› Forums › General Melanoma Community › Yervoy: Has anyone progressed on or after yervoy infusions???
- This topic has 33 replies, 7 voices, and was last updated 12 years, 6 months ago by Kathy of Massachusetts.
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- May 8, 2012 at 6:46 pm
Hi Everyone who reads this. I have been reviewing the posts and think I know the answer to my question. I would like to hear input/advice to anyone who has progressed with mets or have their mets become larger while receiving yervoy or after they finished infusions. Appreciate the feedback and hopefully it can help others understand this drug. I see may posts about yervoy and many feel confused about this drug. I understand what it does but since there is not much on post market studies, We have to rely on each other to get some sense on how this drug works/res
Hi Everyone who reads this. I have been reviewing the posts and think I know the answer to my question. I would like to hear input/advice to anyone who has progressed with mets or have their mets become larger while receiving yervoy or after they finished infusions. Appreciate the feedback and hopefully it can help others understand this drug. I see may posts about yervoy and many feel confused about this drug. I understand what it does but since there is not much on post market studies, We have to rely on each other to get some sense on how this drug works/responds. Appreciate any feedback.
Susan
- Replies
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- May 8, 2012 at 6:51 pm
My husband was stage 3 NED before he started ipi. He has now progressed to stage 4 with met to spine, pelvis, lung and rib.
Our thinking is that the ipi highlighted what was already there but not able to be seen prior to ipi.
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- May 8, 2012 at 7:28 pm
I did progress after ipi. Thankfully still stage IIIc, but marked spreading of sattelite mets. Also progressed after IL-2, to which I was thought to be responding, so I got to go back and do it again. However, I just posted an update on my Yervoy reinduction…I don't know what will happen after, but for right now, my visible disease is regressing.
hope this helps,
karen
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- May 8, 2012 at 10:33 pm
Since it can take many weeks for IPI to kick in I say yes. I was started on IPI in august 2011 and had the first, second and third infusion so 6 weeks but my disease continued to progress so IPI was stopped and zelboraf was started. By the end of Dec. my hair which had fallen out due to radiation was beginning to grow back all white so it was determined I was probably a late responder to the IPI and when my liver numbers began to climb in March so I was approved to be reintroduced to 4 rds of ipi. .i am due for my third IPI in two days. My eye brows are now white too. -
- May 8, 2012 at 10:33 pm
Since it can take many weeks for IPI to kick in I say yes. I was started on IPI in august 2011 and had the first, second and third infusion so 6 weeks but my disease continued to progress so IPI was stopped and zelboraf was started. By the end of Dec. my hair which had fallen out due to radiation was beginning to grow back all white so it was determined I was probably a late responder to the IPI and when my liver numbers began to climb in March so I was approved to be reintroduced to 4 rds of ipi. .i am due for my third IPI in two days. My eye brows are now white too. -
- May 8, 2012 at 10:33 pm
Since it can take many weeks for IPI to kick in I say yes. I was started on IPI in august 2011 and had the first, second and third infusion so 6 weeks but my disease continued to progress so IPI was stopped and zelboraf was started. By the end of Dec. my hair which had fallen out due to radiation was beginning to grow back all white so it was determined I was probably a late responder to the IPI and when my liver numbers began to climb in March so I was approved to be reintroduced to 4 rds of ipi. .i am due for my third IPI in two days. My eye brows are now white too. -
- May 12, 2012 at 3:29 pm
Karen, when did you have initial IPI treatment and how long before reinduction? I responded extremely well to the IPI, w exception to the 4 baseball sized mets in my bowel, which were surgically removed. Am now NED, finished IPI January 8. As side effects were bearable, I’d love to be able to rein duct whe/if necessary… Thanks! -
- May 12, 2012 at 3:29 pm
Karen, when did you have initial IPI treatment and how long before reinduction? I responded extremely well to the IPI, w exception to the 4 baseball sized mets in my bowel, which were surgically removed. Am now NED, finished IPI January 8. As side effects were bearable, I’d love to be able to rein duct whe/if necessary… Thanks! -
- May 12, 2012 at 3:29 pm
Karen, when did you have initial IPI treatment and how long before reinduction? I responded extremely well to the IPI, w exception to the 4 baseball sized mets in my bowel, which were surgically removed. Am now NED, finished IPI January 8. As side effects were bearable, I’d love to be able to rein duct whe/if necessary… Thanks! -
- May 8, 2012 at 7:28 pm
I did progress after ipi. Thankfully still stage IIIc, but marked spreading of sattelite mets. Also progressed after IL-2, to which I was thought to be responding, so I got to go back and do it again. However, I just posted an update on my Yervoy reinduction…I don't know what will happen after, but for right now, my visible disease is regressing.
