NYTimes Articles – Immunotherapy drugs and rare side effects

Thanks for sharing Patina, I hope that your mom gets through Keytruda without coming accross any of the scarier side effects.

This is a good reminder for all of us on these drugs to remember to keep our docs in the loop right away with any new change or feeling with our bodies.

Before I started Ipi/Nivo I had an echocardiogram and an ekg baseline of my heart and will get those periodically through my treatment, much like I would get PET/CT scans, in order to be very on top of my heart due to the immune reaction that can happen. I hope others have the same thoroughness with their oncs as I do with mine. This should start to become the norm now, at least I am sure it will be with mel specialists.

Thanks for sharing Patina, I hope that your mom gets through Keytruda without coming accross any of the scarier side effects.

This is a good reminder for all of us on these drugs to remember to keep our docs in the loop right away with any new change or feeling with our bodies.

Before I started Ipi/Nivo I had an echocardiogram and an ekg baseline of my heart and will get those periodically through my treatment, much like I would get PET/CT scans, in order to be very on top of my heart due to the immune reaction that can happen. I hope others have the same thoroughness with their oncs as I do with mine. This should start to become the norm now, at least I am sure it will be with mel specialists.

Thanks for sharing Patina, I hope that your mom gets through Keytruda without coming accross any of the scarier side effects.

This is a good reminder for all of us on these drugs to remember to keep our docs in the loop right away with any new change or feeling with our bodies.

Before I started Ipi/Nivo I had an echocardiogram and an ekg baseline of my heart and will get those periodically through my treatment, much like I would get PET/CT scans, in order to be very on top of my heart due to the immune reaction that can happen. I hope others have the same thoroughness with their oncs as I do with mine. This should start to become the norm now, at least I am sure it will be with mel specialists.

Ipi trashed my thyroid pretty immediately, and did little to contol or stabilize my tumors. Once Keytruda was FDA approved (Oct/Nov 2014), I started on that. I was trouble free, with the exception of some minor digestive issues. I made it through 29 rounds of Keytruda before I began experiencing autoimmune side effects. My routine CT showed developing pancreatitis, so my oncologist and I decided to "pause" infusions. The pancreatitis cleared on its own, but I began to develop inflammatory arthritis problems. I am currently working with a rheumatologist to help with these late onset side effects, and my "pause" in Keytruda has become more of a permanent discontinuation… unless I were to develop new metastasis. 

This NY Times article is a good reminder that anyone on immunotherapy treatments should keep tight watch over their body and the general sense of "wellness". Additionally…. With these drugs being so new to general use, doctors are definitely seeing more patients with autoimmune issues. Because many ER doctors and/or general oncologists will not be at all familiar with the potential side effects of these immunotherapies, any patient on them should carry some form of medical treatment history, along with their oncologist's contact information. Personally, I wear an "interactive RoadID". It allows me to update current medications, medical history, a list of doctors and their contact info, as well as allergies and much more… all on a secure profile online! I do not work for the company, and I know that there are likely others around that offer the same sort of "medical emergency bracelet", but I got mine at roadid.com. It cost me $20 for the ID and is $11 annually to keep my online profile active for emergency responders. Twice now, ER doctors have used my road ID info for background information and to contact my oncology team. It's particularly helpful when a patient is unconscious or otherwise in pain and confused.

Ipi trashed my thyroid pretty immediately, and did little to contol or stabilize my tumors. Once Keytruda was FDA approved (Oct/Nov 2014), I started on that. I was trouble free, with the exception of some minor digestive issues. I made it through 29 rounds of Keytruda before I began experiencing autoimmune side effects. My routine CT showed developing pancreatitis, so my oncologist and I decided to "pause" infusions. The pancreatitis cleared on its own, but I began to develop inflammatory arthritis problems. I am currently working with a rheumatologist to help with these late onset side effects, and my "pause" in Keytruda has become more of a permanent discontinuation… unless I were to develop new metastasis. 

