Having Stem Cell Treatment on March 19th

[Jeannine]

ON March 19th I will be in Sarasota receiving an autologous stem cell treatment from Dr F. (Stem Cell Regen Med)

Tomorrow - I am going to have the blood drawn at a local lab and will be shipping the blood FED EX overnight to Dr F (it will be kept on ice during shipment).

Tony and I plan to leave for FL on March 15th or 16th. We will decide which day based on the weather. We are driving - not flying.

I will keep you all updated on how it goes.

[Buddy74]

Good luck Jeannine! I understand from your post that your procedure will be done in Sarasota. I thought Stem Cell therapy was not allowed in the U.S.?
Bud

[Jeannine]

Buddy

I will be receiving my own stem cells which is legal in the US.

The illegal part is when the cells are manipulated by using growth factors or when umbilical cord stem cells are used.

[jill]

I wish you the very best,have a safe trip

[barbara]

I will be rooting for you Jeannine.

Jill is also going to try an experimental treatment for COPD (BATV). She will be having surgery in a couple of weeks. With her permission, here's what she told me:


The Dr said to be at the hospital at 11 am it takes
about 1/2 to 1 hour then I spend the night in the pulmonary and home the next day. I asked her how the 2 people were doing that already have had it done and if they were less sob and she said they were
The main Dr is Dr Gotfried He is really nice and a kind man. I asked him if any
one had died getting this done "Oh no" he said and took my hand


I will be thinking of both of you. Be careful and whatever you do, think positive and take it easy.

[Jeannine]

Jill

I wish you luck. The treatment looks very promising. I spoke with the doctor's office in Phoenix when it was first announced and they have submitted my name to Brigham & Womens in Boston as a candidate for the same treatment. They don't plan to start there until later this year or early in 2011
Plenty of time for me to see if I am still needing it after my stem cell treatment.

[jill]

Barbara and Jeannine,Thank you both,we have to keep looking for help for our copd,the surgery I am getting is yet another that will be waiting for years with the good ole boy's of the F D A,let's hope Daxas will be available soon

[Buddy74]

I have a problem contemplating this procedure being done in the U.S. I travelled to Santo Domingo in July to have my Stem Cell Procedure, using stem cells from my own blood. The blood was, like you Jeannine, drawn from my bodyat Dr. Grekos office at Bonita Springs Fl., the blood was sent by courier and plane to Israel and stem cells were extrapolated from the blood and then replicated and ultimately inserted by catheter into 34 areas of my heart. It has helped me quite a bit.. The company I used was Regenocyte under the direction of Dr. Grekos. Dr. Grekos has a large medical building and he has an operating room awaiting the day the FDA gives approval for the stem cell procedure to be allowed in the U.S. I was at the Regenocyte offices a couple of weeks ago and spoke with several people waiting for their trips to Santo Domingo to be set-up. I called Regenocyte today and they have no knowledge of approval of the Stem Cell procedure being allowed in the U.S. unless it is a clinical study. I am a bit bewildered by this as if this is the case then prices will drop and availability to many, many people will be astounding. What is the story here?

[Jeannine]

Buddy

Autologous stem cell treatment is legal. However, Regenocyte must be adding gorwth factors to the stem cells which isn't legal in the US and that must be why he's having to leave the country to do so.

Apparently I should have kept my mouth shut. I had no idea I would be treated like I was doing something wrong.

[barbara]

Buddy - Your procedure and Jeannine's procedure are hardly the same. If they were, then Dr. Grekos should be treating people in Florida at a much reduced cost. He says his procedure is highly customized for each patient and the cells are manipulated, so I have to believe that. That's why you don't get them infused right away but must wait for them to be sent back from Israel.

