Looking for COPD help in Arizona

[azwoman]

I live in Phoenix, Arizona and am looking for a good pulmonologist that may concern alternative medicine treatment for COPD. I am also very interested in stem cell treatment or any other treatment that may be successful in addition to or instead of traditional prescriptions/medications.

I appreciate any feedback.

[barbara]

I don't know of any pulmonologists that fit the bill in Arizona because I don't live there. As the host of the Ask the Doctor this month, Dr. Kadish, commented, COPD stem cell treatments are not that well documented. There is a long way to go before anything definitive as far as improved lung function or regeneration can be known. Look for a clinic that does offer pre and post testing or requires that you do it yourself, if you really want to base the outcome of a treatment on something more than conjecture. I am guilty too of just going off for treatment when for a few dollars more, I could have made an appointment with my own doctor for a lung function test.

My own doctor, Dr. Terry Grossman is an MD who also uses alternative medicine in his practice. He has had no qualms about prescribing Daliresp for me and he also supports stem cell therapy (he is going through the ICMS accreditation program). It's a great combination I feel because quite frankly, for me, Daliresp has done an awesome job and yet my doctor is open enough to not just put the kabosh on other alternative treatments. I feel lucky to have him. I hope you find a good doctor in Arizona.

[purplerain]

I've been looking for a place for my Father to get cell's and checking out this forum and awhile back there were wonderful review's for some people JC the fox and Barbara who were doing very well,I haven;t seen anything from the fox but Barbara said a while back she had cells and was walking all over walgreens alone with out help,now seems like the focus is on a med and cells are not as good as once thought Is there any one out there that can say they got any benefits from cells,we don't have a lot of money to throw away if there is little to no help
I just remembered the fox did say he had been walking very well I have been looking so hard on here that it gets confusing,so what is the bottom line,Dad has been offered to be put on the lung transplant list but that scares me some
Hope I get some feed back on what to do,I would like my Dad around a little longer :o

[barbara]

Clinical studies are direly needed for COPD and many other diseases. There is simply no evidence that would lend support that every COPD patient is going to derive benefit from stem cell therapy. I don't know of anyone who has only had one treatment and felt they needed no additional treatments to feel normal or to not backslide. Some have reported improvements in various stages, others have stated they got nothing from treatment. So far, with the exception of a couple of offshore clinics, this evidence has all been anecdotal to the best of my knowledge. With that in mind, I feel that patients who are going to have to make significant financial sacrifices should explore all other possibilities first. I started taking Daliresp last November and the medication has made a significant improvement in my life. Statistical information compiled during the clinical studies required by the FDA for Daliresp have shown that lung function did improve for most patients. This was not anecdotal evidence. It costs a lot less than stem cell treatment or a lung transplant, so my point is, patients might consider working with their own doctors to see if they feel the medication is something that might work for them before committing financially to a treatment with no long term track record.

I still have high hopes that clinical trials are on the horizon. Without them, we are simply left wishing and hoping that patients by the hundreds will post about fantastic improvements and the media will be full of wonderful stories about stem cell treatment. Since that is unfortunately not happening, we are simply left with no solid evidence at this point. A few clinics are involved in the accreditation program with ICMS which I believe is a good program and there are some companies that have clinical trials going for some diseases, but no clinicals yet for COPD in this country.

[JC the Fox]

Purplerain - I have documented the improvement in my ability to walk for longer times before my sat's drop below 95. Even that, however, is anecdotal, as I have no doubt that some of the improvement is due to strengthening of other muscles; but I believe a lot of the improvement is due to the stem cell treatment. I just got back from Nevada today, where I had my second stem cell treatment.

I did not have my first treatment until February of this year, as I had to wait until the very end of January to have a full set of PFT's performed; and I wanted a verifiable baseline. I will have the next set performed on September 14th, and I will post those numbers here as soon as the VA pulmonologist checks the findings and releases the info to me.

The local VA doctor and I have agreed that he will not prescribe Daliresp until after these tests, so that they show only the results of stem cell therapy.

