5 mo update Pat C

[Pat Chronister]

Just had follow up consultation with Dr. F. I told him that at this point (5 3/4 mos) with no appearance of any improvement(s) it seems improbable that I will have any benefit from the therapy. He agreed. It's a disappointment but I went in to therapy knowing no guarantees. I have GOBS of supplements to get rid of. I stopped all pills about 2 weeks ago -- stomach was consistently upset. Dr. F. mentioned developing a new procedure for delivery of stem cells to the lungs and they would offer it at a reduced rate - he wasn't sure of actual $. Don't think I'll try another therapy -regardless from whom. I planned to ask Dr. F., about where the cells came from, but decided to not do it - makes no difference to me now. Hope you all have better personal news than mine.

Pat Chronister

 

[danny]

He should offer the new treatment for free to everyone that got stem cells from this site. No one I have seen has had significant statically improvements.

 

[barbara]

Pat - You are correct in that not everyone who has had treatment for COPD and I might add other diseases sees improvement. There are several theories as to why. I was told recently that some people just did not "match" with the uc cells given. I was somewhat confused by this answer and plan to explore it some more. Personally, I do feel that most of my improvement now is coming from some supplements that I have experimented with for the last several months. These are things that are probably not on anyone's list, but nevertheless, they are working well for me. I also think age may be a factor and also other health conditions. I feel that the stem cell treatment did stop the progression of my disease and for that I am pleased. I am looking forward to new discoveries as far as treatment. It amazes me how many stem cells are being discovered by researchers. This is an exciting time for scientists I am sure. Hopefully, there will be something coming down the pike to help you. Never give up.

 

[hlichten]

Pat - You are correct in that not everyone who has had treatment for COPD and I might add other diseases sees improvement. There are several theories as to why. I was told recently that some people just did not "match" with the uc cells given...

I am someone who has received his own cells several times and has seen no improvement whatsoever, and I certainly would think that I "matched" with my own cells.
Stem cell types, lab processing, and delivery method simply have not been perfected yet, that is all there is to it.

Also, everyone has a different metabolism, varying age, and there are a wide variety of illnesses that people have in varying stages of progression. Various clinics are trying to treat all of these illnesses, and stem cells are likely not going to end up being the answer to help everything and everyone.
We just don't know enough yet.

I have coronary, not pulmonary disease.

 

[barbara]

Harv - I have to agree with you, but I was told this by a research scientist and since I am not one, I intend to ask it of several more if I happen to get to meet a few! I agree that cell type is going to play a big part and I also think age and stage of the disease may play a part. Like I said, we are living in some exciting times as far as new research and discoveries. I do not understand the match for uc cells either as the blood cells are taken out and I had always heard that no donor matching was necessary. It is disappointing however, when someone feels no improvement. However, the improvement may manifest itself in other ways such as getting sick less often or having more energy. It may not be what you were hoping for, but possibly there is some bit of improvement somewhere. Even stopping a progressive disease is something gained even if no improvements are seen.

 

[hlichten]

Harv - I have to agree with you, but I was told this by a research scientist and since I am not one, I intend to ask it of several more if I happen to get to meet a few! I agree that cell type is going to play a big part and I also think age and stage of the disease may play a part. Like I said, we are living in some exciting times as far as new research and discoveries. I do not understand the match for uc cells either as the blood cells are taken out and I had always heard that no donor matching was necessary. It is disappointing however, when someone feels no improvement. However, the improvement may manifest itself in other ways such as getting sick less often or having more energy. It may not be what you were hoping for, but possibly there is some bit of improvement somewhere. Even stopping a progressive disease is something gained even if no improvements are seen.

Unfortunately in my case, none of the above...no more energy, no slowdown in disease progression, no improvement anywhere or whatsoever. Nothing, nada, nyet, zilch! (did I say I am not better?)

I think you are basically right about the uc cells, but I have never received any of them, as you are well aware.

I am very sorry for Pat also, but I do understand.