This NY Times article is a good reminder that anyone on immunotherapy treatments should keep tight watch over their body and the general sense of "wellness". Additionally…. With these drugs being so new to general use, doctors are definitely seeing more patients with autoimmune issues. Because many ER doctors and/or general oncologists will not be at all familiar with the potential side effects of these immunotherapies, any patient on them should carry some form of medical treatment history, along with their oncologist's contact information. Personally, I wear an "interactive RoadID". It allows me to update current medications, medical history, a list of doctors and their contact info, as well as allergies and much more… all on a secure profile online! I do not work for the company, and I know that there are likely others around that offer the same sort of "medical emergency bracelet", but I got mine at roadid.com. It cost me $20 for the ID and is $11 annually to keep my online profile active for emergency responders. Twice now, ER doctors have used my road ID info for background information and to contact my oncology team. It's particularly helpful when a patient is unconscious or otherwise in pain and confused.

Ipi trashed my thyroid pretty immediately, and did little to contol or stabilize my tumors. Once Keytruda was FDA approved (Oct/Nov 2014), I started on that. I was trouble free, with the exception of some minor digestive issues. I made it through 29 rounds of Keytruda before I began experiencing autoimmune side effects. My routine CT showed developing pancreatitis, so my oncologist and I decided to "pause" infusions. The pancreatitis cleared on its own, but I began to develop inflammatory arthritis problems. I am currently working with a rheumatologist to help with these late onset side effects, and my "pause" in Keytruda has become more of a permanent discontinuation… unless I were to develop new metastasis. 

This NY Times article is a good reminder that anyone on immunotherapy treatments should keep tight watch over their body and the general sense of "wellness". Additionally…. With these drugs being so new to general use, doctors are definitely seeing more patients with autoimmune issues. Because many ER doctors and/or general oncologists will not be at all familiar with the potential side effects of these immunotherapies, any patient on them should carry some form of medical treatment history, along with their oncologist's contact information. Personally, I wear an "interactive RoadID". It allows me to update current medications, medical history, a list of doctors and their contact info, as well as allergies and much more… all on a secure profile online! I do not work for the company, and I know that there are likely others around that offer the same sort of "medical emergency bracelet", but I got mine at roadid.com. It cost me $20 for the ID and is $11 annually to keep my online profile active for emergency responders. Twice now, ER doctors have used my road ID info for background information and to contact my oncology team. It's particularly helpful when a patient is unconscious or otherwise in pain and confused.

Immunotherapy is not for sissies!!  That's for certain.  Side effects can be anything from being tired to significant organ damage.  That's why I keep posting these updates (with links within!):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/side-effects-to-immunotherapypart-6.html

…and encouraging anyone who thinks things are a bit off to contact their doc!

Wishing you all well.  Celeste

Immunotherapy is not for sissies!!  That's for certain.  Side effects can be anything from being tired to significant organ damage.  That's why I keep posting these updates (with links within!):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/side-effects-to-immunotherapypart-6.html

…and encouraging anyone who thinks things are a bit off to contact their doc!

Wishing you all well.  Celeste

Immunotherapy is not for sissies!!  That's for certain.  Side effects can be anything from being tired to significant organ damage.  That's why I keep posting these updates (with links within!):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/side-effects-to-immunotherapypart-6.html

…and encouraging anyone who thinks things are a bit off to contact their doc!

Wishing you all well.  Celeste

Hi Patina, thanks for the topic which is a great one especially for new patients who are just getting started with treatments. When it comes to taking advice from Newspaper however I must add that like in politics one should question the motive!!!! When I think back just 3 and a half years ago to my own journey. Where the stats for melanoma with brain and lung mets were just horrible, between 4 to 8 months. If it wasn't for these new drugs, I wouldn't be around here to read the Times article. My hope is that in time with more experience Oncologists will be able to minimize many of the situation that the article brings up. Thanks again for the articles and best wishes!!!!Ed 

