Stage 3C ipi maybe not working

My husband had the induction phase of 10 mg ipi as part of a clinical trial. At 14 weeks, a small mets was found in his liver. He underwent ablation surgery band has been NED since May. He was dismissed from the clinical trial. We think that the ipi worked. The trial was stopped for several weeks before he started treatment. Ipi can take up to 12 weeks to  reach therapeutic levels and longer to take effect. His mets actually shrank a little between the CAT scan and the surgery.. We were happy to find out later that melanoma patients who undergo liver ablation surgery do very well, but it was really scary at the time. Hang in there.

julie- I am glad you are doing well.

My husband had the induction phase of 10 mg ipi as part of a clinical trial. At 14 weeks, a small mets was found in his liver. He underwent ablation surgery band has been NED since May. He was dismissed from the clinical trial. We think that the ipi worked. The trial was stopped for several weeks before he started treatment. Ipi can take up to 12 weeks to  reach therapeutic levels and longer to take effect. His mets actually shrank a little between the CAT scan and the surgery.. We were happy to find out later that melanoma patients who undergo liver ablation surgery do very well, but it was really scary at the time. Hang in there.

julie- I am glad you are doing well.

My husband had the induction phase of 10 mg ipi as part of a clinical trial. At 14 weeks, a small mets was found in his liver. He underwent ablation surgery band has been NED since May. He was dismissed from the clinical trial. We think that the ipi worked. The trial was stopped for several weeks before he started treatment. Ipi can take up to 12 weeks to  reach therapeutic levels and longer to take effect. His mets actually shrank a little between the CAT scan and the surgery.. We were happy to find out later that melanoma patients who undergo liver ablation surgery do very well, but it was really scary at the time. Hang in there.

julie- I am glad you are doing well.

Just curious what foods and drinks he eats/drinks daily consists of?

Also if he has a deep seated sub-consciences problem plaguing him?

Don't except him to admit one to you but please make it known.

Just curious what foods and drinks he eats/drinks daily consists of?

Also if he has a deep seated sub-consciences problem plaguing him?

Don't except him to admit one to you but please make it known.

Just curious what foods and drinks he eats/drinks daily consists of?

Also if he has a deep seated sub-consciences problem plaguing him?

Don't except him to admit one to you but please make it known.

Yes, there is a theory that in some patients the damage that radiation causes to the tumor can release/expose proteins in the tumor that can set off a response from the immune system. It's called the abscopal effect. Depending on where in the body the radiation is being delivered, how much, and for how long will determine the side effects. I had whole brain radiation 5 days a week for 3 weeks which started just a few days before my first Ipi dose- so I essentially did both at the same time. I didn't have any side effects until the end (or after finishing) the radiation and to be honest I wasn't sure what side effects were coming from which therapy, though none were really that bad. Mostly I was tired, thought I did have some nausea, and some mild GI issues (that I'm pretty sure was the Ipi, the first coupe could be from either the radiation or the Ipi) Again, Ipi didn't work for me, thought the radiation did shrink down the 7 small brain mets I had. I know some have had bone mets that have been treated during or around the time they got Ipi, but I'm sorry I'm not sure how many of them may have benefited from the abscopal effect, or what the literature says (it's been quite a long time since I've looked at any research related to it. 

In general, melanoma is considered to be relatively resistant to radiation, but everyone's case is different. For me, radiation does seem successful (as much as I hate it) at least in my brain (perhaps a little too successful since I recently had a large area removed from my brain that turned out to be radiation induced necrosis). If there's pain associated with a specific tumor, radiation can definitely help knock it back enough to relieve pain. However, if at any time your son (or you) don't like the plan or what's being presented to you, please don't be afraid to get a second opinion. You should never feel forced into a therapy/plan you aren't completely comfortable with. You should always be confident in the decisions you make and never want to be second guessing.

