HOW WELL IS YERVOY WORKING

This topic has 28 replies, 8 voices, and was last updated 12 years, 7 months ago by Gene_S.

Post

- September 27, 2011 at 12:07 pm
- Quote
j.m.l.
Participant
I have been given the first infusion of IPI. Next one in 2 wks. Side effects manageable. DOES ANYONE HAVE INFO ON THE GOOD EFFECTS OF THIS DRUG. IS IT WORKING FOR YOU. The last tumor is inoperable bec. it lies on a vein.

many thanks

I have been given the first infusion of IPI. Next one in 2 wks. Side effects manageable. DOES ANYONE HAVE INFO ON THE GOOD EFFECTS OF THIS DRUG. IS IT WORKING FOR YOU. The last tumor is inoperable bec. it lies on a vein.

many thanks

Viewing 19 reply threads

Replies

- - September 27, 2011 at 12:13 pm
  - Quote
  Joyce
  Participant
  Dick took ipi when it was known as anti-ctla4. He has been Ned since 2006!
- - September 27, 2011 at 12:13 pm
  - Quote
  Joyce
  Participant
  Dick took ipi when it was known as anti-ctla4. He has been Ned since 2006!
- - September 27, 2011 at 12:14 pm
  - Quote
  Joyce
  Participant
  Dick took ipi when it was known as anti-ctla4. He has been Ned since 2006!
- - September 27, 2011 at 12:14 pm
  - Quote
  Joyce
  Participant
  Dick took ipi when it was known as anti-ctla4. He has been Ned since 2006!
- - September 27, 2011 at 2:11 pm
  - Quote
  Lisa13
  Participant
  I just had my 3rd infusion last Thursday and have had very limited symptoms throughout. I had a mild rash on my chest in the beginning, itchy skin and that's about it. My Dr. told me last week that symptoms have no bearing on how well the drug is working – everyone is very different.
  
  I don't know how the drug is working since I don't have scans until October 31st. My bloodwork is normal and better than the last round so I can only hope it's doing it's job.
  
  Best of luck with this treatment!
  
  Lisa – Stage 4 lung mets
- - September 27, 2011 at 2:11 pm
  - Quote
  Lisa13
  Participant
  I just had my 3rd infusion last Thursday and have had very limited symptoms throughout. I had a mild rash on my chest in the beginning, itchy skin and that's about it. My Dr. told me last week that symptoms have no bearing on how well the drug is working – everyone is very different.
  
  I don't know how the drug is working since I don't have scans until October 31st. My bloodwork is normal and better than the last round so I can only hope it's doing it's job.
  
  Best of luck with this treatment!
  
  Lisa – Stage 4 lung mets
- - September 27, 2011 at 2:21 pm
  - Quote
  mombase
  Participant
  Have my first infusion today…hoping and praying for great results for me and everyone else taking this drug!
  
  Cristy, Stage IV
- - September 27, 2011 at 2:21 pm
  - Quote
  mombase
  Participant
  Have my first infusion today…hoping and praying for great results for me and everyone else taking this drug!
  
