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JANICE R.
02-03-2009, 05:36 PM
Hi

My name is Janice and I live in the UK. I am 42 and married with 2 children aged 15 and 17.

I was diagnosed with Pulmonary Fibrosis when I was 19 but it didn't affect my quality of life until about 5 years ago. I also have secondary Pulmonary Hypertension.

In 2005 I was placed on the Lung Transplant list with Harefield Hospital.

I am on O2 at night and in the day as needed, I have stopped going shopping and doing girlie things as I don't have the energy.

I recently read an article in a Health magazine for Pulmonary Hypertension advertising the Regenocyte Clinic in Florida who have carried out Stem Cell Treatments for PH.

Being the curious persom I am, I went onto a couple of websites about Stem Cell Treatments and found a couple who treat Pulmonary Fibrosis, one being Regenocyte and the other being Dr Roberto Fernandez Vina in Argentina.

I have been in touch with the International representative for R. Vina, his name is Walter Trotter.

He has sent me some informative information on the treatment being offered but cannot give me any statistics on success rates in people with my condition.

I was wandering whether you know of anybody that has been treated with Autologus Stem Cells for this condition. Walter Trotter gave me Nassin's name who is also one of your members but he has Emphesyma which presents itself differently.

Hope to hear from you soon.

Janice

barbara
02-03-2009, 08:12 PM
Can you be a little more specific than just autologous treatment? Some autologous treatments are simple marrow extractions and the cells are then put back into the patient by IV without doing anything to them. Other autologous treatments may include adding growth factors to the stem cells. Others may culture the cells for a few days until expansion occurs. Some are directing the cells into the diseased organ such as the lungs and heart. Others do a simple IV in the arm. I think if I were you I would ask Mr. Trotter for more details than simply being told that it is an autologus treatment. All that really tells you is that they are not using umbilical cord or embryonic stem cells. Dr. Fernandez Vina was one of the first doctors to start treating patients with lung disease using stem cell therapy. He discovered that almost all of his cardiac patients were showing improved lung capacity. He then treated a man who had severe emphysema and had much success. Nassin himself will tell you he had one foot in the grave when Dr. Fernandez gave him his first autologous treatment. It was a marrow extraction and it helped him regain his life back.


And I might add - Welcome to the forum!

JANICE R.
02-04-2009, 04:33 AM
Hi again

This is what Walter Trotter told me:

Whilst you are under local anesthesia in an operating or hemodynamic room, he injects a special needle designed by him into the crest of your iliac bone, by the hip, this is painless, to aspirate a certain amount of bone marrow. The bone marrow is taken next door into the lab, centrifugated and stem cells are separated, filtered and treated. 2 or 3 hours later your autologos stem cells are injected thru the veins to go directly to your lungs. The lungs grab and keep them and your alveolus start regenerating. This does not happen immediately for obvious reasons, but takes from 3 to 6 months, though you start reducing your O2 consumption as from the 4th week onwards. How much you can reduce your O2 consumption depends on your actual condition, how your body reacts and many other factors. Some times, quite rare, a second implant is required about 6 to 12 months later, for reinforcement.

There is no rejection as you get your own cells and there are no side effects nor consequences of the treatment. The success rate can?t be so easily measured as many patients get better and forget about the doctor?s statistics, but one thing is for sure, 100% now have a much better quality of life.

Any Comments

Thanks
Janice

barbara
02-04-2009, 01:31 PM
I am not overjoyed hearing someone say 100% are now enjoying a better life because in reality that is very doubtful no matter what doctor gave the treatment. I wonder if Mr. Trotter is a sales rep because they often spout such unsubstantiated claims, even the ones from reputable clinics that you would think should know better. Such enthusiasm is nice, but not what is needed to evaluate properly if you should get treatment with a particular clinic or doctor. To be honest with you (and I am not a doctor) I cannot see how one autologous treatment as he describes could do what he claims unless you are at the very earliest stage of the disease. Is there any way to get an opinion from Dr. Fernandez-Vina himself? Based on the information you have given, if it was me, I would not rush into this. Dr. Fernandez-vina may have written some papers on his treatment of your condition. I would ask if he has and have them e-mailed to you. They are probably not peer reviewed, but he is a well respected stem cell doctor.

hlichten
03-01-2009, 01:43 AM
I am not overjoyed hearing someone say 100% are now enjoying a better life because in reality that is very doubtful no matter what doctor gave the treatment. I wonder if Mr. Trotter is a sales rep because they often spout such unsubstantiated claims, even the ones from reputable clinics that you would think should know better. Such enthusiasm is nice, but not what is needed to evaluate properly if you should get treatment with a particular clinic or doctor. To be honest with you (and I am not a doctor) I cannot see how one autologous treatment as he describes could do what he claims unless you are at the very earliest stage of the disease. Is there any way to get an opinion from Dr. Fernandez-Vina himself? Based on the information you have given, if it was me, I would not rush into this. Dr. Fernandez-vina may have written some papers on his treatment of your condition. I would ask if he has and have them e-mailed to you. They are probably not peer reviewed, but he is a well respected stem cell doctor.


