› Forums › General Melanoma Community › Zelboraf, IL-2 or ACT?
- This topic has 12 replies, 4 voices, and was last updated 14 years, 4 months ago by
rbruce.
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- September 7, 2011 at 9:16 pm
I'm looking for information on what other melanoma specialists are recommending right now. My husband was dx with stage 4 in January. He finished yervoy in July–2 tumors disappeard, but by the end of August, he now has 2 more tumors. His doctor isn't a melanoma specialist–we have an appointment next week with one. From the research we've done, we feel like there are 3 main options–Zelboraf, IL-2, and ACT trials. We've found (from another patient), that John Hopkins recommends Zelboraf, following yervoy. We're wondering what other sp
I'm looking for information on what other melanoma specialists are recommending right now. My husband was dx with stage 4 in January. He finished yervoy in July–2 tumors disappeard, but by the end of August, he now has 2 more tumors. His doctor isn't a melanoma specialist–we have an appointment next week with one. From the research we've done, we feel like there are 3 main options–Zelboraf, IL-2, and ACT trials. We've found (from another patient), that John Hopkins recommends Zelboraf, following yervoy. We're wondering what other specialists are suggesting now. Thanks,
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- September 7, 2011 at 10:41 pm
It really depends on the oncologist. Since most treatments offer about the same response rates (with the exception of Zelboraf), it is a tough call. My husband's onc suggested 1st IL-2 then IPI (he is B-RAF negative). He never mentioned the ACT trials, we pursued that on our own and he agreed that it was worth looking into. We did, and even though Dave didn't qualify, he has his foot in the door should IL-2 or IPI fail.
I would look into the trials at Bethesda first, as most call for IL-2 as part of the protocal. Keep in mind that these trials require time and otherwise good health. If he doesn't qualify or they don't work, I would consider Zelboraf as your "ace in the hole".
Best wishes to you both,
Maria
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- September 7, 2011 at 10:41 pm
It really depends on the oncologist. Since most treatments offer about the same response rates (with the exception of Zelboraf), it is a tough call. My husband's onc suggested 1st IL-2 then IPI (he is B-RAF negative). He never mentioned the ACT trials, we pursued that on our own and he agreed that it was worth looking into. We did, and even though Dave didn't qualify, he has his foot in the door should IL-2 or IPI fail.
I would look into the trials at Bethesda first, as most call for IL-2 as part of the protocal. Keep in mind that these trials require time and otherwise good health. If he doesn't qualify or they don't work, I would consider Zelboraf as your "ace in the hole".
Best wishes to you both,
Maria
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- September 8, 2011 at 3:49 am
The patient specific approach to melanoma can differ widely between oncolologists and there are several reasons for that.
1)Melanoma is very patient specific because historically, what treatment works for one does not always work for another.
2) Variables such as tumor burden, location, overall patient health, timing and severity of symptom presentation,and the ability to tolerate treatment side effects are considered.
3) Exclusionary factors such as HLA, typing . BRAF testing, prior treatments, tumor location, and other qualifying factors not only for clinical trials but current approved methodology treatments. .
4)Logistical matters such as geographical/transportation/lodging matters and insurance approval.
Editorial aside, it is a simple fact that many doctors are heavily invested in a particular research and as such, their approach may be more geared towards that investment. Not that that is good or bad, but as a patient, one should be aware of that fact and inquire accordingly.
So, it is not just what some doctor may recommend, it is what the patient is eligible to receive.and is logistically able to receive and most importantly, the patient is willing to consent to..
It is important, at least in my view, for the patient to have a general understanding of how a proposed treatment might work,what it takes to qualify , by what mechanism does it take to qualify, how long it takes to qualify, when it will be administered and by what means,, how it will be measured for success and most importantly WHEN as compared to other options.
Bear in mind, there is NO one medical facility or doctor that is "best" for everyone. It is the combination of good medical advice, the availability and timely responsiveness of that advice combined with the patient ability to communicate , participate and lead that counts.
I would urge you to ask and answer going forward.
My best to you and your husband.
Cheers,
Charlie S
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- September 8, 2011 at 3:49 am
The patient specific approach to melanoma can differ widely between oncolologists and there are several reasons for that.
1)Melanoma is very patient specific because historically, what treatment works for one does not always work for another.
2) Variables such as tumor burden, location, overall patient health, timing and severity of symptom presentation,and the ability to tolerate treatment side effects are considered.
