Tumour growing after Pembro stopped

I have to think more about Jubes other points/questions, as well as yours….but I felt it important to share this now…

We do a disservice to those around us when we say that prednisone, or other immune suppressants like inflixamab, etc stop the beneficial response of immunotherapy. That is old "news".  Melanoma Big Dogs once thought that way but they do NOT anymore! If they can admit the error in their initial thinking…the least we can do is not propagate it!

Yes, as Jubes is more than well aware….inflixamab is an immunosuppressant! However….it is not an impediment to the anti-tumor response that immunotherapy can provide.

Here's the data:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

There is much, much more in the literature and on my blog. But…the truth is that many times when patients are experiencing significant immune related adverse events…meds that stop that event preserve the patient's life, often – if started soon enough – allow the patient to continue needed immunotherapy, and do NOT impede their anti-melanoma response. Patients need to seek help. And if these drugs help, they should be taken seriously, but not with fear.

Celeste

I have to think more about Jubes other points/questions, as well as yours….but I felt it important to share this now…

We do a disservice to those around us when we say that prednisone, or other immune suppressants like inflixamab, etc stop the beneficial response of immunotherapy. That is old "news".  Melanoma Big Dogs once thought that way but they do NOT anymore! If they can admit the error in their initial thinking…the least we can do is not propagate it!

Yes, as Jubes is more than well aware….inflixamab is an immunosuppressant! However….it is not an impediment to the anti-tumor response that immunotherapy can provide.

Here's the data:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

There is much, much more in the literature and on my blog. But…the truth is that many times when patients are experiencing significant immune related adverse events…meds that stop that event preserve the patient's life, often – if started soon enough – allow the patient to continue needed immunotherapy, and do NOT impede their anti-melanoma response. Patients need to seek help. And if these drugs help, they should be taken seriously, but not with fear.

Celeste

I can absolutely understand the need and/or desire to tackle the side effects of immunotherapy treatments. Things such as colitis, renal failure, liver failure, etc are VERY serious and need to be handled immediately. That said… the question of steroid use is still questioned by some of the "big dogs" (I am/was being treated by some of these top people). It comes down to how serious the autoimmune event is, as well as the individual patient's response. Just as we all differ with immunotheraputic response, we wil have our differences in steroids as well. In recent discussion with my rheum, he pointed out that they have drugs which have the exact opposite response to CTLA-4 that Ipilimumab does. Infliximab is not a corticosteroid. It is an artificial antibody. They do not function the same way, and are used to treat autoimmune patients who have failed on corticosteroids. This is NOT AT ALL to say that Jubes or her doctors made a "wrong" or "poor" decision. While none of us wish to die of our melanoma, we also have an equally strong wish not to be killed by the side effects of our melanoma treatment! I simply wanted to point out that this may be a contributing factor she should bring up with her doctors, as I know that mine are quite concerned about treating my joint pain and swelling systemically. 

I can absolutely understand the need and/or desire to tackle the side effects of immunotherapy treatments. Things such as colitis, renal failure, liver failure, etc are VERY serious and need to be handled immediately. That said… the question of steroid use is still questioned by some of the "big dogs" (I am/was being treated by some of these top people). It comes down to how serious the autoimmune event is, as well as the individual patient's response. Just as we all differ with immunotheraputic response, we wil have our differences in steroids as well. In recent discussion with my rheum, he pointed out that they have drugs which have the exact opposite response to CTLA-4 that Ipilimumab does. Infliximab is not a corticosteroid. It is an artificial antibody. They do not function the same way, and are used to treat autoimmune patients who have failed on corticosteroids. This is NOT AT ALL to say that Jubes or her doctors made a "wrong" or "poor" decision. While none of us wish to die of our melanoma, we also have an equally strong wish not to be killed by the side effects of our melanoma treatment! I simply wanted to point out that this may be a contributing factor she should bring up with her doctors, as I know that mine are quite concerned about treating my joint pain and swelling systemically. 

