stage 3C – Adjuvant ipilimulab Maintenance Phase Trial

Yes!  Ipi is notoriously slow and notorious for allowing things to get worse before getting better.  And this makes it tough to know if it's working.    I am (so far) a complete responder, but it took 5 months for me to see it working.  I was just to the point of jumping over to an off label anti-PD1 drug, when my dr and I waited one more month of another round of scans.   I'm glad I did.

This said, Ipi unfortunately doesn't work for everyone, so continue to work closely with the trial drs and nurses.  If I understand the way trials work, I think if he progresses on the trial, they will unbind him and allow him to pursue other treatments.  So work well with the trial folks and see what they are saying, too.

Praying that Ipi completely kicks Mel to the curb for your son!

Julie

Stage 3c: WLE, SNB, LDN, HD-INF, GM-CSF, IPI.

Yes!  Ipi is notoriously slow and notorious for allowing things to get worse before getting better.  And this makes it tough to know if it's working.    I am (so far) a complete responder, but it took 5 months for me to see it working.  I was just to the point of jumping over to an off label anti-PD1 drug, when my dr and I waited one more month of another round of scans.   I'm glad I did.

This said, Ipi unfortunately doesn't work for everyone, so continue to work closely with the trial drs and nurses.  If I understand the way trials work, I think if he progresses on the trial, they will unbind him and allow him to pursue other treatments.  So work well with the trial folks and see what they are saying, too.

Praying that Ipi completely kicks Mel to the curb for your son!

Julie

Stage 3c: WLE, SNB, LDN, HD-INF, GM-CSF, IPI.

Yes!  Ipi is notoriously slow and notorious for allowing things to get worse before getting better.  And this makes it tough to know if it's working.    I am (so far) a complete responder, but it took 5 months for me to see it working.  I was just to the point of jumping over to an off label anti-PD1 drug, when my dr and I waited one more month of another round of scans.   I'm glad I did.

This said, Ipi unfortunately doesn't work for everyone, so continue to work closely with the trial drs and nurses.  If I understand the way trials work, I think if he progresses on the trial, they will unbind him and allow him to pursue other treatments.  So work well with the trial folks and see what they are saying, too.

Praying that Ipi completely kicks Mel to the curb for your son!

Julie

Stage 3c: WLE, SNB, LDN, HD-INF, GM-CSF, IPI.

My understanding on Ipi is that it takes time if it is going to work. You also have to remember that it works for about 20% of the people who get it. The new immunotherapy drugs called Pd-1 have a higher response rate in the 30% range and even higher if taken together with Ipi, in clinical trials reported at the last two ASCO meetings. How often is he having Ct scans of the major organs? What are the trials that you are thinking about as an option? Have you looked into the new adoptive t-cell therapy at Princess Margaret Cancer centre in Toronto? I have found that with Melanoma waiting for things to happen is the hardest part. Best of luck!!! Ed

My understanding on Ipi is that it takes time if it is going to work. You also have to remember that it works for about 20% of the people who get it. The new immunotherapy drugs called Pd-1 have a higher response rate in the 30% range and even higher if taken together with Ipi, in clinical trials reported at the last two ASCO meetings. How often is he having Ct scans of the major organs? What are the trials that you are thinking about as an option? Have you looked into the new adoptive t-cell therapy at Princess Margaret Cancer centre in Toronto? I have found that with Melanoma waiting for things to happen is the hardest part. Best of luck!!! Ed

My understanding on Ipi is that it takes time if it is going to work. You also have to remember that it works for about 20% of the people who get it. The new immunotherapy drugs called Pd-1 have a higher response rate in the 30% range and even higher if taken together with Ipi, in clinical trials reported at the last two ASCO meetings. How often is he having Ct scans of the major organs? What are the trials that you are thinking about as an option? Have you looked into the new adoptive t-cell therapy at Princess Margaret Cancer centre in Toronto? I have found that with Melanoma waiting for things to happen is the hardest part. Best of luck!!! Ed

I finished Yervoy Aug 13 had scans in Sept and the spots in my lungs were gone and the lymph node in my neck reduced almost in half..I will have my next scan in Dec to see if it's continuing to work, was no mention of surgery or radiation for me..Yervoy is slow acting for we are hoping by the next scan it will all be gone…Just a little fatigue as side effects..Good luck

I finished Yervoy Aug 13 had scans in Sept and the spots in my lungs were gone and the lymph node in my neck reduced almost in half..I will have my next scan in Dec to see if it's continuing to work, was no mention of surgery or radiation for me..Yervoy is slow acting for we are hoping by the next scan it will all be gone…Just a little fatigue as side effects..Good luck

I finished Yervoy Aug 13 had scans in Sept and the spots in my lungs were gone and the lymph node in my neck reduced almost in half..I will have my next scan in Dec to see if it's continuing to work, was no mention of surgery or radiation for me..Yervoy is slow acting for we are hoping by the next scan it will all be gone…Just a little fatigue as side effects..Good luck

M,

It is pretty universally accepted…now…that we have to give immunotherapies TIME!!!….therefore, these articles are a little bit older…but here are some quotes (even though most of these are not addressing the use of ipi as an adjuvant, the principle still applies) that might help reassure you and your son.  You can use the bubble to the top left of my blog to search for the whole piece or other info. 

Novel treatments for Melanoma Brain Mets.  October 2013.  Cancer Control.

"…Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur."

Ipilmumab in Advanced Melanoma April 2012. Pub Med.

"Biggest news here….is trying to get a new evaluation system accepted since ipi works slowly and patients may demonstrate some "progression" and even new lesions initially, that diminish in time.  Meaning….docs and research institutions and those that fund such things…should not stop ipi because of that initial finding.  GIVE IT TIME!!!!"

Those are just two quotes that address your issue that I could quickly lay my hands on.  I wish your son great success.  Hang in there.  Celeste

M,

It is pretty universally accepted…now…that we have to give immunotherapies TIME!!!….therefore, these articles are a little bit older…but here are some quotes (even though most of these are not addressing the use of ipi as an adjuvant, the principle still applies) that might help reassure you and your son.  You can use the bubble to the top left of my blog to search for the whole piece or other info. 

Novel treatments for Melanoma Brain Mets.  October 2013.  Cancer Control.

"…Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur."

Ipilmumab in Advanced Melanoma April 2012. Pub Med.

"Biggest news here….is trying to get a new evaluation system accepted since ipi works slowly and patients may demonstrate some "progression" and even new lesions initially, that diminish in time.  Meaning….docs and research institutions and those that fund such things…should not stop ipi because of that initial finding.  GIVE IT TIME!!!!"

Those are just two quotes that address your issue that I could quickly lay my hands on.  I wish your son great success.  Hang in there.  Celeste

M,

It is pretty universally accepted…now…that we have to give immunotherapies TIME!!!….therefore, these articles are a little bit older…but here are some quotes (even though most of these are not addressing the use of ipi as an adjuvant, the principle still applies) that might help reassure you and your son.  You can use the bubble to the top left of my blog to search for the whole piece or other info. 

Novel treatments for Melanoma Brain Mets.  October 2013.  Cancer Control.

"…Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur."

Ipilmumab in Advanced Melanoma April 2012. Pub Med.

"Biggest news here….is trying to get a new evaluation system accepted since ipi works slowly and patients may demonstrate some "progression" and even new lesions initially, that diminish in time.  Meaning….docs and research institutions and those that fund such things…should not stop ipi because of that initial finding.  GIVE IT TIME!!!!"

Those are just two quotes that address your issue that I could quickly lay my hands on.  I wish your son great success.  Hang in there.  Celeste