There are several doctors and clinics giving stem cell therapy in the U.S. We have various posts about them. Treatment is strictly limited however. I have had 3 treatments in the U.S. Why not ask Dr. Grekos to get a clinical trial going himself here in the U.S. or to conduct trials in the DR. He said that he was going to do that and yet it sounds like from what you have said, he is now taking a wait and see attitude. He may have decided he doesn't want to fight the FDA or it may simply be that treating outside the U.S. is financially very good for him and he has enough patients that it isn't worth his time and trouble to jump through all the hoops here in the U.S. Who can blame him?

You can also shop around for treatment if one clinic is charging too much. I certainly couldn't afford Dr. Grekos' treatment and do appreciate that there are alternatives out there. Treatments may not be the same however and if you can afford what you got and are satisfied then why be upset about someone else getting a different kind of treatment elsewhere?

[danny]

If your cells aren't manipulated (expanded) outside the body then it seems
legal. Your just taking the blood out putting it back in really.. he is not
injecting it in other parts of the body (like the heart with a catheter)..
doctors have been doing it in California for years and in Colorado now..

[Buddy74]

Thank you Barbara for your input. I am sorry that Jeannine, through my post, that she is made to feel that she is "Doing something wrong". My intent and I thought the intent of this forum was to inform. I will certainly contact Dr. Grekos because I would like to know that if there is indeed another less costly procedure that can be done in the U.S. what are his reasons for not offering that option? I find that an important issue. We are all fighting for our lives here regarding this subject and I suppose that is one reason we are called pioneers. I look for guidance from this forum as it was this forum that led to Dr. Grekos after exploring other areas. I am still not quite clear about the issue but it is important enough to me to look into it as best I can. I would like to have another stem cell infusion but the cost and travel through Dr. Grekos are a major consideration. I do wish you the best Jeannine and I hope you will tell all the details of your procedure.
Bud

[barbara]

I don't know that you will find out from Dr. Grekos if there is treatment available for you in the U.S. if Dr. Grekos is not doing it. He is not likely to want to lose you as a patient. I do not know all of the particulars of your case to know if any of the treatments that are being done here would benefit you. I'm not a doctor. I do know that everyone should take it upon themselves prior to treatment decisions to compare apples to apples with several clinics.

I am particularly interested to see some results from patients who are treated at Rejuvenare. From what I am told, the cost is less than half of what Regenocyte is charging for what they describe as a superior treatment. Of course, every clinic or doctor is going to boast that their treatment is the best, but if treatment is at the very least comparable, the cost then must be factored in. As I stated, the price tag at Regenocyte excludes an awful lot of us. I welcome new clinics, new, quality competition.

Dr. Grekos is no longer in ICMS which has been a disappointment to me. I will not hide that fact. What ICMS has proposed with their guidelines and patient registry would indeed improve safe stem cell therapy and the chances of having it more available all over the U.S. He evidently does not agree. I would love to see someone of his caliber start doing treatments in the U.S., but if he does not wish to do that, there is nothing we can do about it. Only competition will drive him to make a different decision, I'm afraid.

[Everett]

Hi,
Glad to hear that you are getting to FL. I hope that your trip goes well and the tansplant is a huge success. I hope to get to do treatment this spring. I will probably go to FL too at this time. Got to get my ducks all lined up beforeI pull the trigger.

[Buddy74]

