NIH update and an Ipilimumab question.
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NIH update and an Ipilimumab question.

› Forums › General Melanoma Community › NIH update and an Ipilimumab question.

  • Post
    • October 5, 2011 at 1:23 am
    himynameiskevin
    Participant

    Hello,
    A quick update from my room at the NIH…
    Well in the beginning stereotactic radiation got rid of a small brain lesion, IL-2 cleared up my liver. And surgery got the mass off my back. Then with numerous lesions still in my lungs, I was accepted to the NIH last year and in December I participated in the "Adoptive Cell Therapy" protocol. Initially I had a good response, I think as a whole things went down around 20% over the first few months. As time went by, monthly scans showed the shrinkage was slowing down. And in late August, one had appeared to be growing again. But just one, the rest are still stable. So I was told to come back this week, with the Doctors intentions of a small surgery to remove the defiant one, and hope the rest continue to remain stable. But it turns out the tumor is not in an easily accessible spot as they thought so that idea was scratched and about 5 other options were discussed. It came down to the doctors suggesting I go back to San Diego for some systemic therapy. They suggested Ipilimumab. They said my immune system is still strong and smart enough to keep these things at bay, and hope the ipi will give them a little push to make a difference. 

    So my time here at the NIH is over for now. Officially signing the papers and checking out. A sad day indeed. I fly out tomorrow morning. And even though this one is getting bigger and I wasn't one of the lucky complete responders. I don't regret coming here at all.  They did their best and I'm in better condition than I was a year ago today. Deciding to come here has to be one of the best decisions I've ever made and feel very lucky to have a doctor who encouraged and help get me in. I recommend this place to anyone who has the opportunity. 

    So as of now, I have an appointment to see my oncologist in San Diego next Thursday. I'm sure he'll have some input, so I'm not sure if Ipilimumab will be the final decision. But it seems to be leaning that way right now.

    Has anyone on here had a good response to ipi they'd like to share, whether short term or long term? It's a bit scary going into something new, and sometimes internet statistics can be misleading and discouraging. Hearing a success story or two can make a 1% chance feel like a 100% chance so I'm interested to hear.

    Thanks, I hope everyone's doing well and I'll talk to you soon.

    -Kevin

     

    And now to one last night in my home away from home. I'm gonna miss this place, and all the staff that took care of me like family and not just a patient.

Viewing 29 reply threads
  • Replies
      • October 5, 2011 at 3:21 am
      mombase
      Participant

      Hi Kevin,

      Your attitude is awesome, and THAT is going to make a huge difference. I am just starting ipi as well, so I can't really give you a success story. I have many lung tumors, a liver tumor, and had a brain tumor resected, so I am hoping this stuff does the job.

      I am currently in the Sacramento VA, but my oldest sister would love for me to come back to San Diego to get treatment there. That would mean changing my fantastic treatment team here to an unkown treatment team in the most heavily used VA in the country! I graciously declined.

      I am glad that you had a great experience at NIH, and here's hoping  you have a great team in SD!

      Cristy, Stage IV

        • October 5, 2011 at 9:49 am
        Vermont_Donna
        Participant

        Hi Kevin,

        I was glad to see you had posted as I have been following your journey with melanoma and treatments. I am sorry that the tumor is not resectabel. You have done so well with the TIL treatment.

        I have done ipilimumab (yervoy) 3mg/kg, as part of a clinical trial back starting in Dec 2010 and ending in Feb 2011. I turned out to be a complete responder. I had very few side effects and the treatments were easy…just some severe nausea at times deuing and after the treatments. I had two different anti nausea meds I used and they gave me some IV anti nausea meds before infusions. I had four infusions three weeks apart. Please loo at my profile for more information and for side effects put ipilimumab side effects in the search bar and look for my posts as I have written extensively about my expereince with the drug.

        Best of luck to you dear Kevin, and I will be looking for your posts on how you are doing!

        Vermont_Donna, stage 3a, now NED due to yervoy

        • October 5, 2011 at 9:49 am
        Vermont_Donna
        Participant

        Hi Kevin,

        I was glad to see you had posted as I have been following your journey with melanoma and treatments. I am sorry that the tumor is not resectabel. You have done so well with the TIL treatment.