You are right. If symptoms can be managed elsewise…all the better. However, if needed…meds I listed do all that I said and fail to remove positive benefit.  The data is clear. Some have suffered intensely from immune related side effects. Some have passed. The ratties have taught us much. C

You are right. If symptoms can be managed elsewise…all the better. However, if needed…meds I listed do all that I said and fail to remove positive benefit.  The data is clear. Some have suffered intensely from immune related side effects. Some have passed. The ratties have taught us much. C

As much as I am a critter fan… I do appreciate those making the sacrifices! : )  There are medical hypothesis and articles discussing the need for oncologists and rheums to get together on drug use and developement, as with the increase in immunotherapy treatments, these doctors will be sharing more and more patients. The drug arsenal that each department is equipped with may have the opposite effect on specific targeted proteins depending whether they are upregulating or downregulating. Such is the case with CTLA-4. Infliximab works against TNF-a. It's purpose is to dysregulate it. This can lead to many things… Alzheimers, cancers, inflammatory bowel disease… as well as others. These are all such new drugs, that only when folks such as ourselves start showing up in BOTH docs offices… they haven't been studied enough. That is not to say they can't be useful or quite necessary… but as you mentioned, depending on what the symptoms are, if they can be otherwised managed…… If she can manage the autoimmune response without risking damage to major organs and causing serious disability, but continue to take the Pembro, it might be the "safest" route. 

As much as I am a critter fan… I do appreciate those making the sacrifices! : )  There are medical hypothesis and articles discussing the need for oncologists and rheums to get together on drug use and developement, as with the increase in immunotherapy treatments, these doctors will be sharing more and more patients. The drug arsenal that each department is equipped with may have the opposite effect on specific targeted proteins depending whether they are upregulating or downregulating. Such is the case with CTLA-4. Infliximab works against TNF-a. It's purpose is to dysregulate it. This can lead to many things… Alzheimers, cancers, inflammatory bowel disease… as well as others. These are all such new drugs, that only when folks such as ourselves start showing up in BOTH docs offices… they haven't been studied enough. That is not to say they can't be useful or quite necessary… but as you mentioned, depending on what the symptoms are, if they can be otherwised managed…… If she can manage the autoimmune response without risking damage to major organs and causing serious disability, but continue to take the Pembro, it might be the "safest" route. 

You can actually review particepant profiles and posts on this forum. It is doesn't sound as though your read  the articles in my posts. Sometimes WE have to lead the way with subspecialists. The 'critters' are the front lines. This from a rattie who was in a Phase I nivo trial in 2010. But this is not about me or you. This is about Anne Louise, what she has suffered, what she stands to lose and her situation now. Thanks. C

You can actually review particepant profiles and posts on this forum. It is doesn't sound as though your read  the articles in my posts. Sometimes WE have to lead the way with subspecialists. The 'critters' are the front lines. This from a rattie who was in a Phase I nivo trial in 2010. But this is not about me or you. This is about Anne Louise, what she has suffered, what she stands to lose and her situation now. Thanks. C

Celeste, I did read the articles you've posted and referenced. I've read much of what you have referred and linked to in other posts on this forum as well. You are a wealth of information! There are many posts I have "lurked" and felt no need to post response, as you had already pulled the words from my head. : )  Not knowing what Anne Louise's irAE's were, I had to question the systemic treatment versus local. From what she posted below, I can see that spot treating EVERYWHERE isn't a valid option. I am in complete agreement with you regarding the use of steroids and some anti-immune meds… when they are necessary. However, I respectfully have to disagree with the absolute non-effect on the way they work in the body and the biological/chemical level in which they will down regulate our current immunotheraputic agents. As I've mentioned, doctors/researchers are still in learning phases and disagreement as to what effects come into play when one begins to down regulate what was being up regulated to treat the cancer.  (From the European Journal of Cancer… http://www.sciencedirect.com/science/article/pii/S0959804915011120)

Since the more recent immunotheraputic drugs are in more widespread use with FDA approval, we have a new generation of "research facilitators" (my doc hates the term "lab rat" or "guinea pig"… ha ha ha) cropping up. I just feel that it is best to err on the side of caution if/when it is within the realm of reason. My initial medical oncologist (a melanoma specialist) was/is also a PhD with his own research lab. Knowing the full extent of my personal case, I turned to him for personal opinion/advice when my irAE's began to make me question the continuation of Pembro. As short as 4 months ago, he cautioned me regarding the use of steroids or systemic treatment….. **caveat** — for my specific case history and current irAE's. I trust his wealth of knowledge, because of his medical background, and his research background… and because he left my treatment facility for a position at MD Anderson. Immuno suppressive meds with caution and as necessary, but not with full comfort and safety. I would classify Anne Louise's use as "necessary", now that I have better clarity of her irAE's. 