 

[Achillian]

No Improvement

How disappointing for Pat, Harv etc. I totally understand the disappointment. I had my cells a week after Harv. They were from my own bone marrow too, and I've often wondered if I'd have been better getting cord cells, as I thought my own must be infected with Lyme. My sc doctor assured me that couldn't affect the stem cells, so I trusted him. For one thing I know I got pathetically few cells, 5 million from 200mls of bone marrow!
It's probably coincidence. or the fact that I take a potassium supplement, but my blood pressure has returned to normal and i don't get palpitations anymore. I sometimes wonder if the stem cells found their way to my heart instead of where I wanted them, ie my muscles and immune system??
I think, and Harv may know more about it, that they can't "programme" bone marrow cells to go to a certain area. As for the cord cells not matching, that sounds a bit strange. Do you not need to have the same blood group?? Surely there would be a risk of rejection otherwise?
I'm no expert by any means, just thinking aloud!
Let's hope some improvements start to show that we didn't waste time and cash!!
Anne.

 

[barbara]

A benefit or not of stem cell therapy

Anne - This is what I was saying about you may get a different improvement than what you were going for in some cases. If you have been plagued with palpitations, etc. for a long time and then a month or so after you get stem cells, these disappear, then I would have to think it could have something to do with that. If you quit taking the potassium supplement and they returned, then probably they didn't. I am not suggesting you try that experiment, but it all does add to the confusion of whether or not you had any benefit. I am going to ask the question in May in the Ask the Doctor forum about the donor match. I have always been told this is not necessary with uc stem cell therapy. In fact Dr. Steenblock even says in his book that no match is needed I believe and yet now, I find a very educated researcher telling me that it is a factor. I guess we are all in the Pioneering phase for sure - patients, doctors, researchers, etc. I also have the mental attitude that my own cells were too decrepit to do any good, but stem cell doctors do not agree with me when it comes to autologous stem cell therapy.

 

[Achillian]

Well actually Barbara I'm a bit slip shod in taking the potassium! Sometimes I forget to take it for days on end, so maybe, just maybe the stem cells are at least doing something.
"decrepit" cells, describes mine perfectly!!:
Anne.

 

[hlichten]

My understanding is that there is no donor matching with uc cells, because whole blood or plasma is not being given. All you are being given are cells, either CD34+ or mesenchymal which are isolated in a lab. They are sometimes (usually) expanded (multiplied) in a lab as well so one donor can make a huge number of uc doses. There is still (theoretically) a potential for graft-vs-host disease getting uc cells. I have never received uc cells.

At this point (again, theoretically) marrow cells can not be programmed to go to any particular location in the body. The two "schools of thought" on administering them are a.) give them IV and they will go where needed and b.) get them to, or close to the place needed in the body. Again, none of this is proven anywhere or by anybody.

UC cells can not be proven to be programmable either, although that doesn't stop certain doctors and clinics and labs from claiming that they can "create" certain cell combinations for certain organs in the body or certain ailments. I personally believe this to be hogwash in that the current "state of the art" of stem cell therapy is rather weak.

Clinical trials are a pain to qualify for, and a pain to participate in, but it has become painfully obvious to me that they need to be funded well, flourish and lead to peer-reviewable results.

Right now (for example) if 50 people go for stem cell treatments at 10 clinics, a certain percentage will say they are better after 3-6 months, but how many of those feel better due to placebo effect? Especially after spending a lot of money, a lot of people want to feel better. Nobody is going back to a clinic for follow-up tests that could prove improvement.

And as Barbara pointed out, perhaps they did receive potent, capable cells that "decided" to go to work helping some other unrelated symptom in their bodies.

The bottom line is that the "results" from those of us that have been treated at foreign clinics can be tossed. It has no real meaning or value.

 

[barbara]

Harv - I agree with you completely that clinical trials serve a great purpose and that is in the documentation and control in my opinion. Unfortunately, for many clinical trials are exclusionary and not an answer for the present. I look forward however, to more and more trials being conducted and eventually some consensus being made as to the best cells and delivery method for treatment. I also was told that since there are no blood cells that no match was needed and then was told something completely different by a research scientist. The scientist I spoke with also said that cells were diluted and change when they are expanded in culture. He did not see this as a good thing. Another doctor is using a patient's weight as a method to determine how many uc cells that will be infused. It's like taking a history class and each new day brings another lesson.

