› Forums › General Melanoma Community › Brain Met on Keytruda
- This topic has 48 replies, 13 voices, and was last updated 8 years, 9 months ago by
JoshF.
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- July 25, 2015 at 7:42 am
Earlier this week I posted that I thought I was having a weird side effect from Keytruda. I'm having pain behind my left eye and my vision in that eye is "off". I went to an eye institute which ruled out inflammation in the eye (e.g., uveitis) and my pituitary panel came back mostly normal. I moved-up a regularly scheduled brain MRI thinking that maybe I had inflammation of the optic nerve (neuritis)–but it turns out that I have a new 15mm brain met that's pressing on my optic nerve. My last MRI (which was clear) was on June 1st, so–as we know–things can change quickly. (I've stressed in earlier posts the importance of Stage IV patients receiving routine brain MRIs.) I've had 2 brain met previously–one in 2013 and one earlier this year. Both were smaller and in "better" locations and were treated with gamma-knife. Based on initial discussions, it sounds like this one may not be a candidate for gamma-knife, but rather a proton beam procedure or surgery. It's unclear based on these discussions the degree to which my vision will be at risk. I'll know more on Monday.
Of course, dealing with the brain met is only the first order of business. I'll also get scanned this week, after having now moved up those scans as well. My last scans while on Keytruda (at ~14 weeks) on June 1st were stable with some minor reduction. I have one small lung met (less than 1 cm) and several small liver mets (less than 3cm). I'm now at ~22 weeks. A treatment decision is likely coming. Unfortunately, having done BRAF-MEK, ipi and Keytruda, the next step is not obvious.
I'll report back as I learn more over the next week. Thanks.
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- July 25, 2015 at 2:37 pm
Wow Mat. Good luck. All those failed me too. They also put me on Nivo but it's really not much different than keytruda. On the 6th I'm finally going to NIH to see if I can into that which I'm told is hard to get into. Also it is the most toxic risky treatment I'm aware of. There are also trials at msk, Chicago and elsewhere that are potentially pretty good but I found out it was almost impossible for them to get me in thus my current choice.
Artie
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- July 25, 2015 at 2:37 pm
Wow Mat. Good luck. All those failed me too. They also put me on Nivo but it's really not much different than keytruda. On the 6th I'm finally going to NIH to see if I can into that which I'm told is hard to get into. Also it is the most toxic risky treatment I'm aware of. There are also trials at msk, Chicago and elsewhere that are potentially pretty good but I found out it was almost impossible for them to get me in thus my current choice.
Artie
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- July 25, 2015 at 2:37 pm
Wow Mat. Good luck. All those failed me too. They also put me on Nivo but it's really not much different than keytruda. On the 6th I'm finally going to NIH to see if I can into that which I'm told is hard to get into. Also it is the most toxic risky treatment I'm aware of. There are also trials at msk, Chicago and elsewhere that are potentially pretty good but I found out it was almost impossible for them to get me in thus my current choice.
Artie
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- July 25, 2015 at 5:00 pm
Hi Mat,
So sorry to hear that you have to deal with this setback. I'm glad you were able to move up the MRI and were able to catch this before it got too out of control. You're so right – regular MRIs are crucial for stage IV patients. I hope that the tumor will be taken care of quickly with minimal side effects. You will find the right treatment for you to knock this stuff out! Good luck – sending lots of good thoughts and prayers your way.
Katie
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- July 25, 2015 at 5:00 pm
Hi Mat,
So sorry to hear that you have to deal with this setback. I'm glad you were able to move up the MRI and were able to catch this before it got too out of control. You're so right – regular MRIs are crucial for stage IV patients. I hope that the tumor will be taken care of quickly with minimal side effects. You will find the right treatment for you to knock this stuff out! Good luck – sending lots of good thoughts and prayers your way.
Katie
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- July 25, 2015 at 5:00 pm
Hi Mat,
So sorry to hear that you have to deal with this setback. I'm glad you were able to move up the MRI and were able to catch this before it got too out of control. You're so right – regular MRIs are crucial for stage IV patients. I hope that the tumor will be taken care of quickly with minimal side effects. You will find the right treatment for you to knock this stuff out! Good luck – sending lots of good thoughts and prayers your way.
Katie
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- July 25, 2015 at 6:15 pm
So sorry to hear this, Mat. I wanted to let you know though, that in Feb. 2014, I started having double vision. I had a brain MRI at the local hospital but they couldn't see anything. Finally, the pain behind my left eye got so bad in early April, my husband drove me down to my doctors at Dana Farber for an MRI. They also admitted me to the hospital. The specialists were able to see a mass around my optic nerve and they were actually able to get a biopsy to confirm melanoma. They treated the tumor with stereotactic radiation. Over the past year I tried Ipi, the Braf inhibitors and Keytruda but saw progression with the tumors in my abdomen after all the treatments. I am happy to tell you, however, that my vision returned to normal! In May of this year I did two weeks of IL2 treatment. My scans last week showed stable disease so I'm going in for two more weeks of IL2.
