› Forums › Cutaneous Melanoma Community › Enrolled in clinical trial
- This topic has 39 replies, 7 voices, and was last updated 14 years, 1 month ago by
justlittleoleme.
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- October 17, 2011 at 6:22 pm
Long week last week. We met Tuesday with the surgeon for a post op check up. She removed a skin tag that was disrupted during surgery (path came back clear!) We met with Dr. Christopher Lao at University of Michigan. He went over the same three options the other oncolgists did. Wednesday we met with the local radiation oncologist. Friday back to IU Simon Cancer Center. First stop brain MRI (clean!!!!) next with our oncologist Dr. Leslie Fecher. We enrolled in the E1609 interferon vs.
Long week last week. We met Tuesday with the surgeon for a post op check up. She removed a skin tag that was disrupted during surgery (path came back clear!) We met with Dr. Christopher Lao at University of Michigan. He went over the same three options the other oncolgists did. Wednesday we met with the local radiation oncologist. Friday back to IU Simon Cancer Center. First stop brain MRI (clean!!!!) next with our oncologist Dr. Leslie Fecher. We enrolled in the E1609 interferon vs. ipi. Our only basic option since he is Stage 3B.
Radiation starts tomorrow and he will have five treatments. We are waiting to hear all the goodies about the trial.
Not looking forward to moving away from our kids for a month if we get the interferon arm but it will all work out.
Please share your experiences with interferon, ipi or radiation. Any tips? I have Jane's website bookmarked!
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- October 17, 2011 at 11:26 pm
At Stage 3B, you can get Interferon without enrolling in a clinical trial. You can get Yervoy (ipilimumab) without enrolling in a clinical trial. You can get radiation without enrolling in a clinical trial.
That said, , my question would be: Given the WIDE range of difference between Yervoy and Intron relative to duration, administration and side effects,, what is the line of reasoning to allow a clinical trial to randomly decide a course of treatment as opposed to a personal dhoice/ decision?
I don't get it.
Although a great resource , Janes website, as far as treatment tips, is IL2 specific.
Cheers,
Charlie S
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- October 17, 2011 at 11:26 pm
At Stage 3B, you can get Interferon without enrolling in a clinical trial. You can get Yervoy (ipilimumab) without enrolling in a clinical trial. You can get radiation without enrolling in a clinical trial.
That said, , my question would be: Given the WIDE range of difference between Yervoy and Intron relative to duration, administration and side effects,, what is the line of reasoning to allow a clinical trial to randomly decide a course of treatment as opposed to a personal dhoice/ decision?
I don't get it.
Although a great resource , Janes website, as far as treatment tips, is IL2 specific.
Cheers,
Charlie S
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- October 17, 2011 at 11:26 pm
At Stage 3B, you can get Interferon without enrolling in a clinical trial. You can get Yervoy (ipilimumab) without enrolling in a clinical trial. You can get radiation without enrolling in a clinical trial.
That said, , my question would be: Given the WIDE range of difference between Yervoy and Intron relative to duration, administration and side effects,, what is the line of reasoning to allow a clinical trial to randomly decide a course of treatment as opposed to a personal dhoice/ decision?
I don't get it.
Although a great resource , Janes website, as far as treatment tips, is IL2 specific.
