lung coils in Canada

[hercules]

Are lungs coils available in Canada yet? If not when?
I have servere COPD and need help.
 
                               thank you

[shelley]

Testing is not yet going on in Canada, which is both unfortunate and the usual way of things. It takes Canada a bit of time, in most cases, to get on the band wagon. Nice to be safe but which this procedure in particular, it is being done worldwide with really good success. Think I'd rather at least be given the opportunity to say no than to know that we're just lagging behind.

[Deleted]

Hi, first time here.
I just watched the video from Holland where they were inserting the coils, this being the second insertion. I have also read the various posts from people either participating in trials or hoping to do so. I am puzzled. Is this procedure carried out in certain countries but only on trial in others e.g. The US?
Does anyone know which countries carry out the procedure, in other words, are now past the trial period.

[George Tortarolo]

I'm at stage 4 and am trying to get on the coil trial in 2 US locations. If I'm not accepted, I'll go to and pay for the procedure out of pocket if necessary. Any word on if any one does the Coil LVRS procedure as a routine Procedure???





Thanks,





George T New Jersey, USA

[fredtx]

I am responding to your questions about the Lung Volume Reduction Coils (LVRC) clinical trials that are on going in the US. From what I have read, this trial is being conducted in 25 locations in the US and the sponsor company, PreumRX, is hoping to get 315 individuals to receive the coils for submission to the FDA. As far as I know, this procedure is not done as a routine procedure anywhere in the US but it is being done in Europe. I do not have any specific knowledge on whether the patients there are receiving the treatments in a test environment or just as any other routine procedure that a physician feels could be beneficial and appropriate for their patient. Hope that this will answer your questions.

[Blossom/Jackie W.]

I only ran this quickly and haven't reviewed them at all so plase keep it in mind.

Check these two please

clinicaltrials.gov/ct2/show/study/NCT01608490?show_locs=Y#locn (Quebecc was noted)

clinicaltrials.gov/ct2/show/NCT01822795

[Mr. Wizard]

Thanks for the info from all. Still waiting on word from 2 sits I contacted. I still cant' find out if coil can be done in Europe in a normal, non trial, experimental procedure. Found out some work done in UK @ Kins' Hill Hospital in Nottingham. I'll try getting hold of Dr. Kemp, the surgeon who did the procedure and see what he says!

Mr. Wizard

[mel]

I believe they are doing the coils in Germany. I'm sorry I can't remember the website I read this on, but might warrant further investigation.

[Judy McTaggart]

May 14, 2014 9:33:55 GMT -5 shelley said:

Testing is not yet going on in Canada, which is both unfortunate and the usual way of things. It takes Canada a bit of time, in most cases, to get on the band wagon. Nice to be safe but which this procedure in particular, it is being done worldwide with really good success. Think I'd rather at least be given the opportunity to say no than to know that we're just lagging behind.

 Thank you Shelley, I'm stage 4 and live in Canada. I'm so afraid I get many infections and I know my time is limited.
I just wish like you say that I could be given the opportunity, I would take it. I have nothing to loss.

[Judy McTaggart]

If we had to pay for these Reduction coils does anyone have a guess at how much it would be?

[jim]

Hi Judy, I live in Australia, so I don't know much about what is going on in Canada, but keep dropping by, one of our Canadian friends is sure to help you soon.

I hope you had a good day.

[sandy07]

Try calling someone. Hospital maybe? I don't know who would have the answer to that.

[skate4life]

Since the coil trials (the PreumRx study - spelling?) started in the USA, I have been following personal reports (not journal articles) and the feedback has been very interesting. But even so, the consensus seems to be that these coils are not performing as well as anticipated. This morning there was an interesting report from someone who spoke with one of the study doctors:

"They are in use in some other countries but in the U.S. they are still in trials. The first U.S. trial had about a 5 to 6% improvement in FEV1 overall. (I have read this also in a Journal.)
BUT! That was including everyone and it turns out some lung don't respond the same as others. Just as some arteries will grow new ways of moving blood when they are blocked, some lungs have more than one way to get air to some areas.
If there are these extra passageways, a coil or valve can't actually shut off the area. They have now developed a way to test for that condition and the testing is done during the bronchoscopy. If the person doesn't have extra passageways, they go ahead and put in the coils and if they do have them, they stop right there and you don't get them.
So they are hoping for a much better percentage of improvement this time." (Sharon in Union City, CA)

Docs have been trying for years to find the perfect coil, valve, glue, etc. and I don't think they have found the ideal - getting closer, but it is still a risk for participants. IMHO

[Judy McTaggart]

Jul 9, 2014 5:11:01 GMT -5 jim said:

Hi Judy, I live in Australia, so I don't know much about what is going on in Canada, but keep dropping by, one of our Canadian friends is sure to help you soon.

