› Forums › General Melanoma Community › ipi not working now what
- This topic has 12 replies, 4 voices, and was last updated 13 years, 1 month ago by
Charlie S.
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- August 31, 2011 at 2:09 am
Derek had scans 3 weeks after his last ipi injection and scans show progression in his thorax (no measurements) and right lung (no measurements) and progression in his liver (1.7 to 3.3. and 1.2 to 1.5) and a new tumour behind his eye.
We really want to believe that ipi just hasn't started working yet but our oncologist does not want to wait. He would like to radiate his lung, thorax area, and eye – 5x, and do chemo – 2x (carbotaxol) for his liver – to attempt to get things under control.
Derek had scans 3 weeks after his last ipi injection and scans show progression in his thorax (no measurements) and right lung (no measurements) and progression in his liver (1.7 to 3.3. and 1.2 to 1.5) and a new tumour behind his eye.
We really want to believe that ipi just hasn't started working yet but our oncologist does not want to wait. He would like to radiate his lung, thorax area, and eye – 5x, and do chemo – 2x (carbotaxol) for his liver – to attempt to get things under control.
My question is that if ipi stimulates the immune system and chemo kills it will that not wreck anything that ipi might still be trying to do and how do you tell between inflammation and continued growth – I really need some help, please…should I be asking for measurements and going back and calcualting the rate of growth or progression before and after ipi or go with chemo and hope it doesn't undo any possibility that ipi could still be working?
Thank you in advance
Terra
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- August 31, 2011 at 3:05 am
Terra, I am sorry to read that ipi doesn't seem to be working. I agree with the approach
that Derek's oncologist is intending to take – radiation followed by chemo.Chemo such as carbotaxol is toxic to all fast dividing cells and therefore will attack
the melanoma and will hopefully reduce the tumour load. It doesn't target the immune
system directly, although of course it can have immune related side effects.Ipi works in a far more sophisticated manner, and it is designed to block the activity
of CTLA-4 thereby sustaining an active immune response in its attack on melanoma cells.
(See: http://en.wikipedia.org/wiki/Ipilimumab).CT and PET scans will tell us what is ordinary tissue and what could be malignant
tissue. These 2 scans are done in conjunction with each other and are an accurate way of
measuring the amount disease that may be present.So, in summary I would trust the advice of Derek's oncologist at the moment. I don't
think that carbotaxol will interfere much with the effect that ipi might be having.Hope this helps.
Frank from Australia
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- August 31, 2011 at 3:05 am
Terra, I am sorry to read that ipi doesn't seem to be working. I agree with the approach
that Derek's oncologist is intending to take – radiation followed by chemo.Chemo such as carbotaxol is toxic to all fast dividing cells and therefore will attack
the melanoma and will hopefully reduce the tumour load. It doesn't target the immune
system directly, although of course it can have immune related side effects.Ipi works in a far more sophisticated manner, and it is designed to block the activity
of CTLA-4 thereby sustaining an active immune response in its attack on melanoma cells.
(See: http://en.wikipedia.org/wiki/Ipilimumab).CT and PET scans will tell us what is ordinary tissue and what could be malignant
tissue. These 2 scans are done in conjunction with each other and are an accurate way of
measuring the amount disease that may be present.So, in summary I would trust the advice of Derek's oncologist at the moment. I don't
think that carbotaxol will interfere much with the effect that ipi might be having.Hope this helps.
Frank from Australia
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- August 31, 2011 at 3:34 am
In general, yes, IPI is an immunotherapy. In contrast, again in gneral, chemotherapy targets and destroys any and all rapidly dividing cells. The downside of ipilimumab (Yervoy) is the time element for the immune system recognition and action.
I am no doctor, but if one views the mechanism by which ipi works versus how chemo works, there could indeed be a cancelling effect.
Radiation, beyond whole brain radiation and adjunct, non metastatic surgical therapy is mostly considered pallative (comfort) and not curative.
As ugly as it is, hard questions are required. The oncologist needs to tell you, and you need to ask, what the "end game" is for the proposed therapy.
Specifically, what will the proposed therapy do to address and accomplish given the current state of his disease and what doors could we expect to close or open for future therapies as a result?
Do not back off and press for an answer. This will put the oncologist on the spot, which is a fair thing to do.
My best to you both, but ask and get answers from the onc and do NOT let them off the hook for answers.
My best to you both.
Charlie S
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- August 31, 2011 at 6:29 am
I am not sure I understand about pressing him for answers – sorry I am incredibly confused, sad, and so very angry I cannot think very straight – can you explain a bit further – I don't even know what to ask him
Derek is BRAF negative – should we be thinking about IL2 instead o as Frank said continue on this path of chemo and radiation
Our main goal right know is getting our first daughter to kindergarten this Tuesday and this news today just I guess has made both of us quite numb and facing the reality that Derek may not be here with us for very much longer and how do we continue fighting and with what
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- August 31, 2011 at 7:12 am
Terra, I would just like to chime in here and say that I know how you might be feeling at the moment. I was in a similar situation 2 years ago, and at that time there were far less treatment options available.