Cheers,
Charlie S
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- October 17, 2011 at 11:41 pm
Charlie, ipi is not available for stage 3. It is only approved for stage 4. We chose what was available. According to every oncologist we met with, the only clinical trial my hubby qualified for was interferon vs ipi. And you are correct, Jane’s site is il-2 specific. -
- October 17, 2011 at 11:41 pm
Charlie, ipi is not available for stage 3. It is only approved for stage 4. We chose what was available. According to every oncologist we met with, the only clinical trial my hubby qualified for was interferon vs ipi. And you are correct, Jane’s site is il-2 specific. -
- October 17, 2011 at 11:41 pm
Charlie, ipi is not available for stage 3. It is only approved for stage 4. We chose what was available. According to every oncologist we met with, the only clinical trial my hubby qualified for was interferon vs ipi. And you are correct, Jane’s site is il-2 specific. -
- October 17, 2011 at 11:54 pm
I was given the choice of going on the clinical trial interferon 50% or ipi 50% when I was stage 3. I chose to do interferon simply based on the fact that IF I did not get in the ipi, I would NEVER be allowed to opt into ipi since that would 'ruin' the data fo first trial. Hopefully this is not still in effect. I eventuallly did go to the 4th stage compassionate ipi trial…worked for a while…now I'm trying TIL…so far so good. When you select trial be careful of those that could hold you back for further options. Val xx
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- October 17, 2011 at 11:54 pm
I was given the choice of going on the clinical trial interferon 50% or ipi 50% when I was stage 3. I chose to do interferon simply based on the fact that IF I did not get in the ipi, I would NEVER be allowed to opt into ipi since that would 'ruin' the data fo first trial. Hopefully this is not still in effect. I eventuallly did go to the 4th stage compassionate ipi trial…worked for a while…now I'm trying TIL…so far so good. When you select trial be careful of those that could hold you back for further options. Val xx
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- October 17, 2011 at 11:54 pm
I was given the choice of going on the clinical trial interferon 50% or ipi 50% when I was stage 3. I chose to do interferon simply based on the fact that IF I did not get in the ipi, I would NEVER be allowed to opt into ipi since that would 'ruin' the data fo first trial. Hopefully this is not still in effect. I eventuallly did go to the 4th stage compassionate ipi trial…worked for a while…now I'm trying TIL…so far so good. When you select trial be careful of those that could hold you back for further options. Val xx
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- October 18, 2011 at 2:33 am
I disagree. The more enlightened Oncs ARE giving Yervoy to Stage III Patients……………and within the labe/legal parameters. And rightfully
I challenge anybody here to ask iand anser f Yervoy is only for Stage IV.
I am NOT trying to bust ylour chops, but I do think you may be making decisions based upon supposition and not facts.
So, according to WHAT oncologist?
Really, I am on your side, but I must say, I do not think the information made available to you is completely true and would suggest you get another idea.
I've been at this for a while, so, with all courtesy, what you see as EVERY Oncologist is a limited idea. from what you have posted.
Again, I am on YOUR side, but it concerns me that you may not have all the information required to make an informed medical decision other than a vague description from what you describe as "every oncologist"
And once more, there is no need to qualify for Intron…………..Stage III, you can get it. That is a no brainer.
I am really trying to help you here, honestly I am, but I'm not sure you quite "get it", yet and you seem to be "set" from what you have been told.
I wish you well in that singular and blinded purpose.
Cheers,
Charlie S
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- October 19, 2011 at 6:48 pm
Alicia,
I saw a clinical trial in Northern California with GM-CSF but it requires an active melanoma tumor.
Since he has been surgically resected and has no evidence of disease he doesn't qualify.
thanks!
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- October 19, 2011 at 6:48 pm
Alicia,
I saw a clinical trial in Northern California with GM-CSF but it requires an active melanoma tumor.
Since he has been surgically resected and has no evidence of disease he doesn't qualify.
thanks!
-
- October 19, 2011 at 6:48 pm
Alicia,
I saw a clinical trial in Northern California with GM-CSF but it requires an active melanoma tumor.
Since he has been surgically resected and has no evidence of disease he doesn't qualify.
thanks!
-
- October 18, 2011 at 11:53 am
Charlie,
We have asked three different oncologists at three different cancer centers 2 of which are melanoma specialists for opinions.
1)Observation/Surveillance
2)Radiation
2)Interferon – we have been told only stage 3 FDA Approved drug
3) Clinical trials-clinical trial he qualified for based on his staging was E1609 interferon vs. ipi randomized
I have challenged all three oncologists about ipi and il-2 and why they are not options. They are not FDA Approved for Stage 3 melanoma was what we were told.
Our thinking was if we can get interferon anyway, why not go into the trial and perhaps we will get the ipi arm, if not, no harm no foul we get interferon which we would have had anyway.
I know you are just challenging me to get the best treatment for my husband.
-
- October 18, 2011 at 11:53 am
Charlie,
We have asked three different oncologists at three different cancer centers 2 of which are melanoma specialists for opinions.
