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D
DrRoe
Guest
sorry for the duplicate<br>
D
DrRoe
Guest
sorry for the duplicate<br>
D
DrRoe
Guest
sorry for the duplicate<br>
D
DrRoe
Guest
If I am reading the news correctly the VX770 will be available is six months or so. The research on it looks great and I've read comments from several folks who were in the clinical trials and they were all positive.
Dasjsmum, Just wondering was your son positive for any of the usual CF bacteria? My son's been on IVs and oral antibiotics for about 4 months for mycobacterium abscessus (NTM). His lung functions have dropped almost 20% since he was diagnosed with this NTM so I am hoping is the VX770 will help him get a leg up on his NTM by at least partially restoring the environment in his lungs. Any thoughts/experiences in this regard?
Dasjsmum, Just wondering was your son positive for any of the usual CF bacteria? My son's been on IVs and oral antibiotics for about 4 months for mycobacterium abscessus (NTM). His lung functions have dropped almost 20% since he was diagnosed with this NTM so I am hoping is the VX770 will help him get a leg up on his NTM by at least partially restoring the environment in his lungs. Any thoughts/experiences in this regard?
D
DrRoe
Guest
If I am reading the news correctly the VX770 will be available is six months or so. The research on it looks great and I've read comments from several folks who were in the clinical trials and they were all positive.
Dasjsmum, Just wondering was your son positive for any of the usual CF bacteria? My son's been on IVs and oral antibiotics for about 4 months for mycobacterium abscessus (NTM). His lung functions have dropped almost 20% since he was diagnosed with this NTM so I am hoping is the VX770 will help him get a leg up on his NTM by at least partially restoring the environment in his lungs. Any thoughts/experiences in this regard?
Dasjsmum, Just wondering was your son positive for any of the usual CF bacteria? My son's been on IVs and oral antibiotics for about 4 months for mycobacterium abscessus (NTM). His lung functions have dropped almost 20% since he was diagnosed with this NTM so I am hoping is the VX770 will help him get a leg up on his NTM by at least partially restoring the environment in his lungs. Any thoughts/experiences in this regard?
D
DrRoe
Guest
If I am reading the news correctly the VX770 will be available is six months or so. The research on it looks great and I've read comments from several folks who were in the clinical trials and they were all positive.
<br />
<br />Dasjsmum, Just wondering was your son positive for any of the usual CF bacteria? My son's been on IVs and oral antibiotics for about 4 months for mycobacterium abscessus (NTM). His lung functions have dropped almost 20% since he was diagnosed with this NTM so I am hoping is the VX770 will help him get a leg up on his NTM by at least partially restoring the environment in his lungs. Any thoughts/experiences in this regard?
<br />
<br />Dasjsmum, Just wondering was your son positive for any of the usual CF bacteria? My son's been on IVs and oral antibiotics for about 4 months for mycobacterium abscessus (NTM). His lung functions have dropped almost 20% since he was diagnosed with this NTM so I am hoping is the VX770 will help him get a leg up on his NTM by at least partially restoring the environment in his lungs. Any thoughts/experiences in this regard?
Hi Roe
<br>
<br>Yes, he's had pseudomonas for years. I dont know if it's still dwelling in there somewhere, and I dont know if they've tested him for it, I'll find out next time I see him (which was yesterday haha). He hasnt had any problems with colds, flus or the like, hasnt needed any antibiotics at all (since starting the v770), even oral <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>My guess is that is if the sputum is thinned down from use of the drug then pseudomonas shouldnt be able to affect him anymore. I actually dont know what the outcome is in that area. We all know that pseudo hovers around in the cf lungs dormant until a flare up and then over grows the sputum, thus requiring massive antibiotics to get it under control....and there's the inflammation as well. Neither of these aspects appears to be impacting on him at all, whereas before they definitely were.
<br>
<br>I'll find out if he has grown anything lately, but my guess would be no (because he hasnt been sick at all and has no cough at all). Before, if he spoke to you on the phone he would be coughing all the time during the conversation...I could always tell when he or my daughter were present due to their coughs (even if I couldnt see them in a crowd - say church.
<br>
<br>ps Roe, have you attempted to get on the expanded access for v770 at all? Your son might be eligible due to the decline in his fev1?? I know that you may be able to access it in the US, they have made it available for people on compassionate grounds, you might be able to get on it (I mean your son ofcourse haha). Send them an email via their web site...or you may have other avenues. I've already contacted them about my other two children and they responded to me (wont be able to get it on the expanded access here in Aus anyhow, but maybe next year).
