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Post by zar on Jul 9, 2010 4:30:18 GMT -5
A talk by Dr Nicholas Hopkins,who is working with me at the Advanced COPD clinich
ttp://respifor.nutricia.com/videos/video-template/Hopkinson-1.f4v
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Post by susanny on Jul 9, 2010 9:16:31 GMT -5
can't click on it, zar....think it needs the 'h' in http:
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Post by zar on Jul 9, 2010 14:37:31 GMT -5
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Post by zar on Jul 9, 2010 14:47:25 GMT -5
He is very highly thought of but------a shy person.
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Post by zar on Oct 2, 2010 9:44:14 GMT -5
Well,I will give you the bad news first. Not from the horses mouth,as that will be on the 28/10/10.but one of his colleages was in the Muscle Lab and I happened to meantion the coils.A guy there was writting out my report,and said I will not be excepted. Then we all had a look at my scan. I thought I was watching the oil slick in the gulf.As the scan move so my right lung got darker(full blown Emphysema.My left was heavily scared from the TB,I had with a bullae.When I asked about the bullae being removed they said sometimes a bullae can help support the lung. I also asked about a lung transplant(if they have a spare ).No but MAYBE lvrs latter?,but for a man of my age 71 and the lung problems I had,I am doing WELL. I am 71 but not stupped,if they removed a lung the other lung would not beable to support me if something went wrong,and a lvrs,by that time to old or no here. I remember the first specalist I had,15yrs ago.He said,I have looked at you scan,and sometimes it is better to leave well alone,how right he was. But hey,I am moving on,not all of us will beable to have the stents,coils or vapor etc,but we will nead help for "Muscle Wasting". Thats the trial I have started now. I will come back latter about that got to grab something to eat,otherwise no muscles to muscle with .
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Post by susanny on Oct 2, 2010 23:16:00 GMT -5
I can imagine how disappointed I would be, so think you might just feel pretty much the same. Well, now I guess you know the facts. I will be interested in hearing about your Muscle trial. (Do you resemble dear old Jack Lalaine? My goodness, that man is still a hunk of muscle!) You always sound like you are a pretty active guy, zar, and maybe what you learn can help all of us. Maybe it's something we can all be doing on our own? Motivation is what I need, or maybe it's a kick on the seat of my pants, .
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Post by zar on Oct 4, 2010 13:07:24 GMT -5
Well Friday started out to be a Friday 13th at the beginning. The trial I was suppose to be in is not the one I am in now I got all suited up jacket, batteries and muti wires etc.I was just going to put on the Dark Vadar mask.Then I said my Resp specialist told me to bring my ambulance O2 in case you want me to use it.Whoops,they told me to take a walk down the corridor and back,put a oximeter on and said sorry you have to do this trial without supplementary O2. The one I am in is for a BP medication to strengthen and hopefully build muscles. I had to go for,blood test (7files) full PTF,scan on my right leg quads,a 6 minute walk with a difference,you walk back and forth from one cone to another but there is a busier that every time you get to a cone you have to return to the other one faster.I did 150 m,think I could have done another 20m,but the little lady doctor stopped me,put a oximeter on my stats were 71,I said they had never been that low.She said I don't think you have had a work out like that before,with O2 let alone without, you done very well. Then I sat on the end of a bed,under the bed was a sling which I had to put my right foot in(ankle).They said that when I hear a busier I must kick forward as hard as I can.Did that 10 times you should kick 35kgs mine was 25kgs. Then there was what I can only describe as a figure 8 branding iron on a broom handle.they put pillows behind you so you can lay back at 45%.They put the branding iron in your groin,tell you to relax and then give you a electric shock,!0 times, yes you hear right. They bring out another one like a tennis racket,that they strap it on your quads and another few shocks,which are not as bad as the first one I think they leave your foot in the sling so when they give you the shock you dont kick them between the legs or the little lady doctor under the chin . I now have movement band on my right biceps that I have to wear 24/7 except for one hour so you can shower, as it must not get wet. On the 11/10 I go back and then I think I will start the drug.
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Post by susanny on Oct 4, 2010 23:12:13 GMT -5
What the heck? First you give the image of Darth Vader, then I get Frankenstein in the groin image... Ouch! What is the purpose of all this, do you know? I mean, I know it's measuring, but what are they measuring in the groin, for Heaven's sake? And what do you have to wear that movement band for....I mean, what will it tell them, like how many flexes you do in a day? Just curious. /Boy, it sure was a full and busy/weird day, wasn't it? Anyway, it'll be good if the meds help you. I know we've talked about muscle waste with COPD a long time ago. At the time I thought we just needed to eat enough protein and exercise enough. Now I've found out we need more than that, personally. Hey, soon you'll be and you 'll have to post pics of your huge biceps!
