Scans and Keytruda

Kerri,

Yours is a sad story with what seams no where to go.  I think at this point in Jake's life you should explore all options available to you and you feel acceptable with your religion. I am a stage IIIB and I am on Opdivo under a clinical trial so I have agreed not to take any meds or supplements other than what my Dr provides.  I am doing this to hopefully provide good results for others at my stage. If I should move to a stage IV, I will explore all options both legal and illegal.

I do juice vegetables to increase vitamins and O2 levels in my blood. I think this is a good step and you can read about Dr. Max Gerson (Google if you have not). Other investigations have led to Cannabis Oil treatment. I am very serious about this as I have seen how it had cured cancers in people I know that at are stage 3 and 4.  It is very inexpensive compared to FDA approved drugs.  I have discussed this with my DR and he asked me not to use the cannabis oil until I have completed my treatment of Opdivo. He even agrees as a cancer patient I should do everything in my power to cure myself.  

I do not know if Medical Marijuana is legal in Utah, but you are close enough to to to Colorado. Please research it and read up on European Cannabis Oil treatments and studies. (I am not talking about smoking pot). 

I will pray for Jake and others that are stricken with all ills. 

Tom

Kerri,

Yours is a sad story with what seams no where to go.  I think at this point in Jake's life you should explore all options available to you and you feel acceptable with your religion. I am a stage IIIB and I am on Opdivo under a clinical trial so I have agreed not to take any meds or supplements other than what my Dr provides.  I am doing this to hopefully provide good results for others at my stage. If I should move to a stage IV, I will explore all options both legal and illegal.

I do juice vegetables to increase vitamins and O2 levels in my blood. I think this is a good step and you can read about Dr. Max Gerson (Google if you have not). Other investigations have led to Cannabis Oil treatment. I am very serious about this as I have seen how it had cured cancers in people I know that at are stage 3 and 4.  It is very inexpensive compared to FDA approved drugs.  I have discussed this with my DR and he asked me not to use the cannabis oil until I have completed my treatment of Opdivo. He even agrees as a cancer patient I should do everything in my power to cure myself.  

I do not know if Medical Marijuana is legal in Utah, but you are close enough to to to Colorado. Please research it and read up on European Cannabis Oil treatments and studies. (I am not talking about smoking pot). 

I will pray for Jake and others that are stricken with all ills. 

Tom

Kerri,

Yours is a sad story with what seams no where to go.  I think at this point in Jake's life you should explore all options available to you and you feel acceptable with your religion. I am a stage IIIB and I am on Opdivo under a clinical trial so I have agreed not to take any meds or supplements other than what my Dr provides.  I am doing this to hopefully provide good results for others at my stage. If I should move to a stage IV, I will explore all options both legal and illegal.

I do juice vegetables to increase vitamins and O2 levels in my blood. I think this is a good step and you can read about Dr. Max Gerson (Google if you have not). Other investigations have led to Cannabis Oil treatment. I am very serious about this as I have seen how it had cured cancers in people I know that at are stage 3 and 4.  It is very inexpensive compared to FDA approved drugs.  I have discussed this with my DR and he asked me not to use the cannabis oil until I have completed my treatment of Opdivo. He even agrees as a cancer patient I should do everything in my power to cure myself.  

I do not know if Medical Marijuana is legal in Utah, but you are close enough to to to Colorado. Please research it and read up on European Cannabis Oil treatments and studies. (I am not talking about smoking pot). 

I will pray for Jake and others that are stricken with all ills. 

Tom

Hi Kerri,

I've read your story a number of times and I have to tell you, it breaks my heart.  I was 29 when I was diagnosed and I felt like the world was being mean.  I hear about your son, and it just seems doubly cruel.  I'm praying for the best.

As I was starting Keytruda, I (really, my now-wife) had questions about how long, what are the goals, what do we do in response to stability.  This is where you really need to work with your Oncologist because as much as it's a clinical approach, it's also about treating your son.  So, if he feels good and he's gaining weight, your oncologist may be apprehensive to stop/switch from Keytruda.  I think you understand that.

