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TxRR

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My wife and I were watching our local news station (Channel 2 Houston) and we saw a segment from Celltex Mesenchymal Stem Cell company based here in Houston. Long story short I talked to my neurologist about this and he knows Dr. Stanley Jones the co founder of Celltex. My doctor is very excited about this type of stem cell therapy.

It's a seven step process.
1.) Contact to get started.
2.) Enrollment $6500 fee (includes consultation, blood test, extraction & culture, pre-therapy evaluation).
3.) Extraction & culture (painless, comes from the fatty tissue around your stomach).
4.) Pre-therapy evaluation.
5.) Travel to a state of the art hospital in Cancun, Mexico.
6.) Therapy
7.) Post follow up visit.

I asked how they administer the stem cells into the body (Ex. surgery etc.). I was delighted to find out there is no surgery required. They make the stem cells into nose drops and apply them in your nasal cavity (painless). The stem cells then travel to the brain via two routes through the blood brain barrier. They did an MRI on test mice models and used a dye to see the stem cells. I was amazed to see how many stem cells were in the brain.

I am set up for a consultation with Dr. Jones next week. I am very excited about this treatment. Based on all the research Ive done this treatment sounds very promising.

Has anyone else done this procedure? From what Ive read there are no risks associated with this type of therapy. Your body will not reject the cells since they are your's and with no surgery involved this seems like a no brainer to me.

I will post results as they come. They said it's a ten week process total. It take 5-7 weeks to culture your cells. Then you fly to Mexico.

I forgot to mention there are three fees associated with this treatment. Enrollment fee ($6500), travel expenses and hospital expenses.
 

lgelb

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This company has a very tumultuous history and had to shut down its US clinical facilities due to FDA decisions, which is why the procedures are done in Mexico. If you are serious about this (your post reads almost like an ad), I strongly urge you to conduct more research, and to reconsider this large investment, that entails not only time and money but possible negative health effects. There are legitimate stem cell trials going on, with more science and clinical oversight behind them, as they, unlike Celltex, are seeking FDA approval should the desired outcomes continue.
 

TxRR

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I understand your concerns. However my doctor is backing this company and its co founder. Texas state governor Rick Perry has used them. Dr. Jones, the co founder, has been a patient as well. "Sara" a patient was bed ridden for 20 years and now she's walking .She's one of their biggest advocates. i don't know what the hospital fee is yet but I don't plan on spending a lot of money. I don't see how they can charge $20k for nose drops. I'm not paying that. I only have a certain amount of money that I plan on spending.
 

ehd42

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Hi TXRR

Your excitement about the possibility of receiving an effective stem cell treatment for ALS based on media exposure of the promise of an effective treatment for ALS is palpable and understandable. After reading your post I read the celltex website and I was unable to find any specific reference to scientific articles in respected refereed medical journals supporting their claims of the effectiveness of their treatment for ALS. The website has the typical characteristics often found in medicine for-profit clinics that strongly appeal to desperate patients.
As a physician trained in immunology, I do not believe that any certified ALS clinic director would send their patients for stem cell treatment that has not undergone a FDA approved clinical trials and proven to be effective. Save your money for things that will make a difference in managing your ALS. I believe that effective treatment for ALS will be forthcoming within the foreseeable future and some of those treatments may be soon undergo rigorous scientific conducted clinical trials at University hospitals and serious research centers under the scrutiny of the FDA, unlike the treatment you are considering to receive in Mexico.
Please review the following website regarding phony stem cell treatment for ALS, I think you'll find it enlightening:

https://www.youtube.com/watch?v=ovPZkQYee8Y


Best wishes

Eliot
 

Vincent

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Funny how stem cell and snake oil sound so similar. The problem with most of these so called "cures" is the best you can hope for is you don't wind up worse. Watch the movie Gleason, he tried stem cell treatment and wound up incontinent. Not something one usually sees with ALS. If you have to go to Mexico for it..............Be very afraid!
Vincent
 

lgelb

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Do you mean "backing" as in "invested in"? That's a clear reason to tell you how great it is. And there is always a "shill" patient who is family, being paid, or accidentally got better. C'mon, do you buy everything advertised with testimonials on TV? The stakes here are much higher.

As to Gov. Perry, he is not a health care expert and there are ways of paying politicians, too, as you may've heard.
 

swalker

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Here is my experience, which you may or may not find helpful.

A friend and world-recognized medical professional suggested that I have a conversation with Doctor Jones. This friend is a staunch believer in what Doctor Jones is offering. I respect this friend greatly and his suggestion to pursue stem cell treatment certainly got my attention.

