my65roses4me
New member
Sitting here in tears and need advice
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
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Sitting here in tears and am shocked (update)
- Thread starter my65roses4me
- Start date
my65roses4me
New member
Sitting here in tears and need advice
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
my65roses4me
New member
Sitting here in tears and need advice
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
my65roses4me
New member
Sitting here in tears and need advice
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?
Emily65Roses
New member
Sitting here in tears and need advice
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
Emily65Roses
New member
Sitting here in tears and need advice
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
Emily65Roses
New member
Sitting here in tears and need advice
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
Emily65Roses
New member
Sitting here in tears and need advice
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote></div>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
Emily65Roses
New member
Sitting here in tears and need advice
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
Emily65Roses
New member
Sitting here in tears and need advice
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
Rebecca,
Did that Dr say why he thought it was worse than having ddf508?</end quote>
She said he wasn't a CF doc, that's enough for me.
But technically, if you're going by mutation Classes only, he's right. <i>(Though I will stop myself here and say that going by Classes only is wrong, as we all know, there's a lot of other junk involved.)</i> DF508 is a Class II, w1282x is a Class I. So clearly a Class I and a Class II is worse than two Class IIs. I hope that makes some sense.
Sitting here in tears and need advice
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
Sitting here in tears and need advice
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
Sitting here in tears and need advice
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
Sitting here in tears and need advice
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
Sitting here in tears and need advice
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
Sitting here in tears and need advice
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
I think that the doc, who again is NOT a CF doc, thought that since W1282X is a nonsense mutation or stop codon mutation, that the CFTR is unable to get through at all, there is just no pathway it ends, stops. Delta F508 there is some transfer of the CFTR. This is the jist of why he thought it was worse. Again, he can't predict how it's going to play out from one individual with CF to another. Two people in the same family can have the same mutations and have different issues from CF and do better than one another. I think knowing your mutations is a good thing because the researchers are targeting specific mutations with drugs. Just don't get too hung up on the mutation class cause that one thing ya just can't change at this point.
my65roses4me
New member
Sitting here in tears and need advice (update)
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
my65roses4me
New member
Sitting here in tears and need advice (update)
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
my65roses4me
New member
Sitting here in tears and need advice (update)
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
my65roses4me
New member
Sitting here in tears and need advice (update)
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.