› Forums › General Melanoma Community › Scan today: results not great but not terrible
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stars.
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- July 21, 2015 at 11:03 pm
A few questions I'm mulling after a CT today.
Been on TAF+MEK for 4 months. PET in April didn't show anything suspicious. Brain MRI in June showed shrinking brain mets (already got SRS'd), CT today showed a new small lesion on the left adrenal gland. Onc (normal, not a specialist) had been preaching PD1 as our next move, but today she changes course and says ipi is probably up next for me. I also see a melanoma specialist at Penn, and the two of them talk regularly, so they are going to mind meld and come to a decision over the next few days.
The Qs in my head are
– why the change of heart? is it based on the location/size of the met that beat the combo? This is mostly curiousity on my part.
– I'm also having a follow-up brain MRI in two weeks, so shouldn't those results be taken into consideration before starting my next treatment? Or is immunotherapy still an adjuvant therapy for brain mets with radiation and/or resection being the primary treatments?
Like the title says, its never great to find a new spot, but it could have been much worse in my opinion.
Thx
Jeff
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- July 21, 2015 at 11:56 pm
Technically the FDA rules I believe still state you have to progress on ipi before being able to get pd1. Same with braf which you've already done. At least in the USA. However since it has such a higher response rate a lot of docs somehow fudge that and get the patient to pd1. So maybe your regular onc just learned that.
As far as ipi pd1 etc they activate your tcells which do cross the blood brain barrier. However the combo crosses it too.
So yes it's a tough call whether to give up the combo for immunotherapy due to 1 small lesion. I imagine they figure if you don't change more will show up later. That seems to be how this stupid disease works. Doesn't mean you can't come back to them later if needed since you've had some good response if I understand right. But another treatment that gets a complete response is what they are hoping for.
As far as that spot being somehow a critical area I have no idea.
Artie
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- July 21, 2015 at 11:56 pm
Technically the FDA rules I believe still state you have to progress on ipi before being able to get pd1. Same with braf which you've already done. At least in the USA. However since it has such a higher response rate a lot of docs somehow fudge that and get the patient to pd1. So maybe your regular onc just learned that.
As far as ipi pd1 etc they activate your tcells which do cross the blood brain barrier. However the combo crosses it too.
So yes it's a tough call whether to give up the combo for immunotherapy due to 1 small lesion. I imagine they figure if you don't change more will show up later. That seems to be how this stupid disease works. Doesn't mean you can't come back to them later if needed since you've had some good response if I understand right. But another treatment that gets a complete response is what they are hoping for.
As far as that spot being somehow a critical area I have no idea.
Artie
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- July 21, 2015 at 11:56 pm
Technically the FDA rules I believe still state you have to progress on ipi before being able to get pd1. Same with braf which you've already done. At least in the USA. However since it has such a higher response rate a lot of docs somehow fudge that and get the patient to pd1. So maybe your regular onc just learned that.
As far as ipi pd1 etc they activate your tcells which do cross the blood brain barrier. However the combo crosses it too.
So yes it's a tough call whether to give up the combo for immunotherapy due to 1 small lesion. I imagine they figure if you don't change more will show up later. That seems to be how this stupid disease works. Doesn't mean you can't come back to them later if needed since you've had some good response if I understand right. But another treatment that gets a complete response is what they are hoping for.
As far as that spot being somehow a critical area I have no idea.
Artie
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- July 22, 2015 at 1:17 am
Jeff, sorry to hear about the progression, but you've caught it early. You might look into the ipi-nivolumab combo expanded access trial, but that trial may require you to be treatment naive. As for Ipi versus PD-1, I'm sure that Penn has a good sense for whether they can make the case to your insurance co for PD-1 first. Also, I don't think the brain scan results matter for ipi versus PD-1. (They obviously matter for other reasons.). When I progressed on BRAF-MEK, I had a small brain tumor. The tumor was gamma knifed on a Monday and I had my first Keytruda infusion on that Thursday. (I had already done ipi.)
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- July 22, 2015 at 1:17 am
Jeff, sorry to hear about the progression, but you've caught it early. You might look into the ipi-nivolumab combo expanded access trial, but that trial may require you to be treatment naive. As for Ipi versus PD-1, I'm sure that Penn has a good sense for whether they can make the case to your insurance co for PD-1 first. Also, I don't think the brain scan results matter for ipi versus PD-1. (They obviously matter for other reasons.). When I progressed on BRAF-MEK, I had a small brain tumor. The tumor was gamma knifed on a Monday and I had my first Keytruda infusion on that Thursday. (I had already done ipi.)
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- July 22, 2015 at 1:17 am
Jeff, sorry to hear about the progression, but you've caught it early. You might look into the ipi-nivolumab combo expanded access trial, but that trial may require you to be treatment naive. As for Ipi versus PD-1, I'm sure that Penn has a good sense for whether they can make the case to your insurance co for PD-1 first. Also, I don't think the brain scan results matter for ipi versus PD-1. (They obviously matter for other reasons.). When I progressed on BRAF-MEK, I had a small brain tumor. The tumor was gamma knifed on a Monday and I had my first Keytruda infusion on that Thursday. (I had already done ipi.)
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- July 23, 2015 at 8:13 am
Hi Jeff
Your questions are so clear and logical that I'm sure one or both of your doctors could answer them in two seconds flat and give you some peace of mind. It's important that you feel fully informed and in agreement. Do you have an opportunity to call or email them direct? You'll probably get the answers and reassurance you need.
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- July 23, 2015 at 8:13 am
Hi Jeff
Your questions are so clear and logical that I'm sure one or both of your doctors could answer them in two seconds flat and give you some peace of mind. It's important that you feel fully informed and in agreement. Do you have an opportunity to call or email them direct? You'll probably get the answers and reassurance you need.
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- July 23, 2015 at 8:13 am
Hi Jeff
Your questions are so clear and logical that I'm sure one or both of your doctors could answer them in two seconds flat and give you some peace of mind. It's important that you feel fully informed and in agreement. Do you have an opportunity to call or email them direct? You'll probably get the answers and reassurance you need.
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