Second Therapy

[barbara]

Were any spirometry tests given? Were you using supplemental oxygen 24/7 prior to treatment? If you had spirometry testing pre treatment, when will you be evaluated again?

I don't know of many clinics that would guarantee treatment. Most are too savvy for that. I can count on one hand however, the number of patients who have stated on this forum that they have gotten off of supplemental oxygen and have been able to stay off of it. In fact, I can probably count on one hand and not use the thumb or the pinky finger to keep track. My big question to doctors is why? If stem cells can reduce inflammation to a point that oxygen saturation levels rise (and I would guess that is where you are at now since there is no way your lungs could be regenerating in a week), then why aren't patients able to achieve better diffusion and get off of oxygen?

That brings us back to the importance of doing some legitimate studies/clinicals and unfortunately no one wants to do any. I have been down the road too many times. Some experiences were good, some bad. Some doctors nice, some not so nice. I have been pleased with my improvements after some treatments and I have been very unhappy at setbacks after lousy treatments. I do think stem cell therapy will play a role in the future of medicine, but for many diseases, I think there will also be a role for gene therapy and pharmaceuticals in conjunction with it.

In the meantime, clinics will continue to rake in patients who quite rightfully are seeking a solution to their health problems without any proof that the treatment works. If you feel good, then that is what matters in the end, but for some people (and maybe this includes you, I don't really know), these treatments are a major financial sacrifice. Anecdotal evidence just isn't good enough. If treatments are as great as the clinic websites say they are, then where is the proof?

 

[LindaZ]

Where did you go?

JC, where did you go in Nevada for this treatment? Is it the same as that done in Mexico?

 

[JC the Fox]

Nevada

I had both my treatments done at the Royal Medical Group in Las Vegas.

 

[barbara]

LindaZ - There are many different kinds of stem cell treatments. Stem cells can be harvested from fat, peripheral blood, marrow, placenta, menstrual blood, skin, teeth, umbilical cords, amniotic fluid, aborted fetuses, embryos, just to name a few. Many clinics add things to the stem cells as well. Clinics in Mexico, the U.S. or anywhere in the world are not just using one type of stem cell or one method of preparing the stem cells. Extraction and infusion methods may also vary.

At this early stage of research and development, there is no "one" method or type of stem cell that I am aware of that has been proven to work better than any other method for diseases in general or for specific diseases. The jury is still out and will be until years worth of valid research can be accomplished. People getting stem cell treatment now truly are the Pioneers.

 

[JC the Fox]

Snafu

I was hoping to post the results of my PFT's today; however, upon arriving at the local VA clinic, I learned that full tests can not be done there - particularly, they can not do the diffusion tests. Plus, there is no enclosed box, just a hand-held unit and a laptop.

In addition, the VA computer system linking the local clinic to the main hospital was down, so information could not be sent back and forth. After trying to do the "plain" FEV1 tests (which showed a "cough" error on two occasions), we stopped the testing. The technician will get with me tomorrow to reschedule the full tests at the VA hospital in Cincinnati; and I'll let everyone know when that will occur. Since all my previous testing was done there, it is probably best to have the next one done in as similar a fashion as possible.

 

[Connie]

Dad Gum It!

JC the Fox, I was so looking forward to hearing your results today. I'm sure you were too and I know it must be frustrating having to wait and go back. Have you noticed any improvements since your most recent treatment? i know it has not been long but we ( or at least I ) can't wait to hear about any improvements you might have had.

 

[JC the Fox]

Give me the strength to have patience....

My new appointment for complete pulmonary testing (including the diffusion) is October 19th. Hopefully, the additional time will allow my second therapy to have more effect.

In any event, I'm quite fortunate in that both my parents, who are in their 80's, are still around. Unfortunately, my mother fell Wednesday evening and broke her hip and femur - her surgery is this evening. And my father had an arterial stent inserted just a few weeks ago. So, I'll be quite busy seeing to them for the next few weeks.

Thanks to all who emailed me...

 

[purplerain]

all the best

JC I wish you the best on the result's on your test's
and for your Mother and Father to get well soon

 

[Jeannine]

JC

Sorry to hear about your parents. I hope your Mom will make a quick recovery. I am anxious to hear about your PFTs too.

