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IL-2 did not work. Moving onto IPI with whole brain radiation at the same time~anyone have experience???

Forums General Melanoma Community IL-2 did not work. Moving onto IPI with whole brain radiation at the same time~anyone have experience???

  • Post
    lrkg1234
    Participant

      Wow what a week.  We learned that my husband Scott's IL-2 treatment did not work, he got a stomach tube for feeding because of his esophageal tumor and then learned that he has 7 small (under 2 mm) brain mets and needs to be treated with whole brain radiation.  He had already had one small area treated with stereotactic radiation.  Pretty hellish week. Feels like we have been around the world a few times and it's seriously been about a week.

      Wow what a week.  We learned that my husband Scott's IL-2 treatment did not work, he got a stomach tube for feeding because of his esophageal tumor and then learned that he has 7 small (under 2 mm) brain mets and needs to be treated with whole brain radiation.  He had already had one small area treated with stereotactic radiation.  Pretty hellish week. Feels like we have been around the world a few times and it's seriously been about a week.

      So, that was obviously depressing news.  The good news might be coming soon hopefully.  I was googling like mad after hearing about the whole brain radiation and read someone's post about undergoing whole brain radation and IPI at the same time.  I had no idea this was possible.  It's supposed to possibly have some type of symbiotic effect and perhaps create a better overall response than IPI may do on it's own.  Thank God for the information from other melanoma patients!  The combined information from patients has been equally informative as any doctor has so far. 

      If all goes well this combination therapy  will be the new plan of attack.  The idea came from this board and on the the Ogler Blogspot.  This is what his (Peter Ogler) doctor's had suggested for him. He did it and is still alive.   I hope to be able to connect with him.

      The oncologist and radiation oncologist have agreed to go forward with the plan as long as the insurance works out and the blood tests come back OK.  Scott had his first radiation treatment today, there will be 14 total.  He may begin the IPI as soon as this Wednesday (2 days from now!)

      We know this won't be an easy road, but it's a relief to be able to begin treatment sooner than later. I thought it would be necessary to treat the brain first before trying anything else.  It's awesome to possibly have the chance at trying something new.  Whole brain radiation and IPI both have their risks, but what is the alternative??  The brain issue has to be addressed. 

      The radiation oncologist researched the idea for us after we suggested it.  He called some researchers doing a trial in Pennsylvania using IPI and radiation together.  They were combining the WBR with IPI.  They have not had any overwhelmingly negative side effects from combining the two and thought it's a combo worth investigating.

      My prayers are with all who are going through this.  It's a relief to have other people that know what is going on.  It's too much information for the average, uninvolved person to digest.  The education and support from this website is a true gift.

      Lisa (Scott's wife)

    Viewing 20 reply threads
    • Replies
        aldakota22
        Participant

          I am so sorry you are going through all this.Thank God you were able to get  the info you needed to get your doctors on board for the combination traetment.I can only imagine the worry and concern you feel.Will keep you both in my prayers.Wish I could offer more.Beat the Beast.  Al

          aldakota22
          Participant

            I am so sorry you are going through all this.Thank God you were able to get  the info you needed to get your doctors on board for the combination traetment.I can only imagine the worry and concern you feel.Will keep you both in my prayers.Wish I could offer more.Beat the Beast.  Al

            aldakota22
            Participant

              I am so sorry you are going through all this.Thank God you were able to get  the info you needed to get your doctors on board for the combination traetment.I can only imagine the worry and concern you feel.Will keep you both in my prayers.Wish I could offer more.Beat the Beast.  Al

              bikerwife
              Participant

                Could they not o Gamma knife surgery first before trying whole brain. PRAYERS sent for you I know what your feeling. Lynn   then a  on 6 in  feb 2012  gamma  7 . Scans last week  12  more. 

                  lrkg1234
                  Participant

                    The gamma knife was not suggested, there were 7 spots total, none over 2 mm. 

                    They just did the STR on a tiny spot about 6 weeks ago and thought this WBR would keep things from popping up too quickly.  Hopefully the Yervoy with the radiation crosses the brain/blood barrier and does something.  Too late now anyway, they already zapped him and are on a program. 

                    We both really like the radiology oncologist.  He seems to know his stuff and he's in US New & World Reports list of doctors that you should know.  We trust him and he's at least open to checking things out and making phone calls to find out more information if needed.  Anyone that actually listens and hears their patients seems to be hard to come by. 