        I have done ipilimumab (yervoy) 3mg/kg, as part of a clinical trial back starting in Dec 2010 and ending in Feb 2011. I turned out to be a complete responder. I had very few side effects and the treatments were easy…just some severe nausea at times deuing and after the treatments. I had two different anti nausea meds I used and they gave me some IV anti nausea meds before infusions. I had four infusions three weeks apart. Please loo at my profile for more information and for side effects put ipilimumab side effects in the search bar and look for my posts as I have written extensively about my expereince with the drug.

        Best of luck to you dear Kevin, and I will be looking for your posts on how you are doing!

        Vermont_Donna, stage 3a, now NED due to yervoy

        • October 5, 2011 at 9:49 am
        Vermont_Donna
        Participant

        Hi Kevin,

        I was glad to see you had posted as I have been following your journey with melanoma and treatments. I am sorry that the tumor is not resectabel. You have done so well with the TIL treatment.

        I have done ipilimumab (yervoy) 3mg/kg, as part of a clinical trial back starting in Dec 2010 and ending in Feb 2011. I turned out to be a complete responder. I had very few side effects and the treatments were easy…just some severe nausea at times deuing and after the treatments. I had two different anti nausea meds I used and they gave me some IV anti nausea meds before infusions. I had four infusions three weeks apart. Please loo at my profile for more information and for side effects put ipilimumab side effects in the search bar and look for my posts as I have written extensively about my expereince with the drug.

        Best of luck to you dear Kevin, and I will be looking for your posts on how you are doing!

        Vermont_Donna, stage 3a, now NED due to yervoy

      • October 5, 2011 at 3:21 am
      mombase
      Participant

      Hi Kevin,

      Your attitude is awesome, and THAT is going to make a huge difference. I am just starting ipi as well, so I can't really give you a success story. I have many lung tumors, a liver tumor, and had a brain tumor resected, so I am hoping this stuff does the job.

      I am currently in the Sacramento VA, but my oldest sister would love for me to come back to San Diego to get treatment there. That would mean changing my fantastic treatment team here to an unkown treatment team in the most heavily used VA in the country! I graciously declined.

      I am glad that you had a great experience at NIH, and here's hoping  you have a great team in SD!

      Cristy, Stage IV

      • October 5, 2011 at 3:21 am
      mombase
      Participant

      Hi Kevin,

      Your attitude is awesome, and THAT is going to make a huge difference. I am just starting ipi as well, so I can't really give you a success story. I have many lung tumors, a liver tumor, and had a brain tumor resected, so I am hoping this stuff does the job.

      I am currently in the Sacramento VA, but my oldest sister would love for me to come back to San Diego to get treatment there. That would mean changing my fantastic treatment team here to an unkown treatment team in the most heavily used VA in the country! I graciously declined.

      I am glad that you had a great experience at NIH, and here's hoping  you have a great team in SD!

      Cristy, Stage IV

      • October 5, 2011 at 10:45 am
      Rocco
      Participant

      Hi Kevin,

      I was diagnosed in 2005 at Stage IV.  Went through a number of surgeries, radiation, IL-2, an Adoptive Cell Transfer trial at Dana Farber and then the compassionate use trial of IPI (now Yervoy).  Throughout all of that my immune system was hard at work keeping the mel from spreading quickly.  We figured that we just needed something to tip my immune system a bit more in my favor.  Whether it was the combo of the Adoptive Cell trial followed by IPI  or IPI itself, I started having great scans with shrinkage right after starting IPI.  Started Ipi in Sept 2008, Nov 2008 scan showed 70+% shrinkage.  My last dose of ipi was in Feb 2009.   I had some side effects which were treated wth steroids. By late spring in 2009 there was no evidence of active disease and hasn't been since.   Check out my profile for al the details.

      Hang in there, Kevin!