Stay hopeful!
Gwen
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- July 25, 2015 at 6:15 pm
So sorry to hear this, Mat. I wanted to let you know though, that in Feb. 2014, I started having double vision. I had a brain MRI at the local hospital but they couldn't see anything. Finally, the pain behind my left eye got so bad in early April, my husband drove me down to my doctors at Dana Farber for an MRI. They also admitted me to the hospital. The specialists were able to see a mass around my optic nerve and they were actually able to get a biopsy to confirm melanoma. They treated the tumor with stereotactic radiation. Over the past year I tried Ipi, the Braf inhibitors and Keytruda but saw progression with the tumors in my abdomen after all the treatments. I am happy to tell you, however, that my vision returned to normal! In May of this year I did two weeks of IL2 treatment. My scans last week showed stable disease so I'm going in for two more weeks of IL2.
Stay hopeful!
Gwen
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- July 25, 2015 at 6:15 pm
So sorry to hear this, Mat. I wanted to let you know though, that in Feb. 2014, I started having double vision. I had a brain MRI at the local hospital but they couldn't see anything. Finally, the pain behind my left eye got so bad in early April, my husband drove me down to my doctors at Dana Farber for an MRI. They also admitted me to the hospital. The specialists were able to see a mass around my optic nerve and they were actually able to get a biopsy to confirm melanoma. They treated the tumor with stereotactic radiation. Over the past year I tried Ipi, the Braf inhibitors and Keytruda but saw progression with the tumors in my abdomen after all the treatments. I am happy to tell you, however, that my vision returned to normal! In May of this year I did two weeks of IL2 treatment. My scans last week showed stable disease so I'm going in for two more weeks of IL2.
Stay hopeful!
Gwen
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- July 26, 2015 at 2:40 am
Oh, Mat. So sorry. Glad you determined what was going on…but it still isn't easy. Hopefully your docs will help with a plan. Glad you are getting all else scanned to see what is happening there. IL2 would be a real option now. Still a fan of the anti-LAG3, post anti-PD1 arm, trial. Artie looked into it…don't know if they are recruiting yet or not. He may be able to shed some light. And despite how good it seems, you'd still be a rattie for real…so I don't know how you feel about that. Will keep my thinking cap on and holding you in my heart. Hang in there. C
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- July 26, 2015 at 2:40 am
Oh, Mat. So sorry. Glad you determined what was going on…but it still isn't easy. Hopefully your docs will help with a plan. Glad you are getting all else scanned to see what is happening there. IL2 would be a real option now. Still a fan of the anti-LAG3, post anti-PD1 arm, trial. Artie looked into it…don't know if they are recruiting yet or not. He may be able to shed some light. And despite how good it seems, you'd still be a rattie for real…so I don't know how you feel about that. Will keep my thinking cap on and holding you in my heart. Hang in there. C
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- July 26, 2015 at 2:40 am
Oh, Mat. So sorry. Glad you determined what was going on…but it still isn't easy. Hopefully your docs will help with a plan. Glad you are getting all else scanned to see what is happening there. IL2 would be a real option now. Still a fan of the anti-LAG3, post anti-PD1 arm, trial. Artie looked into it…don't know if they are recruiting yet or not. He may be able to shed some light. And despite how good it seems, you'd still be a rattie for real…so I don't know how you feel about that. Will keep my thinking cap on and holding you in my heart. Hang in there. C
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- July 26, 2015 at 11:08 am
Thanks Celeste. I'm definitely going to consider trials, but as you know I'll need to be able to demonstrate that the brain met is stable several weeks after treatment. So, aside from getting the brain met treated, I need to get the rest of me scanned to determine whether waiting several weeks will make sense.
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- July 26, 2015 at 11:08 am
Thanks Celeste. I'm definitely going to consider trials, but as you know I'll need to be able to demonstrate that the brain met is stable several weeks after treatment. So, aside from getting the brain met treated, I need to get the rest of me scanned to determine whether waiting several weeks will make sense.
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- July 26, 2015 at 11:08 am
Thanks Celeste. I'm definitely going to consider trials, but as you know I'll need to be able to demonstrate that the brain met is stable several weeks after treatment. So, aside from getting the brain met treated, I need to get the rest of me scanned to determine whether waiting several weeks will make sense.
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- July 26, 2015 at 2:40 pm
When I saw dr Gajewski in Chicago last early May he said they haven't even started recruiting for the pd1 lag3 for those who have progressed on pd1. They only recruit those who haven't had pd1 yet.
He did have some other stuff that sounds good. Better than pd1 by itself. but he said they only get an opening about every 8 weeks. That opening is shared among 7 other sites, so it is a very narrow window and very hard to get into. They have lots of patients living longer but still needing more treatment but very few slots.