Celeste, I did read the articles you've posted and referenced. I've read much of what you have referred and linked to in other posts on this forum as well. You are a wealth of information! There are many posts I have "lurked" and felt no need to post response, as you had already pulled the words from my head. : )  Not knowing what Anne Louise's irAE's were, I had to question the systemic treatment versus local. From what she posted below, I can see that spot treating EVERYWHERE isn't a valid option. I am in complete agreement with you regarding the use of steroids and some anti-immune meds… when they are necessary. However, I respectfully have to disagree with the absolute non-effect on the way they work in the body and the biological/chemical level in which they will down regulate our current immunotheraputic agents. As I've mentioned, doctors/researchers are still in learning phases and disagreement as to what effects come into play when one begins to down regulate what was being up regulated to treat the cancer.  (From the European Journal of Cancer… http://www.sciencedirect.com/science/article/pii/S0959804915011120)

Since the more recent immunotheraputic drugs are in more widespread use with FDA approval, we have a new generation of "research facilitators" (my doc hates the term "lab rat" or "guinea pig"… ha ha ha) cropping up. I just feel that it is best to err on the side of caution if/when it is within the realm of reason. My initial medical oncologist (a melanoma specialist) was/is also a PhD with his own research lab. Knowing the full extent of my personal case, I turned to him for personal opinion/advice when my irAE's began to make me question the continuation of Pembro. As short as 4 months ago, he cautioned me regarding the use of steroids or systemic treatment….. **caveat** — for my specific case history and current irAE's. I trust his wealth of knowledge, because of his medical background, and his research background… and because he left my treatment facility for a position at MD Anderson. Immuno suppressive meds with caution and as necessary, but not with full comfort and safety. I would classify Anne Louise's use as "necessary", now that I have better clarity of her irAE's. 

Niki, I tried to read the link you provided to the European Journal of Cancer, while it lets me see the abstract, it will not let me read the whole article? Is there another way to get access to this information that you provided without having to pay for it? Ed

Niki, I tried to read the link you provided to the European Journal of Cancer, while it lets me see the abstract, it will not let me read the whole article? Is there another way to get access to this information that you provided without having to pay for it? Ed

Hi Ed, I purchased the pdf some time back, due to my own concerns over oncoming irAE's. I'm certain it is a legal "no no" to openly share the info, but I could may share a few select quotes from the paper….  provided I reference the original source? There are two pages worth of cited accreditations on the pdf. :-p 

This comes from: European Journal of Cancer 54 (2016) 139e148

"The management of IRAEs is based on the safety reports of pharmaceutics [7,26,27], expert’s opinion and on the knowledge of autoimmune diseases. An overall treatment approach and actions to be implemented for IRAEs is summarised in Table 3. Most IRAEs are steroid-sensitive and resolve within 6e12 weeks [18]. When the IRAE is steroid-refractory, immunomodulatory or immunosuppressive agents such as tumour necrosis factor (TNF)-alpha antagonists, azathioprine and mycophenolate mofetil (MMF) may be effective [26,27]. While the anti-TNF alpha has an immediate therapeutic effect [28], the other immunosuppressive drugs such as azathioprine and MMF only become effective after several weeks. For all severe IRAEs, a close collaboration with organ specialists is critical for improving both our knowledge and management of IRAEs. Steroids should be employed at initial doses used to treat autoimmune diseases (Table 3), but for a shorter period of time in order to avoid compromising antitumour immunity. After a full steroid dose treatment course of generally 2e4 weeks, steroids must be reduced gradually over a period of at least 1 month to avoid that the IRAE recur. 

"Immune checkpoint blockade leads to a new spectrum of dysimmune toxicity in hemato-oncology. From a practical perspective, the management requires a close collaboration between with organ specialists, which could see in return new insights into the pathophysiology of autoimmune diseases such as Crohn’s disease and hypophysitis. Dysimmune toxicity may be associated with the antitumour response and the use of steroids must be cautious. Dysimmune toxicity need to be extensively explored in the way that reflecting an effective antitumour response throughout neoantigens generation."

