COPD and Emphysema: Want to connect with others

Posted by redsox @redsox, May 29, 2018

Confused by PFT so much to absorb ! What are the treatments for Mild, Moderate and Severe .

the va is talking great care of me, they just gave me 5 doses of lazer radiation for my lung cancer, and said I was cancer free. the best cancer center in wi is uw health in Madison, wi. there is no better place, they have one of 3 new machines for your pet scan. my copd is watched very close and my doctor is looking into some new drugs for my nebulizer.

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@joangma -Such excellent news! please keep us informed!

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@merpreb

@marczappa– I'm a Mentor, but no problem at all. Good luck with your blood work!

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I can't find my older post from last year where you replied the other day.. What was the newer medication you mentioned that combined the ones I am taking? I will ask my Drs about it. Thanks. Is there a way to search for posts we have made here ?

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@marczappa

I can't find my older post from last year where you replied the other day.. What was the newer medication you mentioned that combined the ones I am taking? I will ask my Drs about it. Thanks. Is there a way to search for posts we have made here ?

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Hi @marczappa, The easy way to find one of your own older posts is to click on your profile name (@marczappa) and it will take you to your profile and you will see your older posts with links to the post in the discussion where it was made. Just click the View & Respond link under the post you want to go to.

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@merpreb I spoke with the researcher for Mayo stem cell trials today. They are currently testing the safety of the lung cells they grown in labs (as I told you before) Rather than rely on cells mined from the participants they need to know if the millions they grow (apparently cost effectively) in labs can be safely used. With these trials they are looking more at safety than therapeutic results. It could take a year to determine that lab grown cells are safe. If they pass this safety stage they will start trying them on volunteers, like me. I'm number 13 on their list of volunteers. It looks like I will get a turn at bat. I've kept myself in the best shape for this opportunity. Of course, the likely result is the cells won't even partially reverse my emphysema. That is what happened to most subjects (but not all) in all earlier trials. However, I'm sure they will make adjustments, in each subsequent trial, to find a way to unlock that rejuvenating door, and maybe I'll get lucky. A slim chance is infinitely better than no chance. Even a "placebo effect" would be appreciated. As I get older I question if a placebo benefit is "just in your head" or if psychological changes can sometimes trigger organic results.

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@joelars

@merpreb I spoke with the researcher for Mayo stem cell trials today. They are currently testing the safety of the lung cells they grown in labs (as I told you before) Rather than rely on cells mined from the participants they need to know if the millions they grow (apparently cost effectively) in labs can be safely used. With these trials they are looking more at safety than therapeutic results. It could take a year to determine that lab grown cells are safe. If they pass this safety stage they will start trying them on volunteers, like me. I'm number 13 on their list of volunteers. It looks like I will get a turn at bat. I've kept myself in the best shape for this opportunity. Of course, the likely result is the cells won't even partially reverse my emphysema. That is what happened to most subjects (but not all) in all earlier trials. However, I'm sure they will make adjustments, in each subsequent trial, to find a way to unlock that rejuvenating door, and maybe I'll get lucky. A slim chance is infinitely better than no chance. Even a "placebo effect" would be appreciated. As I get older I question if a placebo benefit is "just in your head" or if psychological changes can sometimes trigger organic results.

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@joelars– Good morning. That's an interesting point about placebos. I like to think that it might be both. If I am told that a certain drug is for something that I really need, like an anti-depressant I will feel the positive results almost immediately. Here are some sites for you to take a look at.
https://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2010/vol-123-no-1312/view-wallace
https://www.ncbi.nlm.nih.gov/pubmed/20389318
https://digest.bps.org.uk/2019/03/11/the-placebo-effect-digested-10-amazing-findings/
I'm rooting for you to get into the first trial when it's available, and that it will work. I know that you take an aggressive interest in anything that will improve your life, I do too with all of mine. It helps me keep some semblance of control over which only science and research has a hand in.
What are your favorite sites for medical reserach?

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@marczappa

I can't find my older post from last year where you replied the other day.. What was the newer medication you mentioned that combined the ones I am taking? I will ask my Drs about it. Thanks. Is there a way to search for posts we have made here ?

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@marczappa– Don't posts just have a mind of their own? I often wonder what their filing system is! It's called Trelegy Elipta. I hope that you will love it. When is your next appointment?

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6 months. Saw pulmonary last week. Stayed on spirivia and symbacort..
On another note how do I find out if I am on the list for future trials?
I was told last year I was but don't Have that information

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@marczappa – My suggestion is to go back to the clinic or hospital where you signed up for it. Was it Mayo Clinic? What type of trial?

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on phone last year with Mayo

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@marczappa – Do you have any idea what department you spoke with?

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@merpreb the only site I look at often is https:/www.clinicaltrials.gov/ct2/show/NCT04047810?term=stem +cells&recrs=ab&cond=copd&rank=1
the sites I feel are reputable say the same-the trials aren't successful. The best study came out of sweden. the trial used otherwise, very fit copd sufferers and found the cell infusions greatly slowed or maybe halted the disease progression. In a few patients, new small-cell growth was seen, but it may not have been significant growth. I'm afraid they have a long way to go before figuring out what else to do in addition to the stem cell infusions to start the regeneration process. But even in this early phase of the experimental process some people may catch small improvements, that has happened.

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