One thought my doc mentioned when I started ipi (as Keytruda wasn't yet approved as a frontline option) was that there is at least some belief that ipi and keytruda may also work together (like the ipi/nivo combo) and that my doc had perhaps noted a potential for more success with followup of keytruda after ipi.  Perhaps its worth investigating.  It sounds like your doc sees a strong young man and is considering a variety of options.  It also sounds like he would tolerate ipi well, but that's for you, your son and the docs to decide.  

Hang in there.  I'm sure many others will chime in with lots of thoughts.  

-Justin

Hi Kerri,

I've read your story a number of times and I have to tell you, it breaks my heart.  I was 29 when I was diagnosed and I felt like the world was being mean.  I hear about your son, and it just seems doubly cruel.  I'm praying for the best.

As I was starting Keytruda, I (really, my now-wife) had questions about how long, what are the goals, what do we do in response to stability.  This is where you really need to work with your Oncologist because as much as it's a clinical approach, it's also about treating your son.  So, if he feels good and he's gaining weight, your oncologist may be apprehensive to stop/switch from Keytruda.  I think you understand that.

One thought my doc mentioned when I started ipi (as Keytruda wasn't yet approved as a frontline option) was that there is at least some belief that ipi and keytruda may also work together (like the ipi/nivo combo) and that my doc had perhaps noted a potential for more success with followup of keytruda after ipi.  Perhaps its worth investigating.  It sounds like your doc sees a strong young man and is considering a variety of options.  It also sounds like he would tolerate ipi well, but that's for you, your son and the docs to decide.  

Hang in there.  I'm sure many others will chime in with lots of thoughts.  

-Justin

Hi Kerri,

I've read your story a number of times and I have to tell you, it breaks my heart.  I was 29 when I was diagnosed and I felt like the world was being mean.  I hear about your son, and it just seems doubly cruel.  I'm praying for the best.

As I was starting Keytruda, I (really, my now-wife) had questions about how long, what are the goals, what do we do in response to stability.  This is where you really need to work with your Oncologist because as much as it's a clinical approach, it's also about treating your son.  So, if he feels good and he's gaining weight, your oncologist may be apprehensive to stop/switch from Keytruda.  I think you understand that.

One thought my doc mentioned when I started ipi (as Keytruda wasn't yet approved as a frontline option) was that there is at least some belief that ipi and keytruda may also work together (like the ipi/nivo combo) and that my doc had perhaps noted a potential for more success with followup of keytruda after ipi.  Perhaps its worth investigating.  It sounds like your doc sees a strong young man and is considering a variety of options.  It also sounds like he would tolerate ipi well, but that's for you, your son and the docs to decide.  

Hang in there.  I'm sure many others will chime in with lots of thoughts.  

-Justin

Hello,

I just wanted to mention that IPI does not give all bad side effects as we are all individuals and each of us reacts to each medication differently.  Any medication you take for anything has bad side effects but that does not mean he will get them.

My husband took IPI and he is now NED and he had mets in liver and lungs and he did not have a lot of side effects so it might be worth a try.  That and your son is young and active so it may not be bad at all for him.

Some drugs work well with others and maybe this one would or another combo. 

Judy (loving wife of Gene Stage IV and now NED for over 3 years)

Hello,

I just wanted to mention that IPI does not give all bad side effects as we are all individuals and each of us reacts to each medication differently.  Any medication you take for anything has bad side effects but that does not mean he will get them.

My husband took IPI and he is now NED and he had mets in liver and lungs and he did not have a lot of side effects so it might be worth a try.  That and your son is young and active so it may not be bad at all for him.

Some drugs work well with others and maybe this one would or another combo. 

Judy (loving wife of Gene Stage IV and now NED for over 3 years)

Hello,

I just wanted to mention that IPI does not give all bad side effects as we are all individuals and each of us reacts to each medication differently.  Any medication you take for anything has bad side effects but that does not mean he will get them.