The above is from Europe and not the U.S., Canada, or Australia… so give this whatever face value one feels it may be worth. One hand isn't always aware of what the other hand is getting into. That said, if we review the irAE treatment protocols on Opdivo or Keytruda websites, we will find that the first suggestion when facing an irAE is to guage it's level… then either opt to "watch and wait", pause the infusion treatments (until symptoms resolve to level 1), if that does not resolve the issue… then it is suggested to treat with steroids only until if/when symptoms recover to level 1. Permanent discontinuation and treatment with heavy dose steroids is the final step. Seriously, I only wish to caution folks as to what steps they are taking and what they put into their system. The fact is, sometimes steriods and more are VERY necessary to stop an overactivated immune response before sever consequences occur. I would hate for folks to shy away from the need for them, fearing the consequences of taking them means cancer will return. Not true. However… just as we have to make informed decisions regarding everything else with our treatments, we cannot overlook the fact that immunotherapies boost our immune function to fight the cancer, and these drugs to counter act irAE's are immuno suppressive. It is biologically how they stop the problem. Perhaps when someone's immune system is overrevved so high that it's too high…. the steroid (or other immunosuppressive drugs) are only suppressive enough to bring them back down to balance without going so far as to disengage the efficacy of the immunotherapy? This might explain their lack of statistical affect on OS and/or time to progression…??? As a safety net, perhaps consider systemic immunosuppression as a strategic game of balance, not just assumed to be risk free. And I won't even open Pandora's Box of immunosuppressive drug side effects. 

Hi Ed, I purchased the pdf some time back, due to my own concerns over oncoming irAE's. I'm certain it is a legal "no no" to openly share the info, but I could may share a few select quotes from the paper….  provided I reference the original source? There are two pages worth of cited accreditations on the pdf. :-p 

This comes from: European Journal of Cancer 54 (2016) 139e148

"The management of IRAEs is based on the safety reports of pharmaceutics [7,26,27], expert’s opinion and on the knowledge of autoimmune diseases. An overall treatment approach and actions to be implemented for IRAEs is summarised in Table 3. Most IRAEs are steroid-sensitive and resolve within 6e12 weeks [18]. When the IRAE is steroid-refractory, immunomodulatory or immunosuppressive agents such as tumour necrosis factor (TNF)-alpha antagonists, azathioprine and mycophenolate mofetil (MMF) may be effective [26,27]. While the anti-TNF alpha has an immediate therapeutic effect [28], the other immunosuppressive drugs such as azathioprine and MMF only become effective after several weeks. For all severe IRAEs, a close collaboration with organ specialists is critical for improving both our knowledge and management of IRAEs. Steroids should be employed at initial doses used to treat autoimmune diseases (Table 3), but for a shorter period of time in order to avoid compromising antitumour immunity. After a full steroid dose treatment course of generally 2e4 weeks, steroids must be reduced gradually over a period of at least 1 month to avoid that the IRAE recur. 

"Immune checkpoint blockade leads to a new spectrum of dysimmune toxicity in hemato-oncology. From a practical perspective, the management requires a close collaboration between with organ specialists, which could see in return new insights into the pathophysiology of autoimmune diseases such as Crohn’s disease and hypophysitis. Dysimmune toxicity may be associated with the antitumour response and the use of steroids must be cautious. Dysimmune toxicity need to be extensively explored in the way that reflecting an effective antitumour response throughout neoantigens generation."

The above is from Europe and not the U.S., Canada, or Australia… so give this whatever face value one feels it may be worth. One hand isn't always aware of what the other hand is getting into. That said, if we review the irAE treatment protocols on Opdivo or Keytruda websites, we will find that the first suggestion when facing an irAE is to guage it's level… then either opt to "watch and wait", pause the infusion treatments (until symptoms resolve to level 1), if that does not resolve the issue… then it is suggested to treat with steroids only until if/when symptoms recover to level 1. Permanent discontinuation and treatment with heavy dose steroids is the final step. Seriously, I only wish to caution folks as to what steps they are taking and what they put into their system. The fact is, sometimes steriods and more are VERY necessary to stop an overactivated immune response before sever consequences occur. I would hate for folks to shy away from the need for them, fearing the consequences of taking them means cancer will return. Not true. However… just as we have to make informed decisions regarding everything else with our treatments, we cannot overlook the fact that immunotherapies boost our immune function to fight the cancer, and these drugs to counter act irAE's are immuno suppressive. It is biologically how they stop the problem. Perhaps when someone's immune system is overrevved so high that it's too high…. the steroid (or other immunosuppressive drugs) are only suppressive enough to bring them back down to balance without going so far as to disengage the efficacy of the immunotherapy? This might explain their lack of statistical affect on OS and/or time to progression…??? As a safety net, perhaps consider systemic immunosuppression as a strategic game of balance, not just assumed to be risk free. And I won't even open Pandora's Box of immunosuppressive drug side effects. 