      Rocco, IV since 2005, ipi responder

      • October 5, 2011 at 10:45 am
      Rocco
      Participant

      Hi Kevin,

      I was diagnosed in 2005 at Stage IV.  Went through a number of surgeries, radiation, IL-2, an Adoptive Cell Transfer trial at Dana Farber and then the compassionate use trial of IPI (now Yervoy).  Throughout all of that my immune system was hard at work keeping the mel from spreading quickly.  We figured that we just needed something to tip my immune system a bit more in my favor.  Whether it was the combo of the Adoptive Cell trial followed by IPI  or IPI itself, I started having great scans with shrinkage right after starting IPI.  Started Ipi in Sept 2008, Nov 2008 scan showed 70+% shrinkage.  My last dose of ipi was in Feb 2009.   I had some side effects which were treated wth steroids. By late spring in 2009 there was no evidence of active disease and hasn't been since.   Check out my profile for al the details.

      Hang in there, Kevin!

      Rocco, IV since 2005, ipi responder

      • October 5, 2011 at 10:45 am
      Rocco
      Participant

      Hi Kevin,

      I was diagnosed in 2005 at Stage IV.  Went through a number of surgeries, radiation, IL-2, an Adoptive Cell Transfer trial at Dana Farber and then the compassionate use trial of IPI (now Yervoy).  Throughout all of that my immune system was hard at work keeping the mel from spreading quickly.  We figured that we just needed something to tip my immune system a bit more in my favor.  Whether it was the combo of the Adoptive Cell trial followed by IPI  or IPI itself, I started having great scans with shrinkage right after starting IPI.  Started Ipi in Sept 2008, Nov 2008 scan showed 70+% shrinkage.  My last dose of ipi was in Feb 2009.   I had some side effects which were treated wth steroids. By late spring in 2009 there was no evidence of active disease and hasn't been since.   Check out my profile for al the details.

      Hang in there, Kevin!

      Rocco, IV since 2005, ipi responder

      • October 5, 2011 at 1:18 pm
      Gene_S
      Participant

      Hello Kevin,

      My husband is on the maintenance partof Ipi (Yervoy) at the 10mg/kg trial with GM-CSF.  At 12 weeks he was 39% overall, 24 weeks 56% overall and just had 30 weeks and there was shrinkage we just don't have the overall percentage yet.  Read his profile for more info.  The side effects were minimal during the first 12 and now he is having some thyroid problems but on a low dose of prednisone with a total of 7 1/2 mg a day.

      Judy (loving wife and caregiver to Gene)

      • October 5, 2011 at 1:18 pm
      Gene_S
      Participant

      Hello Kevin,

      My husband is on the maintenance partof Ipi (Yervoy) at the 10mg/kg trial with GM-CSF.  At 12 weeks he was 39% overall, 24 weeks 56% overall and just had 30 weeks and there was shrinkage we just don't have the overall percentage yet.  Read his profile for more info.  The side effects were minimal during the first 12 and now he is having some thyroid problems but on a low dose of prednisone with a total of 7 1/2 mg a day.

      Judy (loving wife and caregiver to Gene)

      • October 5, 2011 at 1:18 pm
      Gene_S
      Participant

      Hello Kevin,

      My husband is on the maintenance partof Ipi (Yervoy) at the 10mg/kg trial with GM-CSF.  At 12 weeks he was 39% overall, 24 weeks 56% overall and just had 30 weeks and there was shrinkage we just don't have the overall percentage yet.  Read his profile for more info.  The side effects were minimal during the first 12 and now he is having some thyroid problems but on a low dose of prednisone with a total of 7 1/2 mg a day.

      Judy (loving wife and caregiver to Gene)

      • October 5, 2011 at 3:17 pm
      dian in spokane
      Participant

      Kevin,

      I'm so glad to hear from you, I can't tell you how often you cross my mind.

      good luck with your next treatment.

       

      dian

      • October 5, 2011 at 3:17 pm
      dian in spokane
      Participant

      Kevin,

      I'm so glad to hear from you, I can't tell you how often you cross my mind.

      good luck with your next treatment.