Walter Trotter is a sales rep, confirmed. I spoke to him awhile back, before I passed on getting treatment from Dr. Vina permanently. Don't get me wrong...it was refreshing that he did speak English fluently. He lives in Mexico, and was quite pleasant to converse with. Dr. Vina is, as we have firmly established, a respected physician in the stem cell world. Claims of 100% improvement are very disturbing to me, however, since there is no way that this is possible. Simply not possible. Dr. Vina does not claim this percentage, but he did send me several word documents 2 years ago, and again last year pertaining to his cardiac injections. In one of these documents, he claimed that of about 50 patients getting the cardiac treatment, about 45 of them reported going from Class IV angina (very severe) to Class I or zero angina within 2-3 weeks! Again, this is highly suspect, and quite non-believable to me. Cellular treatment generally takes months to take full effect, an average of 3 months is commonly quoted for good results. 2-3 weeks for such results is just not believable to me. My reasons for not seeking treatment with Dr. Vina were: 1.) A doctor that does not speak fluent English, which is a "deal killer" for me 2.) distance to travel to Argentina 3.) the pricing which was quoted 4.) the claims of abnormally high success rates with very rapid improvement as discussed here.

I know that Nassin has had several treatments (or more) from Dr. Vina, and am convinced that Dr. Vina's treatments have helped him quite a bit. I am not doubting that Dr. Vina is achieving high success rates, since I don't have any information to the contrary. But claims of 100% are fictitious, period. No possible way. I am not a complete idiot, and such claims insult my intelligence.

Such claims are nothing other than a blatant sales tactic, and are foolish to make in my opinion. I would either ignore them completely, or take them with a grain of salt.

Now, please excuse me, I have sufficiently digressed here from what is important, which is getting you the best possible treatment:

I am a firm believer in autologous treatment, and specifically in marrow-based treatment such as Dr. Vina performs. You mentioned Regenocyte. They offer autologous treatment, but it is not marrow-based, it is a treatment done with a small drawing (about 1/2 pint) of your own peripheral blood (your regular-old blood drawn with a needle into a bag). Regenocyte uses Theravitae's lab in Israel. Your blood is sent via air courier to the Israel lab, and comes back a week later to be re-infused into the affected area (lungs, heart, etc.) I had a Theravitae treatment for heart disease in Bangkok in 2007, and can't say whether it had any benefit or not.

Basically, Dr. Grekkos (Regenocyte) is Theravitae's USA-based doctor, although the treatments are not in the USA, of course.

Barbara can tell you which clinics offer marrow-based treatment. The "catch" is that (as you probably already know) very few of them offer injection of cells directly to the lungs, which could be important, we just don't know yet.

My cardiologist in USA feels that direct injection will ultimately be one of the elements involved when stem cell treatments are legalized in western countries. However, there is evidence (and studies) showing that IV-based stem cell treatments result in stem cells being trapped (at least temporarily) in the lungs. For a pulmonary patient, this may not be a bad thing!!

Should you want to try a simple marrow-based IV treatment (or two, or three), there are options for far lower cost in Germany and even in California, using varying techniques.

If money is an issue, Dr. Vina is more expensive than these two places, and Dr. Grekkos (Regenocyte) is by far the most expensive. He is one of the most expensive clinics, period!

Keep in mind, also, that I said "a treatment (or two, or three)" because it is becoming more and more obvious that one treatment will not take care of a chronic condition, such as pulmonary or cardiac. The price ranges are extreme, but Dr. Grekkos charges more than 10 times what the least expensive IV treatment can be had for, and more than twice what Dr. Vina charges!!

If you want direct injection to the lungs, and you want marrow-based treatment, then Dr. Vina may be the best and/or only option that you have, and could be the way to go for you.

Just be sure to toss all that "100 percent" stuff out the window! :)
(I think I ranted on long enough on that subject!)

I wish you the very best in the pursuit of finding the best treatment options and hope for improvement of your condition.

I will be happy to assist you in any way that I can, and hope that you see that I am trying to assist, and not put any damper on your decision.

In the end, getting cellular treatment is a gamble, and we each do our own research, and make decisions based on the knowledge that we gather. I am sure that I have made some poor decisions along the way! :)

Judy3
03-01-2009, 11:23 PM
Janice:
I also have IPF with secondary Pulmonary hypertension. I have had the Stem Cells and I went with Regenocyte. The main reason was that their Dr. wanted my records from my family Drs, and then he would decide if I was a cantidate for their procedure.
I also talked with Mr. Trotter and he wanted to sign me up for a date to fly to Argintina in 3 weeks. No questions asked. I didn't care for that type setup, so investigated regenocyte, altho it is more expensive, I felt it was safer. That is just my opinion. I had the stem cells on Oct 28,2008.
Last month, Feb, I had the first PFT that was improved, instead of continuing to go down hill. My diffusion went from 19% to 22% and I can tell it is getting better as I go along.
Regenocyte said they hoped to be able to improve or stabelize my IPF. Since the cells don't really get going until the third to 6th month, I am looking forward to my next PFT in May.
If I can answer any of ur questions, just let me know.