I believe that the answer lys not in what Dr. Grekos does or can do although I have contacted them and had an interesting discussion with their representative. For me the answers ly in finding out what Dr. Feinerman and Regenmed are doing and what they might be able to do for me and two friends who have serious heart related problems. Money, geography and certainly performance are key factors.
With that in mind I placed a call to them on their 888 number but could not get a response. Their website is quite interesting and offers much information. There is some question relating to stem cell heart issues that I see are different from that which I had explored extensively before going with Dr. Grekos and Regenocyte. I have collected some pieces of information from their web site that I found of interest. I note that they do utilize bone marrow stem cells and/or stem cells extracted from the blood. They do mention that they extrapolate stem cells from the blood but make no note of whether they replicate the stem cells through their process. I had 40 million stem cells of which one third were cd34 cells placed directly into my heart at 35 mapped out places through a catheter placed through an artery in my groin. Regenmed make note that they may place the cells into an artery with entry point to the heart itself. My own prior investigation have indicated that this method loses the large majority of stem cells before they actually reach the areas of the hear and that is not a procedure I would undertake. Regenmed ALSO places factors within the blood itself. Most of the pre testing appears to beleft with your own doctor as is the follow up testing. One of the things I liked about Dr. Grekos process is the pre test baseline tests I went through and the follow up tests that ensued. I am not a shill for Dr. Grekos by any means, however, the people at Regenocyte and the process itself has been quite excellent. Aside from that my six month Ejection Fraction rose over the past six months from 20 to 35 and I am able to breathe again.
I will contact Regenmed directly because not only am I seeking information for myself but also for two friends of mine who are in need of some assistance relating to their heart conditions. Yes, I am sure Dr. Grekos has many expenses but you are right the cost for the Regenocyte procedure is almost prohibitive for most of us. As I said, I will call Regenmed not only for myself but for my dear friends and see if I can obtain further information. This forum has been a wonderful site for so many of us in a relatively new area and I thank Barbara and Jeannine for their efforts. As I mentioned previously, we are fighting for our lives and in a field such as stem cells the more pertinent information we receive the better our options are.
Bud

[barbara]

Uh oh Everett. Now, you may be on my "hit" list. For those of you that don't know, I have a 501c3 non profit rescue and refuge. www.feathersandfriends.org
I mostly take in domestic ducks, but everyday in the winter we have at least 2-3000 wild ducks show up. Most of them just socialize. It is really an awesome sight. I am very sensitive as you can tell when someone mentions ruffling any duck feathers. My home is also completely duckorated. I am what they call a Quack addict.

To keep this on a stem cell discussion level, I have used Stem Cell Advance in treating a pigeon. The bird had a neurological problem and had not been able to fly for several years. She also had lost most of her feathers. In a couple of months after starting the treatment, she was able to fly and is now completely feathered. Pretty amazing what stem cells can do!

[barbara]

Buddy - Just so that everyone understands, the treatment one can have done in the U.S. is not the same as most offshore treatments. The FDA would then consider the procedures under their regulatory guidelines since the stem cells are being processed differently than a simple autologous treatment like I have had and that several doctors are treating with here in the U.S. Your condition may be one that could not be helped with treatment that is available here. As I said, I am not a doctor.
Your friends may be in the same boat. There are also a multitude of cardiac clinical trials going on at the moment that use stem cells. Clinical trials can be difficult especially if they use placebos, but for some, it may be one way to try to get treated if they do not have the funds.
I have only had IV infusions in the U.S. I do not know if catheter infusions directly into the heart are available at any U.S. clinic. None that I know of, but things change everyday so it pays to make inquiries directly.

[barbara]

Buddy - In case you missed Dr. Centeno's reply to a thread in the ICMS forum, I am posting it in this thread as well as it pertains to our discussion of Dr. Grekos and what he says it is going to take for us to have greater access to stem cell therapy in the U.S. (You may want to read the posts made my Animalca).




Dr. Centeno has read both of Animalca's posts and asked that I post his reply:


I've read both posts. I'm sorry that Stanford acted so strangely. While I think Dr. Grekos is doing some credible work to help patients, my serious concern is that he has shunned participation in ICMS. ICMS was founded so that an independent third party, non-profit can collect the outcome and complications data and act as a group to promulgate strict lab and professional guidelines. In essence, so the academic set could get it arms around the concept of autologous stem cell therapy while patients can have access in a safe and controlled manner. If you really want to see change, the first step is not to get to the man on the street or government (let ICMS do that), but convince the Grekos' of the world that it's in their patient's best interests to have these doctors and their clinics join ICMS and follow strict protocols so the Stanford's of the world have nothing to say but, "Gee, I don't know what they did or how they did it, but your daughter is better and I want to learn more..." Until the patients demand ICMS participation and guidelines compliance, blow-ups like this will continue to happen.
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