At what point does Yervoy not work?

Thank you, Chau, will do.  Here's hoping the best for your dad, and you. In my opinion, the waits between treatments and scans are the worst for me. I am a "fix it" kind of person, but I have had to become more patient!

Take care,

Cristy

Thank you, Chau, will do.  Here's hoping the best for your dad, and you. In my opinion, the waits between treatments and scans are the worst for me. I am a "fix it" kind of person, but I have had to become more patient!

Take care,

Cristy

Thank you, Chau, will do.  Here's hoping the best for your dad, and you. In my opinion, the waits between treatments and scans are the worst for me. I am a "fix it" kind of person, but I have had to become more patient!

Take care,

Cristy

I just watched the video again from dr. Wolchuk on ipi. A patient with lungs mets had new tumours and bigger ones in his liver, but he felt great. Weeks later, there was a big change in the scans and everything starting to shrink.

As Charlie said, it’s normal at times for some people to get worse before they get better. Your DAd’s dr should keep an open mind until they know for sure it’s not working.

Did you mention before that your dad’s ALC dropped?

Lisa

I just watched the video again from dr. Wolchuk on ipi. A patient with lungs mets had new tumours and bigger ones in his liver, but he felt great. Weeks later, there was a big change in the scans and everything starting to shrink.

As Charlie said, it’s normal at times for some people to get worse before they get better. Your DAd’s dr should keep an open mind until they know for sure it’s not working.

Did you mention before that your dad’s ALC dropped?

Lisa

I just watched the video again from dr. Wolchuk on ipi. A patient with lungs mets had new tumours and bigger ones in his liver, but he felt great. Weeks later, there was a big change in the scans and everything starting to shrink.

As Charlie said, it’s normal at times for some people to get worse before they get better. Your DAd’s dr should keep an open mind until they know for sure it’s not working.

Did you mention before that your dad’s ALC dropped?

Lisa

Hi Chau,

First of all, I wish your Dad best wishes for his next scan.  Until the treatment is over and the scans are done at about 16 and 20 weeks, you won't know for sure.  The important thing is to have the ALC above 1.00, so your Dad's is still above the norm. Keep hanging in there.

I think after the 20th or 24th week scan, you should know for sure. However, Terra's husband was told he didn't respond in September and I think it was late October, when it started happening for him. He was a late responder.  I think because this drug is still fairly new, that Dr;s don't even know for sure what's going to happen.  Have a plan b and c in place as this is what most people do.

I unfortuntely grew 2 brain mets while on Yervoy which was shocking to them since I had great success in my lungs and received no other new tumours.  ipi could have been making 1 of them a bit bigger or I had more before – they just don't know for sure. I had gamma knife done and always remain hopeful.  It's very normal for people to grow new tumours while on Yervoy – that's because Yervoy takes about 3 months to work, so it's easy for new tumours to grow in the meantime. Once the immune system has kicked in, you just hope that it flows through the body and targets tumours to shrink and helps eliminate micromets for awhile. Some people are very lucky to be put in a remission with ipi. Yes, it's not many at all – but some have.

Again, figure out your Plan B & C, and don't give up hope on this drug until you absolutely have to,

Lisa

Hi Chau,

First of all, I wish your Dad best wishes for his next scan.  Until the treatment is over and the scans are done at about 16 and 20 weeks, you won't know for sure.  The important thing is to have the ALC above 1.00, so your Dad's is still above the norm. Keep hanging in there.

I think after the 20th or 24th week scan, you should know for sure. However, Terra's husband was told he didn't respond in September and I think it was late October, when it started happening for him. He was a late responder.  I think because this drug is still fairly new, that Dr;s don't even know for sure what's going to happen.  Have a plan b and c in place as this is what most people do.

I unfortuntely grew 2 brain mets while on Yervoy which was shocking to them since I had great success in my lungs and received no other new tumours.  ipi could have been making 1 of them a bit bigger or I had more before – they just don't know for sure. I had gamma knife done and always remain hopeful.  It's very normal for people to grow new tumours while on Yervoy – that's because Yervoy takes about 3 months to work, so it's easy for new tumours to grow in the meantime. Once the immune system has kicked in, you just hope that it flows through the body and targets tumours to shrink and helps eliminate micromets for awhile. Some people are very lucky to be put in a remission with ipi. Yes, it's not many at all – but some have.