1)Observation/Surveillance
2)Radiation
2)Interferon – we have been told only stage 3 FDA Approved drug
3) Clinical trials-clinical trial he qualified for based on his staging was E1609 interferon vs. ipi randomized
I have challenged all three oncologists about ipi and il-2 and why they are not options. They are not FDA Approved for Stage 3 melanoma was what we were told.
Our thinking was if we can get interferon anyway, why not go into the trial and perhaps we will get the ipi arm, if not, no harm no foul we get interferon which we would have had anyway.
I know you are just challenging me to get the best treatment for my husband.
-
- October 18, 2011 at 8:04 pm
Karen,
What is the name/number of the trial for ipi il-2 for stage 3?
He is stage 3b and was resectable. Maybe that's what is disqualifying him from some of these trials?
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- October 18, 2011 at 8:04 pm
Karen,
What is the name/number of the trial for ipi il-2 for stage 3?
He is stage 3b and was resectable. Maybe that's what is disqualifying him from some of these trials?
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- October 18, 2011 at 10:42 pm
another criteria is if it's metestasized, even locally.
I'm a patient at Sloan-kettering, the head of my melanoma team is Dr. Alan Halpern-he's a derm oncologist and team-leader or co-leader for melanoma.212 610 0766 He's a great guy–I love him.
You can also call Dr. Jedd Wolchuk, he's one of the developers of ipi and knows everything about it. He's amazing.
For IL-2, I went to Yale-New Haven (Sloan "outsources" to them), Dr. Mario Sznol, 203 785 4191. Another amazing doctor.
If this crappy disease has tought me one thing, it's to be my own advocate. If I call and don't get a call back in a reasonable amount of time (or 5 minutes, depends what's wrong) I call again, and I email also.
let us know what happens.
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- October 18, 2011 at 10:42 pm
another criteria is if it's metestasized, even locally.
I'm a patient at Sloan-kettering, the head of my melanoma team is Dr. Alan Halpern-he's a derm oncologist and team-leader or co-leader for melanoma.212 610 0766 He's a great guy–I love him.
You can also call Dr. Jedd Wolchuk, he's one of the developers of ipi and knows everything about it. He's amazing.
For IL-2, I went to Yale-New Haven (Sloan "outsources" to them), Dr. Mario Sznol, 203 785 4191. Another amazing doctor.
If this crappy disease has tought me one thing, it's to be my own advocate. If I call and don't get a call back in a reasonable amount of time (or 5 minutes, depends what's wrong) I call again, and I email also.
let us know what happens.
-
- October 18, 2011 at 10:42 pm
another criteria is if it's metestasized, even locally.
I'm a patient at Sloan-kettering, the head of my melanoma team is Dr. Alan Halpern-he's a derm oncologist and team-leader or co-leader for melanoma.212 610 0766 He's a great guy–I love him.
You can also call Dr. Jedd Wolchuk, he's one of the developers of ipi and knows everything about it. He's amazing.
For IL-2, I went to Yale-New Haven (Sloan "outsources" to them), Dr. Mario Sznol, 203 785 4191. Another amazing doctor.
If this crappy disease has tought me one thing, it's to be my own advocate. If I call and don't get a call back in a reasonable amount of time (or 5 minutes, depends what's wrong) I call again, and I email also.
let us know what happens.
-
- October 18, 2011 at 8:04 pm
Karen,
What is the name/number of the trial for ipi il-2 for stage 3?
He is stage 3b and was resectable. Maybe that's what is disqualifying him from some of these trials?
-
- October 18, 2011 at 11:53 am
Charlie,
We have asked three different oncologists at three different cancer centers 2 of which are melanoma specialists for opinions.
1)Observation/Surveillance
2)Radiation
2)Interferon – we have been told only stage 3 FDA Approved drug
3) Clinical trials-clinical trial he qualified for based on his staging was E1609 interferon vs. ipi randomized
I have challenged all three oncologists about ipi and il-2 and why they are not options. They are not FDA Approved for Stage 3 melanoma was what we were told.