 

[hlichten]

Harv - I agree with you completely that clinical trials serve a great purpose and that is in the documentation and control in my opinion. Unfortunately, for many clinical trials are exclusionary and not an answer for the present. I look forward however, to more and more trials being conducted and eventually some consensus being made as to the best cells and delivery method for treatment. I also was told that since there are no blood cells that no match was needed and then was told something completely different by a research scientist. The scientist I spoke with also said that cells were diluted and change when they are expanded in culture. He did not see this as a good thing. Another doctor is using a patient's weight as a method to determine how many uc cells that will be infused. It's like taking a history class and each new day brings another lesson.

That's why I mentioned that currently most trials are a "pain to qualify for, and a pain to participate in, but it has become painfully obvious to me that they need to be funded well, flourish and lead to peer-reviewable results."

That was my statement acknowledging their current shortcomings, but also recognizing that getting such research to truly work in the coming years is the only likely way that we will find fully verifiable treatments and cures.

Until then, it will remain the undocumented, unverifiable crapshoot that foreign treatments currently are. People don't often know exactly what they are getting, what to expect and what their true odds are of improvement.

This needs to change, and it won't ever change by people paying large amounts of money for treatments at foreign clinics.

As for your point about expanded cells, I have also heard some of this, but don't know the real truths about it. Since I have never received uc cells, it has not been a concern affecting me directly, but I would like to know.

 

[Achillian]

'Until then, it will remain the undocumented, unverifiable crapshoot that foreign treatments currently are. People don't often know exactly what they are getting, what to expect and what their true odds are of improvement.

This needs to change, and it won't ever change by people paying large amounts of money for treatments at foreign clinics.

As for your point about expanded cells, I have also heard some of this, but don't know the real truths about it. Since I have never received uc cells, it has not been a concern affecting me directly, but I would like to know.'

I know what you mean Harv, but are we not the human guinea pigs here? Whatever about the huge amounts of money some people are expected to pay, there are no guarantees of success as I see it.
Another point, as far as I know even bone marrow cells are sent to a lab to be multiplied. I know I was told mine were, hence the eight weeks between marrow extraction and cell application.
As for methods of application, I know some sc doctors say they can inject directly to areas affected, but surely they're washed out by normal blood circulation very quickly??
Best wishes,
Anne.

 

[hlichten]

...I know what you mean Harv, but are we not the human guinea pigs here? Whatever about the huge amounts of money some people are expected to pay, there are no guarantees of success as I see it.
Another point, as far as I know even bone marrow cells are sent to a lab to be multiplied. I know I was told mine were, hence the eight weeks between marrow extraction and cell application...

We are "human guinea pigs here" with no guarantees of success, absolutely.
No argument there.

At some point, however you have to step back and reexamine the criteria that you are using to make a decision, and decide if there is enough information available to make a logical one.

There is also the "medicine vs alternative medicine" argument, and unlike some people here, I have never been a proponent of alternative medicine.

Yes, some marrow extractions are then multiplied.

 

[barbara]

Alternative means what

I think some interesting info is coming out of this discussion. If your own cells are taken and then cultured to allow them to multiply, it is my understanding that the risk is there as far as purity. There are some new things on the block however, where certain, patented cells in most cases, will be extracted, isolated, purified and reinfused without culturing them to expand. It can all get horribly scientific for those of us who aren't scientists, but I really think there is a myth that if you get your own cells there is no risk. This just isn't so. As far as alternative medicine, is stem cell therapy alternative medicine? Many things such as acupuncture which once was considered to be totally TCM medicine are now crossing over into our own medical facilities here in the U.S. It is offered at Kaiser where I have my insurance. Do we then not consider it alternative any more since traditional western doctors are using it? Again, I am seeing a lot more positive results than you have Harv and I could have wound up 6 feet under by this time without stem cell treatment. It hasn't gotten me where I was promised to get, but I will continue on with my quest and not look back with regret, but look forward with better knowledge of what to expect and demand when I am ready for another round.