Hi Patina, thanks for the topic which is a great one especially for new patients who are just getting started with treatments. When it comes to taking advice from Newspaper however I must add that like in politics one should question the motive!!!! When I think back just 3 and a half years ago to my own journey. Where the stats for melanoma with brain and lung mets were just horrible, between 4 to 8 months. If it wasn't for these new drugs, I wouldn't be around here to read the Times article. My hope is that in time with more experience Oncologists will be able to minimize many of the situation that the article brings up. Thanks again for the articles and best wishes!!!!Ed 

Hi Patina, thanks for the topic which is a great one especially for new patients who are just getting started with treatments. When it comes to taking advice from Newspaper however I must add that like in politics one should question the motive!!!! When I think back just 3 and a half years ago to my own journey. Where the stats for melanoma with brain and lung mets were just horrible, between 4 to 8 months. If it wasn't for these new drugs, I wouldn't be around here to read the Times article. My hope is that in time with more experience Oncologists will be able to minimize many of the situation that the article brings up. Thanks again for the articles and best wishes!!!!Ed 

What struck me about this article, as one who someday may be facing this treatment, is what a debt of gratitude we owe, not only to the trial participants, but also to current patients. 

Mary

What struck me about this article, as one who someday may be facing this treatment, is what a debt of gratitude we owe, not only to the trial participants, but also to current patients. 

Mary

What struck me about this article, as one who someday may be facing this treatment, is what a debt of gratitude we owe, not only to the trial participants, but also to current patients. 

Mary

http://wakeup-world.com/2015/05/17/over-100-scientific-studies-agree-cannabis-annihilates-cancer/?utm_campaign=Wake+Up+World+e-Newsletter&utm_content=Latest+Headlines+inc.+Smartphones+ARE+Dumbing+Us+Down+%E2%80%94+Here%E2%80%99s+How&utm_medium=email&utm_source=getresponse

http://wakeup-world.com/2015/05/17/over-100-scientific-studies-agree-cannabis-annihilates-cancer/?utm_campaign=Wake+Up+World+e-Newsletter&utm_content=Latest+Headlines+inc.+Smartphones+ARE+Dumbing+Us+Down+%E2%80%94+Here%E2%80%99s+How&utm_medium=email&utm_source=getresponse

http://wakeup-world.com/2015/05/17/over-100-scientific-studies-agree-cannabis-annihilates-cancer/?utm_campaign=Wake+Up+World+e-Newsletter&utm_content=Latest+Headlines+inc.+Smartphones+ARE+Dumbing+Us+Down+%E2%80%94+Here%E2%80%99s+How&utm_medium=email&utm_source=getresponse

I didn't read the article but I start the maintanance part of the combo on 12/23. I have had at least 1 side effect starting after the second week from the 1st dose. All my side effects have been mild. I developed vitiligo about 6 weeks ago and your mom should be very happy she has it. Research has patients who develope vitiligo have way better results than those who don't.

I didn't read the article but I start the maintanance part of the combo on 12/23. I have had at least 1 side effect starting after the second week from the 1st dose. All my side effects have been mild. I developed vitiligo about 6 weeks ago and your mom should be very happy she has it. Research has patients who develope vitiligo have way better results than those who don't.

I didn't read the article but I start the maintanance part of the combo on 12/23. I have had at least 1 side effect starting after the second week from the 1st dose. All my side effects have been mild. I developed vitiligo about 6 weeks ago and your mom should be very happy she has it. Research has patients who develope vitiligo have way better results than those who don't.

Some thoughts on this topic.  Regular contributors to forum could have written that article by just reading this forum.  I think the general consensus here is that these new drugs are POTENTIAL miracle drugs for those that respond.  At the same time I get the feeling there are going to be many, many unpleasant findings as the data is collected over a much larger "test" population.  Even so…the hope and successes that are being seen is unquestionably better for Stage 4 patients than "you have 5-8 months to live" where we were just a few years ago.