<br>
<br>really encourage you to contact them and apply for hte compassionate grounds.<br><br>ps, I think his fev1 was 69% when he started and it went up to 85% within two weeks of taking the drug. He's maintained that fev1 since.<br>
<br>
<br>Yes, he's had pseudomonas for years. I dont know if it's still dwelling in there somewhere, and I dont know if they've tested him for it, I'll find out next time I see him (which was yesterday haha). He hasnt had any problems with colds, flus or the like, hasnt needed any antibiotics at all (since starting the v770), even oral <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>My guess is that is if the sputum is thinned down from use of the drug then pseudomonas shouldnt be able to affect him anymore. I actually dont know what the outcome is in that area. We all know that pseudo hovers around in the cf lungs dormant until a flare up and then over grows the sputum, thus requiring massive antibiotics to get it under control....and there's the inflammation as well. Neither of these aspects appears to be impacting on him at all, whereas before they definitely were.
<br>
<br>I'll find out if he has grown anything lately, but my guess would be no (because he hasnt been sick at all and has no cough at all). Before, if he spoke to you on the phone he would be coughing all the time during the conversation...I could always tell when he or my daughter were present due to their coughs (even if I couldnt see them in a crowd - say church.
<br>
<br>ps Roe, have you attempted to get on the expanded access for v770 at all? Your son might be eligible due to the decline in his fev1?? I know that you may be able to access it in the US, they have made it available for people on compassionate grounds, you might be able to get on it (I mean your son ofcourse haha). Send them an email via their web site...or you may have other avenues. I've already contacted them about my other two children and they responded to me (wont be able to get it on the expanded access here in Aus anyhow, but maybe next year).
<br>
<br>really encourage you to contact them and apply for hte compassionate grounds.<br><br>ps, I think his fev1 was 69% when he started and it went up to 85% within two weeks of taking the drug. He's maintained that fev1 since.<br>
Hi Roe
<br>
<br>Yes, he's had pseudomonas for years. I dont know if it's still dwelling in there somewhere, and I dont know if they've tested him for it, I'll find out next time I see him (which was yesterday haha). He hasnt had any problems with colds, flus or the like, hasnt needed any antibiotics at all (since starting the v770), even oral <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>My guess is that is if the sputum is thinned down from use of the drug then pseudomonas shouldnt be able to affect him anymore. I actually dont know what the outcome is in that area. We all know that pseudo hovers around in the cf lungs dormant until a flare up and then over grows the sputum, thus requiring massive antibiotics to get it under control....and there's the inflammation as well. Neither of these aspects appears to be impacting on him at all, whereas before they definitely were.
<br>
<br>I'll find out if he has grown anything lately, but my guess would be no (because he hasnt been sick at all and has no cough at all). Before, if he spoke to you on the phone he would be coughing all the time during the conversation...I could always tell when he or my daughter were present due to their coughs (even if I couldnt see them in a crowd - say church.
<br>
<br>ps Roe, have you attempted to get on the expanded access for v770 at all? Your son might be eligible due to the decline in his fev1?? I know that you may be able to access it in the US, they have made it available for people on compassionate grounds, you might be able to get on it (I mean your son ofcourse haha). Send them an email via their web site...or you may have other avenues. I've already contacted them about my other two children and they responded to me (wont be able to get it on the expanded access here in Aus anyhow, but maybe next year).
<br>
<br>really encourage you to contact them and apply for hte compassionate grounds.<br><br>ps, I think his fev1 was 69% when he started and it went up to 85% within two weeks of taking the drug. He's maintained that fev1 since.<br>
<br>
<br>Yes, he's had pseudomonas for years. I dont know if it's still dwelling in there somewhere, and I dont know if they've tested him for it, I'll find out next time I see him (which was yesterday haha). He hasnt had any problems with colds, flus or the like, hasnt needed any antibiotics at all (since starting the v770), even oral <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>My guess is that is if the sputum is thinned down from use of the drug then pseudomonas shouldnt be able to affect him anymore. I actually dont know what the outcome is in that area. We all know that pseudo hovers around in the cf lungs dormant until a flare up and then over grows the sputum, thus requiring massive antibiotics to get it under control....and there's the inflammation as well. Neither of these aspects appears to be impacting on him at all, whereas before they definitely were.