hope this helps,
karen
-
- May 8, 2012 at 7:28 pm
I did progress after ipi. Thankfully still stage IIIc, but marked spreading of sattelite mets. Also progressed after IL-2, to which I was thought to be responding, so I got to go back and do it again. However, I just posted an update on my Yervoy reinduction…I don't know what will happen after, but for right now, my visible disease is regressing.
hope this helps,
karen
-
- May 8, 2012 at 6:51 pm
My husband was stage 3 NED before he started ipi. He has now progressed to stage 4 with met to spine, pelvis, lung and rib.
Our thinking is that the ipi highlighted what was already there but not able to be seen prior to ipi.
-
- May 8, 2012 at 6:51 pm
My husband was stage 3 NED before he started ipi. He has now progressed to stage 4 with met to spine, pelvis, lung and rib.
Our thinking is that the ipi highlighted what was already there but not able to be seen prior to ipi.
-
- May 8, 2012 at 11:52 pm
My lung & liver mets grew while on ipi but not much. They apparently are slow growing. I'm on anti-PD1 now. Remember, all our stories are just anecdotal evidence and not scientific data. I would rely on a trained professional for yes or no advice.
Dan
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- May 8, 2012 at 11:52 pm
My lung & liver mets grew while on ipi but not much. They apparently are slow growing. I'm on anti-PD1 now. Remember, all our stories are just anecdotal evidence and not scientific data. I would rely on a trained professional for yes or no advice.
Dan
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- May 9, 2012 at 12:16 pm
Thanks Dan. Hope you post great response to your response on the trial. I agree about the posts not evidence proof. Sometimes the best docs don't know either unless they get feedback from patients. Many don't know what yervoy will do unless they have 5 yrs. post market studies done. if you hear some of the stories posted it can sometimes give you hope or an idea what to experience on the drug…esp. when no treatment is wiping melanoma out by more than 20 %….all the treatments show stinky results in my eyes/opinion. I hope I am wrong…….
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- May 9, 2012 at 12:16 pm
Thanks Dan. Hope you post great response to your response on the trial. I agree about the posts not evidence proof. Sometimes the best docs don't know either unless they get feedback from patients. Many don't know what yervoy will do unless they have 5 yrs. post market studies done. if you hear some of the stories posted it can sometimes give you hope or an idea what to experience on the drug…esp. when no treatment is wiping melanoma out by more than 20 %….all the treatments show stinky results in my eyes/opinion. I hope I am wrong…….
-
- May 9, 2012 at 12:16 pm
Thanks Dan. Hope you post great response to your response on the trial. I agree about the posts not evidence proof. Sometimes the best docs don't know either unless they get feedback from patients. Many don't know what yervoy will do unless they have 5 yrs. post market studies done. if you hear some of the stories posted it can sometimes give you hope or an idea what to experience on the drug…esp. when no treatment is wiping melanoma out by more than 20 %….all the treatments show stinky results in my eyes/opinion. I hope I am wrong…….
-
- May 8, 2012 at 11:52 pm
My lung & liver mets grew while on ipi but not much. They apparently are slow growing. I'm on anti-PD1 now. Remember, all our stories are just anecdotal evidence and not scientific data. I would rely on a trained professional for yes or no advice.
Dan
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- May 15, 2012 at 4:22 pm
Hello to all,
My wonderful husband who is 80, still working, exercises daily, has trainer and cycles twice weekly, has had face and arm melanomas, was diagnosed 12-11 with melanoma of lung and brain, he was treated with the new to our area CyberKnife radiation therapy which we cannot say enough good about,3 to the lung and one to brain, then Yervoy every 3wks, 4 times. He did spectacular with everything, no side effects whatsoever, and approx. 4 days after last infusion, was hit with fatigue that has kept him from doing anything, has some dizziness with it. Friday, 5-11-12, had ct scans, Mri's and will be followed up with Doc on 5-16, just wondered if anyone else had this side effect and any info … lab results from 5-9 were all normal with only slight thyroid change, how long did it last? There does not seem to be much info out there on it.
