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Jeannine
01-13-2008, 10:29 PM
Hopes of custom-built organs from stem cells
http://www.timesonline.co.uk/tol/news/uk/health/article3177646.ece

barbara
01-14-2008, 12:03 AM
On the news tonight was a similar story, but the experiment had actually been done on rats using stem cells from baby rats. It was successful in regrowing a new heart into the adult rat "patient". Now many people don't think too highly of rodents, but these guys deserve a little applause for pioneering also. I am also wondering what some of these articles mean when they say it will be years until it can be accomplished in humans. What exactly is years or is it just a way to say that they really have no clue if and when it will ever be done? Just wondering........

Jeannine
01-14-2008, 01:04 AM
Barb

I am also wondering what some of these articles mean when they say it will be years until it can be accomplished in humans. What exactly is years or is it just a way to say that they really have no clue if and when it will ever be done? Just wondering........

Can you say FDA? That's why it all takes years. I saw on TV this week that they had given an 81 year old man with severe Alzheimers an injection of Enbrel in his spine and within minutes his condition improved.

Now my Dad has severe Alzheimer's and we are taking him to the doctor on Feb 4th for an injection of Boniva as his doctor is worried about his bones. Here we are - a 79 year old man in a nursing home with severe Alzheimer's and Medicare has to arrange a special van once a month and drive him 10 miles to the doctor's office and back just to get a shot for his bones. We will ask about the Enbrel when we go to his visit. Any guesses to what the answer will be?

barbara
01-14-2008, 11:24 AM
Jeannine - Maybe, you should drive your dad over the border! What a crock. I am just wondering what the true definition of years is. Are they meaning 5, 10, 20, 50 or never? I think none of them have a clue in my opinion. Too much meddling makes for a very slow go.

hlichten
01-14-2008, 12:08 PM
I am also wondering what some of these articles mean when they say it will be years until it can be accomplished in humans. What exactly is years or is it just a way to say that they really have no clue if and when it will ever be done? Just wondering........

Can you say FDA? That's why it all takes years. I saw on TV this week that they had given an 81 year old man with severe Alzheimers an injection of Enbrel in his spine and within minutes his condition improved.

Now my Dad has severe Alzheimer's and we are taking him to the doctor on Feb 4th for an injection of Boniva as his doctor is worried about his bones. Here we are - a 79 year old man in a nursing home with severe Alzheimer's and Medicare has to arrange a special van once a month and drive him 10 miles to the doctor's office and back just to get a shot for his bones. We will ask about the Enbrel when we go to his visit. Any guesses to what the answer will be?

My dad also died in his 80's after a long bout with Alzheimer's, finally in a nursing home. He was also a renowned research scientist, and he would have fully understood that time would be involved for treatments to be FDA approved.

We are looking at a long road ahead for FDA. Some of it is red tape, and other bureaucratic nonsense, but some of the delays are real and necessary.

Essential fact:
There are a lot of illnesses that stem cells could treat, and stem cells will not be ultimately successful in treating all of them.

What we can hope for, in the next administration, is that clinical trials get completed quickly for more than one illness, and that we get FDA approval for treatment for one or more illnesses soon. All of this is based on an assumption that the trial data will be strong enough to support FDA approval.

None of the treatments that we are receiving in other countries will qualify as clinical trials. Doctors may be able to write papers about these treatments, but the data will never be usable toward FDA approvals.

If you look at every illness listed as a forum category, I don't believe that stem cells will end up as the cure for every one of these illnesses. I hope that I am wrong, and that it ends up being the "holy grail" for a multitude of ailments, but we simply don't know that yet.

For example: mentioning that somebody got relief from Alzheimer's after a stem cell treatment sounds wonderful, but one case has no scientific relevance, and if it is done outside the USA, it has no bearing as a clinical trial.

As you can see from my signature, I was not afraid to experiment with my own body and life, and spend huge money last year.
But I am also realistic....
By going to Thailand and Germany I did not help the future of stem cell treatment in the USA.

We can't fool ourselves....
If you want to help toward FDA approvals in the USA, and you can live ok for the next 6 months, you need to sign up for a clinical trial in your area of the country. If those trials are successful in Phase I, II, and III then they will lead to FDA approval for the condition you have, regardless of who becomes president. It can't be stopped.

Again, I made my choice, but I think that everyone here should know the truth.

barbara
01-14-2008, 12:22 PM
Harv - I totally agree with you that if a person can wait, then by all means, help the FDA by participating in a clinical trial. The unfortunate thing is that many of us don't have the luxury to wait for a clinical to be started near where we live, hope we get the real deal when we participate and then wait 6 more months to find out, and if we didn't, then get to try the real stuff. There will be tons of people available for clinical trials when they become available. I do not regret my own decision and I certainly do not feel unpatriotic or anything else by getting stem cell treatment in another country. I seriously doubt that this was your point, but I just want to set the record straight as far as why I feel many are not too happy with the slow pace of progress here in the U.S. You make an excellent point in that we need research going on for more than one or two diseases. No, stem cells may not be the answer for everything, but we will not know in our lifetime if only one disease at a time is tested in a clinical. The only ones in good shape in this country are rats and mice. At least they are getting a shot at improvement! Unfortunately, they get cured only to be dissected down the road.