       

      dian

      • October 5, 2011 at 3:17 pm
      dian in spokane
      Participant

      Kevin,

      I'm so glad to hear from you, I can't tell you how often you cross my mind.

      good luck with your next treatment.

       

      dian

      • October 5, 2011 at 4:43 pm
      killmel
      Participant

      Hi Kevin,

      Please keep us posted how your ONC in San Diegois visit goes.

      Best of luck to you.

      Mary

      • October 5, 2011 at 4:43 pm
      killmel
      Participant

      Hi Kevin,

      Please keep us posted how your ONC in San Diegois visit goes.

      Best of luck to you.

      Mary

      • October 5, 2011 at 4:43 pm
      killmel
      Participant

      Hi Kevin,

      Please keep us posted how your ONC in San Diegois visit goes.

      Best of luck to you.

      Mary

      • October 5, 2011 at 9:37 pm
      JerryfromFauq
      Participant

      Kevin,

          I'm counting on getting to meet you in person one of these years when we get back to Calif to visit my sister-in-law. 

      Rocco helped me make the point that I am posting to you about.  Ipi either before or after IL-2 has many times shown a benefit. (Seems to be a good pairing.)  I  believe you received IL-2 as part ot the ACT treatment at NIH.  The Ipi coud be just the item to finish tipping the scales for being a complete responder. 

         I have heard of IL-2 after Til also being successful, so why shouldn't Ipi enhance one then as well?

         Glad your tumor load has been reduced.  praying for you, man!

      • October 5, 2011 at 9:37 pm
      JerryfromFauq
      Participant

      Kevin,

          I'm counting on getting to meet you in person one of these years when we get back to Calif to visit my sister-in-law. 

      Rocco helped me make the point that I am posting to you about.  Ipi either before or after IL-2 has many times shown a benefit. (Seems to be a good pairing.)  I  believe you received IL-2 as part ot the ACT treatment at NIH.  The Ipi coud be just the item to finish tipping the scales for being a complete responder. 

         I have heard of IL-2 after Til also being successful, so why shouldn't Ipi enhance one then as well?

         Glad your tumor load has been reduced.  praying for you, man!

      • October 5, 2011 at 9:37 pm
      JerryfromFauq
      Participant

      Kevin,

          I'm counting on getting to meet you in person one of these years when we get back to Calif to visit my sister-in-law. 

      Rocco helped me make the point that I am posting to you about.  Ipi either before or after IL-2 has many times shown a benefit. (Seems to be a good pairing.)  I  believe you received IL-2 as part ot the ACT treatment at NIH.  The Ipi coud be just the item to finish tipping the scales for being a complete responder. 

         I have heard of IL-2 after Til also being successful, so why shouldn't Ipi enhance one then as well?

         Glad your tumor load has been reduced.  praying for you, man!

      • October 5, 2011 at 10:54 pm
      jmmm
      Participant

      My husband had 4 doses of ipi 3mg/kg from May-July 2011.  He had 2 golf ball sized tumors–one inoperable near his heart, and one in his GI tract, causing gi bleeding.   Within the first two weeks, the GI bleeding stopped completely.  By his 14 week scan, the GI tumor was completely gone and the one near his heart was inactive and 1/2 the size.  He had one area of concern in a lymphnode in his belly.  At a 20 week scan, the heart tumor was completely gone.  One more lymphnode showed activity in his neck.  The doctor proclaimed it a mixed reaction.  Wonderful news in our eyes, because he wouldn't be here now if it didn't work–the tumor near his heart would have killed him.  At this point, he has two small tumors (2 cm ish) in lymphnodes that aren't causing any problems.  He's due for another scan in two weeks (26 weeks).  The doctor is trying to get a yervoy reinduction approved, but for now, since neither tumor is causing a problem, he's just letting it go.  Side effects were minimal–a rash on his legs, some stomach gurgling, and some lethargy.  It didn't really slow him down much–a few extra naps in the afternoon and we got to listen to his belly talk all night long, but nothing needed treatment.  For him, it's a miracle drug–it truly saved his life.  

