› Forums › General Melanoma Community › IL2 Failed
- This topic has 15 replies, 5 voices, and was last updated 12 years, 1 month ago by
Kelly7.
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- April 1, 2012 at 4:08 am
It's been a tough two weeks – Jeff finished his final IL2 treatment on March 15th (did 19 bags total – it was brutal, but he was willing to endure anything to get a positive response). We were waiting and waiting (scan was scheduled for April 11th) to see some improvement in his overall condition, but he just seemed to be spiraling downward. He was so exhausted, nauseated and pale – it was getting scary. He finally went to the hospital on Thursday (the 29th) because he had a fever and we were worried about hepatitis (he looked jaundiced).
It's been a tough two weeks – Jeff finished his final IL2 treatment on March 15th (did 19 bags total – it was brutal, but he was willing to endure anything to get a positive response). We were waiting and waiting (scan was scheduled for April 11th) to see some improvement in his overall condition, but he just seemed to be spiraling downward. He was so exhausted, nauseated and pale – it was getting scary. He finally went to the hospital on Thursday (the 29th) because he had a fever and we were worried about hepatitis (he looked jaundiced). Doc didn't like the way he looked, so Jeff had an early scan. Tumor progression in the liver – serious and fast progression…
He is now on Zelboraf. He seems better, but he's been on it for just a few days (2 to be exact). Can it work that fast?
I am worried about what to do next. What will we do if the Zelboraf stops working? How much time will we have to get him into another treatment? What are our options – ippi and anti-PD1 might take too long to work for him – his cancer is aggressive. We are trying to cover our bases – 2nd opinion scheduled at Moffit (hoping to find out more about the XL888 study) and have contacted UCLA about Dr. Lo's DNA sequencing work on Zelboraf resistance.
This site has been so important to us – we read it everyday and are inspired by so many positive stories. Thanks in advance for any advice.
Jeff's Mom
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- April 1, 2012 at 6:04 am
Hi Im sorry to hear that Jeff's health has been declining, liver mets when progressing are very dangerous. My dad has four in in liver as well as other places and he was on Zeboraf for 7 months and yes it does start working very fast. Unfortunately for most people melanoma becomes resistent to Zelboraf which has happened to my dad. His recent 7 months scan revealed a new lesion, grown in some old lesions, but for the moment the liver stable. We are in Australia looking for trials but we have very few here. I think it's really good that you are looking beyond Zelboraf treatment wise because it's not durable. Some on this board are having a longterm response which is encouraging, but they are a minority Im afraid. Hopefully the drug is kicking in immediately and will continue to shrink those liver mets. I was one of those who hoped this drug would keep my dad going for years and I didn't really plan beyond it hoping that XL888 would be availble. We don't even have Antipd1 here yet so Dad is staying on Zelboraf and they are adding MEK to it.
After that who knows.
I really hope Jeff get's relief and keep up the research have plan CDE reading to go.
Take care and let us know how is going.
Nahmi from Melbourne
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- April 1, 2012 at 6:04 am
Hi Im sorry to hear that Jeff's health has been declining, liver mets when progressing are very dangerous. My dad has four in in liver as well as other places and he was on Zeboraf for 7 months and yes it does start working very fast. Unfortunately for most people melanoma becomes resistent to Zelboraf which has happened to my dad. His recent 7 months scan revealed a new lesion, grown in some old lesions, but for the moment the liver stable. We are in Australia looking for trials but we have very few here. I think it's really good that you are looking beyond Zelboraf treatment wise because it's not durable. Some on this board are having a longterm response which is encouraging, but they are a minority Im afraid. Hopefully the drug is kicking in immediately and will continue to shrink those liver mets. I was one of those who hoped this drug would keep my dad going for years and I didn't really plan beyond it hoping that XL888 would be availble. We don't even have Antipd1 here yet so Dad is staying on Zelboraf and they are adding MEK to it.
After that who knows.
I really hope Jeff get's relief and keep up the research have plan CDE reading to go.
Take care and let us know how is going.