Hi Ed, I purchased the pdf some time back, due to my own concerns over oncoming irAE's. I'm certain it is a legal "no no" to openly share the info, but I could may share a few select quotes from the paper….  provided I reference the original source? There are two pages worth of cited accreditations on the pdf. :-p 

This comes from: European Journal of Cancer 54 (2016) 139e148

"The management of IRAEs is based on the safety reports of pharmaceutics [7,26,27], expert’s opinion and on the knowledge of autoimmune diseases. An overall treatment approach and actions to be implemented for IRAEs is summarised in Table 3. Most IRAEs are steroid-sensitive and resolve within 6e12 weeks [18]. When the IRAE is steroid-refractory, immunomodulatory or immunosuppressive agents such as tumour necrosis factor (TNF)-alpha antagonists, azathioprine and mycophenolate mofetil (MMF) may be effective [26,27]. While the anti-TNF alpha has an immediate therapeutic effect [28], the other immunosuppressive drugs such as azathioprine and MMF only become effective after several weeks. For all severe IRAEs, a close collaboration with organ specialists is critical for improving both our knowledge and management of IRAEs. Steroids should be employed at initial doses used to treat autoimmune diseases (Table 3), but for a shorter period of time in order to avoid compromising antitumour immunity. After a full steroid dose treatment course of generally 2e4 weeks, steroids must be reduced gradually over a period of at least 1 month to avoid that the IRAE recur. 

"Immune checkpoint blockade leads to a new spectrum of dysimmune toxicity in hemato-oncology. From a practical perspective, the management requires a close collaboration between with organ specialists, which could see in return new insights into the pathophysiology of autoimmune diseases such as Crohn’s disease and hypophysitis. Dysimmune toxicity may be associated with the antitumour response and the use of steroids must be cautious. Dysimmune toxicity need to be extensively explored in the way that reflecting an effective antitumour response throughout neoantigens generation."

The above is from Europe and not the U.S., Canada, or Australia… so give this whatever face value one feels it may be worth. One hand isn't always aware of what the other hand is getting into. That said, if we review the irAE treatment protocols on Opdivo or Keytruda websites, we will find that the first suggestion when facing an irAE is to guage it's level… then either opt to "watch and wait", pause the infusion treatments (until symptoms resolve to level 1), if that does not resolve the issue… then it is suggested to treat with steroids only until if/when symptoms recover to level 1. Permanent discontinuation and treatment with heavy dose steroids is the final step. Seriously, I only wish to caution folks as to what steps they are taking and what they put into their system. The fact is, sometimes steriods and more are VERY necessary to stop an overactivated immune response before sever consequences occur. I would hate for folks to shy away from the need for them, fearing the consequences of taking them means cancer will return. Not true. However… just as we have to make informed decisions regarding everything else with our treatments, we cannot overlook the fact that immunotherapies boost our immune function to fight the cancer, and these drugs to counter act irAE's are immuno suppressive. It is biologically how they stop the problem. Perhaps when someone's immune system is overrevved so high that it's too high…. the steroid (or other immunosuppressive drugs) are only suppressive enough to bring them back down to balance without going so far as to disengage the efficacy of the immunotherapy? This might explain their lack of statistical affect on OS and/or time to progression…??? As a safety net, perhaps consider systemic immunosuppression as a strategic game of balance, not just assumed to be risk free. And I won't even open Pandora's Box of immunosuppressive drug side effects. 

I am looking forward to your future posts with hopeful anticipation that things make a turn in a cancer free… but also pain free (decreased pain?) direction! You're cutting the path for those of us now hitting the wall with irAE's! 

I am looking forward to your future posts with hopeful anticipation that things make a turn in a cancer free… but also pain free (decreased pain?) direction! You're cutting the path for those of us now hitting the wall with irAE's! 

I am looking forward to your future posts with hopeful anticipation that things make a turn in a cancer free… but also pain free (decreased pain?) direction! You're cutting the path for those of us now hitting the wall with irAE's! 