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Post by zar on Oct 5, 2010 8:56:42 GMT -5
Susanny, The shocks must have affected my brain as well,Darth Vader,(spelling) . " but what are they measuring in the groin," I have known for a long time thats not a muscle , I think they send a shock in to a nerve and that sets up a reaction to muscles in the body. When I had tests for my peripheral neuropathy,they gave me quite a few electric shocks to mack the muscles move un-voluntary. "what do you have to wear that movement band for?" I think its to check my muscles now and see if there is any change in 3 months.At the moment I can reason why, like a soldier I am to do and d--.Hope not . We were to busy for me to ask to many question Friday,I will try to ask more on Monday 11/10 "I thought we just needed to eat enough protein and exercise enough. Is it that we cant exercise enough?. Most of us can put on weight which is not good for us. Look at a simple medication for heart attack, they take aspirin,maybe this BP medication will help us. Here something that they were doing trials in Canada for COPD but have stopped and are going o use it for HIV first. www.entrepreneur.com/tradejournals/article/110210797_2.html
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Post by susanny on Oct 5, 2010 9:51:43 GMT -5
Thanks for answering my q's. Wasn't able to connect with the link you provided. I think this is a great study you are partaking in. I can see it being used for other illnesses, too, if it works. Hopefully it works, although I'm not so sure I want to take another pill. I know they're easy to swallow (hopefully!), I just take so many now to battle the effects of others. Ridiculous. I have to take a break in between to let my stomach absorb some of the liquid I use to wash the darn things down with.
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Post by zar on Oct 5, 2010 9:53:29 GMT -5
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Post by susanny on Oct 5, 2010 21:15:32 GMT -5
Got it, Zar! Wow, do I wish this was available for me for all the reasons they talked about in the paper, except the HIV part. Don't have that, but have all the rest. I wrote down the info and am going to try and find out more, since this was from 2 years ago. This would be like a miracle drug for me! ;D
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Post by zar on Oct 6, 2010 4:24:25 GMT -5
Montréal, Canada - September 13, 2010 -Theratechnologies (TSX: TH) presented two scientific posters regarding tesamorelin, an investigational growth hormone-releasing factor being evaluated for the treatment of excess abdominal fat in HIV-infected patients with lipodystrophy and currently under regulatory review by the U.S. Food and Drug Administration, at the 50th Annual Interscience Conference on Antimicrobial Agents and Chemotherapy ("ICAAC") meeting, in Boston, from Sunday, September 12, to Wednesday, September 15. theratech.com/en/news-events/news.php?id=385 More specifically, when Theratechnologies investigated wasting in chronic obstructive pulmonary disease (COPD), tesamorelin was also able to show an increase in lean body mass and decreased overall fat mass in a small number of patients further demonstrating the ability of tesamorelin's anabolic (muscle building) and lipolytic (fat burning) properties. The ability of tesamorelin to increase the endogenous levels of growth hormone, within physiological range, is therefore an interesting candidate to use in restoring the growth hormone levels in abdominally obese subjects with moderate growth hormone deficiency www.theratech.com/en/news-events/news.php?id=321&year=2008
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Post by susanny on Oct 6, 2010 6:47:39 GMT -5
Thanks, zar. (You know, I have to comment on this co's statements about Forward thinking Information. They certainly are covering their butts on any statements they make.)
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Post by zar on Oct 7, 2010 3:59:16 GMT -5
Thats why trials are done with mice first,when you involve humans, they can take you to court.
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Post by zar on Nov 8, 2010 12:55:01 GMT -5
Well guys the 28th was what I expected, not suitable for any procedure that they have at the moment. Right lung full of emphysema,left lung to small and to much scaring from the TB.Areas of good lungs not large enough for stents or coils. Still on the "books" to come back every 6 months to see how things are progressing. The doctor could see that I was disappointed,and said that COPD had been left on the back boiler for the last 20 years.But now thing are really moving,there are new things that they are finding and working on every day. In 2013 there will be alot of new drugs coming on the market. Of course being a bit down,I said,If I am sill here then?. I cant see why not she said,you have only had one exacerbation all the time you have had COPD and that was last Christmas,and you have a good control of you breathing. Still in the trial for the muscle lab,saw them the same day, gave me the full treatment again plus a muscle biopsy took a piece of muscle from my quad in my left leg,as a treat . Have to keep taking the capsules and go back in 3 month.
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Post by valerie on Nov 8, 2010 15:08:03 GMT -5
Zar, sorry to hear this but let's hope there'll be some other trials which will be suitable in the near future. 2013 for these new drugs seems an eternity for us, but with good management and continuing not to have exacerbations will increase our chances.
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Post by susanny on Nov 8, 2010 22:19:30 GMT -5
I think about you often, zar. I guess what is, is. Your dr. sounds like a great gal. She's very encouraging, isn't she? Do you notice any difference from the capsules yet? I know it hasn't been long, but you never know. Did you have a great birthday, anyway? I hope you had a blast, you deserve it.
Sue
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Post by Blossom/Jackie W. on Nov 9, 2010 7:29:51 GMT -5
I'm sorry Zar; as I recall you had said you didn't think you'd qualify..... but; it sounds like you have a great Dr there so I would suggest that if/when anything new comes down the pipeline she'll have you in mind.
