› Forums › General Melanoma Community › Questions about IPI (Yervoy)
- This topic has 12 replies, 4 voices, and was last updated 14 years, 6 months ago by
Lisa13.
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- July 28, 2011 at 8:32 pm
In 2 weeks, I start Yervoy after failing dacarbazine. I have a couple of questions regarding ipi in general:
1. My tumours in my lungs have been growing very slowly the past 3 months. If I didn't respond to ipi, what is going to be my options if these tumours grow more while waiting for the scans? (I'm BRAf -)
2. With lung nodules, did anyone experience fluid in the lungs or other symptoms while the inflammation took place?
In 2 weeks, I start Yervoy after failing dacarbazine. I have a couple of questions regarding ipi in general:
1. My tumours in my lungs have been growing very slowly the past 3 months. If I didn't respond to ipi, what is going to be my options if these tumours grow more while waiting for the scans? (I'm BRAf -)
2. With lung nodules, did anyone experience fluid in the lungs or other symptoms while the inflammation took place?
After I met with my onc, I realized I hadn't asked these questions and won't see him until next week. Just thought I'd reach out to anyone whose had these experiences.
Lisa – Stage 4
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- July 28, 2011 at 8:52 pm
Lisa,
I'm doing my 4th ipi dose tomorrow.
I didn't have any side effects until the 3rd dose, several days of nausea/dizziness. Very very mild itching, but no "ipi rash".
I have lung nodules, and only in the last 2 weeks have I had an issue with fluid. They just drained my lung yesterday, and I feel so much better! I had a cough, but had had a cold, terribly humid/oppressive heat, etc. So it's a bit hard to say if the cough was from the combination of everything, melanoma specific, so on.
Since you are BRAF-, have you done IL2? I know that would have been my next step (they don't think I'm responding to ipi, but I'm praying I'm a late response), EXCEPT the lung fluid kept me from doing IL2 right now.
I am BRAF+, so that's my next step…
Praying you have a perfect ipi response and no side effects!
TracyLee
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- July 28, 2011 at 9:25 pm
Hi TracyLee,
Thanks for responding and answering some of my questions. How many lung nodules do you have?
I really hope you're a late responder and it's quite possible. I spoke with my oncologist yesterday and he told me that they're still trying to figure out how ipi works, which is why it's still in trials. There is a guy on this board who said ipi worked for him and his tumours continued to shrink as the months went by after his 4th dose. Everybody's immune system works differently, so not everyone will respond the same way. If you're not a responder, you're lucky you've got another option with Braf +. I think my plan C will be IL-2 or a clinical trial, but I'm praying to God I won't need to use Plan C 🙂
All the very best with your treatment. Keep believing!
Lisa
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- July 28, 2011 at 9:25 pm
Hi TracyLee,
Thanks for responding and answering some of my questions. How many lung nodules do you have?
I really hope you're a late responder and it's quite possible. I spoke with my oncologist yesterday and he told me that they're still trying to figure out how ipi works, which is why it's still in trials. There is a guy on this board who said ipi worked for him and his tumours continued to shrink as the months went by after his 4th dose. Everybody's immune system works differently, so not everyone will respond the same way. If you're not a responder, you're lucky you've got another option with Braf +. I think my plan C will be IL-2 or a clinical trial, but I'm praying to God I won't need to use Plan C 🙂
All the very best with your treatment. Keep believing!
Lisa
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- July 28, 2011 at 8:52 pm
Lisa,
I'm doing my 4th ipi dose tomorrow.
I didn't have any side effects until the 3rd dose, several days of nausea/dizziness. Very very mild itching, but no "ipi rash".
I have lung nodules, and only in the last 2 weeks have I had an issue with fluid. They just drained my lung yesterday, and I feel so much better! I had a cough, but had had a cold, terribly humid/oppressive heat, etc. So it's a bit hard to say if the cough was from the combination of everything, melanoma specific, so on.
Since you are BRAF-, have you done IL2? I know that would have been my next step (they don't think I'm responding to ipi, but I'm praying I'm a late response), EXCEPT the lung fluid kept me from doing IL2 right now.
I am BRAF+, so that's my next step…
Praying you have a perfect ipi response and no side effects!
TracyLee
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- July 29, 2011 at 3:18 am
Lisa, you will need to look at what might give you the greatest chance of achieving a
durable remission. Being BRAF negative limits your options, but it also forces one to
look at the bigger picture.Some people have had good results with IL-2 after having Yervoy, so that would be worth
some consideration.Lung nodules are a concern, but the bigger worry is metastasis. As I might have
mentioned before, I feel that the treatment at NIH is probably the best option for
anyone in your situation. They use a form of adoptive cell therapy (also called TIL
treatment). It may also be available elsewhere, but it is a very specialised procedure
that requires real expertise. A tumour sample is required, and I am not sure of the
eligibility criteria so you will need to check. Unfortunately, some travel might be
needed with this.Fluid in the lungs isn't normally a problem until the disease has progressed further,
but it is difficult to generalise.Take care
Frank from Australia
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- July 29, 2011 at 3:18 am
Lisa, you will need to look at what might give you the greatest chance of achieving a
durable remission. Being BRAF negative limits your options, but it also forces one to
look at the bigger picture.Some people have had good results with IL-2 after having Yervoy, so that would be worth
some consideration.Lung nodules are a concern, but the bigger worry is metastasis. As I might have
mentioned before, I feel that the treatment at NIH is probably the best option for
anyone in your situation. They use a form of adoptive cell therapy (also called TIL
treatment). It may also be available elsewhere, but it is a very specialised procedure
that requires real expertise. A tumour sample is required, and I am not sure of the
eligibility criteria so you will need to check. Unfortunately, some travel might be
needed with this.Fluid in the lungs isn't normally a problem until the disease has progressed further,
but it is difficult to generalise.Take care
Frank from Australia
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- July 29, 2011 at 12:39 pm
Hi Frank,
I shouldn't even be jumping to the "what ifs" if I'm not even there yet. My onc. had suggested IL-2 or a clinical trial if ipi doesn't work.