      • October 5, 2011 at 10:54 pm
      jmmm
      Participant

      My husband had 4 doses of ipi 3mg/kg from May-July 2011.  He had 2 golf ball sized tumors–one inoperable near his heart, and one in his GI tract, causing gi bleeding.   Within the first two weeks, the GI bleeding stopped completely.  By his 14 week scan, the GI tumor was completely gone and the one near his heart was inactive and 1/2 the size.  He had one area of concern in a lymphnode in his belly.  At a 20 week scan, the heart tumor was completely gone.  One more lymphnode showed activity in his neck.  The doctor proclaimed it a mixed reaction.  Wonderful news in our eyes, because he wouldn't be here now if it didn't work–the tumor near his heart would have killed him.  At this point, he has two small tumors (2 cm ish) in lymphnodes that aren't causing any problems.  He's due for another scan in two weeks (26 weeks).  The doctor is trying to get a yervoy reinduction approved, but for now, since neither tumor is causing a problem, he's just letting it go.  Side effects were minimal–a rash on his legs, some stomach gurgling, and some lethargy.  It didn't really slow him down much–a few extra naps in the afternoon and we got to listen to his belly talk all night long, but nothing needed treatment.  For him, it's a miracle drug–it truly saved his life.  

      • October 5, 2011 at 10:54 pm
      jmmm
      Participant

      My husband had 4 doses of ipi 3mg/kg from May-July 2011.  He had 2 golf ball sized tumors–one inoperable near his heart, and one in his GI tract, causing gi bleeding.   Within the first two weeks, the GI bleeding stopped completely.  By his 14 week scan, the GI tumor was completely gone and the one near his heart was inactive and 1/2 the size.  He had one area of concern in a lymphnode in his belly.  At a 20 week scan, the heart tumor was completely gone.  One more lymphnode showed activity in his neck.  The doctor proclaimed it a mixed reaction.  Wonderful news in our eyes, because he wouldn't be here now if it didn't work–the tumor near his heart would have killed him.  At this point, he has two small tumors (2 cm ish) in lymphnodes that aren't causing any problems.  He's due for another scan in two weeks (26 weeks).  The doctor is trying to get a yervoy reinduction approved, but for now, since neither tumor is causing a problem, he's just letting it go.  Side effects were minimal–a rash on his legs, some stomach gurgling, and some lethargy.  It didn't really slow him down much–a few extra naps in the afternoon and we got to listen to his belly talk all night long, but nothing needed treatment.  For him, it's a miracle drug–it truly saved his life.  

      • October 6, 2011 at 12:15 am
      Jim M.
      Participant

      Hi Kevin,

       I was on an Ipi trial back in 2008. I was (and am) stage 3C. I had the tumor resected from the right axillary and went into the trial with no tumor burden. Just prior to receiving my 5th infusion an MRI revealed hypophysitis (swelling of the pituitary). I was taken off Ipi and put on a hormone replacement.

       Through doing analyses on my white blood cells (looking for an increase in dendritic cells) my doctor told me I had an immune response of at least 5 times over baseline. He sees this kind of response in 10 – 20% of patients.

      I went off Ipi in 10/08 and have had no recurrence. It will be 4 years this Nov.1 since I began NED status.

       Best of success to you Kevin and I'll pray that Ipi gives you the response you need.

       God Bless,

       Jim M.

      • October 6, 2011 at 12:15 am
      Jim M.
      Participant

      Hi Kevin,

       I was on an Ipi trial back in 2008. I was (and am) stage 3C. I had the tumor resected from the right axillary and went into the trial with no tumor burden. Just prior to receiving my 5th infusion an MRI revealed hypophysitis (swelling of the pituitary). I was taken off Ipi and put on a hormone replacement.

       Through doing analyses on my white blood cells (looking for an increase in dendritic cells) my doctor told me I had an immune response of at least 5 times over baseline. He sees this kind of response in 10 – 20% of patients.

      I went off Ipi in 10/08 and have had no recurrence. It will be 4 years this Nov.1 since I began NED status.

       Best of success to you Kevin and I'll pray that Ipi gives you the response you need.

       God Bless,

       Jim M.

