unable to leave my house.

 

[ahoquescp]

Stem cell therapy in Asia

Hi, I am very new to the forum, so please pardon me if I ask something that already answered. I am really glad that I found this excellent informative forum. My father has severe COPD, he is on O2. He has been suffering from it for last 10 years. I am encouraged to hear a lot of good news about stem cell therapy. And would appreciate if anyone kindly let me know of any doctor or hospital in India or in Bangkok or in Singapore who dose the procedure. My dad lives in Bangladesh; I prefer to take him in India or Bangkok. Singapore is costly (in Bangladesh standard) but want to take him there if no other choice. I also see a lot about Argentina doctor. Please let me know the details about the Argentina doctor along with any cost estimate (if possible). Thank you for the help. -Alim

 

[barbara]

I believe there is treatment available in India for COPD and also a clinical trial if I recall using stem cell therapy. I will see if I can find out more for you. I believe you are talking about Dr. Fernandez-vina who treats in Argentina and El Salvador. He charges around $18000.00 U.S. I am told and that includes 2 treatment. A good source has indicated that his treatment gives relief for about 50% of patients who get the treatment, although it may not last for a great length of time. Each person is different however and there simply are no long term studies to base the success or failure of these treatments. Those that feel better are certainly enthused about the treatment. I will say that.

 

[danny]

check this trial out..not sure if it has started..it in India

http://www.stempeutics.com/html/clinicaltrials.htm#copd

 

[ahoquescp]

Stem cell therapy in Asia

Thank you so much Barbara and Danny for the quick response. Yes I was talking about Dr. Fernandez-vina. But I thought the success rate is much more than 50%. What is the success rate in USA? Can you also help me with some contact in USA please? I know it would be hugely pricy but see if can afford it for my Dad and if we are lucky enough to get visas. Please do not forget the treatment info in India.
I just submitted and info request in stempeutics.com. Hoping a response soon.
Thanks - Alim

 

[barbara]

I will send you the resource page from the book that Jeannine and I wrote in a private message. It will give you information on several companies you can contact for COPD treatment. Unfortunately, we hear more about the successes than the failures so there is a feeling that everyone that gets treatment is going to have good improvement. However, even if a person does not experience major improvements or feel any improvement for that matter, I believe that stem cell therapy definitely can put the disease on hold and keep it from progressing as rapidly or at all. I am in a holding pattern for sure. Prior to stem cell therapy, I was declining at a rate of 5% per year.

Danny has posted the information on India that I was referring to. Let us know if you have any success with getting him into a clinical trial. Perhaps that company might know of others as well if they are closed to new participants.

 

[karl wagner]

try googling Dr. Shalin Thakore in India. He has had good results with lung problems and uses the same methods as some of the most expensive places on this side of the planet, namely expanded endothial progenitor cells reprogramed and enjected at the site of the problem.If you have trouble contacting him let me know i have his info somewhere.

 

[Chas]

Expanded endothial progenitor cells reprogramed

Karl,

Your recent post refers to "expanded endothelial progenitor cells reprogrammed and injected at the site of the problem." Do you know what sort of "reprogramming" is done to the stem cells? I believe Dr. Grekos also uses reprogrammed cells in his VesCell treatments. Are these cells reprogramed in the same or a different manner? Are there any medical journal articles on this subject?


Have you noticed the web posting about the success in San Diego in finding a potential new treatment for PAH?

http://www.sciencedaily.com/releases/2009/10/091025162528.htm

Apparentlly Eli Lilly is presently testing a "gamma-secretase inhibitor" for treatment of Alzheimer's Disease.

 

[barbara]

I should also have mentioned that Dr. Javier Lopez's company, Regenerative Medicine, has developed a protocol specifically for COPD. He is hosting this month's forum, so please feel free to ask him any questions you might have. Send them to my e-mail please which can be found under Community, then Members, then B, then Barbara.

 

[karl wagner]

I'm not shure Chas I dropped DR. Thakore after they said i need to fly with 02.It's somthing like 20 hours. It did look like his treatment was very simular. Grekos just told me that they are reprogrammed to work backwards in time. A kind of anti aging treatment.Some how it offsets the progresstion of the disease.Ive never seen any medical jounals on this subject.
Thanks for the y secretase inhibitor info i had not seen that. Finally fixing the problem and not treating symptoms.

 

[karl wagner]

http://search.ivanhoe.com/channels/p_channelstory.cfm?storyid=22812


I hope this is not to much of a commercial for grekos but it does explain some of his reprogramming. He calls this regenocytes

 

[barbara]

That's an interesting interview with Dr. Grekos. Do you know if the process is patented and if so, will the Israelis be licensing it to other doctors or is Dr. Grekos part of the Israeli group as well?

While some of it is promotional, he makes some excellent points I think. Thanks for providing us with this.

 

[karl wagner]

It's defently a part of theravite and vascell. At one time he was in charge or president of thervite's Americas division.But this was two years ago when i had my treatment. I don't know if he just pays them a gate keepers fee or is still part of the company.They were tring to get funds to build a lab in florida and break away.The only current info i have about them is there medical marketing guy carlo velerde has broken away from grekos and started a new company www.rejuvenare.com they are cheaper but it is not the same treatment.let me repeat that, not the same treatment.They claim to have treated 1200 people.They use bone marrow in peru.