new plan for Dad

Hi Jen,

The IPI nivo combo attacks melanoma using two different pathways…IPI revs up the immune system and nivo takes away the tumours ability to hide from the immune system. Used together the side effects can be challenging should we say… But different folk get different side effects… And if your mom reads the nivo ones… They are scary too .. But your Dad coped ok.

Docs are now looking at gaining nivo and IPI sequentially, as this seems to reap benefits without qyuite as much toxicity. If your tumours express high amounts of pd1 proteins then nivo is likely to be pretty effective on its own… But if not the introducing IPI in to the mix is likely to be beneficial…which is why I was so pleased to get dose 3 of the combo yesterday .Sounds like a good plan. Majority of side effects can be treated with steroids and can be managed.

Think your dads team are looking at grabbing the benefits whulstreducing side effects… Probably 4 3 weekly doses of IPI then back to a pd1 nivo or pembro. Would be happy to run with this if it was my family..and if IPI causes too many issues then back to plan A.

Good luck.

Deb

Hugs and kisses

Hi Jen,

The IPI nivo combo attacks melanoma using two different pathways…IPI revs up the immune system and nivo takes away the tumours ability to hide from the immune system. Used together the side effects can be challenging should we say… But different folk get different side effects… And if your mom reads the nivo ones… They are scary too .. But your Dad coped ok.

Docs are now looking at gaining nivo and IPI sequentially, as this seems to reap benefits without qyuite as much toxicity. If your tumours express high amounts of pd1 proteins then nivo is likely to be pretty effective on its own… But if not the introducing IPI in to the mix is likely to be beneficial…which is why I was so pleased to get dose 3 of the combo yesterday .Sounds like a good plan. Majority of side effects can be treated with steroids and can be managed.

Think your dads team are looking at grabbing the benefits whulstreducing side effects… Probably 4 3 weekly doses of IPI then back to a pd1 nivo or pembro. Would be happy to run with this if it was my family..and if IPI causes too many issues then back to plan A.

Good luck.

Deb

Hugs and kisses

Hi Jen,

The IPI nivo combo attacks melanoma using two different pathways…IPI revs up the immune system and nivo takes away the tumours ability to hide from the immune system. Used together the side effects can be challenging should we say… But different folk get different side effects… And if your mom reads the nivo ones… They are scary too .. But your Dad coped ok.

Docs are now looking at gaining nivo and IPI sequentially, as this seems to reap benefits without qyuite as much toxicity. If your tumours express high amounts of pd1 proteins then nivo is likely to be pretty effective on its own… But if not the introducing IPI in to the mix is likely to be beneficial…which is why I was so pleased to get dose 3 of the combo yesterday .Sounds like a good plan. Majority of side effects can be treated with steroids and can be managed.

Think your dads team are looking at grabbing the benefits whulstreducing side effects… Probably 4 3 weekly doses of IPI then back to a pd1 nivo or pembro. Would be happy to run with this if it was my family..and if IPI causes too many issues then back to plan A.

Good luck.

Deb

Hugs and kisses

While my husband was not on the combo so I can't help you there, have your Mom read my husbands journey on Ipi (Yervoy) as not everyone gets the bad side effects.  Yes he did have some side effects but they were mostly minor so don't go into treatment thinking you will get the bad side effects or worse yet die.  He was on the 10mg/kg doses which he took from Mar. 2011 to Dec. 2013 and he became NED in July 2012 so he will  celebrate 5 years NED this summer.

People react to medications differently and you can have a bad reaction to anything.

Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

While my husband was not on the combo so I can't help you there, have your Mom read my husbands journey on Ipi (Yervoy) as not everyone gets the bad side effects.  Yes he did have some side effects but they were mostly minor so don't go into treatment thinking you will get the bad side effects or worse yet die.  He was on the 10mg/kg doses which he took from Mar. 2011 to Dec. 2013 and he became NED in July 2012 so he will  celebrate 5 years NED this summer.

People react to medications differently and you can have a bad reaction to anything.

Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

While my husband was not on the combo so I can't help you there, have your Mom read my husbands journey on Ipi (Yervoy) as not everyone gets the bad side effects.  Yes he did have some side effects but they were mostly minor so don't go into treatment thinking you will get the bad side effects or worse yet die.  He was on the 10mg/kg doses which he took from Mar. 2011 to Dec. 2013 and he became NED in July 2012 so he will  celebrate 5 years NED this summer.

People react to medications differently and you can have a bad reaction to anything.

Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

The fungus test will be interesting… but if the doc doesn't think it's that.. did they give an alternative thought? Metastasis? "We just don't know"? Benign nodules? I suppose I'm most curious about their next best guess, because without lab results on anything, they really can't say.

All of that aside…… I had to do Ipi and Pembro sequentially, because the combo was not an option yet… nor was Pembro or Opdivo as a single agent (outside of trials that I was ineligible for anyway). Ipi (anti CTLA-4) and the anti PD1 meds (Pembro and Obdivo) are essentially the "same", but target different pathways in the system… which is why their side effect profiles will differ. —http://journals.lww.com/amjclinicaloncology/Fulltext/2016/02000/CTLA_4_and_PD_1_Pathways__Similarities,.17.aspx —- "To prevent autoimmunity, numerous immune checkpoint pathways regulate activation of T cells at multiple steps during an immune response, a process called peripheral tolerance.1,2 Central to this process are the cytotoxic T-lymphocyte–associated antigen 4 (CTLA-4) and programmed death 1 (PD-1) immune checkpoint pathways.3 The CTLA-4 and PD-1 pathways are thought to operate at different stages of an immune response. CTLA-4 is considered the “leader” of the immune checkpoint inhibitors, as it stops potentially autoreactive T cells at the initial stage of naive T-cell activation, typically in lymph nodes.2,4 The PD-1 pathway regulates previously activated T cells at the later stages of an immune response, primarily in peripheral tissues."

I had precious little side effects from Ipi (at the lower dose). It did knock my thyroid operation down a peg, but not like Pembro did! It also (seemingly) did very little to reduce or stabilize my tumors. Pembro side effects were equally minimal until I was 29 doses deep… but reduced my tumors to nothing in very little time. It's all soooo individual. As with any disease or chronic illness, doctors are only able to make their best educated guess as how to best proceed. Dr Hamid and his crew are some of the best informed in the melanoma field. It's always going to be a frightening step forward when new drugs are introduced, but with diligent monitoring, your dad will be ok.  : )

The fungus test will be interesting… but if the doc doesn't think it's that.. did they give an alternative thought? Metastasis? "We just don't know"? Benign nodules? I suppose I'm most curious about their next best guess, because without lab results on anything, they really can't say.

All of that aside…… I had to do Ipi and Pembro sequentially, because the combo was not an option yet… nor was Pembro or Opdivo as a single agent (outside of trials that I was ineligible for anyway). Ipi (anti CTLA-4) and the anti PD1 meds (Pembro and Obdivo) are essentially the "same", but target different pathways in the system… which is why their side effect profiles will differ. —http://journals.lww.com/amjclinicaloncology/Fulltext/2016/02000/CTLA_4_and_PD_1_Pathways__Similarities,.17.aspx —- "To prevent autoimmunity, numerous immune checkpoint pathways regulate activation of T cells at multiple steps during an immune response, a process called peripheral tolerance.1,2 Central to this process are the cytotoxic T-lymphocyte–associated antigen 4 (CTLA-4) and programmed death 1 (PD-1) immune checkpoint pathways.3 The CTLA-4 and PD-1 pathways are thought to operate at different stages of an immune response. CTLA-4 is considered the “leader” of the immune checkpoint inhibitors, as it stops potentially autoreactive T cells at the initial stage of naive T-cell activation, typically in lymph nodes.2,4 The PD-1 pathway regulates previously activated T cells at the later stages of an immune response, primarily in peripheral tissues."