                    POW
                    Participant

                      From everything I have read and heard, including from my brother's doctors, it seems like if you have a few brain tumors– 1, 2, maybe 3– they will try to gamma knife them. However, when you have a large number of small tumors, the doctors suspect that there are even more hidden in the brain somewhere that they can't yet see with MRI. If they gamma knife all the small ones, more might just crop up a month or two later. That is usually when they recommend whole brain radiation. I know that there are patients here who have had 4 or more tumors gamma knifed at once. There are also people who had WBR for one tumor. But generally, the doctors are trying to figure out if gamma knife will really solve the problem or not. 

                      POW
                      Participant

                        From everything I have read and heard, including from my brother's doctors, it seems like if you have a few brain tumors– 1, 2, maybe 3– they will try to gamma knife them. However, when you have a large number of small tumors, the doctors suspect that there are even more hidden in the brain somewhere that they can't yet see with MRI. If they gamma knife all the small ones, more might just crop up a month or two later. That is usually when they recommend whole brain radiation. I know that there are patients here who have had 4 or more tumors gamma knifed at once. There are also people who had WBR for one tumor. But generally, the doctors are trying to figure out if gamma knife will really solve the problem or not. 

                        POW
                        Participant

                          From everything I have read and heard, including from my brother's doctors, it seems like if you have a few brain tumors– 1, 2, maybe 3– they will try to gamma knife them. However, when you have a large number of small tumors, the doctors suspect that there are even more hidden in the brain somewhere that they can't yet see with MRI. If they gamma knife all the small ones, more might just crop up a month or two later. That is usually when they recommend whole brain radiation. I know that there are patients here who have had 4 or more tumors gamma knifed at once. There are also people who had WBR for one tumor. But generally, the doctors are trying to figure out if gamma knife will really solve the problem or not. 

                          lrkg1234
                          Participant

                            The gamma knife was not suggested, there were 7 spots total, none over 2 mm. 

                            They just did the STR on a tiny spot about 6 weeks ago and thought this WBR would keep things from popping up too quickly.  Hopefully the Yervoy with the radiation crosses the brain/blood barrier and does something.  Too late now anyway, they already zapped him and are on a program. 

                            We both really like the radiology oncologist.  He seems to know his stuff and he's in US New & World Reports list of doctors that you should know.  We trust him and he's at least open to checking things out and making phone calls to find out more information if needed.  Anyone that actually listens and hears their patients seems to be hard to come by. 

                            lrkg1234
                            Participant

                              The gamma knife was not suggested, there were 7 spots total, none over 2 mm. 

                              They just did the STR on a tiny spot about 6 weeks ago and thought this WBR would keep things from popping up too quickly.  Hopefully the Yervoy with the radiation crosses the brain/blood barrier and does something.  Too late now anyway, they already zapped him and are on a program. 

                              We both really like the radiology oncologist.  He seems to know his stuff and he's in US New & World Reports list of doctors that you should know.  We trust him and he's at least open to checking things out and making phone calls to find out more information if needed.  Anyone that actually listens and hears their patients seems to be hard to come by. 

                            bikerwife
                            Participant

                              Could they not o Gamma knife surgery first before trying whole brain. PRAYERS sent for you I know what your feeling. Lynn   then a  on 6 in  feb 2012  gamma  7 . Scans last week  12  more. 

                              bikerwife
                              Participant

                                Could they not o Gamma knife surgery first before trying whole brain. PRAYERS sent for you I know what your feeling. Lynn   then a  on 6 in  feb 2012  gamma  7 . Scans last week  12  more. 

                                Charlie S
                                Participant

                                  At the risk of appearing insenitive, IL2 protocol says one week on, one week off, repeat.

                                  wait two weeks then scan. for comparison.  Six weeks.

                                  Was this how it was determined that IL2 did not work?

                                  Charlie S

                                   

                                   

                                   

                                   

                                  Charlie S
                                  Participant

                                    At the risk of appearing insenitive, IL2 protocol says one week on, one week off, repeat.

                                    wait two weeks then scan. for comparison.  Six weeks.

                                    Was this how it was determined that IL2 did not work?

                                    Charlie S

                                     

                                     

                                     

                                     

                                    Charlie S
                                    Participant

                                      At the risk of appearing insenitive, IL2 protocol says one week on, one week off, repeat.