<br>
<br>I'll find out if he has grown anything lately, but my guess would be no (because he hasnt been sick at all and has no cough at all). Before, if he spoke to you on the phone he would be coughing all the time during the conversation...I could always tell when he or my daughter were present due to their coughs (even if I couldnt see them in a crowd - say church.
<br>
<br>ps Roe, have you attempted to get on the expanded access for v770 at all? Your son might be eligible due to the decline in his fev1?? I know that you may be able to access it in the US, they have made it available for people on compassionate grounds, you might be able to get on it (I mean your son ofcourse haha). Send them an email via their web site...or you may have other avenues. I've already contacted them about my other two children and they responded to me (wont be able to get it on the expanded access here in Aus anyhow, but maybe next year).
<br>
<br>really encourage you to contact them and apply for hte compassionate grounds.<br><br>ps, I think his fev1 was 69% when he started and it went up to 85% within two weeks of taking the drug. He's maintained that fev1 since.<br>
Hi Roe
<br>
<br>Yes, he's had pseudomonas for years. I dont know if it's still dwelling in there somewhere, and I dont know if they've tested him for it, I'll find out next time I see him (which was yesterday haha). He hasnt had any problems with colds, flus or the like, hasnt needed any antibiotics at all (since starting the v770), even oral <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>My guess is that is if the sputum is thinned down from use of the drug then pseudomonas shouldnt be able to affect him anymore. I actually dont know what the outcome is in that area. We all know that pseudo hovers around in the cf lungs dormant until a flare up and then over grows the sputum, thus requiring massive antibiotics to get it under control....and there's the inflammation as well. Neither of these aspects appears to be impacting on him at all, whereas before they definitely were.
<br>
<br>I'll find out if he has grown anything lately, but my guess would be no (because he hasnt been sick at all and has no cough at all). Before, if he spoke to you on the phone he would be coughing all the time during the conversation...I could always tell when he or my daughter were present due to their coughs (even if I couldnt see them in a crowd - say church.
<br>
<br>ps Roe, have you attempted to get on the expanded access for v770 at all? Your son might be eligible due to the decline in his fev1?? I know that you may be able to access it in the US, they have made it available for people on compassionate grounds, you might be able to get on it (I mean your son ofcourse haha). Send them an email via their web site...or you may have other avenues. I've already contacted them about my other two children and they responded to me (wont be able to get it on the expanded access here in Aus anyhow, but maybe next year).
<br>
<br>really encourage you to contact them and apply for hte compassionate grounds.<br><br>ps, I think his fev1 was 69% when he started and it went up to 85% within two weeks of taking the drug. He's maintained that fev1 since.<br>
<br>
<br>Yes, he's had pseudomonas for years. I dont know if it's still dwelling in there somewhere, and I dont know if they've tested him for it, I'll find out next time I see him (which was yesterday haha). He hasnt had any problems with colds, flus or the like, hasnt needed any antibiotics at all (since starting the v770), even oral <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>My guess is that is if the sputum is thinned down from use of the drug then pseudomonas shouldnt be able to affect him anymore. I actually dont know what the outcome is in that area. We all know that pseudo hovers around in the cf lungs dormant until a flare up and then over grows the sputum, thus requiring massive antibiotics to get it under control....and there's the inflammation as well. Neither of these aspects appears to be impacting on him at all, whereas before they definitely were.
<br>
<br>I'll find out if he has grown anything lately, but my guess would be no (because he hasnt been sick at all and has no cough at all). Before, if he spoke to you on the phone he would be coughing all the time during the conversation...I could always tell when he or my daughter were present due to their coughs (even if I couldnt see them in a crowd - say church.
<br>
<br>ps Roe, have you attempted to get on the expanded access for v770 at all? Your son might be eligible due to the decline in his fev1?? I know that you may be able to access it in the US, they have made it available for people on compassionate grounds, you might be able to get on it (I mean your son ofcourse haha). Send them an email via their web site...or you may have other avenues. I've already contacted them about my other two children and they responded to me (wont be able to get it on the expanded access here in Aus anyhow, but maybe next year).