Nahmi from Melbourne
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- April 1, 2012 at 6:04 am
Hi Im sorry to hear that Jeff's health has been declining, liver mets when progressing are very dangerous. My dad has four in in liver as well as other places and he was on Zeboraf for 7 months and yes it does start working very fast. Unfortunately for most people melanoma becomes resistent to Zelboraf which has happened to my dad. His recent 7 months scan revealed a new lesion, grown in some old lesions, but for the moment the liver stable. We are in Australia looking for trials but we have very few here. I think it's really good that you are looking beyond Zelboraf treatment wise because it's not durable. Some on this board are having a longterm response which is encouraging, but they are a minority Im afraid. Hopefully the drug is kicking in immediately and will continue to shrink those liver mets. I was one of those who hoped this drug would keep my dad going for years and I didn't really plan beyond it hoping that XL888 would be availble. We don't even have Antipd1 here yet so Dad is staying on Zelboraf and they are adding MEK to it.
After that who knows.
I really hope Jeff get's relief and keep up the research have plan CDE reading to go.
Take care and let us know how is going.
Nahmi from Melbourne
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- April 1, 2012 at 1:50 pm
Is Jeff stll with Dr. Kaufman? He tried a chemo combination on Will that helped slow down the liver mets (Will was, unfortunately, just too generally sick to survive the combination of compromised liver and the toxicity of the chemo, but the chemo WAS working on the liver mets), that is one thing we were trying to slow things down enough to qualify for a different treatment. It might be worth considering. Thinking of you all….
Lori
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- April 1, 2012 at 4:26 pm
Dang it, I am sorry the IL2 didn't have better results for Jeff. So confusing how it works for one and then not another, and frustrating! I will pray the Zelboraf does it magic and gives you plenty of time to seek another avenue of treatment. Good luck at Moffit for the 2nd opinion. I think that is great you are able to do that…I would love to have done that! Big hugs.
Karin
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- April 1, 2012 at 4:26 pm
Dang it, I am sorry the IL2 didn't have better results for Jeff. So confusing how it works for one and then not another, and frustrating! I will pray the Zelboraf does it magic and gives you plenty of time to seek another avenue of treatment. Good luck at Moffit for the 2nd opinion. I think that is great you are able to do that…I would love to have done that! Big hugs.
Karin
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- April 1, 2012 at 4:26 pm
Dang it, I am sorry the IL2 didn't have better results for Jeff. So confusing how it works for one and then not another, and frustrating! I will pray the Zelboraf does it magic and gives you plenty of time to seek another avenue of treatment. Good luck at Moffit for the 2nd opinion. I think that is great you are able to do that…I would love to have done that! Big hugs.
Karin
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- April 1, 2012 at 5:00 pm
Yes – Dr. Kaufman suggested liver infusion if the Zelboraf doesn’t work. We would probably go to NIH for that if necessary – Dr. Hughes is an expert. But, if Jeff is too sick to travel, we would do it here at Rush.I read about Will…he was so lucky to have you as his caregiver.
Bridgette (Jeff’s Mom)
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- April 1, 2012 at 5:00 pm
Yes – Dr. Kaufman suggested liver infusion if the Zelboraf doesn’t work. We would probably go to NIH for that if necessary – Dr. Hughes is an expert. But, if Jeff is too sick to travel, we would do it here at Rush.I read about Will…he was so lucky to have you as his caregiver.
Bridgette (Jeff’s Mom)
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- April 1, 2012 at 5:00 pm
Yes – Dr. Kaufman suggested liver infusion if the Zelboraf doesn’t work. We would probably go to NIH for that if necessary – Dr. Hughes is an expert. But, if Jeff is too sick to travel, we would do it here at Rush.I read about Will…he was so lucky to have you as his caregiver.
Bridgette (Jeff’s Mom)
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- April 1, 2012 at 1:50 pm
Is Jeff stll with Dr. Kaufman? He tried a chemo combination on Will that helped slow down the liver mets (Will was, unfortunately, just too generally sick to survive the combination of compromised liver and the toxicity of the chemo, but the chemo WAS working on the liver mets), that is one thing we were trying to slow things down enough to qualify for a different treatment. It might be worth considering. Thinking of you all….
Lori
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- April 1, 2012 at 1:50 pm
Is Jeff stll with Dr. Kaufman? He tried a chemo combination on Will that helped slow down the liver mets (Will was, unfortunately, just too generally sick to survive the combination of compromised liver and the toxicity of the chemo, but the chemo WAS working on the liver mets), that is one thing we were trying to slow things down enough to qualify for a different treatment. It might be worth considering. Thinking of you all….
Lori
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