Lee
01-14-2008, 06:01 PM
Maybe we could print replacement body parts using inkjet printer and stem cells as ink. Probably not but check this out.

http://engl.stem-cell.ru/news/phpnews/cell_news.php?nom_news=994

hlichten
01-14-2008, 06:11 PM
Harv - I totally agree with you that if a person can wait, then by all means, help the FDA by participating in a clinical trial. The unfortunate thing is that many of us don't have the luxury to wait for a clinical to be started near where we live, hope we get the real deal when we participate and then wait 6 more months to find out, and if we didn't, then get to try the real stuff. There will be tons of people available for clinical trials when they become available. I do not regret my own decision and I certainly do not feel unpatriotic or anything else by getting stem cell treatment in another country. I seriously doubt that this was your point, but I just want to set the record straight as far as why I feel many are not too happy with the slow pace of progress here in the U.S. You make an excellent point in that we need research going on for more than one or two diseases. No, stem cells may not be the answer for everything, but we will not know in our lifetime if only one disease at a time is tested in a clinical. The only ones in good shape in this country are rats and mice. At least they are getting a shot at improvement! Unfortunately, they get cured only to be dissected down the road.

No, that definitely was not my point, and questioning anyone's patriotism certainly doesn't have anything to do with it whatsoever either.

As it is clear to see, I have gone the route of the majority here, not once but twice. I am not a lung patient, and I did not go to SCB, but I definitely shelled out big money, time and effort last year to try to cure myself "ahead of the game".

My point is quite clear:
If we live in USA, are not dying and go out of the country for stem cell treatment, we can only possibly help ourselves, and can bring no long-term help to the masses, who are not going to pay for and leave the country for treatment.

There is absolutely nothing wrong with our doing this (paying for and leaving the country for treatment) but we can not fool ourselves that we could possibly be helping others. The doctors who treat us are only going to use treatment data to sell treatments to others, if they use data at all.

As for clinicals being for one ailment at a time, have you done thorough searches at:
http://www.clinicaltrials.gov/

I have literally scoured the web while looking for myself, and there are quite a few stem cell trials going on all over the country or recruiting right now, just not for COPD. I have found several for people looking for some, but again, not for COPD.

There are even some FDA-mandated trials going on using USA doctors in other countries like Brazil, etc.

I would not consider it "helping the FDA" to get into a clinical trial at all.
I would consider it helping others down the road, and possibly helping myself at least at the end of 6 months, without having to be dissected then! :rolleyes:

barbara
01-14-2008, 08:47 PM
Harv - Why do our posts look like we are arguing with each other? I have no beef to pick with what you said and agree with most of it. I simply cannot be a part of the group that will eventually help the masses because I don't have the luxury of time. That was my point. I guess I will have to be content to be part of the group to help the few. Anyway, you are one terrific Pioneer to have gone through what you have, so don't think I am going to beat you up one bit. You are very high on my list of good guys.

And Lee - Where on earth did you find what you posted? I was quite intrigued by much of it being in Russian. A very interesting site.

hlichten
01-14-2008, 11:44 PM
That has always been the problem with typed words on internet forums, and the bulletin boards (BBS) that preceded them:

The person reading them can always read them more ways than one, and read inflection into the "voice" that isn't there, and isn't meant to be there.

I definitely am not arguing with you and I also agree with almost every point you make, as you know!

There are still advantages to face-to-face conversation, even in these days of internet ---you would have your 'Rita in hand, and I would be on my 4th Diet Coke, (again, with apologies to my cardiologist) and it would sound a lot more like a calm discussion than it does all typed out here. :)

My only real "argument" in this thread was truly more of an argument with myself, since I would strongly desire to get into a cardiac clinical stem cell trial myself, since the paid-for treatments haven't gotten me anywhere yet.

I am quite likely to live the 6 months, so I thought why not try another treatment that would be given now, or 6 months from now? The only problem is that since I have had treatments, they would never take me, so this is likely moot anyhow in my case.

I was only addressing this to those who would not overly suffer if luck delayed their receiving the cells by 6 months and basically trying to stimulate thought among those people, and maybe take some money out of the wallets of the clinics in the process.