Having said that….I think the real question is for my fellow Stage 3 warriors.  For stage 4…it makes total sense to roll the dice given the alternative.  But I really worry about the Stage 3 folks that get exposed to potentially lifelong problems (some minor…some not so minor).  Many of you will recognize my name as one of the last Stage 3 person to take a full year of Interferon (versus the only approved alternative which was Watch and Wait) but all of those many, many side effects have completely reversed. Whether the year of misery impacted my long term outcome of pushing any potential reoccurrence out an average of 6-12 months is still TBD…hopefully I never have to be that statistic.  But I know one thing for sure…I am grateful to all those warriors that have gone before me so that doctors can fine tune their craft.

So net-net.  If I was just diagnosed today with Stage 3…I am not sure I would do IPI given the potential consequences (especially the high dose regiment that was officially approved).  I think Watch and Wait may be the actual best course of action for Stage 3 (especially the 3A) and pray for doctors to get more practice.  I know there are some Keytruda adjunctive trials being run right now…that might be the mid-point in terms of risk/reward for those in Stage 3.

Just my two cents….

All the best 

Michel

Some thoughts on this topic.  Regular contributors to forum could have written that article by just reading this forum.  I think the general consensus here is that these new drugs are POTENTIAL miracle drugs for those that respond.  At the same time I get the feeling there are going to be many, many unpleasant findings as the data is collected over a much larger "test" population.  Even so…the hope and successes that are being seen is unquestionably better for Stage 4 patients than "you have 5-8 months to live" where we were just a few years ago.

Having said that….I think the real question is for my fellow Stage 3 warriors.  For stage 4…it makes total sense to roll the dice given the alternative.  But I really worry about the Stage 3 folks that get exposed to potentially lifelong problems (some minor…some not so minor).  Many of you will recognize my name as one of the last Stage 3 person to take a full year of Interferon (versus the only approved alternative which was Watch and Wait) but all of those many, many side effects have completely reversed. Whether the year of misery impacted my long term outcome of pushing any potential reoccurrence out an average of 6-12 months is still TBD…hopefully I never have to be that statistic.  But I know one thing for sure…I am grateful to all those warriors that have gone before me so that doctors can fine tune their craft.

So net-net.  If I was just diagnosed today with Stage 3…I am not sure I would do IPI given the potential consequences (especially the high dose regiment that was officially approved).  I think Watch and Wait may be the actual best course of action for Stage 3 (especially the 3A) and pray for doctors to get more practice.  I know there are some Keytruda adjunctive trials being run right now…that might be the mid-point in terms of risk/reward for those in Stage 3.

Just my two cents….

All the best 

Michel

Some thoughts on this topic.  Regular contributors to forum could have written that article by just reading this forum.  I think the general consensus here is that these new drugs are POTENTIAL miracle drugs for those that respond.  At the same time I get the feeling there are going to be many, many unpleasant findings as the data is collected over a much larger "test" population.  Even so…the hope and successes that are being seen is unquestionably better for Stage 4 patients than "you have 5-8 months to live" where we were just a few years ago.

Having said that….I think the real question is for my fellow Stage 3 warriors.  For stage 4…it makes total sense to roll the dice given the alternative.  But I really worry about the Stage 3 folks that get exposed to potentially lifelong problems (some minor…some not so minor).  Many of you will recognize my name as one of the last Stage 3 person to take a full year of Interferon (versus the only approved alternative which was Watch and Wait) but all of those many, many side effects have completely reversed. Whether the year of misery impacted my long term outcome of pushing any potential reoccurrence out an average of 6-12 months is still TBD…hopefully I never have to be that statistic.  But I know one thing for sure…I am grateful to all those warriors that have gone before me so that doctors can fine tune their craft.

So net-net.  If I was just diagnosed today with Stage 3…I am not sure I would do IPI given the potential consequences (especially the high dose regiment that was officially approved).  I think Watch and Wait may be the actual best course of action for Stage 3 (especially the 3A) and pray for doctors to get more practice.  I know there are some Keytruda adjunctive trials being run right now…that might be the mid-point in terms of risk/reward for those in Stage 3.

Just my two cents….

All the best 

Michel