Stage IIIA patients doing yervoy vs watch and wait.

Hi, sorry your son has to go through this. I am 29, stage 3b, and doing Yervoy. I chose Yervoy over watch and wait for myself due to knowing that I need to feel like I am physically doing something, plus, I am young and healthy so if any side effects came up I'd be able to take care of them quickly. I have done 3 rounds of treatment so far, and the only side effect I have experienced is fatigue. No one knows how a drug will react with their body until they try it, and I am definitely very glad I have been able to get this far with no major side effects at all. 

It is a very personal decision. Whatever decision he is most comfortable with will be the best decision for him. 

I hope all the best for your son.

-Jenn

Hi, sorry your son has to go through this. I am 29, stage 3b, and doing Yervoy. I chose Yervoy over watch and wait for myself due to knowing that I need to feel like I am physically doing something, plus, I am young and healthy so if any side effects came up I'd be able to take care of them quickly. I have done 3 rounds of treatment so far, and the only side effect I have experienced is fatigue. No one knows how a drug will react with their body until they try it, and I am definitely very glad I have been able to get this far with no major side effects at all. 

It is a very personal decision. Whatever decision he is most comfortable with will be the best decision for him. 

I hope all the best for your son.

-Jenn

Hi, sorry your son has to go through this. I am 29, stage 3b, and doing Yervoy. I chose Yervoy over watch and wait for myself due to knowing that I need to feel like I am physically doing something, plus, I am young and healthy so if any side effects came up I'd be able to take care of them quickly. I have done 3 rounds of treatment so far, and the only side effect I have experienced is fatigue. No one knows how a drug will react with their body until they try it, and I am definitely very glad I have been able to get this far with no major side effects at all. 

It is a very personal decision. Whatever decision he is most comfortable with will be the best decision for him. 

I hope all the best for your son.

-Jenn

Hi Mybelle,

I started out in almost the same place as your son just under 2 years ago.  At that time I was offered interferon, clinical trial, or watch and wait.  I was not accepted for the trial so I chose the watch and wait.  I did change my diet and exercise (walk 3.5 miles) 6 days a week.  So far so good.  I have a CT scan and blood work next week and meet with my oncologist the following week.  Tough choice but I am sure he will make the right one for him.

Take care,

Ken

Hi Mybelle,

I started out in almost the same place as your son just under 2 years ago.  At that time I was offered interferon, clinical trial, or watch and wait.  I was not accepted for the trial so I chose the watch and wait.  I did change my diet and exercise (walk 3.5 miles) 6 days a week.  So far so good.  I have a CT scan and blood work next week and meet with my oncologist the following week.  Tough choice but I am sure he will make the right one for him.

Take care,

Ken

Hi Mybelle,

I started out in almost the same place as your son just under 2 years ago.  At that time I was offered interferon, clinical trial, or watch and wait.  I was not accepted for the trial so I chose the watch and wait.  I did change my diet and exercise (walk 3.5 miles) 6 days a week.  So far so good.  I have a CT scan and blood work next week and meet with my oncologist the following week.  Tough choice but I am sure he will make the right one for him.

Take care,

Ken

Mybelle, if you haven't already read the EORTC trial 18071 findings on Ipilimumab they might be helpfull in making a decision. Just Google Ipilimumab and EORTC and Prof Alexander M M Eggermont of the Gustave Roussy Cancer Campus. It is a very big decision to make especially with the risk of grade 3 or 4 adverse advents being so high. The two approved Pd-1 drugs are already starting to show up in small adjuvant trials and have a much lower rate of grade 3-4 reactions. While waiting and watching is still considered the standard of care for 3A, it is very hard to do when faced with possible progression. Which ever direction your son choose to go he should know that the advancement in Melanoma research are trully amazing during the last 3 to 4 years. If you choose to wait make sure that you are being followed by a good Oncologist that is willing to scan on a regular basis to check for progression. Wishing you the best in your journey!!!!! Ed

Mybelle, if you haven't already read the EORTC trial 18071 findings on Ipilimumab they might be helpfull in making a decision. Just Google Ipilimumab and EORTC and Prof Alexander M M Eggermont of the Gustave Roussy Cancer Campus. It is a very big decision to make especially with the risk of grade 3 or 4 adverse advents being so high. The two approved Pd-1 drugs are already starting to show up in small adjuvant trials and have a much lower rate of grade 3-4 reactions. While waiting and watching is still considered the standard of care for 3A, it is very hard to do when faced with possible progression. Which ever direction your son choose to go he should know that the advancement in Melanoma research are trully amazing during the last 3 to 4 years. If you choose to wait make sure that you are being followed by a good Oncologist that is willing to scan on a regular basis to check for progression. Wishing you the best in your journey!!!!! Ed