They tested the biopsy for b7h3 for the mga271 med. Mine finally came back positive in late June. But that trial only targets that on the tumor. The 2013 asco for that med said "less than stellar results". Might be great though never know until you try. But more recent articles seem to indicate it should be combined with pd1 or ipi. There is a trial in a couple places with it and Ipi. I called the trial nurse for that I believe in Oregon who was very pessimistic that I could get in that combo trial.
He also said although ipi failed doing the ipi Nivo combo might be an option but very difficult to get insurance to pay for it.
So although they have some good trials it seems almost impossible to get into thus I've been pursuing NIH ever since we got back last may. I'll be talking to a doc there on August 6.
Artie
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- July 26, 2015 at 2:40 pm
When I saw dr Gajewski in Chicago last early May he said they haven't even started recruiting for the pd1 lag3 for those who have progressed on pd1. They only recruit those who haven't had pd1 yet.
He did have some other stuff that sounds good. Better than pd1 by itself. but he said they only get an opening about every 8 weeks. That opening is shared among 7 other sites, so it is a very narrow window and very hard to get into. They have lots of patients living longer but still needing more treatment but very few slots.
They tested the biopsy for b7h3 for the mga271 med. Mine finally came back positive in late June. But that trial only targets that on the tumor. The 2013 asco for that med said "less than stellar results". Might be great though never know until you try. But more recent articles seem to indicate it should be combined with pd1 or ipi. There is a trial in a couple places with it and Ipi. I called the trial nurse for that I believe in Oregon who was very pessimistic that I could get in that combo trial.
He also said although ipi failed doing the ipi Nivo combo might be an option but very difficult to get insurance to pay for it.
So although they have some good trials it seems almost impossible to get into thus I've been pursuing NIH ever since we got back last may. I'll be talking to a doc there on August 6.
Artie
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- July 26, 2015 at 2:40 pm
When I saw dr Gajewski in Chicago last early May he said they haven't even started recruiting for the pd1 lag3 for those who have progressed on pd1. They only recruit those who haven't had pd1 yet.
He did have some other stuff that sounds good. Better than pd1 by itself. but he said they only get an opening about every 8 weeks. That opening is shared among 7 other sites, so it is a very narrow window and very hard to get into. They have lots of patients living longer but still needing more treatment but very few slots.
They tested the biopsy for b7h3 for the mga271 med. Mine finally came back positive in late June. But that trial only targets that on the tumor. The 2013 asco for that med said "less than stellar results". Might be great though never know until you try. But more recent articles seem to indicate it should be combined with pd1 or ipi. There is a trial in a couple places with it and Ipi. I called the trial nurse for that I believe in Oregon who was very pessimistic that I could get in that combo trial.
He also said although ipi failed doing the ipi Nivo combo might be an option but very difficult to get insurance to pay for it.
So although they have some good trials it seems almost impossible to get into thus I've been pursuing NIH ever since we got back last may. I'll be talking to a doc there on August 6.
Artie
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- July 29, 2015 at 11:06 pm
Hey Mat,
So sorry to hear about your brain met, especially the location. I am praying for you man.
I almost hate to say it, if you do end up seeking new treatment (hopefully this is the only problematic met you have and the others remain stable or continue to shrink), have you thought about TIL? I know it is controversial, since it is such a tough treatment, and does take months to fully recover.
The reason I ask is because a lot of people leave IL-2 for last, and it seems to me that if one does subject oneself to IL-2, adding the extra burden of 2 weeks of chemo before the IL-2/TIL induction may be worth it.
Also, you have to be fairly healthy for TIL, and it sounds like you are still in pretty good shape.
I hope you get over this bump and keep on sailing.
– Paul.
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- July 29, 2015 at 11:06 pm
Hey Mat,
So sorry to hear about your brain met, especially the location. I am praying for you man.
I almost hate to say it, if you do end up seeking new treatment (hopefully this is the only problematic met you have and the others remain stable or continue to shrink), have you thought about TIL? I know it is controversial, since it is such a tough treatment, and does take months to fully recover.
The reason I ask is because a lot of people leave IL-2 for last, and it seems to me that if one does subject oneself to IL-2, adding the extra burden of 2 weeks of chemo before the IL-2/TIL induction may be worth it.
Also, you have to be fairly healthy for TIL, and it sounds like you are still in pretty good shape.
I hope you get over this bump and keep on sailing.
– Paul.
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- July 29, 2015 at 11:06 pm
Hey Mat,
So sorry to hear about your brain met, especially the location. I am praying for you man.
I almost hate to say it, if you do end up seeking new treatment (hopefully this is the only problematic met you have and the others remain stable or continue to shrink), have you thought about TIL? I know it is controversial, since it is such a tough treatment, and does take months to fully recover.
The reason I ask is because a lot of people leave IL-2 for last, and it seems to me that if one does subject oneself to IL-2, adding the extra burden of 2 weeks of chemo before the IL-2/TIL induction may be worth it.
Also, you have to be fairly healthy for TIL, and it sounds like you are still in pretty good shape.
I hope you get over this bump and keep on sailing.
– Paul.
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