  Cristy, Stage IV
- - September 28, 2011 at 12:10 am
  - Quote
  Tracy Seattle
  Participant
  I have had 2 infusions and so far so good. Have had rashes that have come and gone. The most significant was a rash that looked like a sunburn on my torso. They have all lasted a matter of hours at most. I can feel my tumor in my clavical lymph nodes and they do not feel like it has gone down thus far. My doctor said that some people experience side effects around the third infusion and that the drug can take up to several weeks to work after last infusion. I was really nervous in the begining due to side effects risks. Reading this site helped me take the "leap" and give it a try and I am happy that I did. Looking forward to the Ipi working some magic on me!!!
- - September 28, 2011 at 12:10 am
  - Quote
  Tracy Seattle
  Participant
  I have had 2 infusions and so far so good. Have had rashes that have come and gone. The most significant was a rash that looked like a sunburn on my torso. They have all lasted a matter of hours at most. I can feel my tumor in my clavical lymph nodes and they do not feel like it has gone down thus far. My doctor said that some people experience side effects around the third infusion and that the drug can take up to several weeks to work after last infusion. I was really nervous in the begining due to side effects risks. Reading this site helped me take the "leap" and give it a try and I am happy that I did. Looking forward to the Ipi working some magic on me!!!
- - September 28, 2011 at 12:10 am
  - Quote
  melissa ann
  Participant
  My husband has his scans on Thursday so I will let you know the results. His side effects were minimal, rash, itching and very mild stomach issues. We wish you the best the nexr few months. I will reply again on Thursday to let you know. Melissa
- - September 28, 2011 at 12:10 am
  - Quote
  melissa ann
  Participant
  My husband has his scans on Thursday so I will let you know the results. His side effects were minimal, rash, itching and very mild stomach issues. We wish you the best the nexr few months. I will reply again on Thursday to let you know. Melissa
- - September 28, 2011 at 12:11 am
  - Quote
  melissa ann
  Participant
  My husband has his scans on Thursday so I will let you know the results. His side effects were minimal, rash, itching and very mild stomach issues. We wish you the best the nexr few months. I will reply again on Thursday to let you know. Melissa
- - September 28, 2011 at 12:11 am
  - Quote
  melissa ann
  Participant
  My husband has his scans on Thursday so I will let you know the results. His side effects were minimal, rash, itching and very mild stomach issues. We wish you the best the nexr few months. I will reply again on Thursday to let you know. Melissa
- - September 28, 2011 at 9:21 am
  - Quote
  mombase
  Participant
  Had my first Yervoy infusion yesterday (Tuesday in CA) and have had some mild side effects consisting of mild fever and general achiness. The infusion itself was administered incorrectly, so I'm putting in a call to Bristol Meyers in a few hours to see if it will effect the workings of the drug.
  
  Cristy, Stage IV
- - September 28, 2011 at 9:21 am
  - Quote
  mombase
  Participant
  Had my first Yervoy infusion yesterday (Tuesday in CA) and have had some mild side effects consisting of mild fever and general achiness. The infusion itself was administered incorrectly, so I'm putting in a call to Bristol Meyers in a few hours to see if it will effect the workings of the drug.
  
  Cristy, Stage IV
- - September 28, 2011 at 3:07 pm
  - Quote
  Gene_S
  Participant
  My husband Gene's last tumor was inoperable as it was located on the spine, also had some on surface, in lungs and liver as well. Started Ipi with the arm that had GM-CSF also the first part of March 2011. He had some tumors that were on the surface and we watched them shrink. At the end of May he started the maintenance phase. At 12 week scans down overall 39%, at 24 weeks down overall by 56% and he goes for the 30 week scans on Friday.
  
  Side effects were Ipi itch, rash, some flushing. Now his cortisol level is very low and he is on 5 mg of prednisone in morning and 2.5 mg in evening.
  
  Judy (loving wife and caregiver of Gene)
  - September 28, 2011 at 3:12 pm
    
    Quote
    Gene_S
    Participant
    
    The ones we watched shrank totally. The one on the spine that was inoperable is also totally gone.
    
    He is the 10 mg/kg of Ipi.
  - September 28, 2011 at 3:12 pm
    
    Quote
    Gene_S
    Participant
    
    The ones we watched shrank totally. The one on the spine that was inoperable is also totally gone.
    
    He is the 10 mg/kg of Ipi.
  - September 28, 2011 at 6:10 pm
    
    Quote
    mombase
    Participant
    
    Hi Judy,
    
    The results are awesome! Could you explain what the maintenance phase is? I asked my onc if there was any maintenance dosage once the scans came back from the initial 4 infusions, and he said no, because there has not been clinical trial evidence that there was a benefit from maintenance dosage. Is he just trying to save the VA money???
    
    Cristy, Stage IV
  - October 2, 2011 at 8:42 pm
    
    Quote
    Gene_S
    Participant
    
    My husband started Ipi Clinical Trial on March 4, 2011. He did the 4 infusions and was scanned at the 12 week ending with his overall regression at 39%, 12 weeks after the last infusion he received another and 12 weeks after that one which is Oct 21 he will have another. The oncologist told us it is the maintenace phase. So maybe he is saving money. My husband is on the 10mg/kg. I hope this helps.
    