<br>
<br>really encourage you to contact them and apply for hte compassionate grounds.<br><br>ps, I think his fev1 was 69% when he started and it went up to 85% within two weeks of taking the drug. He's maintained that fev1 since.<br>
Can I ask a favor???? Would someone taking VX-770 ask their doctor a question for me???? *PRETTY PLEASE* Would you ask them if they think there's a chance the drug would work on other CLASS III mutations.
VX-770 is aimed at correcting G551D and that is the ONLY mutation that they allowed in the studies, but other class III mutations are very similar to G551D. Our doctor said there wouldn't be enough of the other class III's to even do a study. But, my son carries R560T (and I know a couple other kiddos with it). R560T is a rare and severe mutation in class III, like G551D is. I really want to know if it's plausable or even logical to think that we may still have a chance with VX-770. I would like to hear what the doctors think. Our doctor said he didn't know (we are a smaller clinic that doesn't participate in the big trials). I'm trying to stay hopeful. The other mutation my son carries is DF508, so we are waiting on the other drugs as well. And praying for the success of them all for all of our CFers.
*sigh* I'm really, really, really wanting a chance to try VX-770. Hmmm... I wonder if the doctors do think it could work... if the insurance could refuse to let us try it since it wouldn't be for the specific mutation the FDA will have "approved" it for. I can't imagine trying to pay out of pocket for a possible $200,000 drug. Makes me sick to even think about. Sorry for my mid-morning ramblings.
If anyone would ask their doctor about vx-770 and class III mutations - I would sooooo greatly appreciate it.
Thank you so much,
Nedda
*ps - I had heard such wonderful things about vx-770, but my jaw dropped when i read that Joanna's son became pancreatic sufficient?!?!?! So exciting!!!
VX-770 is aimed at correcting G551D and that is the ONLY mutation that they allowed in the studies, but other class III mutations are very similar to G551D. Our doctor said there wouldn't be enough of the other class III's to even do a study. But, my son carries R560T (and I know a couple other kiddos with it). R560T is a rare and severe mutation in class III, like G551D is. I really want to know if it's plausable or even logical to think that we may still have a chance with VX-770. I would like to hear what the doctors think. Our doctor said he didn't know (we are a smaller clinic that doesn't participate in the big trials). I'm trying to stay hopeful. The other mutation my son carries is DF508, so we are waiting on the other drugs as well. And praying for the success of them all for all of our CFers.
*sigh* I'm really, really, really wanting a chance to try VX-770. Hmmm... I wonder if the doctors do think it could work... if the insurance could refuse to let us try it since it wouldn't be for the specific mutation the FDA will have "approved" it for. I can't imagine trying to pay out of pocket for a possible $200,000 drug. Makes me sick to even think about. Sorry for my mid-morning ramblings.
If anyone would ask their doctor about vx-770 and class III mutations - I would sooooo greatly appreciate it.
Thank you so much,
Nedda
*ps - I had heard such wonderful things about vx-770, but my jaw dropped when i read that Joanna's son became pancreatic sufficient?!?!?! So exciting!!!
Can I ask a favor???? Would someone taking VX-770 ask their doctor a question for me???? *PRETTY PLEASE* Would you ask them if they think there's a chance the drug would work on other CLASS III mutations.
VX-770 is aimed at correcting G551D and that is the ONLY mutation that they allowed in the studies, but other class III mutations are very similar to G551D. Our doctor said there wouldn't be enough of the other class III's to even do a study. But, my son carries R560T (and I know a couple other kiddos with it). R560T is a rare and severe mutation in class III, like G551D is. I really want to know if it's plausable or even logical to think that we may still have a chance with VX-770. I would like to hear what the doctors think. Our doctor said he didn't know (we are a smaller clinic that doesn't participate in the big trials). I'm trying to stay hopeful. The other mutation my son carries is DF508, so we are waiting on the other drugs as well. And praying for the success of them all for all of our CFers.
*sigh* I'm really, really, really wanting a chance to try VX-770. Hmmm... I wonder if the doctors do think it could work... if the insurance could refuse to let us try it since it wouldn't be for the specific mutation the FDA will have "approved" it for. I can't imagine trying to pay out of pocket for a possible $200,000 drug. Makes me sick to even think about. Sorry for my mid-morning ramblings.
If anyone would ask their doctor about vx-770 and class III mutations - I would sooooo greatly appreciate it.