Our thinking was if we can get interferon anyway, why not go into the trial and perhaps we will get the ipi arm, if not, no harm no foul we get interferon which we would have had anyway.
I know you are just challenging me to get the best treatment for my husband.
-
- October 18, 2011 at 2:33 am
I disagree. The more enlightened Oncs ARE giving Yervoy to Stage III Patients……………and within the labe/legal parameters. And rightfully
I challenge anybody here to ask iand anser f Yervoy is only for Stage IV.
I am NOT trying to bust ylour chops, but I do think you may be making decisions based upon supposition and not facts.
So, according to WHAT oncologist?
Really, I am on your side, but I must say, I do not think the information made available to you is completely true and would suggest you get another idea.
I've been at this for a while, so, with all courtesy, what you see as EVERY Oncologist is a limited idea. from what you have posted.
Again, I am on YOUR side, but it concerns me that you may not have all the information required to make an informed medical decision other than a vague description from what you describe as "every oncologist"
And once more, there is no need to qualify for Intron…………..Stage III, you can get it. That is a no brainer.
I am really trying to help you here, honestly I am, but I'm not sure you quite "get it", yet and you seem to be "set" from what you have been told.
I wish you well in that singular and blinded purpose.
Cheers,
Charlie S
-
- October 18, 2011 at 2:33 am
I disagree. The more enlightened Oncs ARE giving Yervoy to Stage III Patients……………and within the labe/legal parameters. And rightfully
I challenge anybody here to ask iand anser f Yervoy is only for Stage IV.
I am NOT trying to bust ylour chops, but I do think you may be making decisions based upon supposition and not facts.
So, according to WHAT oncologist?
Really, I am on your side, but I must say, I do not think the information made available to you is completely true and would suggest you get another idea.
I've been at this for a while, so, with all courtesy, what you see as EVERY Oncologist is a limited idea. from what you have posted.
Again, I am on YOUR side, but it concerns me that you may not have all the information required to make an informed medical decision other than a vague description from what you describe as "every oncologist"
And once more, there is no need to qualify for Intron…………..Stage III, you can get it. That is a no brainer.
I am really trying to help you here, honestly I am, but I'm not sure you quite "get it", yet and you seem to be "set" from what you have been told.
I wish you well in that singular and blinded purpose.
Cheers,
Charlie S
-
- October 18, 2011 at 11:06 pm
I do believe that at Stage 3, completely resected there are 3 options –
1.. watch and wait
2. interferon
3. the trial that you are going for…ipi vs. interferon
The most important thing before you choose any treatment is to see what it will disqualify you for in the future. My friend died last year of melanoma. After I was diagnosed, and before he died, those were the words he said to me. Unfortunately, some of the treatments he chose during his journey disqualified him from the newer, more promising trials.
Best of luck with your decision. I did a full year of Interferon…started in 10/09…ended in 10/10. Please feel free to email me with any questions you might have regarding the treatment.
Tricia
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- October 18, 2011 at 11:06 pm
I do believe that at Stage 3, completely resected there are 3 options –
1.. watch and wait
2. interferon
3. the trial that you are going for…ipi vs. interferon
The most important thing before you choose any treatment is to see what it will disqualify you for in the future. My friend died last year of melanoma. After I was diagnosed, and before he died, those were the words he said to me. Unfortunately, some of the treatments he chose during his journey disqualified him from the newer, more promising trials.
Best of luck with your decision. I did a full year of Interferon…started in 10/09…ended in 10/10. Please feel free to email me with any questions you might have regarding the treatment.
Tricia
-
- October 18, 2011 at 11:06 pm
I do believe that at Stage 3, completely resected there are 3 options –
1.. watch and wait
2. interferon
3. the trial that you are going for…ipi vs. interferon
The most important thing before you choose any treatment is to see what it will disqualify you for in the future. My friend died last year of melanoma. After I was diagnosed, and before he died, those were the words he said to me. Unfortunately, some of the treatments he chose during his journey disqualified him from the newer, more promising trials.
Best of luck with your decision. I did a full year of Interferon…started in 10/09…ended in 10/10. Please feel free to email me with any questions you might have regarding the treatment.
Tricia
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