                                      wait two weeks then scan. for comparison.  Six weeks.

                                      Was this how it was determined that IL2 did not work?

                                      Charlie S

                                       

                                       

                                       

                                       

                                        lrkg1234
                                        Participant

                                          Well I could be off about the exact, dates/timing with the IL-2.  It was two sets of 5 days with about 10 days off between. The stereotactic radiation scan was put off until after the IL-2 scans because we didn't want to get billed for too many scans.

                                          He was told the Friday before last (the 18th) that the scans showed no shrinkage anywhere and growth of the primary tumor in the esophagus, it's basically closing up. They also thought they found a few more brain spots.  They couldn't see all 7 spots until they sent us to the more detailed MRI, I forget what it's called.

                                          They put in a stomach tube because of the esophagus tumor growth.  That was this Wednesday the 23rd. Then we went back to the radiation oncologist for the more detailed scan of the brain this Friday the 25th and found out there were a total of 7.  So, today he started the WBR. 

                                          Like I said, not exactly sure of the dates, but I can tell you it's been a crappy time.

                                          lrkg1234
                                          Participant

                                            Well I could be off about the exact, dates/timing with the IL-2.  It was two sets of 5 days with about 10 days off between. The stereotactic radiation scan was put off until after the IL-2 scans because we didn't want to get billed for too many scans.

                                            He was told the Friday before last (the 18th) that the scans showed no shrinkage anywhere and growth of the primary tumor in the esophagus, it's basically closing up. They also thought they found a few more brain spots.  They couldn't see all 7 spots until they sent us to the more detailed MRI, I forget what it's called.

                                            They put in a stomach tube because of the esophagus tumor growth.  That was this Wednesday the 23rd. Then we went back to the radiation oncologist for the more detailed scan of the brain this Friday the 25th and found out there were a total of 7.  So, today he started the WBR. 

                                            Like I said, not exactly sure of the dates, but I can tell you it's been a crappy time.

                                            lrkg1234
                                            Participant

                                              Well I could be off about the exact, dates/timing with the IL-2.  It was two sets of 5 days with about 10 days off between. The stereotactic radiation scan was put off until after the IL-2 scans because we didn't want to get billed for too many scans.

                                              He was told the Friday before last (the 18th) that the scans showed no shrinkage anywhere and growth of the primary tumor in the esophagus, it's basically closing up. They also thought they found a few more brain spots.  They couldn't see all 7 spots until they sent us to the more detailed MRI, I forget what it's called.

                                              They put in a stomach tube because of the esophagus tumor growth.  That was this Wednesday the 23rd. Then we went back to the radiation oncologist for the more detailed scan of the brain this Friday the 25th and found out there were a total of 7.  So, today he started the WBR. 

                                              Like I said, not exactly sure of the dates, but I can tell you it's been a crappy time.

                                            JerryfromFauq
                                            Participant

                                              At the start of reading your post, I was going to suggest what what you came up with.  Upon further reading I came up with some questions about the IL-2 (immunotherapy) treatment. 

                                              How many weeks did Scottl receive? 

                                              How much was the growth during and after the treatments? 

                                              When was the last administration of his IL-2?

                                              I did a search on "immunotherapy AND radiation" and found many interesting articles.  So far the main case talked about was Yervoy (Ipi)(an immunotherapy)/ which was followed by radiation of one tumor.  The resulting abscopal effect reduced tumors throughout the body.  I have heard of no-one that has looked at/for such an occurance after having IL-2 then radiation.  Would like to hear about cases like this after reading the articles.   A couple of locations are looking at Ipi anad radiation either sequently or concurrently. 

                                                   Would love to hear your results over the next few years.

                                              JerryfromFauq
                                              Participant

                                                At the start of reading your post, I was going to suggest what what you came up with.  Upon further reading I came up with some questions about the IL-2 (immunotherapy) treatment. 

                                                How many weeks did Scottl receive? 

                                                How much was the growth during and after the treatments? 

                                                When was the last administration of his IL-2?

                                                I did a search on "immunotherapy AND radiation" and found many interesting articles.  So far the main case talked about was Yervoy (Ipi)(an immunotherapy)/ which was followed by radiation of one tumor.  The resulting abscopal effect reduced tumors throughout the body.  I have heard of no-one that has looked at/for such an occurance after having IL-2 then radiation.  Would like to hear about cases like this after reading the articles.   A couple of locations are looking at Ipi anad radiation either sequently or concurrently. 