[purplerain]

Thank's the fox,I would read in the past a lot of positive outcomes with cell's you seem to be the only one that is getting benefit as far as this forum I was looking at another forum and they don't even want to hear the word( "cell's)
I know it take's years for a "drug" or "treatment" working with the FDA,my Dad spent hour's looking up thing's
Is there any one else that have had more than one treatment and still not had any improvement,I know there is a Dr in So Cal that we are going to look into he take's the cells from the bone marrow,sounds painful but he's not to expensive
I will keep looking and I hope your cells work for you the fox,where did you go??may be if the place you went to are a better price but of course money won't mean your getting good treatment or cell's :(

[RichardN]

JC

Can you update us in the next few days to weeks how you are feeling and how your sats are performing prior to your pft ? Interested to see after your second SC treatment if you progress further from the first treatment

[azwoman]

Thanks for the feedback Barbara, where is Dr Grousman located. Also JC can you tell me where in Nevada? and Purplerain which doctor in California?

I appreciate the responses - thank you.

If any else knows of resources in Arizona please do let me know, as I have been a bit anxiety ridden over all of this.

[barbara]

Dr Grossman is in Colorado. I believe he may start to do stem cell therapy soon as he has joined the accreditation program with ICMS. I will ask him.

JC was smart to do PFT testing. He also is smart to exercise which as we all are told we should do as it can help out a lot with this disease. What would be good however, would be to have at least 5-9 other patients with a similar amount of lung function as JC has that got the same treatment and were also doing a fair amount of walking. Then this could be compared to yet another similar group that got the same treatment but did not do any exercise. This could help determine whether the stem cell therapy was actually responsible for increasing lung function, if indeed, his PFT's he will have show an increase. Unfortunately, this kind of testing is not taking place in any clinic that I am aware of in the U.S.

Purplerain - There are many of us on here who have had multiple treatments. Unless a patient has a very mild condition, I don't know of any type of stem cell treatment that is going to result in any significant increase in lung function after only one treatment. I do think inflammation can be tamped down with only one treatment, but that's about it. I also think there is a placebo effect that is real for many patients. Some treatments use growth factors as well which give you a boost initially. I had 3 treatments at the clinic where JC went and there is no way I could come close to walking like he does. I still need supplemental oxygen 24/7. I do however live at a high altitude. I have also had marrow extractions (not nearly as bad as they sound), an adipose therapy which I thought was going to end my life, umbilical cord and placenta treatment. I also have noticed that stem cell therapy does not prevent bronchitis or viral or bacterial infections all of which I have come down with following treatments. I don't know if I caught something from traveling or from the treatments, but I can remember several occasions where I was ill after getting therapy.

I don't mean to dash anyone's hopes, but right now, it's a crap shoot. If you have the money to experiment, and it's what you really want, go for it. If it will create a hardship, then why not try Daliresp first as I have mentioned before? Keep in mind when calculating costs that you may need more than one treatment and there are also travel costs involved. It becomes an expensive, unproven experiment and that is probably why the other forum you visited doesn't even want to allow members to discuss stem cell treatment. In my opinion, that isn't fair to members who want to learn more about it., but whoever made the rule, owns the forum and that's the way it is. This forum was started because Jeannine and I returned from having stem cell therapy and became very ill afterwards. There was no support out there or discussion on the subject. Just because we started this forum, doesn't mean however, that stem cell therapy has any kind of great success record yet. It's still in its infancy. There is so much yet to learn and there are a lot of sharks in the water simply wanting to relieve patients of their hard earned money.

I am sure I sound like a broken record most of the time, but treatments can be dangerous, expensive, non productive as much or more often than treatments that have significant, lasting results. I believe the potential of stem cell therapy is there, but all the answers just aren't available yet.
Research seems to drag out and many are running out of time. This is what is so frustrating about the lack of serious clinical studies in this country, but without them, like it or not, we aren't going to have any scientific evidence to help with our decision making.

[azwoman]

Hey thanks Barbara! I have a meeting next week with an alternative medicine doctor. I will post if anything of interest comes from it. Again thank you for taking the time to share the wealth:)

[danny]

I am convinced that stem cell treatment is helping the heart in COPD patients.. not really the lungs. I think those that are expriencing improvements are simply getting stronger hearts (either from the excersising, stem cells or even a placebo effect).. This in turn is causing the lungs to not have to push 02 demand on the heart and you are now able to get less SOB, excersise more. I hope JC's PFT show like a 10% increase (FEV1 and DLCO) from the stem cells, which will prove the cells are helping the lungs. I think simply exercising can make someone feel 100% better and even raise the PFT 5%, that's why they have pulmonary rehab classes.

