NetBoy2020

On the rash – I was on Yervoy (I'm guessing ipi?) and had serious rash outbreak right after the last injection. I found Rixx Herbal Healing Lotion at a local health store (also available on Amazon). It did wonders to relieve the itching, cleared up the rash, and it even works on the massive acne outbreaks I have experienced on both Yervoy and Keytruda. The lotion can be kind of drying, so I use body lotion after. It works best on acne if you apply a little the second you notice it instead of waiting. (For me, it's body acne and face acne.)

I'm trying to stay focused on my experience and opinions here — In my opinion, no side effects is a good thing. I had side effects to Keytruda and was at full toxicity. Scans are going to be the most reliable for indication of if it is working. Yervoy did not work for me – I could feel a new tumor in my body every week. The doctor said new tumors were normal while being infused and that Yervoy really starts to work after the injections stop. Not for me. I had to go Keytruda and I reached toxicity twice with Keytruda and can no longer use it after 6 injections. It was working, We know it worked, because Keytruda was started 2.5 months after the last Yervoy dose and we mostly saw tumors shrinking. The doctors say Yervoy was out of my system within 6 months of the first injection, so 2 weeks from my first Keytruda infusion.

All in all, I've read that the combination Yervoy (ipilimumab)/Opdivo (nivolumab) [I think that's what you are doing?] is showing better results than Yervoy alone! I hope my experience and information helps, and does not scare. Best of luck to you!

On the rash – I was on Yervoy (I'm guessing ipi?) and had serious rash outbreak right after the last injection. I found Rixx Herbal Healing Lotion at a local health store (also available on Amazon). It did wonders to relieve the itching, cleared up the rash, and it even works on the massive acne outbreaks I have experienced on both Yervoy and Keytruda. The lotion can be kind of drying, so I use body lotion after. It works best on acne if you apply a little the second you notice it instead of waiting. (For me, it's body acne and face acne.)

I'm trying to stay focused on my experience and opinions here — In my opinion, no side effects is a good thing. I had side effects to Keytruda and was at full toxicity. Scans are going to be the most reliable for indication of if it is working. Yervoy did not work for me – I could feel a new tumor in my body every week. The doctor said new tumors were normal while being infused and that Yervoy really starts to work after the injections stop. Not for me. I had to go Keytruda and I reached toxicity twice with Keytruda and can no longer use it after 6 injections. It was working, We know it worked, because Keytruda was started 2.5 months after the last Yervoy dose and we mostly saw tumors shrinking. The doctors say Yervoy was out of my system within 6 months of the first injection, so 2 weeks from my first Keytruda infusion.

All in all, I've read that the combination Yervoy (ipilimumab)/Opdivo (nivolumab) [I think that's what you are doing?] is showing better results than Yervoy alone! I hope my experience and information helps, and does not scare. Best of luck to you!

On the rash – I was on Yervoy (I'm guessing ipi?) and had serious rash outbreak right after the last injection. I found Rixx Herbal Healing Lotion at a local health store (also available on Amazon). It did wonders to relieve the itching, cleared up the rash, and it even works on the massive acne outbreaks I have experienced on both Yervoy and Keytruda. The lotion can be kind of drying, so I use body lotion after. It works best on acne if you apply a little the second you notice it instead of waiting. (For me, it's body acne and face acne.)

I'm trying to stay focused on my experience and opinions here — In my opinion, no side effects is a good thing. I had side effects to Keytruda and was at full toxicity. Scans are going to be the most reliable for indication of if it is working. Yervoy did not work for me – I could feel a new tumor in my body every week. The doctor said new tumors were normal while being infused and that Yervoy really starts to work after the injections stop. Not for me. I had to go Keytruda and I reached toxicity twice with Keytruda and can no longer use it after 6 injections. It was working, We know it worked, because Keytruda was started 2.5 months after the last Yervoy dose and we mostly saw tumors shrinking. The doctors say Yervoy was out of my system within 6 months of the first injection, so 2 weeks from my first Keytruda infusion.

All in all, I've read that the combination Yervoy (ipilimumab)/Opdivo (nivolumab) [I think that's what you are doing?] is showing better results than Yervoy alone! I hope my experience and information helps, and does not scare. Best of luck to you!

I don't know if this well help, but thought I'd share as a Stage 4 Melanoma patient constantly battling brain mets. My understanding is that Opdivo and Keytruda are very similar and both are supposed to cross the blood/brain barrier (unlike Yervoy.) I have the BRAF marker, so Keytruda was what they went with as I had not been put on BRAF inhibitors. (The inhibitors are required before Opdivo is even an option.) When we combined Keytruda with 5 days of radiation to a large body tumor, that tumor and the other tumors were gone in less than 60 days and the brain mets greatly diminished. (THC was also used, detailed below.) My largest was up to 12cm and down to 2cm within 3 months. They grow very fast, but seem to take much longer to show regression.