Good luck

-Eva

Yes, there is a theory that in some patients the damage that radiation causes to the tumor can release/expose proteins in the tumor that can set off a response from the immune system. It's called the abscopal effect. Depending on where in the body the radiation is being delivered, how much, and for how long will determine the side effects. I had whole brain radiation 5 days a week for 3 weeks which started just a few days before my first Ipi dose- so I essentially did both at the same time. I didn't have any side effects until the end (or after finishing) the radiation and to be honest I wasn't sure what side effects were coming from which therapy, though none were really that bad. Mostly I was tired, thought I did have some nausea, and some mild GI issues (that I'm pretty sure was the Ipi, the first coupe could be from either the radiation or the Ipi) Again, Ipi didn't work for me, thought the radiation did shrink down the 7 small brain mets I had. I know some have had bone mets that have been treated during or around the time they got Ipi, but I'm sorry I'm not sure how many of them may have benefited from the abscopal effect, or what the literature says (it's been quite a long time since I've looked at any research related to it. 

In general, melanoma is considered to be relatively resistant to radiation, but everyone's case is different. For me, radiation does seem successful (as much as I hate it) at least in my brain (perhaps a little too successful since I recently had a large area removed from my brain that turned out to be radiation induced necrosis). If there's pain associated with a specific tumor, radiation can definitely help knock it back enough to relieve pain. However, if at any time your son (or you) don't like the plan or what's being presented to you, please don't be afraid to get a second opinion. You should never feel forced into a therapy/plan you aren't completely comfortable with. You should always be confident in the decisions you make and never want to be second guessing.

Good luck

-Eva

Yes, there is a theory that in some patients the damage that radiation causes to the tumor can release/expose proteins in the tumor that can set off a response from the immune system. It's called the abscopal effect. Depending on where in the body the radiation is being delivered, how much, and for how long will determine the side effects. I had whole brain radiation 5 days a week for 3 weeks which started just a few days before my first Ipi dose- so I essentially did both at the same time. I didn't have any side effects until the end (or after finishing) the radiation and to be honest I wasn't sure what side effects were coming from which therapy, though none were really that bad. Mostly I was tired, thought I did have some nausea, and some mild GI issues (that I'm pretty sure was the Ipi, the first coupe could be from either the radiation or the Ipi) Again, Ipi didn't work for me, thought the radiation did shrink down the 7 small brain mets I had. I know some have had bone mets that have been treated during or around the time they got Ipi, but I'm sorry I'm not sure how many of them may have benefited from the abscopal effect, or what the literature says (it's been quite a long time since I've looked at any research related to it. 

In general, melanoma is considered to be relatively resistant to radiation, but everyone's case is different. For me, radiation does seem successful (as much as I hate it) at least in my brain (perhaps a little too successful since I recently had a large area removed from my brain that turned out to be radiation induced necrosis). If there's pain associated with a specific tumor, radiation can definitely help knock it back enough to relieve pain. However, if at any time your son (or you) don't like the plan or what's being presented to you, please don't be afraid to get a second opinion. You should never feel forced into a therapy/plan you aren't completely comfortable with. You should always be confident in the decisions you make and never want to be second guessing.

Good luck

-Eva

Not really. My radiation oncologist spread the total dose over 3 weeks instead of doing it in the typical 2 weeks because he said there had been studies that doing that helps minimize size effects. He also started me on an alzheimers medication because on of the major complications that can happen with whole brain radiation is a loss of memory. I was on those medications for 6 months and I do think they helped. A lot has to do with where in the brain the tumor(s) is/are, how big it is/they are, and whether or not you had symptoms at the time of diagnosis. I have been fortunate in that all of my tumors (which total near 20 at this point) have been found by routine scans and I have never had any symptoms related to them. The worst things that happened with the whole brain was that the radiation irritated my salivary glands and I had a couple of days of swollen, tender glands followed by a couple weeks of mild dry mouth, but that came back to normal before too long. The other thing that was worse, was that the radiation beam "burned" my ear canals (like a sunburn inside my ears). That was really uncomfortable and made it hard to sleep. My doctor gave me some cream to use  for it and I took pain killers before bed, but that lasted nearly a month. I also had some fatigue and nausea, but they didn't hit until the end of or after the 3 weeks and as I said (possibly in another post somewhere?) since I was also getting Ipi (and doing selft injections of Leukine) I really wasn't sure what side effects were from what therapy. The nausea was relatively mild and easily controlled with medication. Fatigue there's not much anyone can do for that, you just have to rest when you need to. I will note that it is common for side effects to not show up until the end or even shortly after the radiation is finished- I was well warned about that from my doctor. 