                                                     Would love to hear your results over the next few years.

                                                JerryfromFauq
                                                Participant

                                                  At the start of reading your post, I was going to suggest what what you came up with.  Upon further reading I came up with some questions about the IL-2 (immunotherapy) treatment. 

                                                  How many weeks did Scottl receive? 

                                                  How much was the growth during and after the treatments? 

                                                  When was the last administration of his IL-2?

                                                  I did a search on "immunotherapy AND radiation" and found many interesting articles.  So far the main case talked about was Yervoy (Ipi)(an immunotherapy)/ which was followed by radiation of one tumor.  The resulting abscopal effect reduced tumors throughout the body.  I have heard of no-one that has looked at/for such an occurance after having IL-2 then radiation.  Would like to hear about cases like this after reading the articles.   A couple of locations are looking at Ipi anad radiation either sequently or concurrently. 

                                                       Would love to hear your results over the next few years.

                                                    lrkg1234
                                                    Participant

                                                      Hi Jerry,

                                                       

                                                      Hope you are doing well. 

                                                      Yes.  The IL-2 treatment was the standard by the book treatment and the scan was at 6 weeks.  There was minimal progression (the teeny-tiny brain mets) and no shrinkage either.   But it was obvious that the main tumor in his esophagus was bigger.  That was a bummer because if only one thing would shrink then we would have picked the esophagal tumor because it causes so much discomfort and is closing.  It could have also eliminated the feeding tube.  It didn't take much expertise to see that that tumor was indeed bigger. 

                                                      This IPI/Radiation plan was not a long developed idea, it just happened that he had IL-2, failed and then needs to do something else, sooner rather than later.  The brain mets put another block in the road by adding 2.5 weeks of treatment so we were happy to learn about the prospect of concurrent IPI treatment with radiation.   Maybe it can boost the effect, maybe not, but at least we are getting started on the next treatment that he wanted to do anyway.  The IPI takes 12 weeks, so waisting time now is not a good thing, best to get started. 

                                                      It's a new idea and has not been done much, there is a clinical trial going on based on our radiation oncologist's findings.  So, there is limited experience with it. 

                                                      Hopefully the insurance goes with this and doesn't mess up the plan. 

                                                      Good Luck.  I'll keep posting with the new.  I hope we can help anyone out, since we have been helped by the board ourselves. 

                                                      Take care.  Lisa

                                                      lrkg1234
                                                      Participant

                                                        Hi Jerry,

                                                         

                                                        Hope you are doing well. 

                                                        Yes.  The IL-2 treatment was the standard by the book treatment and the scan was at 6 weeks.  There was minimal progression (the teeny-tiny brain mets) and no shrinkage either.   But it was obvious that the main tumor in his esophagus was bigger.  That was a bummer because if only one thing would shrink then we would have picked the esophagal tumor because it causes so much discomfort and is closing.  It could have also eliminated the feeding tube.  It didn't take much expertise to see that that tumor was indeed bigger. 

                                                        This IPI/Radiation plan was not a long developed idea, it just happened that he had IL-2, failed and then needs to do something else, sooner rather than later.  The brain mets put another block in the road by adding 2.5 weeks of treatment so we were happy to learn about the prospect of concurrent IPI treatment with radiation.   Maybe it can boost the effect, maybe not, but at least we are getting started on the next treatment that he wanted to do anyway.  The IPI takes 12 weeks, so waisting time now is not a good thing, best to get started. 

                                                        It's a new idea and has not been done much, there is a clinical trial going on based on our radiation oncologist's findings.  So, there is limited experience with it. 

                                                        Hopefully the insurance goes with this and doesn't mess up the plan. 

                                                        Good Luck.  I'll keep posting with the new.  I hope we can help anyone out, since we have been helped by the board ourselves. 

                                                        Take care.  Lisa

                                                        lrkg1234
                                                        Participant

                                                          Hi Jerry,

                                                           

                                                          Hope you are doing well. 

