Questions to ask?

[kygal]

Hi Barb & Jeannine,

We've also taken the first step for the stem cell therapy even though it might still be a ways off. I have an appt. to speak with the doctor from where you got your treatment this coming Sun. so don't have time for any books I've ordered to reach me. I know all I've read here but still feel like I'm walking in the dark here. Could either of you help steer me with questions you might have asked, etc. I'm even stepping out on a limb ordering these books at this time as my husband has exhausted his unemployment benefits and it's looking like it'll take until mid-October or November before he's approved for his disability with his employer and probably next year before we hear anything about his government disability. I'm really not even sure how we're going to live until then but I'm determined to find out all I can about the treatments to have that option open.

Thanks again for all your help with things and your pioneering spirits.

Hugs,

Mary

 

[barbara]

Questions to ask

Mary - let's hope some of the others chime in on this one. I was so in the dark when I first spoke to the doctor, that looking back on it, it's a wonder I found out anything. I did ask how long the treatment took. I also remember him talking a lot about how it worked. I just took notes at this point. John (one of the Pioneers) had a great set of questions he asked. Has anyone ever died from the treatment? How many cells would we get? How do we know the cells aren't contaminated? How long until we see some improvement? Will this cure everyone that gets it? There are just so many things to ask that you will not be able to cover them all, but get the 10 most important questions written down and try to go over them without getting off track. It is tough, because the doctor is extremely enthused about giving you the knowledge to know more about stem cell therapy than most medical doctors ever hoped to know. I think you will do fine. I don't know if our book is one that you purchased, but we specifically wrote it from a patient's viewpoint so that most of your questions could be answered. I wish you all the best in getting your husband treatment. You are certainly doing your best and I admire you greatly for it.

 

[danny]

Lung Stem Cells

All the doctors I talk to say the lung can't re-shape itself unless you use biomatrix scaffolds. Though stem cells may help regenerate some of the O2 exchanging cells, they will not repair the structure of the lungs. I am not so sure I believe them since all stem cells have reparative properties.

Danny

 

[Jeannine]

Danny

I have no idea what a biotmatrix scaffold is but I don't think doctors know much about stem cells considering few of them are willing to even test them on humans. I was told by a prominent research doctor not to go and have this done, but I went anyway because my future was bleak and in another year I would have most likely been homebound or possibly bed ridden.

There are no guarantees in life. I know of people who had lung transplants that didn't work, some died, some even got worse than they were before. The only sure thing we know is that if you do nothing you will definitely only get worse.

 

[John]

Questions to ask

The following questions and answers from my conversation with Dr Feinerman.
1) How many procedures have you done?
A) Hundreds
2) Have you published any papers on this procedure?
A) I'll send them to you in the mail. Too big to email.
3) Has anyone ever died from this procedure?
A) No.
4) What might I expect from this procedure?
A) Everyone is different. Some are cured but everyone should realize improvement
5) Why don?t our immune systems attack the stem cells?
A) The stem cells are too immature to be seen as a threat by the immune system
6) What is the possible adverse effect?
A) 2 cases resulted in a rash.
7) What do you need from me?
A) Current medical records, x-rays, and breathing test. Anything you have.
8) How long will the treatment last?
A) Indefinably.
9) Will I need to come back every year?
A) No, it?s a one time treatment

 

[lraynak]

Biomatrix scaffolds

Danny,
I did look up Biomatrix scaffolds. As the name implies it is a platform for using bio-materials together with (stem cells) to migrate to injured tissue and regenerate. There is not a clear consensus on just how this mechanism works, in fact, has given rise to a new area of research as organs and tissue differ throughout the body. I believe the massive dose of stem cells with bio-assists we received was the more productive therapy. This is an area where you might try to second guess whether or not we got the best method of embedding and regeneration was or was not the very best method. It's way beyond us as we're interested in results rather than theory and our improvement is the proof of the pudding.