Thank you so much,
Nedda
*ps - I had heard such wonderful things about vx-770, but my jaw dropped when i read that Joanna's son became pancreatic sufficient?!?!?! So exciting!!!
VX-770 is aimed at correcting G551D and that is the ONLY mutation that they allowed in the studies, but other class III mutations are very similar to G551D. Our doctor said there wouldn't be enough of the other class III's to even do a study. But, my son carries R560T (and I know a couple other kiddos with it). R560T is a rare and severe mutation in class III, like G551D is. I really want to know if it's plausable or even logical to think that we may still have a chance with VX-770. I would like to hear what the doctors think. Our doctor said he didn't know (we are a smaller clinic that doesn't participate in the big trials). I'm trying to stay hopeful. The other mutation my son carries is DF508, so we are waiting on the other drugs as well. And praying for the success of them all for all of our CFers.
*sigh* I'm really, really, really wanting a chance to try VX-770. Hmmm... I wonder if the doctors do think it could work... if the insurance could refuse to let us try it since it wouldn't be for the specific mutation the FDA will have "approved" it for. I can't imagine trying to pay out of pocket for a possible $200,000 drug. Makes me sick to even think about. Sorry for my mid-morning ramblings.
If anyone would ask their doctor about vx-770 and class III mutations - I would sooooo greatly appreciate it.
Thank you so much,
Nedda
*ps - I had heard such wonderful things about vx-770, but my jaw dropped when i read that Joanna's son became pancreatic sufficient?!?!?! So exciting!!!
Can I ask a favor???? Would someone taking VX-770 ask their doctor a question for me???? *PRETTY PLEASE* Would you ask them if they think there's a chance the drug would work on other CLASS III mutations.
<br />
<br />VX-770 is aimed at correcting G551D and that is the ONLY mutation that they allowed in the studies, but other class III mutations are very similar to G551D. Our doctor said there wouldn't be enough of the other class III's to even do a study. But, my son carries R560T (and I know a couple other kiddos with it). R560T is a rare and severe mutation in class III, like G551D is. I really want to know if it's plausable or even logical to think that we may still have a chance with VX-770. I would like to hear what the doctors think. Our doctor said he didn't know (we are a smaller clinic that doesn't participate in the big trials). I'm trying to stay hopeful. The other mutation my son carries is DF508, so we are waiting on the other drugs as well. And praying for the success of them all for all of our CFers.
<br />
<br />*sigh* I'm really, really, really wanting a chance to try VX-770. Hmmm... I wonder if the doctors do think it could work... if the insurance could refuse to let us try it since it wouldn't be for the specific mutation the FDA will have "approved" it for. I can't imagine trying to pay out of pocket for a possible $200,000 drug. Makes me sick to even think about. Sorry for my mid-morning ramblings.
<br />
<br />If anyone would ask their doctor about vx-770 and class III mutations - I would sooooo greatly appreciate it.
<br />
<br />Thank you so much,
<br />
<br />Nedda
<br />
<br />*ps - I had heard such wonderful things about vx-770, but my jaw dropped when i read that Joanna's son became pancreatic sufficient?!?!?! So exciting!!!
<br />
<br />VX-770 is aimed at correcting G551D and that is the ONLY mutation that they allowed in the studies, but other class III mutations are very similar to G551D. Our doctor said there wouldn't be enough of the other class III's to even do a study. But, my son carries R560T (and I know a couple other kiddos with it). R560T is a rare and severe mutation in class III, like G551D is. I really want to know if it's plausable or even logical to think that we may still have a chance with VX-770. I would like to hear what the doctors think. Our doctor said he didn't know (we are a smaller clinic that doesn't participate in the big trials). I'm trying to stay hopeful. The other mutation my son carries is DF508, so we are waiting on the other drugs as well. And praying for the success of them all for all of our CFers.
<br />
<br />*sigh* I'm really, really, really wanting a chance to try VX-770. Hmmm... I wonder if the doctors do think it could work... if the insurance could refuse to let us try it since it wouldn't be for the specific mutation the FDA will have "approved" it for. I can't imagine trying to pay out of pocket for a possible $200,000 drug. Makes me sick to even think about. Sorry for my mid-morning ramblings.
<br />
<br />If anyone would ask their doctor about vx-770 and class III mutations - I would sooooo greatly appreciate it.