      • October 6, 2011 at 12:15 am
      Jim M.
      Participant

      Hi Kevin,

       I was on an Ipi trial back in 2008. I was (and am) stage 3C. I had the tumor resected from the right axillary and went into the trial with no tumor burden. Just prior to receiving my 5th infusion an MRI revealed hypophysitis (swelling of the pituitary). I was taken off Ipi and put on a hormone replacement.

       Through doing analyses on my white blood cells (looking for an increase in dendritic cells) my doctor told me I had an immune response of at least 5 times over baseline. He sees this kind of response in 10 – 20% of patients.

      I went off Ipi in 10/08 and have had no recurrence. It will be 4 years this Nov.1 since I began NED status.

       Best of success to you Kevin and I'll pray that Ipi gives you the response you need.

       God Bless,

       Jim M.

      • October 6, 2011 at 7:06 pm
      ValinMtl
      Participant

      Hi Kevin, I'm glad to hear you responded quite well to some of your treatments and really do believe that ipilimumab just might the 'final' touch to destroying mel.  I actually had ipilimumab BEFORE I did the TIL (in September). The ipi was doing a fabulous job…my rignt leg had been turning purple and completely covered with cutaneous melanoma….I was even congratulated y my oncologist.  Alas, mel took form in another way spread to two lymph nodes in my left leg.  It also created sub-qs in my right…time to change direction.  So I applied to TIL and was accepted..they removed the two masses in left leg (untouched by radiation) and off I went into treatment.  I have had great results on TIL although the radiation really holds me down.  BUT why not the other way TILL then ipilimumab, I believe it's a very good direction to take.  I pray it works for you.  Val xx

      • October 6, 2011 at 7:06 pm
      ValinMtl
      Participant

      Hi Kevin, I'm glad to hear you responded quite well to some of your treatments and really do believe that ipilimumab just might the 'final' touch to destroying mel.  I actually had ipilimumab BEFORE I did the TIL (in September). The ipi was doing a fabulous job…my rignt leg had been turning purple and completely covered with cutaneous melanoma….I was even congratulated y my oncologist.  Alas, mel took form in another way spread to two lymph nodes in my left leg.  It also created sub-qs in my right…time to change direction.  So I applied to TIL and was accepted..they removed the two masses in left leg (untouched by radiation) and off I went into treatment.  I have had great results on TIL although the radiation really holds me down.  BUT why not the other way TILL then ipilimumab, I believe it's a very good direction to take.  I pray it works for you.  Val xx

      • October 6, 2011 at 7:06 pm
      ValinMtl
      Participant

      Hi Kevin, I'm glad to hear you responded quite well to some of your treatments and really do believe that ipilimumab just might the 'final' touch to destroying mel.  I actually had ipilimumab BEFORE I did the TIL (in September). The ipi was doing a fabulous job…my rignt leg had been turning purple and completely covered with cutaneous melanoma….I was even congratulated y my oncologist.  Alas, mel took form in another way spread to two lymph nodes in my left leg.  It also created sub-qs in my right…time to change direction.  So I applied to TIL and was accepted..they removed the two masses in left leg (untouched by radiation) and off I went into treatment.  I have had great results on TIL although the radiation really holds me down.  BUT why not the other way TILL then ipilimumab, I believe it's a very good direction to take.  I pray it works for you.  Val xx

      • October 6, 2011 at 8:51 pm
      killmel
      Participant

      Hi Kevin,

      Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

      It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

      I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

      Also, if you do Yervoy now, you might not qualify to do PD-1 later

      Thanks & good luck with your decision for treatment.

      A

      • October 6, 2011 at 8:51 pm
      killmel
      Participant

      Hi Kevin,

      Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

      It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

      I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

      Also, if you do Yervoy now, you might not qualify to do PD-1 later

      Thanks & good luck with your decision for treatment.

      A

      • October 6, 2011 at 8:51 pm
      killmel
      Participant

      Hi Kevin,

      Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

      It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

      I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

      Also, if you do Yervoy now, you might not qualify to do PD-1 later

      Thanks & good luck with your decision for treatment.

      A

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