Cheers!

barbara
01-15-2008, 12:03 AM
Harv - It is difficult not to really be able to talk to someone. I hope you do get in a trial if you can. You have done everything possible to try to improve your condition and now you are even offering yourself up for some more. True Pioneer spirit. I do not have problems with legitimate stem cell companies. I do have problems with those that charge exorbitant fees and don't really have great results for most people. If they are still experimenting, then charge experimenting type prices and not enormous fees that people have to sell off their belongings to afford treatment. If companies did not choose to Pioneer, I would still be on the couch, but I hear you loud and clear when it comes to those that take advantage of the situations many of us are in. Please keep us posted on your progress. I cannot see where stem cell treatments should preclude you from getting into a clinical trial, but then I am not in charge of it.

Lee
01-15-2008, 08:45 AM
Barbara: The web site is http://engl.stem-cell.ru/news.php and has a number of interesting articles. Lee

barbara
01-15-2008, 11:25 AM
Thanks Lee. I sent them an e-mail to let them know about the Pioneer forum. It seems that they have news from all over about stem cells.


Also, Harv - I am not disagreeing that they will probably disqualify you, but I am questioning why a two year window concerning stem cell treatment. Does this mean that the stem cells can still be working for two years? Does anyone more scientific than me care to explain why this exclusion would be this way.

hlichten
01-16-2008, 10:36 AM
After my conversation this week with a clinical trial coordinator at a hospital here in USA, I now take back my support for clinical trials.

Get this:

If you want to be in it you start by sending them all your records, which is fine. Then you go there for 3 DAYS OF TESTING! Cardiac MRI, echocardiogram, EKG, Holter Monitor, etc. etc. etc.

There is a HORRIBLE test called a Nuclear Study, which is a chemically induced stress test that I DEPLORE. It makes you feel like you are running a marathon while lying on a hospital stretcher! Your heart races and you sweat while doing absolutely nothing!! Anyhow, you get to do not one, but 4 or 5 of these before you are finished in the study!! (I swore the last time that I would never do another one. I might have done one, but not 4!)

Then, after the 3 days, you go away, and come back for 3 days to get the marrow extraction and the femoral artery injection. You spend 2 nights or more in the hospital, which would be ok, but...if you get the placebo, you get the same exact treatment with water injected in the groin and the marrow extraction.

Here is the really BAD part...if you get placebo, they throw your marrow away, then you come back in 6 months, get the marrow extracted AGAIN, and the femoral artery injection, in the groin AGAIN.
I asked them....why don't you keep the marrow frozen for the 6 months if you are given placebo. No answer. The best "guesstimation" I can come up with is that, since it is double-blind, they can't know that you are not getting the marrow, and neither can anyone in the lab???
I am sorry, I just don't get it.

Then you get to go back to the clinic about 9 to 12 more times for follow ups, which would have been a 7 hour round trip for me for each follow up. PREPOSTEROUS.

Then, the coordinator tells me that this study started in 2006, and that they have had 9 people in it, trying to get to 15. I wonder why they can't get 15 people by now ????!!!!

They would have to pay me 100's of 1,000's of dollars to even consider it, and then, I would not likely do it!

I would LOVE to support and be in a clinical trial for heart disease and stem cell advancement, but really??? Can these people not come up with some sort of reasonable study? There are just too many testing requirements, too many screening requirements, too many follow ups (unless you happen to live in the city where the trial is being conducted.)

Jeannine
01-16-2008, 10:45 AM
Harv
I have been disillusioned with clincial trials. I applied for two in 2006 - one was cancelled and the other wanted me to wait for 12 months to see if I had received a placebo. Once the opportunity for stem cells presented itself I dropped the idea of involving myself with the countless tests they put very sick people through. It appears to me that instead of helping those in the most dire need of help they simply want the healthiest bunch possible to make their numbers look good in order to receive more funding.

barbara
01-16-2008, 11:02 AM
Jeannine - You may be onto something there. Maybe, they should just say, "Only healthy people need apply". I hope others reading this will really scrutinize what Harv has said. Out of the millions of people with heart disease, to only be able to coerce a paltry few into their clinical trial, is pathetic. There is no way a sick person should be wrung out to dry just because they have volunteered to do a clinical trial. Totally outrageous in my opinion. They have to be looking for needles in a haystack to have only progressed this far.

barbara
01-18-2008, 12:19 PM
I e-mailed the company that Lee posted about and got a nice response. I wasn't sure what they were doing since part of the site is in Russian and now Elena has been gracious enough to respond to me which I might add is not the case with many of my inquiries to some stem cell companies.


Dear Barbara,
We don't actually cure patients, we just send them to different clinics. We deal with patients who have different cardiovascular diseases, diabetes, traumas (including spinal and brain), autoimmune diseases etc. Doctors usually treat patients with stem cell technology only if they are sure in positive result. If there are some doubts they can invite patients to some clinical study. On the whole the results are good.

Best regards,
Elena Gugnina