<br />
<br />Thank you so much,
<br />
<br />Nedda
<br />
<br />*ps - I had heard such wonderful things about vx-770, but my jaw dropped when i read that Joanna's son became pancreatic sufficient?!?!?! So exciting!!!
sunshine39656
Member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on the v770 since November 2009 (i think). Speaking for him here, but he has told me that he feels great. He has not been sick once or had any antibiotics since starting the trial. He is back playing soccer etc. again....he is doing everything....he doesnt need digestive enzymes anymore (has been pancreatic insufficient since 5 mths)....he is 32. </P>
<P> </P>
<P> </P>
<P>OH MY GOODNESS!! Thank you for posting. I'm 32, also...I had thought that this drug wouldn't do much for the digestive part of CF, so this post has given me such hope!!!!</P>
<P> </P>
<P>I'm getting my genetic testing in December so I'll know what mutation I have. I'm really excited...I'm trying to not get my hopes up too much. </P>
<P> </P>
<P>Thanks again for posting.</P>
<P> </P>
<P> </P>
<P>OH MY GOODNESS!! Thank you for posting. I'm 32, also...I had thought that this drug wouldn't do much for the digestive part of CF, so this post has given me such hope!!!!</P>
<P> </P>
<P>I'm getting my genetic testing in December so I'll know what mutation I have. I'm really excited...I'm trying to not get my hopes up too much. </P>
<P> </P>
<P>Thanks again for posting.</P>
sunshine39656
Member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on the v770 since November 2009 (i think). Speaking for him here, but he has told me that he feels great. He has not been sick once or had any antibiotics since starting the trial. He is back playing soccer etc. again....he is doing everything....he doesnt need digestive enzymes anymore (has been pancreatic insufficient since 5 mths)....he is 32. </P>
<P></P>
<P></P>
<P>OH MY GOODNESS!! Thank you for posting. I'm 32, also...I had thought that this drug wouldn't do much for the digestive part of CF, so this post has given me such hope!!!!</P>
<P></P>
<P>I'm getting my genetic testing in December so I'll know what mutation I have. I'm really excited...I'm trying to not get my hopes up too much. </P>
<P></P>
<P>Thanks again for posting.</P>
<P></P>
<P></P>
<P>OH MY GOODNESS!! Thank you for posting. I'm 32, also...I had thought that this drug wouldn't do much for the digestive part of CF, so this post has given me such hope!!!!</P>
<P></P>
<P>I'm getting my genetic testing in December so I'll know what mutation I have. I'm really excited...I'm trying to not get my hopes up too much. </P>
<P></P>
<P>Thanks again for posting.</P>
sunshine39656
Member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on the v770 since November 2009 (i think). Speaking for him here, but he has told me that he feels great. He has not been sick once or had any antibiotics since starting the trial. He is back playing soccer etc. again....he is doing everything....he doesnt need digestive enzymes anymore (has been pancreatic insufficient since 5 mths)....he is 32. </P>
<P></P>
<P></P>
<P>OH MY GOODNESS!! Thank you for posting. I'm 32, also...I had thought that this drug wouldn't do much for the digestive part of CF, so this post has given me such hope!!!!</P>
<P></P>
<P>I'm getting my genetic testing in December so I'll know what mutation I have. I'm really excited...I'm trying to not get my hopes up too much. </P>
<P></P>
<P>Thanks again for posting.</P>
<P></P>
<P></P>
<P>OH MY GOODNESS!! Thank you for posting. I'm 32, also...I had thought that this drug wouldn't do much for the digestive part of CF, so this post has given me such hope!!!!</P>
<P></P>
<P>I'm getting my genetic testing in December so I'll know what mutation I have. I'm really excited...I'm trying to not get my hopes up too much. </P>
<P></P>
<P>Thanks again for posting.</P>
K
Kaethe108
Guest
Maybe we should be careful with too much enthusiasm about the pancreas.
When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.
When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.
K
Kaethe108
Guest
Maybe we should be careful with too much enthusiasm about the pancreas.
When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.
When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.
K
Kaethe108
Guest
Maybe we should be careful with too much enthusiasm about the pancreas.
<br />When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.
<br />dasjdmum's son was only insufficient for 5 month!
<br />If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
<br />Please correct me if I am wrong.
<br />When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.
<br />dasjdmum's son was only insufficient for 5 month!
<br />If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
<br />Please correct me if I am wrong.