 

[barbara]

Improvement Time Line

I think we need to remind everyone that when the doctors say 6 weeks, 90 days, etc. that is just a general time line they have come up with. Look at Nassin - off of O2 after only 3 weeks and that was using his own (as he says old adult stem cells) for treatment. (Nassin is 78 but acts 25.) Jeannine felt that her lungs could take in more air in 30 minutes after receiving the umbilical cord stem cells. There are so few of us in the world to have received this therapy, especially for COPD, that there is no way that the doctors are going to even be able to say "On average you will see this or that at 8 weeks, etc." They would have to average just a handful of people and that isn't much of a pool. I do believe my doctor when he told me that everyone he has ever treated for anything showed some improvements. Some more than others. He also said some see improvements immediately, others may take much, much longer. The lung according to him is one of the easier organs to regenerate. For the most part, I have felt better ever since my treatment on April 5 except for the week after when Jeannine and I were very ill with some bug and also around the 6 week period when I got SOB and it went on 24/7 for over a week. It is still up and down on each little bit of progress. The other day I could go without O2 and not desaturate. Yesterday, I was really tired and I didn't fare so well and had my O2 on most of the day. It is unpredictable right now, but I know this will change also. I firmly believe this treatment is going to allow me to get off O2 and I don't think I will ever be SOB again. I think that is a thing of the past. If you are going to get treatment of any kind of stem cells and think you are going to walk out completely cured, it isn't going to happen. I don't think anyone on this forum thinks that, but there are some who have crabbed in the past about if stem cells are so great why aren't we off O2 or why isn't Nassin totally SOB free? Things like that. It takes time to heal and regrow. How many years did it take for us to get in such bad shape? It truly is amazing then that in only a few weeks or months that we are receiving so many great improvements. More will come. Just be patient I keep telling myself and I remind you all of it too.

 

[kygal]

Thanks Anastasia

Hi Anastasia,

It sure is good to hear from another caregiver. Sometimes when I'm on these forums, I feel bad for complaining about being tired because I'm not the one who's sick...but it is tiring. I'm glad you shamed your hubby into researching, my hubby is still taking my "word" for things and I guess believes in me and what I research.

So glad to hear how well you hubby's responded to the treatment. How did you hear about the treatment? That's quite a journey you all took, I'm not sure if we'll fly or drive when we can afford it, but driving would take us almost as long (or longer). I do believe in this treatment and am bound and determined to find a way for Doug to partake of it.

Keep in touch on here, it's always great to hear from the caregivers perspective and feel free to personally email me.

Hugs,

Mary

 

[Beverly-IN]

The Treatment?

Hi Barb& Jeannie, Do you have to still keep oxygen on hand,and do you still use the meds you where prescribe for copd such as Advair and combivent etc? I'm a little older (61) are people my age getting this treatment?I'm so excited about this I could flip! I have to tell you I'm a little scared, but sounds so promising for a lot of diseases! I read on CI that they ask some of you to come to University of Utah for some study, that is really promising! I have a follow up appointment with my Pulmonary Dr on Mon and I'm going to mention this to him, he poo pooed the spiriva when it first came out,now he prescribes it to people, my brother is one! I want to see what he says about stem cells research! I will let you know his comments. I might be wrong about his reaction about stem cells, but I will see!
Hugs, Beverly-IN

 

[Anastasia]

Nelson's Older than Dirt

and Nasin's (????) older than Nelson. Yes Bev, people in their 70's are having this treatment and experiencing great improvments. I'm so happy you found the Pioneers!

 

[rosech44]

thanks for all your info

I've been reading and watching, and I am getting excited---I loved the questions and answers post, it answered a lot of my questions.

I have had Live Cell therapy 3 yrs in a row, and yes it did help me, but it is only temporary--I live to far to go back for boosters, so I only went once a year. With the LCT it works on everyone differently, helps some more than others. I feel that the Cord Blood Stem cells is more of a cure than the other--I just hope I will be able to save up enough money to get the procedure done, in the near future-- To the Pioneers, I thank you for being brave enough to try it, and share your experience with us--- I will continue to watch, look and learn, and ask questions---

Thanks---Rose

 

[kygal]

For Anastasia

Hi Anastasia,

I totally forgot to answer the first question you asked me in your reply. Yes, kygal is for Kentucky Gal.... You are actually one of the first people to ever pick up on that, especially where I'm living in Canada now. They all want to pronounce it KI-GAL and then look at me with a confused look...LOL Even though I've been in Ontario for almost 10 years, you'll never take the "Kentucky" out of me since I was born there and lived there for 42 years.