I hope you had a good day.

[Judy McTaggart]

Thanks Jim, I will.
You have a good day also.

[Judy Mctaggart]

I got a letter from Toronto Western Hospital. I will go there Oct. 23 pulmonary function test

[sandy07]

cheerleader0-viCongratulations. You're going to start down the path. Do you live far? will it be a long drive? Keep us posted. Other people's experiences are very important to us all here. You have a little time to wait yet but soon it will be here. But you must have had a PFT test before so you know what that's all about. I know they look for certain things when determining if you can get the coils. Hopefully you'll have what they're looking for. You must be a little excited just to get a letter. cheerleader0-vi

[Carmen]

Judy, I just got back from Palo Alto hospital with my aunt Monica and she was not eligible for the study because she had a heart condition. I can give you a name and number of who to contact there and hopefully you can become part of the study. You will be randomly picked to either get the coils or become part of a control group who will be able to get the procedure after 12 months if they participate in the study. Her name is Juliet and her number is 650-962-4463. If you can pass all the screening you have a chance of getting the coils!!! I'm saddened my aunt got disqualified today. We will get her to germany where they have been doing this for 5 years already with very good success!!! Call Juliet. She is very nice. My name is Carmen Konen and my aunt is monika walker.

[Carmen]

George, see my post to Judy a little while ago and call that number. Juliet is really nice and she is the coordinator of the program. My email address [e-mail] in case you need add'l info. I can at least tell you what I know

[Judy Mctaggart]

Thank you Carmen. I'm still in shock not sure what to do.

[sandy07]

Judy,,, One step at a time. First the PFT.

[COPD for 15 years]

I have been trying to get into the coil trial in the US for two years without success. The first time was because the residual volume number set for qualifying was unrealistically high and I did not meet that number. The last time I tried I passed the preliminary testing but the 315 slots had already been filled. Further research revealed that the procedure has been approved in Europe since 2008. It is performed in many countries and has a price tag in the UK of about 22,000 British pounds for both lungs. The trial calls for one lung at a time and a four to six month separation between procedures. In the UK they wait 30 days and each procedure is billed separately

[stoker55]

I found this little blurp from COPD World News Week of June 22, 2014 It is about Montreal though.


Metal coils used in new emphysema treatment



Montreal, PQ - Doctors in Canada, the United States and Europe are experimenting with a new treatment that involves inserting Slinky-like metal coils into damaged portions of the lungs to restore their lost elasticity, allowing patients to breathe normally. “What the coil does, actually, is it acts like a spring,” said Dr. Antoine Delage, of the Institut Universitaire De Cardiologie Et De Pneumologie in Quebec. “It recoils the lung back to a smaller size, so it’s easier for these patients to breathe.” Emphysema develops when the lungs become damaged, usually from a lifetime of smoking. As the damage builds up, the lungs lose their elasticity and have greater difficulty expanding and contracting. The chronic disease worsens over time, making it even more difficult for sufferers to breathe. Emphysema is sometimes treated by simply cutting out the stiff, diseased lung tissue. Taking medication or specialized exercise programs can also help slow the disease. But this coil treatment is something new that doctors can soon offer patients, Delage says. “It is … exciting to see there are new developments in a disease where there have been very few in the past few years,” he said. To insert the coils, doctors place a narrow tube inside a patient’s nose or mouth before threading the tiny coil into the airway of the lung. The coil then attaches to the diseased tissue and pulls it tight, compressing the unhealthy portion of the lung. This gives healthier lung tissue room to expand; several coils can be inserted to improve overall lung capacity. Art Grenier, one of the patients who has undergone the treatment, says he has felt a dramatic improvement in his breathing. Grenier started smoking at the age of 9 and has been suffering from emphysema for years. “I would have to stop every three or four words and catch my breath,” he says. “It was very difficult to do anything strenuous.” That all changed after the procedure. “My stomach was more relaxed, I didn’t have any pain in my abdomen, my diaphragm wasn’t compressed,” he says. “I can inhale deeply. I didn’t have problems anymore. It was amazing.” Early studies suggest that patients who’ve undergone the treatment report improved lung function and exercisability. However, more research is needed to determine which patients are best-suited for the treatment. Doctors say they are looking to test the treatment on 300 patients, screening for possible side effects like infection and pneumonia. Final results are expected early next year. While other treatments exist for emphysema -- also known as COPD, or chronic obstructive pulmonary disease -- the condition has no cure.

For more information: tinyurl.com/n6vp28j