    Judy
  - October 2, 2011 at 8:42 pm
    
    Quote
    Gene_S
    Participant
    
    My husband started Ipi Clinical Trial on March 4, 2011. He did the 4 infusions and was scanned at the 12 week ending with his overall regression at 39%, 12 weeks after the last infusion he received another and 12 weeks after that one which is Oct 21 he will have another. The oncologist told us it is the maintenace phase. So maybe he is saving money. My husband is on the 10mg/kg. I hope this helps.
    
    Judy
  - September 28, 2011 at 6:10 pm
    
    Quote
    mombase
    Participant
    
    Hi Judy,
    
    The results are awesome! Could you explain what the maintenance phase is? I asked my onc if there was any maintenance dosage once the scans came back from the initial 4 infusions, and he said no, because there has not been clinical trial evidence that there was a benefit from maintenance dosage. Is he just trying to save the VA money???
    
    Cristy, Stage IV
- - September 28, 2011 at 3:07 pm
  - Quote
  Gene_S
  Participant
  My husband Gene's last tumor was inoperable as it was located on the spine, also had some on surface, in lungs and liver as well. Started Ipi with the arm that had GM-CSF also the first part of March 2011. He had some tumors that were on the surface and we watched them shrink. At the end of May he started the maintenance phase. At 12 week scans down overall 39%, at 24 weeks down overall by 56% and he goes for the 30 week scans on Friday.
  
  Side effects were Ipi itch, rash, some flushing. Now his cortisol level is very low and he is on 5 mg of prednisone in morning and 2.5 mg in evening.
  
  Judy (loving wife and caregiver of Gene)
- - September 29, 2011 at 12:51 am
  - Quote
  Jim M.
  Participant
  Some positive effects , also known as immune breakthrough events, are: rash, gastro issues (colitis, diarrhea), and hypothysitis (swelling of the pituitary gland) which is what I had in 08.
  
  Some people have responded to Ipi with no side effects. In others the tumors may grow before they decrease.
  
  God Bless,
  
  Jim M.
  - October 1, 2011 at 10:15 pm
    
    Quote
    jonsie_57
    Participant
    
    My husband finished four treatments of yervoy on July 20, 2011 with very few side effects during treatment. He has had more side effects since he finished treatments such as tiredness and vomiting. His oncologist says it is too far out to still be having side effects from the drug but he the first patient she ever administered yervoy to. while he was on treatment the worse side effect he had was a rash that was treated with prednisone.
    
    He had a ct scan Sept. 7, 2011 and it only showed two tumors (there was five large ones) in his lungs that are smaller than a cm each and the scan did not show the other ones in the chest cavity. Wish it hadn't showed any at all but we are thankful for what it did do.
    
    He still gets really tired and short winded even though the tumors are shrinking and disappearing. Does anyone have any insight on this?
    
    Kay
  - October 1, 2011 at 10:15 pm
    
    Quote
    jonsie_57
    Participant
    
    My husband finished four treatments of yervoy on July 20, 2011 with very few side effects during treatment. He has had more side effects since he finished treatments such as tiredness and vomiting. His oncologist says it is too far out to still be having side effects from the drug but he the first patient she ever administered yervoy to. while he was on treatment the worse side effect he had was a rash that was treated with prednisone.
    
    He had a ct scan Sept. 7, 2011 and it only showed two tumors (there was five large ones) in his lungs that are smaller than a cm each and the scan did not show the other ones in the chest cavity. Wish it hadn't showed any at all but we are thankful for what it did do.
    
    He still gets really tired and short winded even though the tumors are shrinking and disappearing. Does anyone have any insight on this?
    
    Kay
- - September 29, 2011 at 12:51 am
  - Quote
  Jim M.
  Participant
  Some positive effects , also known as immune breakthrough events, are: rash, gastro issues (colitis, diarrhea), and hypothysitis (swelling of the pituitary gland) which is what I had in 08.
  
  Some people have responded to Ipi with no side effects. In others the tumors may grow before they decrease.
  
  God Bless,
  
  Jim M.