3) Exclusionary factors such as HLA, typing . BRAF testing, prior treatments, tumor location, and other qualifying factors not only for clinical trials but current approved methodology treatments. .
4)Logistical matters such as geographical/transportation/lodging matters and insurance approval.
Editorial aside, it is a simple fact that many doctors are heavily invested in a particular research and as such, their approach may be more geared towards that investment. Not that that is good or bad, but as a patient, one should be aware of that fact and inquire accordingly.
So, it is not just what some doctor may recommend, it is what the patient is eligible to receive.and is logistically able to receive and most importantly, the patient is willing to consent to..
It is important, at least in my view, for the patient to have a general understanding of how a proposed treatment might work,what it takes to qualify , by what mechanism does it take to qualify, how long it takes to qualify, when it will be administered and by what means,, how it will be measured for success and most importantly WHEN as compared to other options.
Bear in mind, there is NO one medical facility or doctor that is "best" for everyone. It is the combination of good medical advice, the availability and timely responsiveness of that advice combined with the patient ability to communicate , participate and lead that counts.
I would urge you to ask and answer going forward.
My best to you and your husband.
Cheers,
Charlie S
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- September 8, 2011 at 3:34 am
The patient specific approach to melanoma can differ widely between oncolologists and there are several reasons for that.
1)Melanoma is very patient specific because historically, what treatment works for one does not always work for another.
2) Variables such as tumor burden, location, overall patient health, timing and severity of symptom presentation,and the ability to tolerate treatment side effects are considered.
3) Exclusionary factors such as HLA, typing . BRAF testing, prior treatments, tumor location, and other qualifying factors not only for clinical trials but current approved methodology treatments. .
4)Logistical matters such as geographical/transportation/lodging matters and insurance approval.
Editorial aside, it is a simple fact that many doctors are heavily invested in a particular research and as such, their approach may be more geared towards that investment. Not that that is good or bad, but as a patient, one should be aware of that fact and inquire accordingly.
So, it is not just what some doctor may recommend, it is what the patient is eligible to receive.and is logistically able to receive and most importantly, the patient is willing to consent to..
It is important, at least in my view, for the patient to have a general understanding of how a proposed treatment might work,what it takes to qualify , by what mechanism does it take to qualify, how long it takes to qualify, when it will be administered and by what means,, how it will be measured for success and most importantly WHEN as compared to other options.
Bear in mind, there is NO one medical facility or doctor that is "best" for everyone. It is the combination of good medical advice, the availability and timely responsiveness of that advice combined with the patient ability to communicate , participate and lead that counts.
I would urge you to ask and answer going forward.
My best to you and your husband.
Cheers,
Charlie S
-
- September 8, 2011 at 3:34 am
The patient specific approach to melanoma can differ widely between oncolologists and there are several reasons for that.
1)Melanoma is very patient specific because historically, what treatment works for one does not always work for another.
2) Variables such as tumor burden, location, overall patient health, timing and severity of symptom presentation,and the ability to tolerate treatment side effects are considered.
3) Exclusionary factors such as HLA, typing . BRAF testing, prior treatments, tumor location, and other qualifying factors not only for clinical trials but current approved methodology treatments. .
4)Logistical matters such as geographical/transportation/lodging matters and insurance approval.
Editorial aside, it is a simple fact that many doctors are heavily invested in a particular research and as such, their approach may be more geared towards that investment. Not that that is good or bad, but as a patient, one should be aware of that fact and inquire accordingly.
So, it is not just what some doctor may recommend, it is what the patient is eligible to receive.and is logistically able to receive and most importantly, the patient is willing to consent to..
It is important, at least in my view, for the patient to have a general understanding of how a proposed treatment might work,what it takes to qualify , by what mechanism does it take to qualify, how long it takes to qualify, when it will be administered and by what means,, how it will be measured for success and most importantly WHEN as compared to other options.
Bear in mind, there is NO one medical facility or doctor that is "best" for everyone. It is the combination of good medical advice, the availability and timely responsiveness of that advice combined with the patient ability to communicate , participate and lead that counts.
I would urge you to ask and answer going forward.
My best to you and your husband.
Cheers,
Charlie S
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- September 9, 2011 at 6:36 pm
I am not familiar with ACT trials. Can anyone out there enlighten me? Thanks, Robert
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