I've also had a full craniotomy (I had 2 grapefruit-size brain tumors) and three rounds of gamma knife to get the remainder of the tumors.

Unfortunately, we're now finding new mets in the ventricles and spinal fluid is coming up positive for malignant cells. Radiation does not treat these. In 3 months, they grew from 2cm to 8cm. Now I'm experiencing serious neurological symptoms and headaches. MRI of the spine shows no tumors, yet. As a result, now we're moving to BRAF and MEK inhibitors in combination. It sounds like, if he's on Opdivo, he must not be BRAF positive. And if they don't know, they need to find out! (it's a lab test on a tumor. They tested my brain tumors during the craniotomy.)

One other thing they talk about, should the BRAF/MEK inhibitors not work, is sending me to the MD Anderson clinic in Texas for CAR-T cell therapy. My primary oncologist has been on the phone with them to arrange everything in advance, should we need to exercise this option. I have no idea how I'd pay for it and arrange transport from California, but I know the many foundations out there can assist with this. They might at least look into this if there are no further drugs that would help. Also, just more reason to get more opinions from other oncologists.

As others have said, a second and third opinion can be huge. I didn't want to go see another doctor at first, but when I did I was completely furious at and over my first oncologist. My second and third opinions were both furious that the first doctor did not go with inhibitors to begin with. My first oncologist was trying to push Opdivo through and force my insurance to approve it. I read that Keytruda was what I needed with the BRAF marker, and I had to demand Keytruda. I was started on Yervoy when this all started, had zero response to it, but had at least 12 new tumors form while on Yervoy and I was certain death was coming last November. My point is, sometimes an oncologist knows too little about melanoma to effectively treat it – and this is a life, not replaceable, so those second and third opinions are valuable beyond money.

And I'll throw it out there, but I know for many it is not an option or they won't even consider it. Concentrated THC (marijuana, but clean, sterile and liquid form) four (4) hours prior to radiation in combination with the Keytruda, I swear, is to thank for the massive tumor death. After the radiation, oncologists were amazed by the results, falling to the floor screaming "melanoma DOES NOT respond like this." If anyone goes this route, I highly recommend a cannabis expert who is familiar with oncology. I have an oncology doctor prescribing the exact dosing of THC (kill tumors), CBD (stop spread), and THCa (kill brain mets) that I use. Even when I talk to random strangers, half of them first ask – "are you taking CBD!?" when they hear melanoma. Further, the cannabis doctor makes sure we don't interfere with other drugs. I won't go too much into details, but to say that It's expensive and when I was at the brink of death, it brought me back. I know it's making a difference.

I don't know if this well help, but thought I'd share as a Stage 4 Melanoma patient constantly battling brain mets. My understanding is that Opdivo and Keytruda are very similar and both are supposed to cross the blood/brain barrier (unlike Yervoy.) I have the BRAF marker, so Keytruda was what they went with as I had not been put on BRAF inhibitors. (The inhibitors are required before Opdivo is even an option.) When we combined Keytruda with 5 days of radiation to a large body tumor, that tumor and the other tumors were gone in less than 60 days and the brain mets greatly diminished. (THC was also used, detailed below.) My largest was up to 12cm and down to 2cm within 3 months. They grow very fast, but seem to take much longer to show regression.

I've also had a full craniotomy (I had 2 grapefruit-size brain tumors) and three rounds of gamma knife to get the remainder of the tumors.

Unfortunately, we're now finding new mets in the ventricles and spinal fluid is coming up positive for malignant cells. Radiation does not treat these. In 3 months, they grew from 2cm to 8cm. Now I'm experiencing serious neurological symptoms and headaches. MRI of the spine shows no tumors, yet. As a result, now we're moving to BRAF and MEK inhibitors in combination. It sounds like, if he's on Opdivo, he must not be BRAF positive. And if they don't know, they need to find out! (it's a lab test on a tumor. They tested my brain tumors during the craniotomy.)

One other thing they talk about, should the BRAF/MEK inhibitors not work, is sending me to the MD Anderson clinic in Texas for CAR-T cell therapy. My primary oncologist has been on the phone with them to arrange everything in advance, should we need to exercise this option. I have no idea how I'd pay for it and arrange transport from California, but I know the many foundations out there can assist with this. They might at least look into this if there are no further drugs that would help. Also, just more reason to get more opinions from other oncologists.

As others have said, a second and third opinion can be huge. I didn't want to go see another doctor at first, but when I did I was completely furious at and over my first oncologist. My second and third opinions were both furious that the first doctor did not go with inhibitors to begin with. My first oncologist was trying to push Opdivo through and force my insurance to approve it. I read that Keytruda was what I needed with the BRAF marker, and I had to demand Keytruda. I was started on Yervoy when this all started, had zero response to it, but had at least 12 new tumors form while on Yervoy and I was certain death was coming last November. My point is, sometimes an oncologist knows too little about melanoma to effectively treat it – and this is a life, not replaceable, so those second and third opinions are valuable beyond money.