[barbara]

Some of the first heart patients treated by Dr. Fernandez Vina also showed an improvement in their breathing. Dr. Vina then decided to treat patients with emphysema and some of them responded very well to his stem cell treatments. Others really didn't see any significant changes. This was back in 2006 I believe. Could it be that those that responded best had weakened hearts? I don't have the answer. Since no formal studies using stem cells are being done, then I would have to say that your guess is as good as any Danny.

The link below supports the fact that COPD patients are most likely to die from lung cancer or heart disease. I will ask Dr. Macchiarini to comment on this when he hosts the Ask the Doctor next month.


http://213.4.18.135:48080/202.pdf


Another possibility in my mind is that stem cells can help reduce inflammation. This helps a patient feel better initially, but if the stem cells are not doing any real regeneration or are not able to stop what is causing the inflammation, the effects are temporary and the patient at some point feels they need more stem cell therapy. Taking Daliresp daily cuts the inflammation on a continual basis. Stem cells may go to other areas of the body that need repair when infused, but they simply may not be able to stop what triggers the disease in the first place. This is probably why Dr. Kadish made his remarks that he uses more than just stem cells when he treats respiratory patients. It simply is not an easy disease to treat and if patients need to continually go back for more stem cell treatments it becomes out of reach for most. That's why I think trying Daliresp first is smart. A stem cell treatment might also be helpful in conjunction with the drug to help heal any heart or other damage, but the drug alone may be enough to get a person back to living a more normal life. I truly am impressed with what Daliresp has done for me. I have to thank Danny for championing the drug in the first place. I wasn't prepared for the nasty side effects, but reading a lot of online comments on blogs and other forums, most people are happy with it after they get over the side effects. Now, that patients know those aren't permanent, hopefully, more will at least give it a try. Best advice is to try it when you have no major commitments in your life. That way if you don't feel good, you can just stay home.

[Nicholas]

I live in Utah and moving soon to Ca,in the meantime I have many hour's to kill and have been looking into so many post's,I thought this site was about Stem cells and more and more it is leaning to Daxas and hardly a good word about the cell's,In recent week's a place in Las Vegas was all the rage now tie's are broken,people went there from what I have read,were they giving "bad" cell's
Barbara who is one of the many running this forum said a few week's back she was feeling so much better and now nothing,then there is JC who seems to be doing well,how is a person to know when one minute it's the greatest place on earth and then "poof"
I also looked up Freeda Branyon she said on this forum she was a Naturopath
Dr not really a Dr but it was known here,if she sold umbilical cell's then she should go to prison taking money from the sick knowing that they would't help is a crime in it's self
The Dr in Co may be looking into cell's according to a post how would I check him out and is it legal
I'm glad to hear that Daxas is helping people,maybe on my next visit to my Dr he'll will write me an rx,I will continue to keep looking for cell's maybe even leaving the US if I have too,what med's are there beside's Advair and Spriva
Good info here,will keep watching and maybe something good will come along
N G Utah

[barbara]

This forum is for support for patients and for stem cell discussion as well as any other discussion that will help patients. I have stated for a very,very long time that safety must come first and that there is no way to determine efficacy without genuine studies. If you are looking for sure fire success, it's not going to happen. Stem cell therapy is in its infancy. There is no magic bullet. Lung disease is proving to be one of the more difficult diseases to treat with any measurable, long term success. That is why I encourage members to try Daliresp (Daxas) because it has undergone clinical studies and is FDA approved. It only recently became available in the U.S. so older posts would not mention it. Stem cell therapy for COPD in the U.S. on the other hand has no clinical studies available approved by the FDA. I am very pleased with this medication and will continue to spread the word.

Most people have no idea how heart wrenching it can be to moderate this forum and receive dozens of personal e-mails, many from people who simply cannot afford stem cell therapy or will have to sacrifice greatly to be able to do so. Many also do not take into account that one treatment is more than likely not going to be sufficient if their condition is severe. If there is a cheaper alternative, that has been properly tested and is approved by the FDA, then of course I will recommend it. The same with any approved clinical trials that are available. This forum is not about endorsing private clinics or doctors. It's about helping patients, all patients, not just those that can afford expensive stem cell treatments. It's also about getting people involved in enlightening others towards the dilemma many of us face who are terminally and chronically ill and are being told that our own stem cells are drugs. We need to educate the media, politicians, our own physicians and the general public. Unfortunately, when clinics fail to insure our safety (Branyon's operation sounds like a complete nightmare) or care about the efficacy of their treatments, then patients need to consider the consequences of being treated at such places. I feel safer taking one tiny pill a day then I do getting stem cell treatment at this point. Too few genuine humanitarians, too many searching for the pot of gold.