Mybelle, if you haven't already read the EORTC trial 18071 findings on Ipilimumab they might be helpfull in making a decision. Just Google Ipilimumab and EORTC and Prof Alexander M M Eggermont of the Gustave Roussy Cancer Campus. It is a very big decision to make especially with the risk of grade 3 or 4 adverse advents being so high. The two approved Pd-1 drugs are already starting to show up in small adjuvant trials and have a much lower rate of grade 3-4 reactions. While waiting and watching is still considered the standard of care for 3A, it is very hard to do when faced with possible progression. Which ever direction your son choose to go he should know that the advancement in Melanoma research are trully amazing during the last 3 to 4 years. If you choose to wait make sure that you are being followed by a good Oncologist that is willing to scan on a regular basis to check for progression. Wishing you the best in your journey!!!!! Ed

Hi – I am also taking ipi for stage 3A. I started in December and will be going for my 3rd dose Monday. I am only taking the 3mg dosage though and not the 10mg. So far I've really only experienced fatigue and it's mostly during the first week. I have had a few episodes of diarrhea but nothing too bad. Could have even been something I ate it was so minimal. I work full time and have a 6 year old and 18 month old so life is pretty tiresome anyways. 🙂  I have read people have no side effects, minimal to horrific so it's really just depends on how it effects that person. Best wishes in making a decision. I know how difficult it was for me and I'm sure y'all are in the same boat. 

 

Misty 

Hi – I am also taking ipi for stage 3A. I started in December and will be going for my 3rd dose Monday. I am only taking the 3mg dosage though and not the 10mg. So far I've really only experienced fatigue and it's mostly during the first week. I have had a few episodes of diarrhea but nothing too bad. Could have even been something I ate it was so minimal. I work full time and have a 6 year old and 18 month old so life is pretty tiresome anyways. 🙂  I have read people have no side effects, minimal to horrific so it's really just depends on how it effects that person. Best wishes in making a decision. I know how difficult it was for me and I'm sure y'all are in the same boat. 

 

Misty 

Hi – I am also taking ipi for stage 3A. I started in December and will be going for my 3rd dose Monday. I am only taking the 3mg dosage though and not the 10mg. So far I've really only experienced fatigue and it's mostly during the first week. I have had a few episodes of diarrhea but nothing too bad. Could have even been something I ate it was so minimal. I work full time and have a 6 year old and 18 month old so life is pretty tiresome anyways. 🙂  I have read people have no side effects, minimal to horrific so it's really just depends on how it effects that person. Best wishes in making a decision. I know how difficult it was for me and I'm sure y'all are in the same boat. 

 

Misty 

If he decides to go the natural route, with no medication, I would get him on a curcumin supplement as well as co q10. Reishi mushroom is also beneficial. 14 years ago my mother had stage 3 triple negative breast cancer with 7 nodes involved. She went through with the chemo but also changed her diet and I had her on a bunch of different supplements including these. I firmly believe this is at least partially why she is well today and never had a recurrence. My dad is currently on these supplements as well. Also matcha green tea is excellent! I am kind of a combination alternative and conventional medicine type person. I believe for the best results both might be needed. Oh, & a good probiotics is important as well as high dose of vitamin D. I have found the Biotics brand vitamin D works the best. Let us know what he decides to do.

If he decides to go the natural route, with no medication, I would get him on a curcumin supplement as well as co q10. Reishi mushroom is also beneficial. 14 years ago my mother had stage 3 triple negative breast cancer with 7 nodes involved. She went through with the chemo but also changed her diet and I had her on a bunch of different supplements including these. I firmly believe this is at least partially why she is well today and never had a recurrence. My dad is currently on these supplements as well. Also matcha green tea is excellent! I am kind of a combination alternative and conventional medicine type person. I believe for the best results both might be needed. Oh, & a good probiotics is important as well as high dose of vitamin D. I have found the Biotics brand vitamin D works the best. Let us know what he decides to do.

If he decides to go the natural route, with no medication, I would get him on a curcumin supplement as well as co q10. Reishi mushroom is also beneficial. 14 years ago my mother had stage 3 triple negative breast cancer with 7 nodes involved. She went through with the chemo but also changed her diet and I had her on a bunch of different supplements including these. I firmly believe this is at least partially why she is well today and never had a recurrence. My dad is currently on these supplements as well. Also matcha green tea is excellent! I am kind of a combination alternative and conventional medicine type person. I believe for the best results both might be needed. Oh, & a good probiotics is important as well as high dose of vitamin D. I have found the Biotics brand vitamin D works the best. Let us know what he decides to do.