                                                          Yes.  The IL-2 treatment was the standard by the book treatment and the scan was at 6 weeks.  There was minimal progression (the teeny-tiny brain mets) and no shrinkage either.   But it was obvious that the main tumor in his esophagus was bigger.  That was a bummer because if only one thing would shrink then we would have picked the esophagal tumor because it causes so much discomfort and is closing.  It could have also eliminated the feeding tube.  It didn't take much expertise to see that that tumor was indeed bigger. 

                                                          This IPI/Radiation plan was not a long developed idea, it just happened that he had IL-2, failed and then needs to do something else, sooner rather than later.  The brain mets put another block in the road by adding 2.5 weeks of treatment so we were happy to learn about the prospect of concurrent IPI treatment with radiation.   Maybe it can boost the effect, maybe not, but at least we are getting started on the next treatment that he wanted to do anyway.  The IPI takes 12 weeks, so waisting time now is not a good thing, best to get started. 

                                                          It's a new idea and has not been done much, there is a clinical trial going on based on our radiation oncologist's findings.  So, there is limited experience with it. 

                                                          Hopefully the insurance goes with this and doesn't mess up the plan. 

                                                          Good Luck.  I'll keep posting with the new.  I hope we can help anyone out, since we have been helped by the board ourselves. 

                                                          Take care.  Lisa

                                                        Tina D
                                                        Participant

                                                          Lisa,

                                                          I cant imagine what these past weeks, esp this past week have been like for you guys. I am glad you have a plan and options right away available and started. SO glad you have Drs that you like and trust ! I have also read abt those effects with tx combined with radiation. When I asked Dr Fetcher abt it she was extrememly surprised ( and a little taken aback) and asked if Id been reading the New England Journal of Medicine… nope, just came across an article, and since have also heard t from members on here. So, we will be praying for the abscopal effect for him! I will be having my 3rd ipi tx tomorrow, and so far no adverse effects – many times this is the case for the 1st and 2nd tx, so it seems like this would be the very best time to be combining it with the radiation txs. I have read that there is a lot of sleeping required usually after WBR and you may want to search on here for specifically what to expect. It is temporary and just seems to be a part of the healing process required.

                                                          So sorry things are so incredibly rough right now, but I am hopeful that he will get good results and start to see things turning around… many such stories from those who have already passed through similar waters & that is always encouraging.

                                                          I agree with you whole heartedly abt this website and the people on it. What a huge gift it is. Hang in there and keep taking this thing one day at a time.

                                                          Tina

                                                          Tina D
                                                          Participant

                                                            Lisa,

                                                            I cant imagine what these past weeks, esp this past week have been like for you guys. I am glad you have a plan and options right away available and started. SO glad you have Drs that you like and trust ! I have also read abt those effects with tx combined with radiation. When I asked Dr Fetcher abt it she was extrememly surprised ( and a little taken aback) and asked if Id been reading the New England Journal of Medicine… nope, just came across an article, and since have also heard t from members on here. So, we will be praying for the abscopal effect for him! I will be having my 3rd ipi tx tomorrow, and so far no adverse effects – many times this is the case for the 1st and 2nd tx, so it seems like this would be the very best time to be combining it with the radiation txs. I have read that there is a lot of sleeping required usually after WBR and you may want to search on here for specifically what to expect. It is temporary and just seems to be a part of the healing process required.

                                                            So sorry things are so incredibly rough right now, but I am hopeful that he will get good results and start to see things turning around… many such stories from those who have already passed through similar waters & that is always encouraging.

                                                            I agree with you whole heartedly abt this website and the people on it. What a huge gift it is. Hang in there and keep taking this thing one day at a time.

                                                            Tina

                                                              DaMookR
                                                              Participant

                                                                My father was recently diagnosed with stage IV melanoma, brain metastasis.  He has undergone 10 full brain radiation treatments.  This morning he was told that he is BRAF negative, disqualifying him from the  local clinical.  The only other metastisis was to a lymph node which has been removed.  Is IPI an option for a patient who presents only with brain tumors? 

                                                                DaMookR
                                                                Participant

                                                                  My father was recently diagnosed with stage IV melanoma, brain metastasis.  He has undergone 10 full brain radiation treatments.  This morning he was told that he is BRAF negative, disqualifying him from the  local clinical.  The only other metastisis was to a lymph node which has been removed.  Is IPI an option for a patient who presents only with brain tumors? 