The targeted radiation is easier (except for the part where they screw a frame to your skull, but even that really isn't so bad since they use so much lidocaine to numb the areas where the screws go. It's actually worse when they take it off- both times I basically got a massive migrane for an hour or so after, despite them giving me a pain killer through my IV prior to removing it as it's known that removal causes severe headache. They do mildly sedate you, which in my case makes the room spin and I get a little motion sickness. Mostly though the therapy is in the morning and I sleep most of the day while I'm in the hospital (probably from the sedation), in the car on the way home, and once I get home. 

I don't blame your son for being terrified of getting brain mets- I was as well. I figured I could deal with it anywhere except in my brain… then I got brain mets and had to figure out how to deal with anyway. It's the one place everyone hopes it won't go. By the way, I was 29 when I was first diagnosed, and 31 when first diagnosed with brain mets. Again, it was on a routine scan intended to help me get into a trial (instead it disqualified me from the trial). I hope your son is getting at least one MRI a year (often they do one every 6 months) to check his brain, more often/sooner if he begins experiencing things that could be symptoms: headaches, ringing in his ears, problems with memory or speach, odd numbness anywhere, difficulty moving/paralysis, seizure, changes or loss in vision, etc. Anything that changes or is new should be immediately reported to his oncologists (keep in mind some of these symptoms (specifically headaches) may also be a side effect of Ipi, but that doesn't mean it shouldn't be reported to the doctor)

Try not to worry until there's a reason to do so- that's the philosophy I've gone with for a while now. It's not easy, but if you can do it, you sleep a whole lot better at night.

Best of luck

Not really. My radiation oncologist spread the total dose over 3 weeks instead of doing it in the typical 2 weeks because he said there had been studies that doing that helps minimize size effects. He also started me on an alzheimers medication because on of the major complications that can happen with whole brain radiation is a loss of memory. I was on those medications for 6 months and I do think they helped. A lot has to do with where in the brain the tumor(s) is/are, how big it is/they are, and whether or not you had symptoms at the time of diagnosis. I have been fortunate in that all of my tumors (which total near 20 at this point) have been found by routine scans and I have never had any symptoms related to them. The worst things that happened with the whole brain was that the radiation irritated my salivary glands and I had a couple of days of swollen, tender glands followed by a couple weeks of mild dry mouth, but that came back to normal before too long. The other thing that was worse, was that the radiation beam "burned" my ear canals (like a sunburn inside my ears). That was really uncomfortable and made it hard to sleep. My doctor gave me some cream to use  for it and I took pain killers before bed, but that lasted nearly a month. I also had some fatigue and nausea, but they didn't hit until the end of or after the 3 weeks and as I said (possibly in another post somewhere?) since I was also getting Ipi (and doing selft injections of Leukine) I really wasn't sure what side effects were from what therapy. The nausea was relatively mild and easily controlled with medication. Fatigue there's not much anyone can do for that, you just have to rest when you need to. I will note that it is common for side effects to not show up until the end or even shortly after the radiation is finished- I was well warned about that from my doctor. 

The targeted radiation is easier (except for the part where they screw a frame to your skull, but even that really isn't so bad since they use so much lidocaine to numb the areas where the screws go. It's actually worse when they take it off- both times I basically got a massive migrane for an hour or so after, despite them giving me a pain killer through my IV prior to removing it as it's known that removal causes severe headache. They do mildly sedate you, which in my case makes the room spin and I get a little motion sickness. Mostly though the therapy is in the morning and I sleep most of the day while I'm in the hospital (probably from the sedation), in the car on the way home, and once I get home. 

I don't blame your son for being terrified of getting brain mets- I was as well. I figured I could deal with it anywhere except in my brain… then I got brain mets and had to figure out how to deal with anyway. It's the one place everyone hopes it won't go. By the way, I was 29 when I was first diagnosed, and 31 when first diagnosed with brain mets. Again, it was on a routine scan intended to help me get into a trial (instead it disqualified me from the trial). I hope your son is getting at least one MRI a year (often they do one every 6 months) to check his brain, more often/sooner if he begins experiencing things that could be symptoms: headaches, ringing in his ears, problems with memory or speach, odd numbness anywhere, difficulty moving/paralysis, seizure, changes or loss in vision, etc. Anything that changes or is new should be immediately reported to his oncologists (keep in mind some of these symptoms (specifically headaches) may also be a side effect of Ipi, but that doesn't mean it shouldn't be reported to the doctor)

Try not to worry until there's a reason to do so- that's the philosophy I've gone with for a while now. It's not easy, but if you can do it, you sleep a whole lot better at night.