 

[Connie]

JC

JC,
I am so sorry to hear about your parents. You take it easy and don't forget while you're taking care of everyone else to take care of yourself too. Believe me, I know that is not alway an easy thing to do. My family will keep you and yours in our prayers. I look forward to hearing great news from your PFT's in October.

 

[Gail]

You and your family are in my prayers

J.C.....I am so sorry to hear about your mom...I know this is a very difficult time for you BUT, as Connie said, you must not forget to take care of yourself...you and your parents are in my prayers..
I am looking forward to your PFTs......mine are scheduled for October 11....

 

[barbara]

You are fortunate to still have them both. I am sure you will help get them through this difficult time. Keep us posted when you have time. Here's to a speedy recovery for both of them.

 

[JC the Fox]

Numbers

I had the PFT's performed at the VA hospital this morning; my prior testing was done in January, before I had my first therapy. My FEV1 had not changed (26), and my diffusion increased from 37 to 38%.

 

[Connie]

YEE-HA That sounds like wonderful news to me. No decline in 10 months is great and ANY improvement in diffusion is FANTASTIC!!! Thanks so much for posting this. I look forward to hearing any more results you have in the future.

 

[barbara]

To me, this news is not encouraging as far as stem cell therapy being able to regenerate the lungs. Dr. Young told me he felt that COPD could be cured in 4 treatments. That is one reason I was energized about his research. Now, I know that this was not based on anything but a theory, but for someone who is seriously ill, it certainly sounded very promising. I can't believe how far fetched it now sounds to me, but at the time, he was convincing.

While having no decline is good news, a person can achieve this most likely with a good exercise program and even certain medications. Several studies have proven this.

It's time to get serious about the claims that are being made by BioRegenesis and some other companies. JC did the PFTs on his own. I would suggest to anyone who wants to gamble their money on treatment to do the same. With the exception of a very few clinics, the interest is not in the efficacy of the treatment. Otherwise, testing would be required before and after. The proof that the treatment is doing any more than keeping inflammation down is simply not there in my opinion. I have a strong feeling that many in the scientific community would share my opinion.

Those of us who have COPD are aware that adhering to a good exercise program (like JC does) is one of the best ways to stay healthy and keep the disease from progressing. Walking and exercising are free. Stem cell treatments cost thousands of dollars and in some cases lives. There is zero proof that this particular treatment can regenerate or repair the lungs.

The latest word is that BioRegenesis or Heygen or whatever name this company is using (there were a couple of names prior to these as well) is telling patients that they are planning on having a program where people will live in Las Vegas for a month or two getting several treatments a week, being blasted with trillions of stem cells. Of course, this will cost considerably more than the treatment they currently give. Where is there any type of indication that this would be safe or work? It sounds like a high priced experiment to me with the patient taking all the risks. I certainly would not want to be the first to sign up for something like that. If a person wants to give money away, there are a lot of worthwhile charities out there and for profit clinics giving experimental treatments outside an IRB aren't on the list.

As always, it is Buyer Beware. I thank JC for posting and taking it upon himself to have PFT testing done before and after and letting us know that he does maintain a regular exercise program.

 

[Jeannine]

JC

I imagine you are somewhat disappointed with the test results. THe fact that your lung function remainsunchanged is good news, but lung function doesn't deteriorate that fast so having the same FEV1 after two treatments I would expect more for the money being spent.

 

[danny]

JC - Thanks for the update, I was hoping you would have shown an increase in FEV1, considering how much better you were feeling (walking and stuff). I think everyone that has stem cell therapy needs to know the placebo effect can be very strong (even when getting a real stem cell treatment) and your mind can make you feel 10X better. I didn't get a dang thing out of my treatment and don't think stem cells are the cure all with COPD. I started exercising and eating the right foods/nutrients and my body feels much better and have had really no decreased FEV1. Only thing that worked for me is Daxas, eating brocco sprouts and using the lung flute. I think other stuff will have a better change in helping reverse COPD then stem cell therapy..