My husband took IPI and he is now NED and he had mets in liver and lungs and he did not have a lot of side effects so it might be worth a try.  That and your son is young and active so it may not be bad at all for him.

Some drugs work well with others and maybe this one would or another combo. 

Judy (loving wife of Gene Stage IV and now NED for over 3 years)

Kerri, reading your story my heart aches for you and Jake both. My college-age son also battled cancer recently (his was another kind, with a kinder prognosis), and I understand how terrifying this could be.

On the plus side, your son sounds like he would be a strong candidate for the many more immunotherapy options available for Stage IV melanoma since FDA approval in October. My research for myself (Stage IV from the hop) led to the ipi/nivo combo, which studies show offer the most promising results, and are keeping me stable right now (although I'm just 7 months into this). Because these drugs are now FDA approved and are not tied to strict clinical trial parameters, there's more flexibility to start with both, drop one if there's significant toxicity then bring it back in later if there's more disease progression, etc. Every case is different but there are more options now. 

Jake's appetite and activity are strong signs he may be able to tolerate the ipi/nivo combo well…your oncologist would know best. I encourage you to at least inquire about that option.

Love and prayers to you too –

Kerri, reading your story my heart aches for you and Jake both. My college-age son also battled cancer recently (his was another kind, with a kinder prognosis), and I understand how terrifying this could be.

On the plus side, your son sounds like he would be a strong candidate for the many more immunotherapy options available for Stage IV melanoma since FDA approval in October. My research for myself (Stage IV from the hop) led to the ipi/nivo combo, which studies show offer the most promising results, and are keeping me stable right now (although I'm just 7 months into this). Because these drugs are now FDA approved and are not tied to strict clinical trial parameters, there's more flexibility to start with both, drop one if there's significant toxicity then bring it back in later if there's more disease progression, etc. Every case is different but there are more options now. 

Jake's appetite and activity are strong signs he may be able to tolerate the ipi/nivo combo well…your oncologist would know best. I encourage you to at least inquire about that option.

Love and prayers to you too –

Kerri, reading your story my heart aches for you and Jake both. My college-age son also battled cancer recently (his was another kind, with a kinder prognosis), and I understand how terrifying this could be.

On the plus side, your son sounds like he would be a strong candidate for the many more immunotherapy options available for Stage IV melanoma since FDA approval in October. My research for myself (Stage IV from the hop) led to the ipi/nivo combo, which studies show offer the most promising results, and are keeping me stable right now (although I'm just 7 months into this). Because these drugs are now FDA approved and are not tied to strict clinical trial parameters, there's more flexibility to start with both, drop one if there's significant toxicity then bring it back in later if there's more disease progression, etc. Every case is different but there are more options now. 

Jake's appetite and activity are strong signs he may be able to tolerate the ipi/nivo combo well…your oncologist would know best. I encourage you to at least inquire about that option.

Love and prayers to you too –

Hi Kerry, my heart goes out to you and wish you and Jake all the very best. I'd like to echo what Justin and Maria said about ipi working real well with Keytruda. When I was diagnosed as stage 4 in January I had the choice of Keytruda mono therapy or ipi with nivolumab . My tumour burden was low so I chose Keytruda monotherapy because of the side effects. However, my research showed better efficacy from the combo. I guess you know that the ipi combo is 4 doses three weeks apart. I've read that ipi educates the immune system over the longer term and I hope you 'll consider it. Xx

Mel J

Hi Kerry, my heart goes out to you and wish you and Jake all the very best. I'd like to echo what Justin and Maria said about ipi working real well with Keytruda. When I was diagnosed as stage 4 in January I had the choice of Keytruda mono therapy or ipi with nivolumab . My tumour burden was low so I chose Keytruda monotherapy because of the side effects. However, my research showed better efficacy from the combo. I guess you know that the ipi combo is 4 doses three weeks apart. I've read that ipi educates the immune system over the longer term and I hope you 'll consider it. Xx