The problem with any treatment at the stage that Derek is at is toxicity and adverse effects. Although IL2 shows promise, it is a very toxic treatment compared to the chemo (and radiation) that the oncologist has suggested. Therefore, it may be too much for Derek to handle at the moment and I feel that the oncologist is taking this into consideration. So, I would have confidence in the oncologist's professional opinion.
Take care
Frank from Australia
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- August 31, 2011 at 12:08 pm
Terra,
I'm so very sorry for everything that you and your family is going through. It's no doubt that you are sad and discouraged, but I also know how angry you are likely feeling as I have those days myself – especially with a 22 month old daughter. This is just not fair.
That being said, Derek and I share the same oncologist and sometimes I feel his decisions are based on "the numbers" and the science of melanoma. I know he probably doesn't want to put Derek through the toxic treatment of IL-2, but if he's healthy enough to go through it, then I personally feel it's worth a try. If ipi fails for me (and God willing it won't), IL-2 would be my next choice as I'm also BRAF -.
I know everything feels so lost now, but please don't give up hope. Radiation and chemo could potentially shrink some of his tumour burden and open up doors for a clinical trial that could continue to buy time. Time buys us hope that the next best thing is around the corner.
My thoughts are with you and your family and I'm routing for you!
Lisa – Stage 4
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- August 31, 2011 at 12:08 pm
Terra,
I'm so very sorry for everything that you and your family is going through. It's no doubt that you are sad and discouraged, but I also know how angry you are likely feeling as I have those days myself – especially with a 22 month old daughter. This is just not fair.
That being said, Derek and I share the same oncologist and sometimes I feel his decisions are based on "the numbers" and the science of melanoma. I know he probably doesn't want to put Derek through the toxic treatment of IL-2, but if he's healthy enough to go through it, then I personally feel it's worth a try. If ipi fails for me (and God willing it won't), IL-2 would be my next choice as I'm also BRAF -.
I know everything feels so lost now, but please don't give up hope. Radiation and chemo could potentially shrink some of his tumour burden and open up doors for a clinical trial that could continue to buy time. Time buys us hope that the next best thing is around the corner.
My thoughts are with you and your family and I'm routing for you!
Lisa – Stage 4
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- August 31, 2011 at 7:12 am
Terra, I would just like to chime in here and say that I know how you might be feeling at the moment. I was in a similar situation 2 years ago, and at that time there were far less treatment options available.
The problem with any treatment at the stage that Derek is at is toxicity and adverse effects. Although IL2 shows promise, it is a very toxic treatment compared to the chemo (and radiation) that the oncologist has suggested. Therefore, it may be too much for Derek to handle at the moment and I feel that the oncologist is taking this into consideration. So, I would have confidence in the oncologist's professional opinion.
Take care
Frank from Australia
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- September 1, 2011 at 3:26 am
That;s okay; it can be confusing times.
But you MUST know what the doc is hoping to accomplish before agreeing to anything.
I know this will seem harsh, but in order for you to see your daughter in that light in your husbands eyes, it is important to focus on how to get there. Each day can bring a new problem, but please work that problem.
Charlie S
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- September 1, 2011 at 3:26 am
That;s okay; it can be confusing times.
But you MUST know what the doc is hoping to accomplish before agreeing to anything.
I know this will seem harsh, but in order for you to see your daughter in that light in your husbands eyes, it is important to focus on how to get there. Each day can bring a new problem, but please work that problem.
Charlie S
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- August 31, 2011 at 6:29 am
I am not sure I understand about pressing him for answers – sorry I am incredibly confused, sad, and so very angry I cannot think very straight – can you explain a bit further – I don't even know what to ask him
Derek is BRAF negative – should we be thinking about IL2 instead o as Frank said continue on this path of chemo and radiation
Our main goal right know is getting our first daughter to kindergarten this Tuesday and this news today just I guess has made both of us quite numb and facing the reality that Derek may not be here with us for very much longer and how do we continue fighting and with what
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- August 31, 2011 at 3:34 am
In general, yes, IPI is an immunotherapy. In contrast, again in gneral, chemotherapy targets and destroys any and all rapidly dividing cells. The downside of ipilimumab (Yervoy) is the time element for the immune system recognition and action.
I am no doctor, but if one views the mechanism by which ipi works versus how chemo works, there could indeed be a cancelling effect.
Radiation, beyond whole brain radiation and adjunct, non metastatic surgical therapy is mostly considered pallative (comfort) and not curative.
As ugly as it is, hard questions are required. The oncologist needs to tell you, and you need to ask, what the "end game" is for the proposed therapy.
Specifically, what will the proposed therapy do to address and accomplish given the current state of his disease and what doors could we expect to close or open for future therapies as a result?
Do not back off and press for an answer. This will put the oncologist on the spot, which is a fair thing to do.
My best to you both, but ask and get answers from the onc and do NOT let them off the hook for answers.
My best to you both.
Charlie S
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