Niki, I tried to read the link you provided to the European Journal of Cancer, while it lets me see the abstract, it will not let me read the whole article? Is there another way to get access to this information that you provided without having to pay for it? Ed

Celeste, I did read the articles you've posted and referenced. I've read much of what you have referred and linked to in other posts on this forum as well. You are a wealth of information! There are many posts I have "lurked" and felt no need to post response, as you had already pulled the words from my head. : )  Not knowing what Anne Louise's irAE's were, I had to question the systemic treatment versus local. From what she posted below, I can see that spot treating EVERYWHERE isn't a valid option. I am in complete agreement with you regarding the use of steroids and some anti-immune meds… when they are necessary. However, I respectfully have to disagree with the absolute non-effect on the way they work in the body and the biological/chemical level in which they will down regulate our current immunotheraputic agents. As I've mentioned, doctors/researchers are still in learning phases and disagreement as to what effects come into play when one begins to down regulate what was being up regulated to treat the cancer.  (From the European Journal of Cancer… http://www.sciencedirect.com/science/article/pii/S0959804915011120)

Since the more recent immunotheraputic drugs are in more widespread use with FDA approval, we have a new generation of "research facilitators" (my doc hates the term "lab rat" or "guinea pig"… ha ha ha) cropping up. I just feel that it is best to err on the side of caution if/when it is within the realm of reason. My initial medical oncologist (a melanoma specialist) was/is also a PhD with his own research lab. Knowing the full extent of my personal case, I turned to him for personal opinion/advice when my irAE's began to make me question the continuation of Pembro. As short as 4 months ago, he cautioned me regarding the use of steroids or systemic treatment….. **caveat** — for my specific case history and current irAE's. I trust his wealth of knowledge, because of his medical background, and his research background… and because he left my treatment facility for a position at MD Anderson. Immuno suppressive meds with caution and as necessary, but not with full comfort and safety. I would classify Anne Louise's use as "necessary", now that I have better clarity of her irAE's. 

You can actually review particepant profiles and posts on this forum. It is doesn't sound as though your read  the articles in my posts. Sometimes WE have to lead the way with subspecialists. The 'critters' are the front lines. This from a rattie who was in a Phase I nivo trial in 2010. But this is not about me or you. This is about Anne Louise, what she has suffered, what she stands to lose and her situation now. Thanks. C

As much as I am a critter fan… I do appreciate those making the sacrifices! : )  There are medical hypothesis and articles discussing the need for oncologists and rheums to get together on drug use and developement, as with the increase in immunotherapy treatments, these doctors will be sharing more and more patients. The drug arsenal that each department is equipped with may have the opposite effect on specific targeted proteins depending whether they are upregulating or downregulating. Such is the case with CTLA-4. Infliximab works against TNF-a. It's purpose is to dysregulate it. This can lead to many things… Alzheimers, cancers, inflammatory bowel disease… as well as others. These are all such new drugs, that only when folks such as ourselves start showing up in BOTH docs offices… they haven't been studied enough. That is not to say they can't be useful or quite necessary… but as you mentioned, depending on what the symptoms are, if they can be otherwised managed…… If she can manage the autoimmune response without risking damage to major organs and causing serious disability, but continue to take the Pembro, it might be the "safest" route. 

You are right. If symptoms can be managed elsewise…all the better. However, if needed…meds I listed do all that I said and fail to remove positive benefit.  The data is clear. Some have suffered intensely from immune related side effects. Some have passed. The ratties have taught us much. C

I can absolutely understand the need and/or desire to tackle the side effects of immunotherapy treatments. Things such as colitis, renal failure, liver failure, etc are VERY serious and need to be handled immediately. That said… the question of steroid use is still questioned by some of the "big dogs" (I am/was being treated by some of these top people). It comes down to how serious the autoimmune event is, as well as the individual patient's response. Just as we all differ with immunotheraputic response, we wil have our differences in steroids as well. In recent discussion with my rheum, he pointed out that they have drugs which have the exact opposite response to CTLA-4 that Ipilimumab does. Infliximab is not a corticosteroid. It is an artificial antibody. They do not function the same way, and are used to treat autoimmune patients who have failed on corticosteroids. This is NOT AT ALL to say that Jubes or her doctors made a "wrong" or "poor" decision. While none of us wish to die of our melanoma, we also have an equally strong wish not to be killed by the side effects of our melanoma treatment! I simply wanted to point out that this may be a contributing factor she should bring up with her doctors, as I know that mine are quite concerned about treating my joint pain and swelling systemically. 

Thank you Celeste. I have read about this many times but still nice to hear it again. My dad’s doctors is keeping him on a 3 mg dose of prednisone while taking Nivo. They did not seem concerned with it affecting the Nivo. I still have my doubts but shouldn’t with all the new data out there showing it does NOT affect it.