Mel J

Hi Kerry, my heart goes out to you and wish you and Jake all the very best. I'd like to echo what Justin and Maria said about ipi working real well with Keytruda. When I was diagnosed as stage 4 in January I had the choice of Keytruda mono therapy or ipi with nivolumab . My tumour burden was low so I chose Keytruda monotherapy because of the side effects. However, my research showed better efficacy from the combo. I guess you know that the ipi combo is 4 doses three weeks apart. I've read that ipi educates the immune system over the longer term and I hope you 'll consider it. Xx

Mel J

Hi Kerry,

Echoing others here, I can't imagine the pain you are going through, and you just have to admire your Son's spirit, and obvious will to live.  That said, I also agree the ipi/nivo combo seems like the obvious next choice.  I would also suggest that more and more evidence is pointing to adding a third treatment to the combo of radiation therapy.  The radiation begins to destroy the tumors, releasing antigens that the immune system then targets.  In some cases there is a systemic response, as though once the immune system recognizes, and get a taste for those tumor cells it goes after all of them.

I will veer away from others advice based on my own non-response to everything we can throw at my disease.  My specialist scans me very often, and if something is not working we try something else.  Time is not on our side when we are constantly seeing progression.  I think just continuing the pembro alone at this point is a mistake.  You must do more.  Since I have run the gamut in FDA treatments, I will likely move back to clinical trials, where novel drug combo therapies are being tried, and possibly look at adoptive cell therapy (TIL) as next steps.  Best to you and your family.

Gary

Hi Kerry,

Echoing others here, I can't imagine the pain you are going through, and you just have to admire your Son's spirit, and obvious will to live.  That said, I also agree the ipi/nivo combo seems like the obvious next choice.  I would also suggest that more and more evidence is pointing to adding a third treatment to the combo of radiation therapy.  The radiation begins to destroy the tumors, releasing antigens that the immune system then targets.  In some cases there is a systemic response, as though once the immune system recognizes, and get a taste for those tumor cells it goes after all of them.

I will veer away from others advice based on my own non-response to everything we can throw at my disease.  My specialist scans me very often, and if something is not working we try something else.  Time is not on our side when we are constantly seeing progression.  I think just continuing the pembro alone at this point is a mistake.  You must do more.  Since I have run the gamut in FDA treatments, I will likely move back to clinical trials, where novel drug combo therapies are being tried, and possibly look at adoptive cell therapy (TIL) as next steps.  Best to you and your family.

Gary

Hi Kerry,

Echoing others here, I can't imagine the pain you are going through, and you just have to admire your Son's spirit, and obvious will to live.  That said, I also agree the ipi/nivo combo seems like the obvious next choice.  I would also suggest that more and more evidence is pointing to adding a third treatment to the combo of radiation therapy.  The radiation begins to destroy the tumors, releasing antigens that the immune system then targets.  In some cases there is a systemic response, as though once the immune system recognizes, and get a taste for those tumor cells it goes after all of them.

I will veer away from others advice based on my own non-response to everything we can throw at my disease.  My specialist scans me very often, and if something is not working we try something else.  Time is not on our side when we are constantly seeing progression.  I think just continuing the pembro alone at this point is a mistake.  You must do more.  Since I have run the gamut in FDA treatments, I will likely move back to clinical trials, where novel drug combo therapies are being tried, and possibly look at adoptive cell therapy (TIL) as next steps.  Best to you and your family.

Gary

I think you need to have a back up plan.

In my case I am on the combo and if i fail i would have nothing to fall back on.

So I have investigated the cannabis oil and have a contact and will start with CO if i fail the Ipi/Nivo combo.

I doubt whether my body could take too many more drugs or toxic treatments so I think given that there is some evidence that the CO works for some people it is worth a shot.

Additionally it is good for pain management and general quality of life.

I really wish you all the best so hard to deal with this horrible disease for someone so young.

I think you need to have a back up plan.

In my case I am on the combo and if i fail i would have nothing to fall back on.

So I have investigated the cannabis oil and have a contact and will start with CO if i fail the Ipi/Nivo combo.

I doubt whether my body could take too many more drugs or toxic treatments so I think given that there is some evidence that the CO works for some people it is worth a shot.