 

[hlichten]

I think some interesting info is coming out of this discussion. If your own cells are taken and then cultured to allow them to multiply, it is my understanding that the risk is there as far as purity. There are some new things on the block however, where certain, patented cells in most cases, will be extracted, isolated, purified and reinfused without culturing them to expand. It can all get horribly scientific for those of us who aren't scientists, but I really think there is a myth that if you get your own cells there is no risk. This just isn't so. As far as alternative medicine, is stem cell therapy alternative medicine? Many things such as acupuncture which once was considered to be totally TCM medicine are now crossing over into our own medical facilities here in the U.S. It is offered at Kaiser where I have my insurance. Do we then not consider it alternative any more since traditional western doctors are using it? Again, I am seeing a lot more positive results than you have Harv and I could have wound up 6 feet under by this time without stem cell treatment. It hasn't gotten me where I was promised to get, but I will continue on with my quest and not look back with regret, but look forward with better knowledge of what to expect and demand when I am ready for another round.

Well, as you allude to, some positive results in my case would have gone a long way. I am still a firm believer that stem cells in some form, administered in some way will help with a variety of ailments, but obviously not everybody in every case every time. We are some distance from that day, however.

As for alternative medicine, I am not against it's use or putting it down. There are a lot of things that I have not tried, and I don't doubt that some of it is good, some not good. I am just, as I said, not a proponent of it. I frequent various conventional doctors, for better or for worse!

 

[karl wagner]

my doctor said when someone gets no changes or benifits the cells were rejected , for some reason died, or the nature of the problem was hereditary. I do know he made go back to the mayo clinic to get an opion from my ph doctor to see if my case was hereditery or idopathic. I know he would not treat someone else because there father had diabetes.

Like harv said its still early in the game.

 

[Connie Golden]

New Clinics

Seems like most every time I reply to a Thread, I lose it at the very end. Illl try again and hope that a similiar thread doesn't drop out of it's hiding place.

I am anxious to hear about the new clinics as I want to try to get to another one if I can. After having live cells twice in Mexico and stem cells 10/4/07 in San Diego, I feel as though the cells have helped me however they have not provided repair work I need and feel sure stem cells will at some future date. My age, 73 and very advanced stage of COPD is not in my favor.

I had some bouts with flu this winter so I am sure this did not help my little stem cells do their thing. I still haven't gotten back to full speed. Think I'm operating at about 75% of where I was before getting sick.


I am also waiting for the new list of supplements as I am coming to the end of my six month supply. How is this coming?

All best, Connie

 

[barbara]

SeaChange site

Connie - As some of you may know, SCB asked us to help with their supplement program.We were delighted because it is hard to go shopping when you don't feel well and many of the supplements can be hard to find. We took on the task and came up with some formulations that are much easier. You no longer need to have tons of bottles on your counter. You can visit our site by clicking on the SeaChange icon on the home page of this forum or go to www.seachangeforlife.com The StemBoost 1 and 2 products were made for the post stem cell therapy that many of us were given. Our forum members can put the word PIONEER in the promotion box and receive a 10% discount on any purchase. Jeannine and I both are very interested in supplements and other health products and we spent a lot of time researching and trying the products on the site. I also posted my regimen on the forum yesterday. We have learned of a couple of new clinics recently. One of them is going to do a sponsor link, but we have had a problem with the banner size. This also happened with Regenecell. Sometimes, the banners sent to us are too large. The new doctor is having her son scale down the size and we sincerely hope to get it up soon. We also have been talking with 2 other research doctors who have another type of autologous cell therapy using a primitive cell that they have isolated. They feel that this cell may repair better than other stem cells. There is just so much going on right now. I do believe that we are going to be seeing more and more information come to light. Look at the major new strides just since last year - more clinicals, more clinic competition. This is all good for us.