                                                                  DaMookR
                                                                  Participant

                                                                    My father was recently diagnosed with stage IV melanoma, brain metastasis.  He has undergone 10 full brain radiation treatments.  This morning he was told that he is BRAF negative, disqualifying him from the  local clinical.  The only other metastisis was to a lymph node which has been removed.  Is IPI an option for a patient who presents only with brain tumors? 

                                                                    lrkg1234
                                                                    Participant

                                                                      Hi,

                                                                      Yes, depending on your dad's insurance he may be able to get IPI treatment.  

                                                                      My husband is being treated for the brain mets with the radiation and the Yervoy/IPI is an overall cancer treatment that is intened for the whole body.  If the IPI does cross the blood brain barrier then it may help with the brain mets too.  That's the therory. 

                                                                      Good luck with your dad.  It's hard for sure. 

                                                                      Did your dad get any other tests for mutations?  If he is C-Kit positive then they might try him on Gleevec or Dasatinib. 

                                                                      lrkg1234
                                                                      Participant

                                                                        Hi,

                                                                        Yes, depending on your dad's insurance he may be able to get IPI treatment.  

                                                                        My husband is being treated for the brain mets with the radiation and the Yervoy/IPI is an overall cancer treatment that is intened for the whole body.  If the IPI does cross the blood brain barrier then it may help with the brain mets too.  That's the therory. 

                                                                        Good luck with your dad.  It's hard for sure. 

                                                                        Did your dad get any other tests for mutations?  If he is C-Kit positive then they might try him on Gleevec or Dasatinib. 

                                                                        lrkg1234
                                                                        Participant

                                                                          Hi,

                                                                          Yes, depending on your dad's insurance he may be able to get IPI treatment.  

                                                                          My husband is being treated for the brain mets with the radiation and the Yervoy/IPI is an overall cancer treatment that is intened for the whole body.  If the IPI does cross the blood brain barrier then it may help with the brain mets too.  That's the therory. 

                                                                          Good luck with your dad.  It's hard for sure. 

                                                                          Did your dad get any other tests for mutations?  If he is C-Kit positive then they might try him on Gleevec or Dasatinib. 

                                                                          DaMookR
                                                                          Participant

                                                                            My father was recently diagnosed with stage IV melanoma, brain metastasis.  He has undergone 10 full brain radiation treatments.  This morning he was told that he is BRAF negative, disqualifying him from the  local clinical.  The only other metastasis was to a lymph node which has been removed.  Is IPI an option for a patient who presents only with brain tumors? 

                                                                            DaMookR
                                                                            Participant

                                                                              My father was recently diagnosed with stage IV melanoma, brain metastasis.  He has undergone 10 full brain radiation treatments.  This morning he was told that he is BRAF negative, disqualifying him from the  local clinical.  The only other metastasis was to a lymph node which has been removed.  Is IPI an option for a patient who presents only with brain tumors? 

                                                                              DaMookR
                                                                              Participant

                                                                                My father was recently diagnosed with stage IV melanoma, brain metastasis.  He has undergone 10 full brain radiation treatments.  This morning he was told that he is BRAF negative, disqualifying him from the  local clinical.  The only other metastasis was to a lymph node which has been removed.  Is IPI an option for a patient who presents only with brain tumors? 

                                                                                lrkg1234
                                                                                Participant

                                                                                  Hi Tina,

                                                                                  Happy to hear that you have taken the IPI well.  You are in our prayers.  It's a long wait I know.  It's awesome that you have handled it with little problems so far.  Hopefully round 3 goes as well as the others do. 

                                                                                  Please keep me posted as to how you are doing.  I know I will have lots of questions about side effects etc.

                                                                                  You are getting your IPI in St. Louis right?

                                                                                  Wishing you the best.  Lisa

                                                                                  Tina D
                                                                                  Participant

                                                                                    Lisa… yes, I am going to Dr Linette at Siteman Cancer Center in St Louis.It is only  about 3  1/2  hrs to get there & we stay overnight after treatment.  Please feel free to contact me if you think I could help… or if you would like an ear! Praying for you guys. Please let us know how he is doing as you are able.

                                                                                    Tina

                                                                                    Tina D
                                                                                    Participant

                                                                                      Lisa… yes, I am going to Dr Linette at Siteman Cancer Center in St Louis.It is only  about 3  1/2  hrs to get there & we stay overnight after treatment.  Please feel free to contact me if you think I could help… or if you would like an ear! Praying for you guys. Please let us know how he is doing as you are able.

