› Forums › General Melanoma Community › HELP- ipi vs. E-7080 clinical trial? Liver Mets.
- This topic has 38 replies, 7 voices, and was last updated 13 years, 5 months ago by
Banu.
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- March 29, 2011 at 11:48 pm
Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph. He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other?
Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph. He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other? I just feel like one of the two are his last option, he is getting very sick, and I just don't want to make the wrong decision on treatment. Please help!
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- March 30, 2011 at 5:40 pm
If you go back about 6 pages, you will see a post by someone called "vickirs" who is on E7080. It is dated 3/3/11, and the last comment on 3/22/11. There is a response from someone named Elizabeth Peters whose hunband is on this drug for brain cancer as well. Other than that, I do not believe anyone else here is currently on this trial/drug but you can also do a search as well.
Perhaps you can contact one or both of them.
Good luck,
Michael
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- March 30, 2011 at 5:40 pm
If you go back about 6 pages, you will see a post by someone called "vickirs" who is on E7080. It is dated 3/3/11, and the last comment on 3/22/11. There is a response from someone named Elizabeth Peters whose hunband is on this drug for brain cancer as well. Other than that, I do not believe anyone else here is currently on this trial/drug but you can also do a search as well.
Perhaps you can contact one or both of them.
Good luck,
Michael
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- March 31, 2011 at 4:48 am
I am on E7080 and I have responded quickly to it. I know there are several others at my clinic that are having the same results. I noticed a change in my liver first. I no longer prodtrudes out of my side. I started E7080 after failing ipi and was very close to calling hospice in. I was pratically wheel chair bound and hadn't been out of my house for 2 months before starting the drug. Good luck on your choice and whatever drug you choose do not regret your decision.
Vicki
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- April 1, 2011 at 1:46 am
I'm so glad you're responding to something! I really appreciate the time you took to write this. You said you were almost wheel-chair bound? That is exactly how Doug is, but his oncology nurse is saying they won't aprove him for the trial if he isn't in a pretty healthy-looking state. Is this true??
Thanks again,
Netlla
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- April 1, 2011 at 2:16 am
I never heard that you had to look healthy to be on the trial. I know i looked like shit. When I started to trial i was….
in bed 75% of the day – now it is about 40 % the medicine really does make you tired
on morphine, dialated, oxy – now i only take oxy
unable to cook or clean house – now i piddle around some but still have help
unable to stand straight up for more than just a few minutes had to be hunched over – does not effect me anymore
had my liver buldging out of my side – still rigid but does not buldge at all
could not take shower without sitting down on stool – no longer true
So, you see I was really in pretty bad shape. I am on my 2nd month, 3rd week of e7080 and get scans on 8th and results on 13th.
Good Luck with your decision
Vicki
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- April 1, 2011 at 2:16 am
I never heard that you had to look healthy to be on the trial. I know i looked like shit. When I started to trial i was….
in bed 75% of the day – now it is about 40 % the medicine really does make you tired
on morphine, dialated, oxy – now i only take oxy
unable to cook or clean house – now i piddle around some but still have help
unable to stand straight up for more than just a few minutes had to be hunched over – does not effect me anymore
had my liver buldging out of my side – still rigid but does not buldge at all
could not take shower without sitting down on stool – no longer true
So, you see I was really in pretty bad shape. I am on my 2nd month, 3rd week of e7080 and get scans on 8th and results on 13th.
Good Luck with your decision
Vicki
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- April 1, 2011 at 1:46 am
I'm so glad you're responding to something! I really appreciate the time you took to write this. You said you were almost wheel-chair bound? That is exactly how Doug is, but his oncology nurse is saying they won't aprove him for the trial if he isn't in a pretty healthy-looking state. Is this true??
Thanks again,
Netlla
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- April 1, 2011 at 2:21 am
What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again!
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- April 1, 2011 at 2:21 am
What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again!
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- April 1, 2011 at 2:21 am
What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again!
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- April 3, 2011 at 7:33 pm
Dear Vickie,
He did not start ipi on Friday. The doctor told him he was too weak to start this. So, they admitted him and he had IV fluids and an IV antibiotic ran in order to try to get him stronger. My honest opinion is that his current doctor will not do any treatment for him, which is very sad. He told Doug that he probably had two weeks left and this was very hard for Doug to hear, of course. However, my step-dad is a fighter and he informed his Dr. that he was not giving up just yet.
