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 .

@joelars

This was meant to be a general post not a specific reply but I'm not smart enough to figure out how to post.
I was speaking to the regenerative medicine researcher. I was told funding has been approved for a new stem-cell copd trial. This is a small, 15 person, trial. The underlying reason is to ensure donor lung, stem-cells are safe (donor as opposed our own). The point is, we could use our own without much risk of side effects but it isn't cost effective to remove ours and grow the millions needed from those relatively few. It is cost effective to use a pre-existing donor bank containing billions of lung stem-cells (they know how to grow them). If this test proves donor cells are safe, they can proceed to larger test populations, focusing on the efficacy of the therapy on copd. So far, the effects of lung stem-cells while they haven't resulted in side-effects, they haven't been very effective in reversing copd. I understand in the previous tests only 5-10% of subjects reported a significant improvement of symptoms.
Any comments, I'd love to hear them. I want this to work, so badly.

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btw I meant the researcher at Mayo .

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Hello everyone! I wanted to see how everyone was doing. I am tagging @oldkarl @waterboy @cognac @joangma and @penlee in hopes of getting an update from you all. How is your treatment going? How are you feeling? Have any symptoms worsened or lessened?

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thanks for asking I had a PET scan and I have lung cancer. the cancer is stage 1 and is approx. the size of my fingernail. there will be only 5 treatments with a new radiation that kills very few good cells. hoping 4 the best.A PET SCAN IS THE ONLY WAY TO CHECK FOR CANCER AND SEE IT LIGHT UP BECOUSE OF THE ATOMIC SUGAR. WONDERFULL INVENTION. GET ONE TODAY NOT TOMARROW.

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@joelars

This was meant to be a general post not a specific reply but I'm not smart enough to figure out how to post.
I was speaking to the regenerative medicine researcher. I was told funding has been approved for a new stem-cell copd trial. This is a small, 15 person, trial. The underlying reason is to ensure donor lung, stem-cells are safe (donor as opposed our own). The point is, we could use our own without much risk of side effects but it isn't cost effective to remove ours and grow the millions needed from those relatively few. It is cost effective to use a pre-existing donor bank containing billions of lung stem-cells (they know how to grow them). If this test proves donor cells are safe, they can proceed to larger test populations, focusing on the efficacy of the therapy on copd. So far, the effects of lung stem-cells while they haven't resulted in side-effects, they haven't been very effective in reversing copd. I understand in the previous tests only 5-10% of subjects reported a significant improvement of symptoms.
Any comments, I'd love to hear them. I want this to work, so badly.

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all of us are hoping this is a break thru let us know where to apply for the testing. god bless

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@joangma

thanks for asking I had a PET scan and I have lung cancer. the cancer is stage 1 and is approx. the size of my fingernail. there will be only 5 treatments with a new radiation that kills very few good cells. hoping 4 the best.A PET SCAN IS THE ONLY WAY TO CHECK FOR CANCER AND SEE IT LIGHT UP BECOUSE OF THE ATOMIC SUGAR. WONDERFULL INVENTION. GET ONE TODAY NOT TOMARROW.

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@joangma– Good morning. I'm sorry about your diagnosis. It's been a long time since we have spoken.
I hope that you are not too uncomfortable. What made you check for lung cancer? How is your wife doing?

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@gypsyinthehood

My husband seems to be super sensitive to every drug out there including herbal supplements. He has COPD and the abuterol or steroid inhaler causes him to be so anxious and irritable he can't take it.
Then he can't breathe. So he'll take it cause he has to breathe and bam! He's so anxious he's losing his mind.
The anti anxiety meds make him depressed.
We don't know what's going on. Everything he takes either turns on him or causes anxiety or depression.
This isnt a typical problem and his doctors don't believe him. What could this be? Is this some kind of autoimmune problem or allergy or what?
Thankyou. Just trying to help him the best I can.

