Case note: ipi and brain mets

sorry to hear about your brother!  But I was reminded over and over again by my oncologist that ipi can tend to make tumors grow before they shrink.  I finished my 4th dose Nov 27th.  no major side effects.  A few here and there but nothing horrible.  Scans Sept 12 had shown a lymph node in my abdominal region to be 2.0 x 1.6 cm (was still taking Zelboraf at the time).  The tumor in my intestine had started to grow so I came off Z and started Ipi end of Sept.  Had surgery Oct 4th to remove 8" of my small intestine.  They weren't able to remove the lymph node because it is wrapped around a blood supply to the small intestine.  Scans Dec 18th showed it grew again to 3.7 x 2.5 cm.  Nothing new.  Started process to get in PD1 trial at sloan.  Scans Jan 16th, 2013 showed node now 2.8 x 1.6 cm.  Trial nurse said could be delayed response to Ipi.  Started PD1 Jan 21st.  So far so good.  Will be scanned week 12.  

Did they talk about what the next options are for your brother?  Thinking of you!  
Erin

sorry to hear about your brother!  But I was reminded over and over again by my oncologist that ipi can tend to make tumors grow before they shrink.  I finished my 4th dose Nov 27th.  no major side effects.  A few here and there but nothing horrible.  Scans Sept 12 had shown a lymph node in my abdominal region to be 2.0 x 1.6 cm (was still taking Zelboraf at the time).  The tumor in my intestine had started to grow so I came off Z and started Ipi end of Sept.  Had surgery Oct 4th to remove 8" of my small intestine.  They weren't able to remove the lymph node because it is wrapped around a blood supply to the small intestine.  Scans Dec 18th showed it grew again to 3.7 x 2.5 cm.  Nothing new.  Started process to get in PD1 trial at sloan.  Scans Jan 16th, 2013 showed node now 2.8 x 1.6 cm.  Trial nurse said could be delayed response to Ipi.  Started PD1 Jan 21st.  So far so good.  Will be scanned week 12.  

Did they talk about what the next options are for your brother?  Thinking of you!  
Erin

sorry to hear about your brother!  But I was reminded over and over again by my oncologist that ipi can tend to make tumors grow before they shrink.  I finished my 4th dose Nov 27th.  no major side effects.  A few here and there but nothing horrible.  Scans Sept 12 had shown a lymph node in my abdominal region to be 2.0 x 1.6 cm (was still taking Zelboraf at the time).  The tumor in my intestine had started to grow so I came off Z and started Ipi end of Sept.  Had surgery Oct 4th to remove 8" of my small intestine.  They weren't able to remove the lymph node because it is wrapped around a blood supply to the small intestine.  Scans Dec 18th showed it grew again to 3.7 x 2.5 cm.  Nothing new.  Started process to get in PD1 trial at sloan.  Scans Jan 16th, 2013 showed node now 2.8 x 1.6 cm.  Trial nurse said could be delayed response to Ipi.  Started PD1 Jan 21st.  So far so good.  Will be scanned week 12.  

Did they talk about what the next options are for your brother?  Thinking of you!  
Erin

I had a minor immune reaction to Ipi (iritis) within days of dose 1. By day 24, my headaches got me a brain/ pituitary MRI which lo and behold revealed 2 brain mets. I am tired of hearing about all this inflammation stuff (no offense to you POW). I went in with a clear understanding that although they don’t know how it works, Ipi can make things worse before they get better.

I pushed and pushed my drs that SOMETHING was not right with my heart although my onc was sticking to the 12 week scanning rule on the rest of me even after brain mets & SRS. After ruling out thyroid, I had an echo, phone calls from them both, cardiac MRI and was back on Zel all in 2 days. My cardiac met BLOSSOMED on Ipi, scaring the crap out of my cardiologist, my oncologist, and me. If I’d waited for 12 week scans I’d be dead. Not kidding. And my dr has been using both these drugs in trials, etc for years. Not sure if I’m a miracle or disaster or combination of both. VERY BLESSED and THANKFUL to God!! I finished Ipi but my poor liver is way, way overdue for a margarita.

They just don’t know!!!!

POW you have been on my mind, have you thought of talking to your brothers dr about a reinduction of vemurafenib? This is more common in Europe and they are seeing some 2nd and 3rd responses to it, not sure though the timeframes people are off though. Maybe try MIF to dig out some details.