Annie

Thank you Celeste. I have read about this many times but still nice to hear it again. My dad’s doctors is keeping him on a 3 mg dose of prednisone while taking Nivo. They did not seem concerned with it affecting the Nivo. I still have my doubts but shouldn’t with all the new data out there showing it does NOT affect it.

Annie

Thank you Celeste. I have read about this many times but still nice to hear it again. My dad’s doctors is keeping him on a 3 mg dose of prednisone while taking Nivo. They did not seem concerned with it affecting the Nivo. I still have my doubts but shouldn’t with all the new data out there showing it does NOT affect it.

Annie

I have to think more about Jubes other points/questions, as well as yours….but I felt it important to share this now…

We do a disservice to those around us when we say that prednisone, or other immune suppressants like inflixamab, etc stop the beneficial response of immunotherapy. That is old "news".  Melanoma Big Dogs once thought that way but they do NOT anymore! If they can admit the error in their initial thinking…the least we can do is not propagate it!

Yes, as Jubes is more than well aware….inflixamab is an immunosuppressant! However….it is not an impediment to the anti-tumor response that immunotherapy can provide.

Here's the data:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

There is much, much more in the literature and on my blog. But…the truth is that many times when patients are experiencing significant immune related adverse events…meds that stop that event preserve the patient's life, often – if started soon enough – allow the patient to continue needed immunotherapy, and do NOT impede their anti-melanoma response. Patients need to seek help. And if these drugs help, they should be taken seriously, but not with fear.

Celeste

Ugh… that certainly complicates your options. Spot treatment of "MY EVERYTHING hurts!" removes that as a choice. It is good that an interdisciplinary team will be discussing it. Hopefully the combo of those docs will be able to clarify the pros and cons of any options and make an incredibly difficult decision have some shred of clarity. While fortunate to be on the cutting edge of these new medications, the unfortunate flip-side, is being on the cutting edge… where doctors and researchers are still in "learning" phases too. 

You're obviously arming yourself with as much info as possible. Perhaps your "gut" will guide you when it comes down to a final choice. You are a lead warrior for finding the right balance of good and ugly… For that, I am sorry… but also thankful to you, for the experience and potential guidance you will be able to offer those who may follow in your footsteps. 

Ugh… that certainly complicates your options. Spot treatment of "MY EVERYTHING hurts!" removes that as a choice. It is good that an interdisciplinary team will be discussing it. Hopefully the combo of those docs will be able to clarify the pros and cons of any options and make an incredibly difficult decision have some shred of clarity. While fortunate to be on the cutting edge of these new medications, the unfortunate flip-side, is being on the cutting edge… where doctors and researchers are still in "learning" phases too. 

You're obviously arming yourself with as much info as possible. Perhaps your "gut" will guide you when it comes down to a final choice. You are a lead warrior for finding the right balance of good and ugly… For that, I am sorry… but also thankful to you, for the experience and potential guidance you will be able to offer those who may follow in your footsteps. 

Ugh… that certainly complicates your options. Spot treatment of "MY EVERYTHING hurts!" removes that as a choice. It is good that an interdisciplinary team will be discussing it. Hopefully the combo of those docs will be able to clarify the pros and cons of any options and make an incredibly difficult decision have some shred of clarity. While fortunate to be on the cutting edge of these new medications, the unfortunate flip-side, is being on the cutting edge… where doctors and researchers are still in "learning" phases too. 

You're obviously arming yourself with as much info as possible. Perhaps your "gut" will guide you when it comes down to a final choice. You are a lead warrior for finding the right balance of good and ugly… For that, I am sorry… but also thankful to you, for the experience and potential guidance you will be able to offer those who may follow in your footsteps. 

Awwe, man. Wish I could put my finger to the side of my nose…and up, up, up the chimney I go…to Australia! Would so love to hear you! Hang in there. The more I've thought about it…if you can get rid of this annoyance without too much suffering or ancillary damage…cut the sucker out! The data is extrodinarily clear that tumors we no longer have…no longer harm us! Let us know what happens next. Love, c

Awwe, man. Wish I could put my finger to the side of my nose…and up, up, up the chimney I go…to Australia! Would so love to hear you! Hang in there. The more I've thought about it…if you can get rid of this annoyance without too much suffering or ancillary damage…cut the sucker out! The data is extrodinarily clear that tumors we no longer have…no longer harm us! Let us know what happens next. Love, c