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Hello @gypsyinthehood, Welcome to Connect. There is another discussion where your questions will be more visible to other members discussing COPD and treatments. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Lung Health > COPD/ Emphysema
https://connect.mayoclinic.org/discussion/copd-emphysema/

You mentioned that your husbands doctors don't believe him. Are you able to go to his appointments with him to support what you husband is describing for his symptoms? Also, have you considered getting a second opinion?

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My husband seems to be super sensitive to every drug out there including herbal supplements. He has COPD and the abuterol or steroid inhaler causes him to be so anxious and irritable he can't take it.
Then he can't breathe. So he'll take it cause he has to breathe and bam! He's so anxious he's losing his mind.
The anti anxiety meds make him depressed.
We don't know what's going on. Everything he takes either turns on him or causes anxiety or depression.
This isnt a typical problem and his doctors don't believe him. What could this be? Is this some kind of autoimmune problem or allergy or what?
Thankyou. Just trying to help him the best I can.

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Hi @gypsyinthehood I wanted to join @johnbishop in welcoming you to Connect. You may have ntoiced i moved your post to this existing COPD discussion so that you can connect with others who have similar experience personally, or have a loved one going through something similar.

I'd like to tag @joangma @waterboy and @cognac as they have experience with COPD and may be able to offer you support as you look for a successful treatment for your husband.

Back to you @gypsyinthehood, I believe the point @johnbishop made of seeking a second opinion is a great idea. If you are comfortable sharing, what other treatments outside of abuterol and steroid inhaler has your husband tried?

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@ethanmcconkey I'm not sure how to start a new thread and I was hoping to get some ideas about a chest xray I had the other day. The dr's have sai nothing and while some of it I figure out the rest I'm not sure. I've had COPD for many years now and I think I may have hit the bump. Seemingly overnight my travel distance has become less than 10ft. Tired. o2 is okay while I'm doing things but then tanks more that normal when I stop and measure the reserve. I've posted the lab results in case others may have a had similar result. Also wondering who else may have hit the bum and what should I expect? Any and help and guidance is greatly appreciated. 006516296 RAD/CHEST PA AND LATERAL

RELEVANT HISTORY: COPD

Comparison: October 26, 2015.

Findings: PA and lateral views of the chest show normal cardiac
silhouette with mild atherosclerosis of the aortic arch. Diminished
lung markings in the upper lobes. Small calcified granuloma lateral
left upper lobe. Mild subpleural coarsened reticular thickening in
the lateral right midlung and scarring in the subpleural lateral left
midlung. No new airspace consolidation, pleural effusion or
pneumothorax. Increased AP dimension of the chest on the lateral
projection. No compression deformity.

IMPRESSION:

SEVERE COPD WITHOUT FOCAL AIRSPACE CONSOLIDATION.

Workstation: MCTPXNWK310

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@bb729 – If these symptoms have come on suddenly than I would call the doctor and see if he has gotten the radiologist's report yet. Have you told your doctor about this sudden change? I've been having CT scans for 22 years and still can't figure everything out. If possible we don't usually post personal information because we are not professional medical people and can not help with reading labs and tests or give you a prognosis. What medicines have you been on?

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Thanks for the reply. I know folks on here are not docs but thought maybe someone else may have had the same type(s) of things noted. The post I provided was the report from a few days ago and they compared it to Oct 2015. The doctor hasn't called back so I figured I'd reach out the members for their take. I was taking Tudorza and Symbicort which I went back to recently. My pulmonologist had me try Trelegy which looking back is when things started going down hill. I have taken Spiriva and Advair in the past but when I fall in the gap I need to switch to Tudorza and Symbicort (both AZ medications) because I meet their income guidelines for PAP and with GSK I don't. Medications for COPD are out of control and I've been on them for over 10 years. One thing that was in my retirement plan. Add to that uncontrolled diabetes for 7 years, a heart attack and UC what more could a guy ask for ?? ­čÖé

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I must make a correction "One thing that was in my retirement plan " Should read was NOT in my retirement plan.

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