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Post by zar on Nov 9, 2010 9:15:56 GMT -5
Yes she is a great doctor,in fact everybody there is very efficient,even down to the receptionist. I had appointments for the 28 Oct and the 2 Nov,she changed the 2 Nov so I could go for both on the 28 Oct. Reason?,as she said to save me running up and down and I could come by cab for both. Then there was the young research doctor,who was going to take me down for blood test(it seem that you never go any where alone).When I told her that I had a infection in my arm last time. She said,ho,OK let me get you some coffee first then we will go. After I had my coffee she did not take me down for blood test,but took me to a room off the lab and she took it out of the back of my hand,She said that way was slower but I would have no problem with it.All I could see was a small pin hole. Did she have to do it?.I don't think so,just a very caring person. I met a woman who has been going there for 5 years,she is on 02 24/7.She thinks very highly of the clinic.This is the place to be,she said, First class staff, and state of the art equipment,what more can you ask for?.Thats true. There were 2 guys that had,had the stents,one had 1 in each lung at the very top and the other one had 3 in each lung Don't you think I am jealous of them,because I am not,but the guy with the 3 stents in each lung did not seem to breath very well, but of course I don't know what he was like before the stents. Susanny, no muscles like Popeye yet, ,but early days and thats if they have given me the drug?.
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Post by zar on Nov 25, 2010 10:18:29 GMT -5
Someone ask me why they did not offer me a lung transplant. I will ask the next time I go. Here is part of the report that they sent to my doctor. His CT thorax showed widespread and severe centrilobular emphysema with almost complete distruction of the lung parenchyma in the right upper lobe. There is also fibro-cavitatory disease of the left apex with adjacent thinkening of the pleura.His blood tests showed a slightly elevated urea of 9.7,BNPof 10 and a normal alpha-1 antitrypsin level(2.0g/L).He also had full pulmonary fuction tests which showed a TLC of 8.48,RV 4.74,RV%TLC 55.8,TLco 2.51,Kco 0.55,FEV1 0.84(28.7% predicted),FVC 3.45,PaO2 9. ,PaCO2 5.11,SaO2 94.2. The only numbers I know about are 23, 32,when I play roulette.
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Post by susanny on Nov 25, 2010 10:42:52 GMT -5
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Post by Blossom/Jackie W. on Nov 25, 2010 13:06:08 GMT -5
Actually Zar.... you're in pretty good shape for the shape you're in!
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Post by John on Nov 25, 2010 13:39:15 GMT -5
Zar I would agree with Jackie !You must be doing all the right things
Edited only to remove the Easter Egg from the hunt.
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Post by tawnya on Feb 16, 2013 1:49:28 GMT -5
My mother lives in Pittsburgh Pa and is schedule for the first surgery in the U.S. to have this surgery done. I am a google everything kind of girl yet there is very little about the product from the patients. At least I can not find it, this was the first. I was excited about her getting this procedure but now after reading this forum, I am a bit concerned. Should I be? It has been sometime since these post, are the patients ok?
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Post by chrisw on Feb 16, 2013 13:49:42 GMT -5
Hi Tawna, Helen was the member from the Netherlands who was posting about the coils. She has not been posting here lately, but she and Goof (another member from the Netherlands) are both members of a Dutch COPD group and Goof is on here fairly frequently, so maybe he can contact Helen or even have some information himself.
Anyway, the coils do look promising and I really hope that your mother gets the coils and that they work for her. Do keep us posted!
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Post by Deleted on Jun 28, 2013 17:10:47 GMT -5
Hi Group, I live in the US and just this went for 1st visit to see if I was eligible for the coils, here it is very,very hard to qualify for the treatment. They have screen 30 people so far and none have made it, guess I will be 31. I have been doing internet research on this for a while now and can't seem to find out if their is a country that is actually performing the LVRC on a regular basic as apposed to clinical trials. Does any one know if Germany or Sweden is doing it ? Just wondering, I assume the trials will last about 1 1/2 years here in the US and maybe, just maybe they will be approved, cause as it stands right now, we haven't got many choices to help us. Thanks for reading and any reply will be welcome, Edward
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Post by Blossom/Jackie W. on Jun 29, 2013 9:14:03 GMT -5
Hi Edward; good question.... why not contact the manufacturer and ask? www.pneumrx.com/contact-us/Good luck! And please let us know what transpires.
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Post by Ed on Jun 29, 2013 12:33:21 GMT -5
Thanks Blossom, that's 1 of them why didn't i think of that, so i wrote them will post what they say.
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Post by Deleted on Jul 2, 2013 14:36:46 GMT -5
My mother lives in Pittsburgh Pa and is schedule for the first surgery in the U.S. to have this surgery done. I am a google everything kind of girl yet there is very little about the product from the patients. At least I can not find it, this was the first. I was excited about her getting this procedure but now after reading this forum, I am a bit concerned. Should I be? It has been sometime since these post, are the patients ok? hi tawnya, did your mother get the coils and if so how is she doing? i went for 1st interview last week and haven;t heard a word from them, seems it is very hard to qualify for them in the us.
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