If you live in the United States, you need to ask your doctor for Daliresp, not Daxas. You also might want to join www.COPDliving.com if you have questions about COPD in general.

[Connie]

That is why I encourage members to try Daliresp (Daxas) because it has undergone clinical studies and is FDA approved. It only recently became available in the U.S. so older posts would not mention it. Stem cell therapy for COPD in the U.S. on the other hand has no clinical studies available approved by the FDA.

Barbara, While I understand where you are coming from. Daliresp (Daxas) has a long list of side effects. I have heard many testimonials on this site of how hard it is to get past them. I too am excited about how many people are benefitting from Daliresp but unfortunately many people are just simply to sick and/or do not weigh enough to attempt to get past the breaking in point. ( I unfortunately could afford to loose a few pounds)

At this point I am so fed up with the FDA that FDA approved means little or nothing to me. I for one would not be alive if I only did what the doctors or the FDA approved of. Without my supplements, acupuncture, and assorted alternatives I would have been a gonner long ago. The FDA also approves of Lung Transplants but that also is not for me. I hear daily of people dying from FDA approved drugs and procedures. I hear from the main stream media about how dangerous Adult Stem Cells are but where are the dead bodies? I also do not have enough money to throw it away but, if the only side effect of stem cell therapy is a shrinking bank account I would rather put my money on unapproved treatments than my life on the line for the FDA.

I very much appreciate all you, Jeannine, and everyone involved with this web site do to allow us all to share information so that we can make informed decisions. I know that many people (myself included) would not know about these treatments or these new medicines that are helping many of us without you. Oh yeah, did I mention I do not like the FDA.:D

[barbara]

Connie - I am not a big fan either of unneeded regulations, but unfortunately there have been deaths. I am aware of several myself. I also had a very horrendous experience and truthfully, I thought I was a goner. I still have damage from the treatment which I am afraid is permanent. I am basing my recommendations for Daliresp/Daxas on my own experience plus the experience of many others who are posting on blogs on the internet, not just this forum. The side effects for most are minimal compared to death or contamination one can receive from a clinical procedure that is not carefully done. Fredda Branyon could have exposed patients to HIV, hepatitis among other things. Any allogenic procedure has a lot of risks if the donor is not carefully screened. When this news was announced, I thought of the deaths that I am aware of and most seemed to be because of doctors doing experimental treatments, cutting corners or treating patients too sick to be safely treated in the first place. What gives anyone the right to experiment on us with their own unapproved methods? Some oversight is necessary or you might as well buy some stem cells on the internet and infuse them at home.

A concern of late is some adipose therapies not done in a clean room environment. This risks contamination. How about clinics where the staff is not well trained? What about peripheral blood treatments? How does a patient know if the blood is safely stored and labeled? What about marrow extractions done in an exam room, no where near any emergency help if needed. What about catheter infusions - are they guided by hand or by ultrasound?
Clinics simply need to follow safe standards and do patients the courtesy of following up with them after treatment and making an effort to determine if their treatments even work.

Many people simply cannot afford stem cell therapy period. For COPD patients, we are fortunate to finally have a drug that seems to be making a difference, so I would encourage people to try it rather than just give up.
The side effects like I said are temporary. Pharmaceutical drugs do play a good role at times and for me this has been one of them.

There is nothing wrong in advocating that clinics do genuine studies and insure safety above all else. I have trusted too many times that this was taking place and to my dismay and disillusionment, it was not. I am not up to taking such risks any more and demand better for my hard earned dollars. Cutting corners to increase profit is certainly not in the interests of any sick person that I know of. How much time and effort does it take to make a simple phone call after a person is treated and then follow up for a few months? How much effort is there to joining ICMS and using the patient registry? Too much is being asked of us in terms of risk and money at most clinics operating today.

I do hope a change is in the air. It is getting so that only the wealthy will be able to afford stem cell treatment. At least with FDA approval might come a change in the insurance industry and treatments could begin to get covered. If the FDA were not a presence in this country, I shudder to think how many bogus clinics would be putting their shingle out. Their work is not all bad and clinics that are FDA compliant to me have shown that they are interested in safety standards. Are the regulations too harsh? Perhaps, but that is something that can be worked out as clinics track patients and prove that treatments are doing patients some good and that they are safe.