I had a lengthy conversation with Doctor Jones. He comes across as a very compassionate person with a deep confidence in the ability of his stem cell treatment to help me and others in my position. He was a very convincing salesperson.

However, all of the evidence he was able to present appeared anecdotal. As a bit of background, I studied theoretical statistics in graduate school and have worked with statistics throughout my career. I think I have a pretty deep understanding of statistics and thus am able to figure out the difference between anecdotal evidence, correlation, and causation.

All I saw was anecdotal evidence. Doctor Jones and others are pursuing studies that could provide more than anecdotal evidence. I will watch those carefully to see what they reveal.

Dr. Jones said that the cost of treatment would be around $40,000. Regardless of the cost, I decided this treatment is not currently for me. I will watch what they are doing closely and retain an open mind. Perhaps some day in the future I will decide it is appropriate for me.

Steve
 

lgelb

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In tonight's Seattle P-I:

Perry had previously blamed chronic back pain for his "oops" moment and other gaffes that sunk his once-promising campaign, hinting that the procedure carried out by the Houston-based biotechnology company Celltex Therapeutics didn't help him overcome it.

But the former governor told the Associated Press this fall, after joining the company board, that his health was good and he was a big believer in adult stem cell therapy.
 

Firefighter58

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If it sounds too good to be true then..............
Al
 

billbell52

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There isn't a single article in reputable scientific journal. It is all hogwash. Don't do it.
 

TxRR

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Update:

I had my consultation with Dr. Jones this week. He was very sincere and compassionate. Let me be clear on the fact that he made No Promises or Guarantees as to the outcome of the treatment. He told me they have had much success with the treatment and referenced some success stories of some of their patients. He also said that no one has been hurt or harmed in anyway as a result of the treatment. He said it would take about 6 months to feel any real benefits. He wants to do a before and after 3T MRI to see how the cells are working and if the brain is being repaired (his office visit and MRI are covered under my insurance minus the copay so i'm not really out of any money at this point). The delivery method for the stems cells is either through IV or vapor through the nasal cavity. He recommended the vapor method which is painless.

We did not talk about the hospital fees but I can assure you all I am NOT paying $40k for nose drops. That's absurd!

To give you a little back ground. I had lasik eye surgery last year. I purposely waited 10-15 years until they perfected the procedure before I did anything. I was not taking any chances with my eyes. I am treating this the same way. I will not do the procedure until all the risks have been minimized. As of right now, I do not see any serious risks. The stem cells are my own so they won't be rejected. There is no surgery so that eliminates that risk. Geez, guys this seems like a no brainer if the money is right.

I recently lost my job because of this disease. I am sick and tired of living with this disease. I am not desperate but I am open minded to any available treatments at this point. I think the medical community has come along way with stem cells and maybe it's time to give them a try. I think it pointless to reference scientific journals, studies etc.....because stem cells speak for themselves. I may be wrong.

I would like to thank you all for looking out for me. This is not a decision I will be taking lightly rest assured.
 

ehd42

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Hi TxRR,

Seems to me that your recent post regarding Celltex stem cell treatment appears to be more of an advertisement than one that seeks information or shared experiences. I have a number of issues with your post that I would like to present.

First whether Dr. Jones is compassionate, kind, and sincere has nothing to do with the efficacy of his company's treatment. Dr. Jones is an owner and chief medical officer of Celltex, and will profit from the company's sales, so I would hardly trust him to be offering objective advice because of his vested interest, which at the minimum seems to me to be is a serious conflict of interest for a physician who owns part of the company.

That he doesn't offer any guarantees is to be expected. However, did he review any scientific data on what percentage of ASL patients or others with motor neuron disease benefit from Celltex treatment? How was that benefit measured? How often did the treatment needed to be re-administered to maintain its effect? Did he mention that stem cell treatment often requires repeated treatment every few months and that needs to be taken into consideration regarding the overall costs which could exceed 50 or a 100 thousand dollars year?

Other companies developing stem cell treatment for ALS include Neuralstem and Brainstorm. Both have received licensing for the clinical trials in the United States by the FDA, and if these treatments prove effective in future studies, the results will be published for all to see what the treatment is effective or not.

If these companies could produce the capital necessary to conduct serious clinical trials under the appropriate regulatory agencies then why hasn't Celltex also done the same, particularly since they said that they would so? If they haven't the capital to conduct such studies then it would appear to me that they may not ready for prime time quite yet and should not be trusted as a purveyor of safe and effective stem cell treatment for ALS at this time. If you read the FDA report below it might give you reason to hesitate the company’s recommendation.