I had precious little side effects from Ipi (at the lower dose). It did knock my thyroid operation down a peg, but not like Pembro did! It also (seemingly) did very little to reduce or stabilize my tumors. Pembro side effects were equally minimal until I was 29 doses deep… but reduced my tumors to nothing in very little time. It's all soooo individual. As with any disease or chronic illness, doctors are only able to make their best educated guess as how to best proceed. Dr Hamid and his crew are some of the best informed in the melanoma field. It's always going to be a frightening step forward when new drugs are introduced, but with diligent monitoring, your dad will be ok.  : )

The fungus test will be interesting… but if the doc doesn't think it's that.. did they give an alternative thought? Metastasis? "We just don't know"? Benign nodules? I suppose I'm most curious about their next best guess, because without lab results on anything, they really can't say.

All of that aside…… I had to do Ipi and Pembro sequentially, because the combo was not an option yet… nor was Pembro or Opdivo as a single agent (outside of trials that I was ineligible for anyway). Ipi (anti CTLA-4) and the anti PD1 meds (Pembro and Obdivo) are essentially the "same", but target different pathways in the system… which is why their side effect profiles will differ. —http://journals.lww.com/amjclinicaloncology/Fulltext/2016/02000/CTLA_4_and_PD_1_Pathways__Similarities,.17.aspx —- "To prevent autoimmunity, numerous immune checkpoint pathways regulate activation of T cells at multiple steps during an immune response, a process called peripheral tolerance.1,2 Central to this process are the cytotoxic T-lymphocyte–associated antigen 4 (CTLA-4) and programmed death 1 (PD-1) immune checkpoint pathways.3 The CTLA-4 and PD-1 pathways are thought to operate at different stages of an immune response. CTLA-4 is considered the “leader” of the immune checkpoint inhibitors, as it stops potentially autoreactive T cells at the initial stage of naive T-cell activation, typically in lymph nodes.2,4 The PD-1 pathway regulates previously activated T cells at the later stages of an immune response, primarily in peripheral tissues."

I had precious little side effects from Ipi (at the lower dose). It did knock my thyroid operation down a peg, but not like Pembro did! It also (seemingly) did very little to reduce or stabilize my tumors. Pembro side effects were equally minimal until I was 29 doses deep… but reduced my tumors to nothing in very little time. It's all soooo individual. As with any disease or chronic illness, doctors are only able to make their best educated guess as how to best proceed. Dr Hamid and his crew are some of the best informed in the melanoma field. It's always going to be a frightening step forward when new drugs are introduced, but with diligent monitoring, your dad will be ok.  : )

Hi Jen,

Good advice you are giving Mom.  Many of us have had few, if any side-effects from ipi or PD-1, or both.  Of course some do and treat them as they occur.  What I am not clear about is whether the new addition of ipi is being added to ongoing nivo?  I hope so, as the combo has proven to be the most effective therapy to date, and further research is pointing to doing ipi after the introduction of anti PD-1 has an even better result.  Hopefully the tests to come will reveal things are improving. Best in the battle.

Gary

Hi Jen,

Good advice you are giving Mom.  Many of us have had few, if any side-effects from ipi or PD-1, or both.  Of course some do and treat them as they occur.  What I am not clear about is whether the new addition of ipi is being added to ongoing nivo?  I hope so, as the combo has proven to be the most effective therapy to date, and further research is pointing to doing ipi after the introduction of anti PD-1 has an even better result.  Hopefully the tests to come will reveal things are improving. Best in the battle.

Gary

Hi Jen,

Good advice you are giving Mom.  Many of us have had few, if any side-effects from ipi or PD-1, or both.  Of course some do and treat them as they occur.  What I am not clear about is whether the new addition of ipi is being added to ongoing nivo?  I hope so, as the combo has proven to be the most effective therapy to date, and further research is pointing to doing ipi after the introduction of anti PD-1 has an even better result.  Hopefully the tests to come will reveal things are improving. Best in the battle.

Gary

Hi Hun,

i did ippi 4 doses had itchy rash and constipation with it . Thyroid went down but came back to normal after 6 months. Glad you got a plan.

love to you all

scooby

x

Hi Hun,

i did ippi 4 doses had itchy rash and constipation with it . Thyroid went down but came back to normal after 6 months. Glad you got a plan.

love to you all

scooby

x

Hi Hun,

i did ippi 4 doses had itchy rash and constipation with it . Thyroid went down but came back to normal after 6 months. Glad you got a plan.

love to you all

scooby

x