Your story was very inspirational to me, because it reminded me a lot of the current state my step-father is in. At this point, we would go anywhere to get him the treatment with the E-7080. No one is returning my phone call from the Esia company, though. I've even left two messages with the supervisor of the company. Do you think I could call your physician and see if Doug sounds like he could get started on this drug? We would fly him to Denver if we had to. Would it be too much to ask to get Dr. Gonzalez's contact information?
Thanks again you have been more help than you'll ever know!
-Netlla
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- April 3, 2011 at 7:33 pm
Dear Vickie,
He did not start ipi on Friday. The doctor told him he was too weak to start this. So, they admitted him and he had IV fluids and an IV antibiotic ran in order to try to get him stronger. My honest opinion is that his current doctor will not do any treatment for him, which is very sad. He told Doug that he probably had two weeks left and this was very hard for Doug to hear, of course. However, my step-dad is a fighter and he informed his Dr. that he was not giving up just yet.
Your story was very inspirational to me, because it reminded me a lot of the current state my step-father is in. At this point, we would go anywhere to get him the treatment with the E-7080. No one is returning my phone call from the Esia company, though. I've even left two messages with the supervisor of the company. Do you think I could call your physician and see if Doug sounds like he could get started on this drug? We would fly him to Denver if we had to. Would it be too much to ask to get Dr. Gonzalez's contact information?
Thanks again you have been more help than you'll ever know!
-Netlla
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- April 1, 2011 at 2:21 am
What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again!
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- March 31, 2011 at 4:48 am
I am on E7080 and I have responded quickly to it. I know there are several others at my clinic that are having the same results. I noticed a change in my liver first. I no longer prodtrudes out of my side. I started E7080 after failing ipi and was very close to calling hospice in. I was pratically wheel chair bound and hadn't been out of my house for 2 months before starting the drug. Good luck on your choice and whatever drug you choose do not regret your decision.
Vicki
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- March 31, 2011 at 5:25 am
Hello, You may want to research the huge side effects of ippi. You have stated that he is "very sick",
possibly the side effect would be too harsh on him? The reason that ippi was delayed in FDA approval was to make sure a checklist/warning was provided to the doctors and care takers about what to watch for when ippi was used. There is a drug PLX4032 that may be helpful at his stage. This is only a SUGGESTION, do your homework to see if this will work for you.
Best wishes,
Gene
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- April 1, 2011 at 1:15 am
Dear Gene,
The Doctor is saying that the ipi doesn't have that many side effects, but I have read that it causes fatique and loss of appetite. I would prefer him to take the E-7080, as I am hearing good things about this drug.
He is not a candidate for the PLX4032, since he is BRAF-negative. I already tried that path as well. Thank you for your kind words and suggestion. I take them very seriously!
Best regards,
Netlla
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- April 1, 2011 at 1:15 am
Dear Gene,
The Doctor is saying that the ipi doesn't have that many side effects, but I have read that it causes fatique and loss of appetite. I would prefer him to take the E-7080, as I am hearing good things about this drug.
He is not a candidate for the PLX4032, since he is BRAF-negative. I already tried that path as well. Thank you for your kind words and suggestion. I take them very seriously!
Best regards,
Netlla
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- April 1, 2011 at 5:20 am
Hello Netlla,
I am not fimilar with E-7080 at all,sorry! I am stage IV (liver mets) and started ippi recently.
I am doing great after the second treatment. My oncologist is featured in this video
http://www.youtube.com/watch?v=0Q6kkQJGeT8
He mentions about the hard side effects of ippi towards the end of the video.
In my case he has given me his cell phone number with specific instructions to call him
at any time if any side effects arise.
Wishing you the best with your choice of treatments.
Gene
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- April 3, 2011 at 7:38 pm
Thank you so much, Gene. It was great to hear that someone is having success with the ippi. Doug was unable to start this form of treatment though afterall. The doctor told him he was too weak to start this treatment and gave him 2 weeks. It's very discouraging. My step-father told him that he was not going to give up just yet, so we are still in search of something for him. He has been in the hospital since Friday. It looked like he was doing better yesterday, but today his vitals were all very low and he is having shortness of breath, so I know his physician will not go ahead and start this treatment. Thanks again for your encouraging words and the link. VERY helpful to know.