                                                                                      Tina

                                                                                      Tina D
                                                                                      Participant

                                                                                        Lisa… yes, I am going to Dr Linette at Siteman Cancer Center in St Louis.It is only  about 3  1/2  hrs to get there & we stay overnight after treatment.  Please feel free to contact me if you think I could help… or if you would like an ear! Praying for you guys. Please let us know how he is doing as you are able.

                                                                                        Tina

                                                                                        lrkg1234
                                                                                        Participant

                                                                                          Hi Tina,

                                                                                          Happy to hear that you have taken the IPI well.  You are in our prayers.  It's a long wait I know.  It's awesome that you have handled it with little problems so far.  Hopefully round 3 goes as well as the others do. 

                                                                                          Please keep me posted as to how you are doing.  I know I will have lots of questions about side effects etc.

                                                                                          You are getting your IPI in St. Louis right?

                                                                                          Wishing you the best.  Lisa

                                                                                          lrkg1234
                                                                                          Participant

                                                                                            Hi Tina,

                                                                                            Happy to hear that you have taken the IPI well.  You are in our prayers.  It's a long wait I know.  It's awesome that you have handled it with little problems so far.  Hopefully round 3 goes as well as the others do. 

                                                                                            Please keep me posted as to how you are doing.  I know I will have lots of questions about side effects etc.

                                                                                            You are getting your IPI in St. Louis right?

                                                                                            Wishing you the best.  Lisa

                                                                                          Tina D
                                                                                          Participant

                                                                                            Lisa,

                                                                                            I cant imagine what these past weeks, esp this past week have been like for you guys. I am glad you have a plan and options right away available and started. SO glad you have Drs that you like and trust ! I have also read abt those effects with tx combined with radiation. When I asked Dr Fetcher abt it she was extrememly surprised ( and a little taken aback) and asked if Id been reading the New England Journal of Medicine… nope, just came across an article, and since have also heard t from members on here. So, we will be praying for the abscopal effect for him! I will be having my 3rd ipi tx tomorrow, and so far no adverse effects – many times this is the case for the 1st and 2nd tx, so it seems like this would be the very best time to be combining it with the radiation txs. I have read that there is a lot of sleeping required usually after WBR and you may want to search on here for specifically what to expect. It is temporary and just seems to be a part of the healing process required.

                                                                                            So sorry things are so incredibly rough right now, but I am hopeful that he will get good results and start to see things turning around… many such stories from those who have already passed through similar waters & that is always encouraging.

                                                                                            I agree with you whole heartedly abt this website and the people on it. What a huge gift it is. Hang in there and keep taking this thing one day at a time.

                                                                                            Tina

                                                                                            DaMookR
                                                                                            Participant

                                                                                              Is the IPI being administered to treat brain metastasis?

                                                                                              DaMookR
                                                                                              Participant

                                                                                                Is the IPI being administered to treat brain metastasis?

                                                                                                DaMookR
                                                                                                Participant

                                                                                                  Is the IPI being administered to treat brain metastasis?

                                                                                                  Phil S
                                                                                                  Participant
                                                                                                    Lisa, Sorry to hear that you both have had a rough few weeks, and that IL2 didn’t work. So glad you are moving ahead with WBR and Ipi, hope they work well together. Plus, just maybe Scott’s body has been primed to respond to Ipi by all that recent IL2. You are both in our thoughts. God bless, Valerie (Phil’s Wife)
                                                                                                    Phil S
                                                                                                    Participant
                                                                                                      Lisa, Sorry to hear that you both have had a rough few weeks, and that IL2 didn’t work. So glad you are moving ahead with WBR and Ipi, hope they work well together. Plus, just maybe Scott’s body has been primed to respond to Ipi by all that recent IL2. You are both in our thoughts. God bless, Valerie (Phil’s Wife)
                                                                                                      Phil S
                                                                                                      Participant
                                                                                                        Lisa, Sorry to hear that you both have had a rough few weeks, and that IL2 didn’t work. So glad you are moving ahead with WBR and Ipi, hope they work well together. Plus, just maybe Scott’s body has been primed to respond to Ipi by all that recent IL2. You are both in our thoughts. God bless, Valerie (Phil’s Wife)
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