Awwe, man. Wish I could put my finger to the side of my nose…and up, up, up the chimney I go…to Australia! Would so love to hear you! Hang in there. The more I've thought about it…if you can get rid of this annoyance without too much suffering or ancillary damage…cut the sucker out! The data is extrodinarily clear that tumors we no longer have…no longer harm us! Let us know what happens next. Love, c

Awwe, man. Wish I could put my finger to the side of my nose…and up, up, up the chimney I go…to Australia! Would so love to hear you! Hang in there. The more I've thought about it…if you can get rid of this annoyance without too much suffering or ancillary damage…cut the sucker out! The data is extrodinarily clear that tumors we no longer have…no longer harm us! Let us know what happens next. Love, c

Awwe, man. Wish I could put my finger to the side of my nose…and up, up, up the chimney I go…to Australia! Would so love to hear you! Hang in there. The more I've thought about it…if you can get rid of this annoyance without too much suffering or ancillary damage…cut the sucker out! The data is extrodinarily clear that tumors we no longer have…no longer harm us! Let us know what happens next. Love, c

Awwe, man. Wish I could put my finger to the side of my nose…and up, up, up the chimney I go…to Australia! Would so love to hear you! Hang in there. The more I've thought about it…if you can get rid of this annoyance without too much suffering or ancillary damage…cut the sucker out! The data is extrodinarily clear that tumors we no longer have…no longer harm us! Let us know what happens next. Love, c

Celeste… let me know if you ever get that nose thing to work. There are so many places I'd like to travel without the 12+ hours of flights! Maybe if we lock arms, you can zip me there via "Samantha Stevens Air"!? ha! : )  I'm willing to pay triple what United is charging. I'd offer an appendage or organ… but I'm pretty sure you'd prefer to steer clear of recurrance… soooooo… ; )  Forget Elon Musk and his space flight to Mars….. I just want to teleport around the planet we currently inhabit!

Celeste… let me know if you ever get that nose thing to work. There are so many places I'd like to travel without the 12+ hours of flights! Maybe if we lock arms, you can zip me there via "Samantha Stevens Air"!? ha! : )  I'm willing to pay triple what United is charging. I'd offer an appendage or organ… but I'm pretty sure you'd prefer to steer clear of recurrance… soooooo… ; )  Forget Elon Musk and his space flight to Mars….. I just want to teleport around the planet we currently inhabit!

Celeste… let me know if you ever get that nose thing to work. There are so many places I'd like to travel without the 12+ hours of flights! Maybe if we lock arms, you can zip me there via "Samantha Stevens Air"!? ha! : )  I'm willing to pay triple what United is charging. I'd offer an appendage or organ… but I'm pretty sure you'd prefer to steer clear of recurrance… soooooo… ; )  Forget Elon Musk and his space flight to Mars….. I just want to teleport around the planet we currently inhabit!

Robotic surgery (da Vinci machine) leaves much less damage behind than traditional open chest cutting. My lower right lobe was removed via robotic. There are three holes… cameras, cutting tools, and a place to remove the "yuck" once it has been safely bagged. Two of my scars are spots… nearly invisible. The other is maybe 2 inches long. Much easier healing time. 

Robotic surgery (da Vinci machine) leaves much less damage behind than traditional open chest cutting. My lower right lobe was removed via robotic. There are three holes… cameras, cutting tools, and a place to remove the "yuck" once it has been safely bagged. Two of my scars are spots… nearly invisible. The other is maybe 2 inches long. Much easier healing time. 

Robotic surgery (da Vinci machine) leaves much less damage behind than traditional open chest cutting. My lower right lobe was removed via robotic. There are three holes… cameras, cutting tools, and a place to remove the "yuck" once it has been safely bagged. Two of my scars are spots… nearly invisible. The other is maybe 2 inches long. Much easier healing time. 

Thank you Deb, the second link was very interesting!!!!Ed

Thank you Deb, the second link was very interesting!!!!Ed

Thank you Deb, the second link was very interesting!!!!Ed

That is very interesting Deb! Thank you for finding and sharing! Something further to look into and pose to the onc and rheum. Hmmm.

That is very interesting Deb! Thank you for finding and sharing! Something further to look into and pose to the onc and rheum. Hmmm.

That is very interesting Deb! Thank you for finding and sharing! Something further to look into and pose to the onc and rheum. Hmmm.