Thanks again,
Netlla
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- April 3, 2011 at 7:38 pm
Thank you so much, Gene. It was great to hear that someone is having success with the ippi. Doug was unable to start this form of treatment though afterall. The doctor told him he was too weak to start this treatment and gave him 2 weeks. It's very discouraging. My step-father told him that he was not going to give up just yet, so we are still in search of something for him. He has been in the hospital since Friday. It looked like he was doing better yesterday, but today his vitals were all very low and he is having shortness of breath, so I know his physician will not go ahead and start this treatment. Thanks again for your encouraging words and the link. VERY helpful to know.
Thanks again,
Netlla
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- April 1, 2011 at 5:20 am
Hello Netlla,
I am not fimilar with E-7080 at all,sorry! I am stage IV (liver mets) and started ippi recently.
I am doing great after the second treatment. My oncologist is featured in this video
http://www.youtube.com/watch?v=0Q6kkQJGeT8
He mentions about the hard side effects of ippi towards the end of the video.
In my case he has given me his cell phone number with specific instructions to call him
at any time if any side effects arise.
Wishing you the best with your choice of treatments.
Gene
-
- March 31, 2011 at 5:25 am
Hello, You may want to research the huge side effects of ippi. You have stated that he is "very sick",
possibly the side effect would be too harsh on him? The reason that ippi was delayed in FDA approval was to make sure a checklist/warning was provided to the doctors and care takers about what to watch for when ippi was used. There is a drug PLX4032 that may be helpful at his stage. This is only a SUGGESTION, do your homework to see if this will work for you.
Best wishes,
Gene
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- April 2, 2011 at 2:36 am
You mention that your step-father has liver and lung mets. My biggest concern at the moment is the condition of his liver. Has he had any liver function tests done recently? If so, what did the doctor say about his condition?
Frank
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- April 3, 2011 at 7:41 pm
His liver enzymes are elevated now, they had not previously been. He has a peritoneal catheter and they drain 1,000 CC of fluid from his stomach daily. He is not doing too well as of now. His vitals are all low and he is having shortness of breath today. We're hoping he can get strong in order to pursue some form of treatment. Thanks for your concern.
-Netlla
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- April 4, 2011 at 12:39 pm
Unfortunately, it sounds like your step-father could be in the early stages
of acute liver failure (see:
http://www.mayoclinic.com/health/liver-failure/DS00961).My late wife had liver mets, so I have some idea of what he could be going
through. I hope that his doctor is able to offer some advice that will be
helpful.Frank
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- April 4, 2011 at 12:39 pm
Unfortunately, it sounds like your step-father could be in the early stages
of acute liver failure (see:
http://www.mayoclinic.com/health/liver-failure/DS00961).My late wife had liver mets, so I have some idea of what he could be going
through. I hope that his doctor is able to offer some advice that will be
helpful.Frank
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- April 3, 2011 at 7:41 pm
His liver enzymes are elevated now, they had not previously been. He has a peritoneal catheter and they drain 1,000 CC of fluid from his stomach daily. He is not doing too well as of now. His vitals are all low and he is having shortness of breath today. We're hoping he can get strong in order to pursue some form of treatment. Thanks for your concern.
-Netlla
-
- April 2, 2011 at 2:36 am
You mention that your step-father has liver and lung mets. My biggest concern at the moment is the condition of his liver. Has he had any liver function tests done recently? If so, what did the doctor say about his condition?
Frank
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- July 11, 2011 at 7:14 am
Hi Nettla,
I wanted to check with you what your father in law decided in terms of treatment and how his treatment is going. My father is 75 and a doctor at the hospital suggested that he call hospice because his prognosis is poor. She said that they should not resuscitate him, if needed, because it is better for him to die of a heart attack than endure cancer. Sometimes I feel like elderly patients don't get the same treatment and seem to be dispensable.
I need to get my father strong and out of the hospital, so that he can qualify for some treatments. I know the odds are slim, but I don't want to give up hope.
I hope that things worked out well for your father in law. In any case, he is very lucky to have a caring person like you in his life.
All the best,
Banu
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- July 11, 2011 at 7:14 am
Hi Nettla,
I wanted to check with you what your father in law decided in terms of treatment and how his treatment is going. My father is 75 and a doctor at the hospital suggested that he call hospice because his prognosis is poor. She said that they should not resuscitate him, if needed, because it is better for him to die of a heart attack than endure cancer. Sometimes I feel like elderly patients don't get the same treatment and seem to be dispensable.
I need to get my father strong and out of the hospital, so that he can qualify for some treatments. I know the odds are slim, but I don't want to give up hope.
I hope that things worked out well for your father in law. In any case, he is very lucky to have a caring person like you in his life.
All the best,
Banu
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