Furthermore, I find it difficult to believe that stem cells delivered by nasal spray would be effective in ALS, unless Celltex presents clinical evidence that stem cells delivered through the nasal passage is as effective as that administered by the intrathecal route. Where is the evidence for such claims?

Your analogy that it took Lasik years to develop their technology before you would try it is not a logical argument for proposing for that one undergoing Celltex treatment for ALS. One thing has nothing to do with the other. Practitioners using phony treatments have used similar arguments for years.

Although you state you see no serious risk in receiving an unapproved stem cell treatment, the FDA found plenty of potential risks including issues over sterility, labeling of specimens and the integrity of the process of producing stem cells by Celltex. I think that is more of a risk than a knowledgeable person would be willing to take, considering the FDA's report.

When you say that that receiving this treatment “ seems like a no-brainer”, I beg to differ. When receiving an unproven expensive treatment for a serious illness one does needs to engage his critical thinking to differentiate between snake oil and the real deal.

We are all tired of living with this illness, but taking an unproven treatment without doing some serious research and weighing the pros and cons is definitely a “brainer”. To do less, could invite bogus treatment by charlatans. Just because a practitioner believes deeply in his treatment doesn't make it effective for ALS . All you need to do is review the 60 minute report I sent you in a previous post to know that this is true.

To not take into serious consideration scientific journals and studies seems like folly to me and perhaps even the denial of reality out of desperation, which is exactly what the snake oil salesman want.

You are wrong in your conclusion that stem cells speak for themselves. If stem cells are not properly programmed they are unlikely to offer benefit to ALS patients. There are dozens and dozens of serious research programs around the world struggling to develop an effective ALS stem cell treatment, and so far Celltex hasn't offered convincing scientific evidence that that their treatment is effective in people with Motor neuron disease. I fear that such declarations about an unproven treatment may be raising false hopes in desperate ALS patient. Celltex certainly has not convinced the FDA, whose job it is to be sure that we are not being harmed and that proposed treatment is effective.

If you still desire to spend tens of thousands of dollars every few months in hope of significant benefit, I can only hope that you have lots of financial reserves so that you do not find yourself short of money when you really need it. Check out the following websites for more information:


Controversial stem-cell company moves treatment out of the United States : Nature News & Comment


I wrote this post in response because I wanted PALS and their caregivers to think carefully about what you seem to be proposing and think it through with a critical eye before laying down their hard earned cash for something that may very well not significantly help them while impoverishing them since no insurance will cover such an unapproved and unproven treatment.

Best wishes,

Eliot
 
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ehd42

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Addendum to the above posts. Here is the FDA Notification letter to Celltex.

Celltex Therapeutics Corporation 9/24/12

Although the company most likely cleaned up its production procedures since 2012, I feel that the company lost credibility because it was supplying patients with stem cells treatment under the conditions described in the FDA letter.

Eliot
 

TxRR

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My post was not intended to sound like an advertisement. I was just merely stating facts. I am not affiliated with Celltex in any way nor am I pushing their product.

ehd42 I resent your post and don't appreciate you tearing my thread apart. Obviously you feel very differently about this topic than I do but it doesn't make you right. I was just sharing information in hopes of getting some POSITIVE feedback. Your post came across to me as very condescending. The FDA is a government organization. If they are anything like the Department of Veterans Affairs then they suck and I don't blame Celltex for not wanting to deal with them.

Dr. Jones told me they are having an 80% success rate with MS patients. Sara, a patient, under went 6 therapy sessions and the company is totally up front about that. They don't claim it's a one time deal. As far as the nasal spray, I suggest you research it because I did and found that it's a very effective way to get the stem cells through the blood brain barrier. A lot better and less invasive then getting your back split open through surgery.

I made a comparison between Lasik surgery and stem cells which you obviously could not comprehend. I see it differently in that stem cell treatment is advancing much like Lasik has over the years. They are constantly improving the technology over time. What is so hard to understand about that? Sounds to me like you are just looking for an argument.

Dr. Jones also told me that no one has been harmed by their therapy. I would imagine if that statement were false their would be some pending litigation.

Lastly, and I've said this before and wish everyone reading this would remember it. I AM NOT PAYING $40K FOR THIS TREATMENT! I am not rich by any means. If that were the case I would wait a few years until it becomes legal in the US and covered under insurance. Thats a no brainer (I know you love that term ehd42).

My personal neurologist is involved with me on this. He has spoken to Dr. Jones and I will find out the outcome of that conversation next went at my appointment. If this turns out to be a viable, safe and affordable treatment then I will proceed.

Happy New Year!
 
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