Again, figure out your Plan B & C, and don't give up hope on this drug until you absolutely have to,

Lisa

Hi Chau,

First of all, I wish your Dad best wishes for his next scan.  Until the treatment is over and the scans are done at about 16 and 20 weeks, you won't know for sure.  The important thing is to have the ALC above 1.00, so your Dad's is still above the norm. Keep hanging in there.

I think after the 20th or 24th week scan, you should know for sure. However, Terra's husband was told he didn't respond in September and I think it was late October, when it started happening for him. He was a late responder.  I think because this drug is still fairly new, that Dr;s don't even know for sure what's going to happen.  Have a plan b and c in place as this is what most people do.

I unfortuntely grew 2 brain mets while on Yervoy which was shocking to them since I had great success in my lungs and received no other new tumours.  ipi could have been making 1 of them a bit bigger or I had more before – they just don't know for sure. I had gamma knife done and always remain hopeful.  It's very normal for people to grow new tumours while on Yervoy – that's because Yervoy takes about 3 months to work, so it's easy for new tumours to grow in the meantime. Once the immune system has kicked in, you just hope that it flows through the body and targets tumours to shrink and helps eliminate micromets for awhile. Some people are very lucky to be put in a remission with ipi. Yes, it's not many at all – but some have.

Again, figure out your Plan B & C, and don't give up hope on this drug until you absolutely have to,

Lisa

Hey there Chau, I wanted to expand on my previous post to you.  When people are a bit impatient about treatments, in particular new ones, I may come across as a bit harsh, which is not my intent, but it always seems important to inject some hard realities about expectations, and that was my intent.

There is NO way I would ever question the approach your father has chosen, only to try and temper your expectations.  My good pal Jerry from Cape Cod (whom I posted an update about today)has been a Yervoy………what was .then Ipilimumab,  poster boy for well over two years when he entered the IPI brain mets trial

Progress has been slow, response was slow, complications were many,  but he DID improve, but only because he believed in ipi, his doctors believed in ipi, they stayed on top of any problems that arose and always, always, always continued to work the problem.  And it took time and it has been a process.

It is troubling to me, and leads me to question why the doctor attending your father has such a pessimistic viewpoint of the ability of Yervoy to work in such a short period of time.

.  The clinical trials showed it, since approval, patient experience has showed it, that if Yervoy is going to work, it will not happen in days or weeks, but may well take four to six months and will probably get worse before there is a measurable immune response.

No question of  your choices from me.  In fairness though, the doctor is not being realistic and is doing your father and your family a disservice to expect instant results.. …he should be encouraging you, based upon the science, that Yervoy is going to take time and not be so dismissive about the ability for the treatment to work.

If I may role play a moment, if I were in the doctors office ……………"Doctor, you have just given my father the third administration of Yervoy, and you appear to have no real patience or faith that it will be beneficial and I do not understand why you feel that way. So please tell me."

"Doctor, It has been clearly shown in clinical trials that this drug does not work fast and can take weeks or months for the desired result. and I am confused why on the third month you appear to have no belief it will work for my father.  Is there some other treatment you feel may be more effective?  If that is true, why did you not say so before embarking on this path? "

" We, as a family are confused that you, as his doctor , seem unconvinced this is the best way forward.  Exactly why do you feel this way, because frankly, doctor, if you do not believe the treatment may be beneficial, we are compelled to ask why you prescribed it in the first place"

End of role play.  But really, think about that and don't get white coat syndrome, it is the life of your father and not his doctor.  You need an explanation the doctors pessimism.  And I would plant my feet in his office and not budge until given an explanation.

Cheers,

Charlie S

Thanks for posting about Jerry. He’s done so well on ipi and it took a long time for his lung and brain mets to disappear. From what i recall, it was longer than 100 days!

Even though he’s going through some rough challenges right now, I hope I can be as lucky as him for at least 2 years.

Believe it or not, with the crap that you’ve been through after being diagnosed years ago, you’re a huge hero to me as well.

Lisa

Thanks for posting about Jerry. He’s done so well on ipi and it took a long time for his lung and brain mets to disappear. From what i recall, it was longer than 100 days!

Even though he’s going through some rough challenges right now, I hope I can be as lucky as him for at least 2 years.

Believe it or not, with the crap that you’ve been through after being diagnosed years ago, you’re a huge hero to me as well.

Lisa

Thanks for posting about Jerry. He’s done so well on ipi and it took a long time for his lung and brain mets to disappear. From what i recall, it was longer than 100 days!

Even though he’s going through some rough challenges right now, I hope I can be as lucky as him for at least 2 years.

Believe it or not, with the crap that you’ve been through after being diagnosed years ago, you’re a huge hero to me as well.