-A

I had a minor immune reaction to Ipi (iritis) within days of dose 1. By day 24, my headaches got me a brain/ pituitary MRI which lo and behold revealed 2 brain mets. I am tired of hearing about all this inflammation stuff (no offense to you POW). I went in with a clear understanding that although they don’t know how it works, Ipi can make things worse before they get better.

I pushed and pushed my drs that SOMETHING was not right with my heart although my onc was sticking to the 12 week scanning rule on the rest of me even after brain mets & SRS. After ruling out thyroid, I had an echo, phone calls from them both, cardiac MRI and was back on Zel all in 2 days. My cardiac met BLOSSOMED on Ipi, scaring the crap out of my cardiologist, my oncologist, and me. If I’d waited for 12 week scans I’d be dead. Not kidding. And my dr has been using both these drugs in trials, etc for years. Not sure if I’m a miracle or disaster or combination of both. VERY BLESSED and THANKFUL to God!! I finished Ipi but my poor liver is way, way overdue for a margarita.

They just don’t know!!!!

POW you have been on my mind, have you thought of talking to your brothers dr about a reinduction of vemurafenib? This is more common in Europe and they are seeing some 2nd and 3rd responses to it, not sure though the timeframes people are off though. Maybe try MIF to dig out some details.

-A

I had a minor immune reaction to Ipi (iritis) within days of dose 1. By day 24, my headaches got me a brain/ pituitary MRI which lo and behold revealed 2 brain mets. I am tired of hearing about all this inflammation stuff (no offense to you POW). I went in with a clear understanding that although they don’t know how it works, Ipi can make things worse before they get better.

I pushed and pushed my drs that SOMETHING was not right with my heart although my onc was sticking to the 12 week scanning rule on the rest of me even after brain mets & SRS. After ruling out thyroid, I had an echo, phone calls from them both, cardiac MRI and was back on Zel all in 2 days. My cardiac met BLOSSOMED on Ipi, scaring the crap out of my cardiologist, my oncologist, and me. If I’d waited for 12 week scans I’d be dead. Not kidding. And my dr has been using both these drugs in trials, etc for years. Not sure if I’m a miracle or disaster or combination of both. VERY BLESSED and THANKFUL to God!! I finished Ipi but my poor liver is way, way overdue for a margarita.

They just don’t know!!!!

POW you have been on my mind, have you thought of talking to your brothers dr about a reinduction of vemurafenib? This is more common in Europe and they are seeing some 2nd and 3rd responses to it, not sure though the timeframes people are off though. Maybe try MIF to dig out some details.

-A

Not a whole lot to add, but I started ipi at the end of October, had two brain mets shrunk through SRS at Week 7, had a scan at Week 10 that showed one of the mets was now occupying a much larger space, though the radiological oncologist believed it was a combo of the zapping and the ipi that made it look so large.  Tomorrow I will have the results of my latest brain MRI at Week 12 last week.  I'll let you know.

Not a whole lot to add, but I started ipi at the end of October, had two brain mets shrunk through SRS at Week 7, had a scan at Week 10 that showed one of the mets was now occupying a much larger space, though the radiological oncologist believed it was a combo of the zapping and the ipi that made it look so large.  Tomorrow I will have the results of my latest brain MRI at Week 12 last week.  I'll let you know.

Not a whole lot to add, but I started ipi at the end of October, had two brain mets shrunk through SRS at Week 7, had a scan at Week 10 that showed one of the mets was now occupying a much larger space, though the radiological oncologist believed it was a combo of the zapping and the ipi that made it look so large.  Tomorrow I will have the results of my latest brain MRI at Week 12 last week.  I'll let you know.

My wife will have her 2nd ipi treatment Feb. 5 . Her side effects have been limited to a small rash on her elbows that came and went and afternoon fatigue that taking a nap usually helps. What made me feel great is your second paragraph. Her doctor at Moffitt in Tampa said the tumors could inflame from the treatment before they get better. She is stage 4 melanoma diagnosed Dec 7 2012. Well the past week or so, we can feel and see the difference in a few of her tumors. One day her shoulder will be larger by feel and sight a day or two later back down it goes. Then it moved to her abdomen. Same thing inflames then couple days goes away. Her tumors are in the upper body and it seems currently we can track what is going on each day with the tumors due to this cycle. We were hoping and praying that this was a sign of the ipi and immune system kick starting. thanks for sharing this. We didnt think this would be an observation we would have so soon. Good luck with your brother. 