I'm sorry you've had to find yourself here, mybelle.  It's a good group with lots of different experiences and opinions with the same disease so you'll get a good variety for making a decision.  First, I want to emphasize that there is no right or wrong decision.  Your son needs to do what feels right for him and then hope for the best because nothing is guaranteed.  When it comes to Yervoy, your son will either be a responder or he won't be.  There is no way to know which in advance.  If he is a responder to Yervoy, he will also be a responder later IF he advances to stage IV.  If he is not a responder, then it won't make a difference now or later.  

For what it's worth, I believe living a healthy lifestyle IS "doing something".  Our immune system is our number one defense against cancer.  Cancer cannot exist in an environment where our immune system is functioning perfectly.  Even Yervoy, when it works, is using the immune system.

There is a lot of conflicting information out there on what constitutes a "healthy" diet.  My own doctor believes it is not one-size-fits-all but rather that some of us are meat-eaters, some of us more vegetarian and some of us are both.  Wherever you fall on the spectrum, find the cleanest most natural versions of that food as possible (no hormones, antibiotics, pesticides, etc.).  And if you eat animals, make sure those animals ate what they are designed to eat (I.e., cows eat grass, not grains, chickens eat grass, seeds and insects, not corn).  No sugar, flour or processed foods.  There's a lot of junk in our food supply unfortunately.  But also lots of farmers' markets and on-line resources.

I wish you and your son well.  Best of luck making this difficult choice.

Maggie

I'm sorry you've had to find yourself here, mybelle.  It's a good group with lots of different experiences and opinions with the same disease so you'll get a good variety for making a decision.  First, I want to emphasize that there is no right or wrong decision.  Your son needs to do what feels right for him and then hope for the best because nothing is guaranteed.  When it comes to Yervoy, your son will either be a responder or he won't be.  There is no way to know which in advance.  If he is a responder to Yervoy, he will also be a responder later IF he advances to stage IV.  If he is not a responder, then it won't make a difference now or later.  

For what it's worth, I believe living a healthy lifestyle IS "doing something".  Our immune system is our number one defense against cancer.  Cancer cannot exist in an environment where our immune system is functioning perfectly.  Even Yervoy, when it works, is using the immune system.

There is a lot of conflicting information out there on what constitutes a "healthy" diet.  My own doctor believes it is not one-size-fits-all but rather that some of us are meat-eaters, some of us more vegetarian and some of us are both.  Wherever you fall on the spectrum, find the cleanest most natural versions of that food as possible (no hormones, antibiotics, pesticides, etc.).  And if you eat animals, make sure those animals ate what they are designed to eat (I.e., cows eat grass, not grains, chickens eat grass, seeds and insects, not corn).  No sugar, flour or processed foods.  There's a lot of junk in our food supply unfortunately.  But also lots of farmers' markets and on-line resources.

I wish you and your son well.  Best of luck making this difficult choice.

Maggie

I'm sorry you've had to find yourself here, mybelle.  It's a good group with lots of different experiences and opinions with the same disease so you'll get a good variety for making a decision.  First, I want to emphasize that there is no right or wrong decision.  Your son needs to do what feels right for him and then hope for the best because nothing is guaranteed.  When it comes to Yervoy, your son will either be a responder or he won't be.  There is no way to know which in advance.  If he is a responder to Yervoy, he will also be a responder later IF he advances to stage IV.  If he is not a responder, then it won't make a difference now or later.  

For what it's worth, I believe living a healthy lifestyle IS "doing something".  Our immune system is our number one defense against cancer.  Cancer cannot exist in an environment where our immune system is functioning perfectly.  Even Yervoy, when it works, is using the immune system.

There is a lot of conflicting information out there on what constitutes a "healthy" diet.  My own doctor believes it is not one-size-fits-all but rather that some of us are meat-eaters, some of us more vegetarian and some of us are both.  Wherever you fall on the spectrum, find the cleanest most natural versions of that food as possible (no hormones, antibiotics, pesticides, etc.).  And if you eat animals, make sure those animals ate what they are designed to eat (I.e., cows eat grass, not grains, chickens eat grass, seeds and insects, not corn).  No sugar, flour or processed foods.  There's a lot of junk in our food supply unfortunately.  But also lots of farmers' markets and on-line resources.

I wish you and your son well.  Best of luck making this difficult choice.

Maggie