Lisa

Hey there Chau, I wanted to expand on my previous post to you.  When people are a bit impatient about treatments, in particular new ones, I may come across as a bit harsh, which is not my intent, but it always seems important to inject some hard realities about expectations, and that was my intent.

There is NO way I would ever question the approach your father has chosen, only to try and temper your expectations.  My good pal Jerry from Cape Cod (whom I posted an update about today)has been a Yervoy………what was .then Ipilimumab,  poster boy for well over two years when he entered the IPI brain mets trial

Progress has been slow, response was slow, complications were many,  but he DID improve, but only because he believed in ipi, his doctors believed in ipi, they stayed on top of any problems that arose and always, always, always continued to work the problem.  And it took time and it has been a process.

It is troubling to me, and leads me to question why the doctor attending your father has such a pessimistic viewpoint of the ability of Yervoy to work in such a short period of time.

.  The clinical trials showed it, since approval, patient experience has showed it, that if Yervoy is going to work, it will not happen in days or weeks, but may well take four to six months and will probably get worse before there is a measurable immune response.

No question of  your choices from me.  In fairness though, the doctor is not being realistic and is doing your father and your family a disservice to expect instant results.. …he should be encouraging you, based upon the science, that Yervoy is going to take time and not be so dismissive about the ability for the treatment to work.

If I may role play a moment, if I were in the doctors office ……………"Doctor, you have just given my father the third administration of Yervoy, and you appear to have no real patience or faith that it will be beneficial and I do not understand why you feel that way. So please tell me."

"Doctor, It has been clearly shown in clinical trials that this drug does not work fast and can take weeks or months for the desired result. and I am confused why on the third month you appear to have no belief it will work for my father.  Is there some other treatment you feel may be more effective?  If that is true, why did you not say so before embarking on this path? "

" We, as a family are confused that you, as his doctor , seem unconvinced this is the best way forward.  Exactly why do you feel this way, because frankly, doctor, if you do not believe the treatment may be beneficial, we are compelled to ask why you prescribed it in the first place"

End of role play.  But really, think about that and don't get white coat syndrome, it is the life of your father and not his doctor.  You need an explanation the doctors pessimism.  And I would plant my feet in his office and not budge until given an explanation.

Cheers,

Charlie S

Hey there Chau, I wanted to expand on my previous post to you.  When people are a bit impatient about treatments, in particular new ones, I may come across as a bit harsh, which is not my intent, but it always seems important to inject some hard realities about expectations, and that was my intent.

There is NO way I would ever question the approach your father has chosen, only to try and temper your expectations.  My good pal Jerry from Cape Cod (whom I posted an update about today)has been a Yervoy………what was .then Ipilimumab,  poster boy for well over two years when he entered the IPI brain mets trial

Progress has been slow, response was slow, complications were many,  but he DID improve, but only because he believed in ipi, his doctors believed in ipi, they stayed on top of any problems that arose and always, always, always continued to work the problem.  And it took time and it has been a process.

It is troubling to me, and leads me to question why the doctor attending your father has such a pessimistic viewpoint of the ability of Yervoy to work in such a short period of time.

.  The clinical trials showed it, since approval, patient experience has showed it, that if Yervoy is going to work, it will not happen in days or weeks, but may well take four to six months and will probably get worse before there is a measurable immune response.

No question of  your choices from me.  In fairness though, the doctor is not being realistic and is doing your father and your family a disservice to expect instant results.. …he should be encouraging you, based upon the science, that Yervoy is going to take time and not be so dismissive about the ability for the treatment to work.

If I may role play a moment, if I were in the doctors office ……………"Doctor, you have just given my father the third administration of Yervoy, and you appear to have no real patience or faith that it will be beneficial and I do not understand why you feel that way. So please tell me."

"Doctor, It has been clearly shown in clinical trials that this drug does not work fast and can take weeks or months for the desired result. and I am confused why on the third month you appear to have no belief it will work for my father.  Is there some other treatment you feel may be more effective?  If that is true, why did you not say so before embarking on this path? "

" We, as a family are confused that you, as his doctor , seem unconvinced this is the best way forward.  Exactly why do you feel this way, because frankly, doctor, if you do not believe the treatment may be beneficial, we are compelled to ask why you prescribed it in the first place"

End of role play.  But really, think about that and don't get white coat syndrome, it is the life of your father and not his doctor.  You need an explanation the doctors pessimism.  And I would plant my feet in his office and not budge until given an explanation.

Cheers,

Charlie S