My wife will have her 2nd ipi treatment Feb. 5 . Her side effects have been limited to a small rash on her elbows that came and went and afternoon fatigue that taking a nap usually helps. What made me feel great is your second paragraph. Her doctor at Moffitt in Tampa said the tumors could inflame from the treatment before they get better. She is stage 4 melanoma diagnosed Dec 7 2012. Well the past week or so, we can feel and see the difference in a few of her tumors. One day her shoulder will be larger by feel and sight a day or two later back down it goes. Then it moved to her abdomen. Same thing inflames then couple days goes away. Her tumors are in the upper body and it seems currently we can track what is going on each day with the tumors due to this cycle. We were hoping and praying that this was a sign of the ipi and immune system kick starting. thanks for sharing this. We didnt think this would be an observation we would have so soon. Good luck with your brother. 

My wife will have her 2nd ipi treatment Feb. 5 . Her side effects have been limited to a small rash on her elbows that came and went and afternoon fatigue that taking a nap usually helps. What made me feel great is your second paragraph. Her doctor at Moffitt in Tampa said the tumors could inflame from the treatment before they get better. She is stage 4 melanoma diagnosed Dec 7 2012. Well the past week or so, we can feel and see the difference in a few of her tumors. One day her shoulder will be larger by feel and sight a day or two later back down it goes. Then it moved to her abdomen. Same thing inflames then couple days goes away. Her tumors are in the upper body and it seems currently we can track what is going on each day with the tumors due to this cycle. We were hoping and praying that this was a sign of the ipi and immune system kick starting. thanks for sharing this. We didnt think this would be an observation we would have so soon. Good luck with your brother. 

My wife will have her 2nd ipi treatment on Feb. 5. For the past week we can feel and see a few of her tumors inflame for a day or two and then regress. We were told that they could grown before getting better. It is just good to hear others that have experienced it so we feel more hope that the ipi and immune system are kick starting to fight the melonoma. Side effects so far small rash on elbows and fatigue several times per week. Thanks for posting your experience to help others. Good luck with your brother. 

My wife will have her 2nd ipi treatment on Feb. 5. For the past week we can feel and see a few of her tumors inflame for a day or two and then regress. We were told that they could grown before getting better. It is just good to hear others that have experienced it so we feel more hope that the ipi and immune system are kick starting to fight the melonoma. Side effects so far small rash on elbows and fatigue several times per week. Thanks for posting your experience to help others. Good luck with your brother. 

My wife will have her 2nd ipi treatment on Feb. 5. For the past week we can feel and see a few of her tumors inflame for a day or two and then regress. We were told that they could grown before getting better. It is just good to hear others that have experienced it so we feel more hope that the ipi and immune system are kick starting to fight the melonoma. Side effects so far small rash on elbows and fatigue several times per week. Thanks for posting your experience to help others. Good luck with your brother. 

My wife will have her 2nd ipi treatment on Feb. 5. For the past week we can feel and see a few of her tumors inflame for a day or two and then regress. We were told that they could grown before getting better. It is just good to hear others that have experienced it so we feel more hope that the ipi and immune system are kick starting to fight the melonoma. Side effects so far small rash on elbows and fatigue several times per week. Thanks for posting your experience to help others. Good luck with your brother. 

My wife will have her 2nd ipi treatment on Feb. 5. For the past week we can feel and see a few of her tumors inflame for a day or two and then regress. We were told that they could grown before getting better. It is just good to hear others that have experienced it so we feel more hope that the ipi and immune system are kick starting to fight the melonoma. Side effects so far small rash on elbows and fatigue several times per week. Thanks for posting your experience to help others. Good luck with your brother. 

My wife will have her 2nd ipi treatment on Feb. 5. For the past week we can feel and see a few of her tumors inflame for a day or two and then regress. We were told that they could grown before getting better. It is just good to hear others that have experienced it so we feel more hope that the ipi and immune system are kick starting to fight the melonoma. Side effects so far small rash on elbows and fatigue several times per week. Thanks for posting your experience to help others. Good luck with your brother.