Judy3

Had adult cells Oct.28,2008

JANICE R.
03-02-2009, 11:36 AM
Hi Harv

Just read your comments and I am now confused. I thought the only clinics who offer the treatment for IPF are these 2.
Does Germany carry out this treatment for IPF as well, I am only going by what is on the Stem Cell Repair website.

I received an email from Dr Vina personally and this is what he said:

Dear Mrs
Janice Rickwood

My friend and p?rthner Dr Lisandro Vazquez has reffered to me your questiens we ahve doe more than 100 patientes with lung desease specially Pulmonary Fibrosis
The result is very good and this desease have a good response for the stem cells implant . in genrallly imporve very fast and may be tha you can need more than one implant but in general with the unique and first implant the result is good , decrease the pulmonary hipertesion and imprve the oxigenation
We have done and treated patiens in Argentina where I did the fist human case ( 2005) and in Mexico, El salvador , Peru China and Indonesia all this countries have adopted my treatment not yet in Europe because I have not yet an Hospital where do it, and becuase I havent more time
I am under your orders for any question that you need My best
Dr Roberto Fernandez Vi?a


I had to send all my medical notes from the hospital showing my lung measurements and results of Echocardiograms and ECG's. Also, all the medication I take.
I understand where you are coming from regarding the language barrier but what can you do when the treatment is not offered anywhere English speaking except Regenocyte where it is 3 times more expensive.
With Dr Vina, any additional implants is free of charge.
I agree that people with severe medical conditions are vulnerable and have false hopes and the only thing that would hack me off would be the fact that I had been conned out of money and there was never any hope of it working.
After all, if it was free, everyone would be lining up whether it worked or not.

Judy

In what way have you noticed improvements as you said you are getting better all the time, the sort of improvement I would hope for is maybe going back 5 years in time to when I could do more like walking around the shops without going blue and getting SOB so quickly.

When I went for my hospital checkup last week, my FEV1 was 1.35 (48% predicted) and my FVC WAS 1.65 (51% predicted) although these measurements mean nothing to me. It seems to be an important factor in COPD.
My consultant tried to humour me when I mentioned Stem Cell Treatment as he said that there has been no results published in any peer reviewed Medical Journals to show that it works although he agreed that it is the way forward and even contradicted himself saying that they are looking at Stem Cells to be used in Lungs before they are transplanted to stop rejection but as usual in the UK, it will take years and money before it can be trialed.
He left it as "its up to you if you want to try it but don't build up too many hopes".

Anyway, I am provisionally booked in with Dr Vina in Buenos Aires on 1st April but I am flying to Spain next week to make sure O2 makes me feel better when flying as I feel SOB on the flight without it. I have only ever used a portable concentrator on pulse at 3 lpm but it did not seem to have full effect. The airline provide oxygen at 4 lpm continuous so hopefully this will be better as I need to be sure because Argentina is a 15 hour flight.

I wait to hear both of your commects.

Thanks

Janice

barbara
03-02-2009, 04:33 PM
I wish you well with Dr. Fernandez-Vina. I recently spent 1/2 a day with Nassin who was one of his first lung patients. Nassin looked marvelous. He says he has his ups and downs, but he is definitely one that believes that stem cells have improved his quality of life greatly. I hope you will let us know how your treatment goes. Your FEV1 is an important measure of lung function so I am glad you have had a recent PFT to obtain that figure. This will give you something to compare to 6-12 months down the road after your treatment.

hlichten
03-03-2009, 12:40 PM
Hi Harv

Just read your comments and I am now confused. I thought the only clinics who offer the treatment for IPF are these 2.
Does Germany carry out this treatment for IPF as well, I am only going by what is on the Stem Cell Repair website.

They don't offer direct injection for IPF in Germany. All that they could give you is a non-specific IV treatment.

As for the Stem Cell Repair website, I believe that it is owned and operated by the owner of Theravitae. Doctors and clinics could be paying a fee to be included on it. I have no idea, but I wouldn't consider it the ultimate information source, although there is good information on it in general.

I didn't mean to confuse you, I just rambled on far too long.

The bottom line is your being comfortable with everything about the treatment you are getting. What doesn't work for me may be your best choice, and that is fine.

It sounds like you are going to Argentina, and I wish you the best!

Everett
01-18-2010, 09:01 PM
Janice R.
By my calculations if you had treatment by Dr. Vina in Ap[ril then you are about 8-9 months post op. and probably have had another PFT. Are you improved? I hope so. I am advanced COPD and looking to recieve adult stem cell transplants but I am cousious about having it done with out knowing how other patients have faired.
I wish you well.
Everett B.

barbara
01-19-2010, 05:15 PM
You might try e-mailing or private messaging her if you get no response here. I am surprised at her comment that no one else offers treatment except for Dr. Fernandez and Regenocyte. This is simply not true, however she may be meaning that Don Margolis (Repair Stem Cells) only represents a few companies. It really isn't clear. Nevertheless, it would be nice to hear if she had any improvements after her treatment.