Additionally it is good for pain management and general quality of life.

I really wish you all the best so hard to deal with this horrible disease for someone so young.

I think you need to have a back up plan.

In my case I am on the combo and if i fail i would have nothing to fall back on.

So I have investigated the cannabis oil and have a contact and will start with CO if i fail the Ipi/Nivo combo.

I doubt whether my body could take too many more drugs or toxic treatments so I think given that there is some evidence that the CO works for some people it is worth a shot.

Additionally it is good for pain management and general quality of life.

I really wish you all the best so hard to deal with this horrible disease for someone so young.

I will echo others here and say that the ipi/nivo combo seems to be the logical next step.

As a young person who seems to be in otherwise good health, I think that TIL treatment and even Interleukin 2 (IL-2) are possible considerations if the combo doesn't prove effective.

It does sound like it's probably time to switch up the treatment plan, based on your description of what's going on. I wish you the best of luck.

I will echo others here and say that the ipi/nivo combo seems to be the logical next step.

As a young person who seems to be in otherwise good health, I think that TIL treatment and even Interleukin 2 (IL-2) are possible considerations if the combo doesn't prove effective.

It does sound like it's probably time to switch up the treatment plan, based on your description of what's going on. I wish you the best of luck.

I will echo others here and say that the ipi/nivo combo seems to be the logical next step.

As a young person who seems to be in otherwise good health, I think that TIL treatment and even Interleukin 2 (IL-2) are possible considerations if the combo doesn't prove effective.

It does sound like it's probably time to switch up the treatment plan, based on your description of what's going on. I wish you the best of luck.

Hi Kerri, with Immunotherapy drugs stable is good and if your oncologist feel that your son is progressing on Keytruda then the idea of the combination of Ipi and Nivo would be an excellent choice. The % of people that this combination is working for is by far the best, however the side effects must be closely watched. About 50% of the people who start the combination have to stop due to toxicity, yet many continue to respond even off treatment. Celeste(Bubbles) has the links on her blog to all the current data from the combination and other promising trials of different  Immunotherapy drugs and combination. Best wishes!!! Ed

Hi Kerri, with Immunotherapy drugs stable is good and if your oncologist feel that your son is progressing on Keytruda then the idea of the combination of Ipi and Nivo would be an excellent choice. The % of people that this combination is working for is by far the best, however the side effects must be closely watched. About 50% of the people who start the combination have to stop due to toxicity, yet many continue to respond even off treatment. Celeste(Bubbles) has the links on her blog to all the current data from the combination and other promising trials of different  Immunotherapy drugs and combination. Best wishes!!! Ed

Hi Kerri, with Immunotherapy drugs stable is good and if your oncologist feel that your son is progressing on Keytruda then the idea of the combination of Ipi and Nivo would be an excellent choice. The % of people that this combination is working for is by far the best, however the side effects must be closely watched. About 50% of the people who start the combination have to stop due to toxicity, yet many continue to respond even off treatment. Celeste(Bubbles) has the links on her blog to all the current data from the combination and other promising trials of different  Immunotherapy drugs and combination. Best wishes!!! Ed

Hi Kerri! I don't have much knowledge but I am so glad to see u post on here. I always look forward to seeing updates about Jake. I was diagnosed stage 3A last year and just finished up 4 infusions of Ipi and I didn't exp many side effects at all. You really just don't know from person to person how they will react. Sending prayers always for your family!! 

Misty 

Hi Kerri! I don't have much knowledge but I am so glad to see u post on here. I always look forward to seeing updates about Jake. I was diagnosed stage 3A last year and just finished up 4 infusions of Ipi and I didn't exp many side effects at all. You really just don't know from person to person how they will react. Sending prayers always for your family!! 

Misty 

Hi Kerri! I don't have much knowledge but I am so glad to see u post on here. I always look forward to seeing updates about Jake. I was diagnosed stage 3A last year and just finished up 4 infusions of Ipi and I didn't exp many side effects at all. You really just don't know from person to person how they will react. Sending prayers always for your family!! 

Misty