Hugs,

Mary

 

[squizz]

What is the cost of stem cell?

I would like to know how expensive this treatment is, please. Plus where did you have to go to have this done? Is there somewhere on this site that I can read more about the procedure?
I am happy for you and Barbra that you both are doing good.

Squizz

 

[Jeannine]

Replied privately

 

[Anastasia]

Age and Doctors

Barbara,
Nelson hasn't played 5 hours of tennis in one day since Noah landed the Ark. However, he was very active for most of his life...In 1960 he went to the Rome Olympics as a member of the US Swim Team. He sailed, played golf, tennis and racquet ball...so he was always moving. You can imagine how miserable he's been the last several eons (lol) not being able to do much of anything without SOB.
Now on to doctors...Nelson sees 5 and all were very supportive. Here is the interesting thing...of his 5 doctors only one is Ameican born and trained. 1 is an Iranian, 1 Columbian, 1 Israeli and 1 from Austria only his Internist (who oversees the whole process of caring for Nelson) is American born and trained..,but he is quite young. Each said you have nothing to lose, everything to gain and it it were me...I'd do it. We feel very fortunate to have these doctors.

 

[barbara]

What no tennis?

I received an e-mail directly from Nelson that said he was going out to play 5 hours of tennis (it sounded like a daily deal). Then unfortunately, it started to rain and he was unable to do this. Now you are telling me that maybe this isn't true? I am really shocked at Nelson for thinking he could pull one over on me and the rest of the Pioneers who received this same e-mail. I think he has some serious making up to do such as practicing his vacuuming skills around your house. He will probably claim he has the dreaded NOVAC disease, but I would at least make him do some windows or something. This is very naughty of him to have mentioned this, however, it does impress me that he was in the Olympics in Rome. I really don't care how long ago it was, it is still impressive. Maybe, we will let him slide on the tennis thing. Since his treatment is 2 months behind the time Jeannine and I went, he may just be experiencing the vivid dream stage that we both had for a short period of time.

 

[anney_uk]

To Jeannine and Barbara

I have had Live Cell therapy 3 yrs in a row, and yes it did help me, but it is only temporary--I live to far to go back for boosters, so I only went once a year. With the LCT it works on everyone differently, helps some more than others. I feel that the Cord Blood Stem cells is more of a cure than the other--I just hope I will be able to save up enough money to get the procedure done, in the near future-- To the Pioneers, I thank you for being brave enough to try it, and share your experience with us--- I will continue to watch, look and learn, and ask questions---

Thanks---Rose

Rose's message is somewhat puzzling to me - has she had adult stemcell treatment as opposed to cord blood stem cells? She says the effects are only temporary - I would like to hear what you think about her post.

Thanks

Anney

 

[Anastasia]

Good Question

Hi Anney!

I'm glad you asked , I was wondering myself

 

[Jeannine]

Anney

Live cell treatment is not adult stem cells. The stem cells are typically from sheep and although many have had good successes they are temporary.

If anyone has more with this type of treatment, can you please explain in detail.

 

[barbara]

Live cells

What Jeannine said is correct. That is the big problem with live cells in that they wear off. One of our original members, Ray, has had them also and while he said they really made him feel great, it was something you just had to keep going back to Mexico to have done again. The cost is very reasonable, but again unless you live very close to where live cells are offered, it is difficult for some people and it has to be frustrating to feel well and then notice that feeling tapering off until you don't feel well again. This forum is for Stem Cell discussion mostly, but we do not censor or mind people asking questions such as yours. This way we all learn. Thanks to Rose for her comments also.