And I'll throw it out there, but I know for many it is not an option or they won't even consider it. Concentrated THC (marijuana, but clean, sterile and liquid form) four (4) hours prior to radiation in combination with the Keytruda, I swear, is to thank for the massive tumor death. After the radiation, oncologists were amazed by the results, falling to the floor screaming "melanoma DOES NOT respond like this." If anyone goes this route, I highly recommend a cannabis expert who is familiar with oncology. I have an oncology doctor prescribing the exact dosing of THC (kill tumors), CBD (stop spread), and THCa (kill brain mets) that I use. Even when I talk to random strangers, half of them first ask – "are you taking CBD!?" when they hear melanoma. Further, the cannabis doctor makes sure we don't interfere with other drugs. I won't go too much into details, but to say that It's expensive and when I was at the brink of death, it brought me back. I know it's making a difference.

I don't know if this well help, but thought I'd share as a Stage 4 Melanoma patient constantly battling brain mets. My understanding is that Opdivo and Keytruda are very similar and both are supposed to cross the blood/brain barrier (unlike Yervoy.) I have the BRAF marker, so Keytruda was what they went with as I had not been put on BRAF inhibitors. (The inhibitors are required before Opdivo is even an option.) When we combined Keytruda with 5 days of radiation to a large body tumor, that tumor and the other tumors were gone in less than 60 days and the brain mets greatly diminished. (THC was also used, detailed below.) My largest was up to 12cm and down to 2cm within 3 months. They grow very fast, but seem to take much longer to show regression.

I've also had a full craniotomy (I had 2 grapefruit-size brain tumors) and three rounds of gamma knife to get the remainder of the tumors.

Unfortunately, we're now finding new mets in the ventricles and spinal fluid is coming up positive for malignant cells. Radiation does not treat these. In 3 months, they grew from 2cm to 8cm. Now I'm experiencing serious neurological symptoms and headaches. MRI of the spine shows no tumors, yet. As a result, now we're moving to BRAF and MEK inhibitors in combination. It sounds like, if he's on Opdivo, he must not be BRAF positive. And if they don't know, they need to find out! (it's a lab test on a tumor. They tested my brain tumors during the craniotomy.)

One other thing they talk about, should the BRAF/MEK inhibitors not work, is sending me to the MD Anderson clinic in Texas for CAR-T cell therapy. My primary oncologist has been on the phone with them to arrange everything in advance, should we need to exercise this option. I have no idea how I'd pay for it and arrange transport from California, but I know the many foundations out there can assist with this. They might at least look into this if there are no further drugs that would help. Also, just more reason to get more opinions from other oncologists.

As others have said, a second and third opinion can be huge. I didn't want to go see another doctor at first, but when I did I was completely furious at and over my first oncologist. My second and third opinions were both furious that the first doctor did not go with inhibitors to begin with. My first oncologist was trying to push Opdivo through and force my insurance to approve it. I read that Keytruda was what I needed with the BRAF marker, and I had to demand Keytruda. I was started on Yervoy when this all started, had zero response to it, but had at least 12 new tumors form while on Yervoy and I was certain death was coming last November. My point is, sometimes an oncologist knows too little about melanoma to effectively treat it – and this is a life, not replaceable, so those second and third opinions are valuable beyond money.

And I'll throw it out there, but I know for many it is not an option or they won't even consider it. Concentrated THC (marijuana, but clean, sterile and liquid form) four (4) hours prior to radiation in combination with the Keytruda, I swear, is to thank for the massive tumor death. After the radiation, oncologists were amazed by the results, falling to the floor screaming "melanoma DOES NOT respond like this." If anyone goes this route, I highly recommend a cannabis expert who is familiar with oncology. I have an oncology doctor prescribing the exact dosing of THC (kill tumors), CBD (stop spread), and THCa (kill brain mets) that I use. Even when I talk to random strangers, half of them first ask – "are you taking CBD!?" when they hear melanoma. Further, the cannabis doctor makes sure we don't interfere with other drugs. I won't go too much into details, but to say that It's expensive and when I was at the brink of death, it brought me back. I know it's making a difference.

Well thanks for clarifying. As you can tell, my first Oncologist kind of sucked. And with active brain mets, I get horrible neurological symptoms and headaches. It's certainly hard to keep things straight. But I clearly see how unwelcoming these forums are, so I'll try to delete my post and never bother again.

Well thanks for clarifying. As you can tell, my first Oncologist kind of sucked. And with active brain mets, I get horrible neurological symptoms and headaches. It's certainly hard to keep things straight. But I clearly see how unwelcoming these forums are, so I'll try to delete my post and never bother again.

Well thanks for clarifying. As you can tell, my first Oncologist kind of sucked. And with active brain mets, I get horrible neurological symptoms and headaches. It's certainly hard to keep things straight. But I clearly see how unwelcoming these forums are, so I'll try to delete my post and never bother again.