Best of luck

Not really. My radiation oncologist spread the total dose over 3 weeks instead of doing it in the typical 2 weeks because he said there had been studies that doing that helps minimize size effects. He also started me on an alzheimers medication because on of the major complications that can happen with whole brain radiation is a loss of memory. I was on those medications for 6 months and I do think they helped. A lot has to do with where in the brain the tumor(s) is/are, how big it is/they are, and whether or not you had symptoms at the time of diagnosis. I have been fortunate in that all of my tumors (which total near 20 at this point) have been found by routine scans and I have never had any symptoms related to them. The worst things that happened with the whole brain was that the radiation irritated my salivary glands and I had a couple of days of swollen, tender glands followed by a couple weeks of mild dry mouth, but that came back to normal before too long. The other thing that was worse, was that the radiation beam "burned" my ear canals (like a sunburn inside my ears). That was really uncomfortable and made it hard to sleep. My doctor gave me some cream to use  for it and I took pain killers before bed, but that lasted nearly a month. I also had some fatigue and nausea, but they didn't hit until the end of or after the 3 weeks and as I said (possibly in another post somewhere?) since I was also getting Ipi (and doing selft injections of Leukine) I really wasn't sure what side effects were from what therapy. The nausea was relatively mild and easily controlled with medication. Fatigue there's not much anyone can do for that, you just have to rest when you need to. I will note that it is common for side effects to not show up until the end or even shortly after the radiation is finished- I was well warned about that from my doctor. 

The targeted radiation is easier (except for the part where they screw a frame to your skull, but even that really isn't so bad since they use so much lidocaine to numb the areas where the screws go. It's actually worse when they take it off- both times I basically got a massive migrane for an hour or so after, despite them giving me a pain killer through my IV prior to removing it as it's known that removal causes severe headache. They do mildly sedate you, which in my case makes the room spin and I get a little motion sickness. Mostly though the therapy is in the morning and I sleep most of the day while I'm in the hospital (probably from the sedation), in the car on the way home, and once I get home. 

I don't blame your son for being terrified of getting brain mets- I was as well. I figured I could deal with it anywhere except in my brain… then I got brain mets and had to figure out how to deal with anyway. It's the one place everyone hopes it won't go. By the way, I was 29 when I was first diagnosed, and 31 when first diagnosed with brain mets. Again, it was on a routine scan intended to help me get into a trial (instead it disqualified me from the trial). I hope your son is getting at least one MRI a year (often they do one every 6 months) to check his brain, more often/sooner if he begins experiencing things that could be symptoms: headaches, ringing in his ears, problems with memory or speach, odd numbness anywhere, difficulty moving/paralysis, seizure, changes or loss in vision, etc. Anything that changes or is new should be immediately reported to his oncologists (keep in mind some of these symptoms (specifically headaches) may also be a side effect of Ipi, but that doesn't mean it shouldn't be reported to the doctor)

Try not to worry until there's a reason to do so- that's the philosophy I've gone with for a while now. It's not easy, but if you can do it, you sleep a whole lot better at night.

Best of luck

There is also researh out there that radiation can cause cancers to spread because it only kills the daugther cancer cells and doesnt kill the cancer stem cells which then become more resilient and much more aggressive as a result.

That is why people often get that first initial good response of tumour shrinkage and everyone is really happy and then the cancer comes back bigger and stronger.

I would avoid it like the plague for stage 111 young health male..

Ask your oncologist about this research and see what he says.

There is also researh out there that radiation can cause cancers to spread because it only kills the daugther cancer cells and doesnt kill the cancer stem cells which then become more resilient and much more aggressive as a result.

That is why people often get that first initial good response of tumour shrinkage and everyone is really happy and then the cancer comes back bigger and stronger.

I would avoid it like the plague for stage 111 young health male..

Ask your oncologist about this research and see what he says.

There is also researh out there that radiation can cause cancers to spread because it only kills the daugther cancer cells and doesnt kill the cancer stem cells which then become more resilient and much more aggressive as a result.

That is why people often get that first initial good response of tumour shrinkage and everyone is really happy and then the cancer comes back bigger and stronger.

I would avoid it like the plague for stage 111 young health male..

Ask your oncologist about this research and see what he says.