Hope I am following correct format, I am a newbie,
Our thoughts and prayers go out to all and many well wishes.
Susan
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- May 15, 2012 at 7:33 pm
I have experienced 3 infusions of Yervoy in fall of 2011. I then was started on Zelboraf to stop disease progression. In march of 2012 brain mets along with rising liver numbers indicated Zelboraf may be in the process of failing. So I was reintroduced to ipi at this point I am down 3 infusions with the fourth due may 31 , 2012. I have discovered I react strongly to IPI rashes, fatigue dizziness etc. first go round was more difficult. But I am noticing that as my infusions continue each one hits me a little harder weakness, dizziness. By the third week I start to feel more normal so one more infusion to go. As long as it works I will wobble like a webble. Past experience has shown it will fade and I will be out walking the dog again very soon.
Best of luck to you and your husband. Please remember thesis my personal experience and you may want to talk to your dr about it.
Kathy D -
- May 15, 2012 at 7:33 pm
I have experienced 3 infusions of Yervoy in fall of 2011. I then was started on Zelboraf to stop disease progression. In march of 2012 brain mets along with rising liver numbers indicated Zelboraf may be in the process of failing. So I was reintroduced to ipi at this point I am down 3 infusions with the fourth due may 31 , 2012. I have discovered I react strongly to IPI rashes, fatigue dizziness etc. first go round was more difficult. But I am noticing that as my infusions continue each one hits me a little harder weakness, dizziness. By the third week I start to feel more normal so one more infusion to go. As long as it works I will wobble like a webble. Past experience has shown it will fade and I will be out walking the dog again very soon.
Best of luck to you and your husband. Please remember thesis my personal experience and you may want to talk to your dr about it.
Kathy D -
- May 15, 2012 at 7:33 pm
I have experienced 3 infusions of Yervoy in fall of 2011. I then was started on Zelboraf to stop disease progression. In march of 2012 brain mets along with rising liver numbers indicated Zelboraf may be in the process of failing. So I was reintroduced to ipi at this point I am down 3 infusions with the fourth due may 31 , 2012. I have discovered I react strongly to IPI rashes, fatigue dizziness etc. first go round was more difficult. But I am noticing that as my infusions continue each one hits me a little harder weakness, dizziness. By the third week I start to feel more normal so one more infusion to go. As long as it works I will wobble like a webble. Past experience has shown it will fade and I will be out walking the dog again very soon.
Best of luck to you and your husband. Please remember thesis my personal experience and you may want to talk to your dr about it.
Kathy D
-
- May 15, 2012 at 4:22 pm
Hello to all,
My wonderful husband who is 80, still working, exercises daily, has trainer and cycles twice weekly, has had face and arm melanomas, was diagnosed 12-11 with melanoma of lung and brain, he was treated with the new to our area CyberKnife radiation therapy which we cannot say enough good about,3 to the lung and one to brain, then Yervoy every 3wks, 4 times. He did spectacular with everything, no side effects whatsoever, and approx. 4 days after last infusion, was hit with fatigue that has kept him from doing anything, has some dizziness with it. Friday, 5-11-12, had ct scans, Mri's and will be followed up with Doc on 5-16, just wondered if anyone else had this side effect and any info … lab results from 5-9 were all normal with only slight thyroid change, how long did it last? There does not seem to be much info out there on it.
Hope I am following correct format, I am a newbie,
Our thoughts and prayers go out to all and many well wishes.
Susan
-
- May 15, 2012 at 4:22 pm
Hello to all,
My wonderful husband who is 80, still working, exercises daily, has trainer and cycles twice weekly, has had face and arm melanomas, was diagnosed 12-11 with melanoma of lung and brain, he was treated with the new to our area CyberKnife radiation therapy which we cannot say enough good about,3 to the lung and one to brain, then Yervoy every 3wks, 4 times. He did spectacular with everything, no side effects whatsoever, and approx. 4 days after last infusion, was hit with fatigue that has kept him from doing anything, has some dizziness with it. Friday, 5-11-12, had ct scans, Mri's and will be followed up with Doc on 5-16, just wondered if anyone else had this side effect and any info … lab results from 5-9 were all normal with only slight thyroid change, how long did it last? There does not seem to be much info out there on it.
Hope I am following correct format, I am a newbie,
Our thoughts and prayers go out to all and many well wishes.
Susan
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