I hate that I have 15 lung nodules – would feel better if there were only 3 which could be removed during surgery. However, in 3 months, it hasn't gone anywhere else and all except 1 measure between 3mm-9mm. This is still considered low bulk disease with normal LDH and my onc. said this was a better prognosis. I do worry about it spreading, but I have to continue to believe that the ipi won't allow that. Even if ipi didn't work completely, it could get me to a place where I could have surgery – who knows!
I agree with you, having a durable remission is my main goal – next to being NED. Anything is possible and you just don't know what's going to happen. Right now, I'm healhy, symptom free and gearing up to celebrate my 41st birthday. I'm young in spirit, tenacious and do my very best to remain as optimisitc as possible. I know my situation isn't good, but I'm not going anywhere NOW and I'm not allowing myself to believe it will happen. So right now, I focus on the next plan and won't give up believing.
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- July 29, 2011 at 12:39 pm
Hi Frank,
I shouldn't even be jumping to the "what ifs" if I'm not even there yet. My onc. had suggested IL-2 or a clinical trial if ipi doesn't work.
I hate that I have 15 lung nodules – would feel better if there were only 3 which could be removed during surgery. However, in 3 months, it hasn't gone anywhere else and all except 1 measure between 3mm-9mm. This is still considered low bulk disease with normal LDH and my onc. said this was a better prognosis. I do worry about it spreading, but I have to continue to believe that the ipi won't allow that. Even if ipi didn't work completely, it could get me to a place where I could have surgery – who knows!
I agree with you, having a durable remission is my main goal – next to being NED. Anything is possible and you just don't know what's going to happen. Right now, I'm healhy, symptom free and gearing up to celebrate my 41st birthday. I'm young in spirit, tenacious and do my very best to remain as optimisitc as possible. I know my situation isn't good, but I'm not going anywhere NOW and I'm not allowing myself to believe it will happen. So right now, I focus on the next plan and won't give up believing.
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- July 29, 2011 at 12:44 pm
I agree with Frank about the TIL trials – but want to point out they are also available elsewhere (MD Anderson, Fred Hutchinson Cancer Care Alliance, etc.) and that they use IL-2 in the process. So if you are going to do IL-2 anyway, why not do it with the TILs? and if you qualify at NIH, treatment is free.
Secondly, my wife has lung tumors, but those were discovered after other locations of metastases. So it does matter if the lung mets are your primary or not. She has chosen to leave the lung tumors in place for now, as they represent the least harmful tumors at present. But you may chose to address them, as they can be removed surgically (using keyhole surgery method) or our radiation oncologist told us the Cyberknife could do the job – it adjusts to your breathing. But there is a point if they spread within the lung they become inoperable and can only be addressed by systemic therapy, which is what we were hoping for. The lung tumors are not the ones that will get my wife in the end.
best of luck to you.
Nick
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- July 29, 2011 at 12:44 pm
I agree with Frank about the TIL trials – but want to point out they are also available elsewhere (MD Anderson, Fred Hutchinson Cancer Care Alliance, etc.) and that they use IL-2 in the process. So if you are going to do IL-2 anyway, why not do it with the TILs? and if you qualify at NIH, treatment is free.
Secondly, my wife has lung tumors, but those were discovered after other locations of metastases. So it does matter if the lung mets are your primary or not. She has chosen to leave the lung tumors in place for now, as they represent the least harmful tumors at present. But you may chose to address them, as they can be removed surgically (using keyhole surgery method) or our radiation oncologist told us the Cyberknife could do the job – it adjusts to your breathing. But there is a point if they spread within the lung they become inoperable and can only be addressed by systemic therapy, which is what we were hoping for. The lung tumors are not the ones that will get my wife in the end.
best of luck to you.
Nick
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- July 29, 2011 at 1:02 pm
Hi Nick,
I will discuss the TIL treatment with my oncologists next week. I live in Toronto (Canada),so I would have to travel down there and have them plunk one of these mets out of my lungs. My primary was on my back and was removed in February – along with my groin lymph nodes. The mets in my lungs are secondary and you're right, if you have to spread, the lungs is a better option than most as they generally have a better prognosis. I may discuss surgery, but since I have 15, I don't even know if they could remove a few.
Best of luck with your wife – keep believing!!
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- July 29, 2011 at 1:02 pm
Hi Nick,
I will discuss the TIL treatment with my oncologists next week. I live in Toronto (Canada),so I would have to travel down there and have them plunk one of these mets out of my lungs. My primary was on my back and was removed in February – along with my groin lymph nodes. The mets in my lungs are secondary and you're right, if you have to spread, the lungs is a better option than most as they generally have a better prognosis. I may discuss surgery, but since I have 15, I don't even know if they could remove a few.
Best of luck with your wife – keep believing!!
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