chrisholder

To: greatladywilson…   I'm a 68 year old male being treated at Dana Farber for mm in the maxillary sinus that was diagnosed in May, 2015.  I decided against the radical surgery which up to recently has been often done with, in my opinion reading the research, of qustionable value for long-term duration. Was on Ipi/NIvo for a short time but side effects were too harsh.  After recovery, I switched to Keytruda (Pembrolizumab) in Sept, 2015 and am still on it.  Much clear progress of the Pembro but also clear that it was not enough.  On Jan 2, '16 I began an aggressive 7 week IMRT radiation of the tumor.  Many researcher docs feel that newest research suggests that the combo of Pembro and radiation can be a stimulus for each to do better.  Feel free to ask any specific questions & I'll try to answer.  It may help for you to refer back to all of my previous posts for a fuller history.  Also many others have been dealing with this far longer than I.  Hopefully, they will chime in with their stories too.   Chris Holder

To: greatladywilson…   I'm a 68 year old male being treated at Dana Farber for mm in the maxillary sinus that was diagnosed in May, 2015.  I decided against the radical surgery which up to recently has been often done with, in my opinion reading the research, of qustionable value for long-term duration. Was on Ipi/NIvo for a short time but side effects were too harsh.  After recovery, I switched to Keytruda (Pembrolizumab) in Sept, 2015 and am still on it.  Much clear progress of the Pembro but also clear that it was not enough.  On Jan 2, '16 I began an aggressive 7 week IMRT radiation of the tumor.  Many researcher docs feel that newest research suggests that the combo of Pembro and radiation can be a stimulus for each to do better.  Feel free to ask any specific questions & I'll try to answer.  It may help for you to refer back to all of my previous posts for a fuller history.  Also many others have been dealing with this far longer than I.  Hopefully, they will chime in with their stories too.   Chris Holder

To: greatladywilson…   I'm a 68 year old male being treated at Dana Farber for mm in the maxillary sinus that was diagnosed in May, 2015.  I decided against the radical surgery which up to recently has been often done with, in my opinion reading the research, of qustionable value for long-term duration. Was on Ipi/NIvo for a short time but side effects were too harsh.  After recovery, I switched to Keytruda (Pembrolizumab) in Sept, 2015 and am still on it.  Much clear progress of the Pembro but also clear that it was not enough.  On Jan 2, '16 I began an aggressive 7 week IMRT radiation of the tumor.  Many researcher docs feel that newest research suggests that the combo of Pembro and radiation can be a stimulus for each to do better.  Feel free to ask any specific questions & I'll try to answer.  It may help for you to refer back to all of my previous posts for a fuller history.  Also many others have been dealing with this far longer than I.  Hopefully, they will chime in with their stories too.   Chris Holder

Gary and AllysonRuth, and the others:   This are such interesting and complicated and, I think, ultimately hopeful stories!  And, Gary, I am afraid that adding mine may not assist you much, but the combination of these stories may give us all some hope today and maybe will offer future mm patients greater hope!   

I was in the last Ipi/Nivo trial before the combo was appoved by the FDA, but had to drop out after only two infusions due to many hospitaizing side effects.   After recovered from that (btw, mine is in the right maxillary sinus – no mets yet), I began a course of Keytruda (Pembro, most of us call it), now five months into the infusions.  Both biopsies and scans showed clear cell death in the tumor area & no mets (thanks, Pembro!) but the tumor was still growing apace.  So Medical Oncologist decided to work with the Radiation Oncologist for all of the reasons everyone else who has posted here knows.  It's early yet – I'm only 3 weeks in to the 7 week course of radiation – but here's the thing: no scans or biopsies yet, of course, buy my rad. onc. says she has not seen (just with naked eye)  such an obvious visible shrinkage in such a short time before. And this is the first time they have had a case similar to mine combining Pembro w/ IMRT.   So…Hopeful?  I think so.   Helpful to everyone here?  I have no idea, but I hope adding the story to the mix will at least buoy us our positive outlooks!  Best to all, Chris

Gary and AllysonRuth, and the others:   This are such interesting and complicated and, I think, ultimately hopeful stories!  And, Gary, I am afraid that adding mine may not assist you much, but the combination of these stories may give us all some hope today and maybe will offer future mm patients greater hope!   

I was in the last Ipi/Nivo trial before the combo was appoved by the FDA, but had to drop out after only two infusions due to many hospitaizing side effects.   After recovered from that (btw, mine is in the right maxillary sinus – no mets yet), I began a course of Keytruda (Pembro, most of us call it), now five months into the infusions.  Both biopsies and scans showed clear cell death in the tumor area & no mets (thanks, Pembro!) but the tumor was still growing apace.  So Medical Oncologist decided to work with the Radiation Oncologist for all of the reasons everyone else who has posted here knows.  It's early yet – I'm only 3 weeks in to the 7 week course of radiation – but here's the thing: no scans or biopsies yet, of course, buy my rad. onc. says she has not seen (just with naked eye)  such an obvious visible shrinkage in such a short time before. And this is the first time they have had a case similar to mine combining Pembro w/ IMRT.   So…Hopeful?  I think so.   Helpful to everyone here?  I have no idea, but I hope adding the story to the mix will at least buoy us our positive outlooks!  Best to all, Chris

Gary and AllysonRuth, and the others:   This are such interesting and complicated and, I think, ultimately hopeful stories!  And, Gary, I am afraid that adding mine may not assist you much, but the combination of these stories may give us all some hope today and maybe will offer future mm patients greater hope!   

I was in the last Ipi/Nivo trial before the combo was appoved by the FDA, but had to drop out after only two infusions due to many hospitaizing side effects.   After recovered from that (btw, mine is in the right maxillary sinus – no mets yet), I began a course of Keytruda (Pembro, most of us call it), now five months into the infusions.  Both biopsies and scans showed clear cell death in the tumor area & no mets (thanks, Pembro!) but the tumor was still growing apace.  So Medical Oncologist decided to work with the Radiation Oncologist for all of the reasons everyone else who has posted here knows.  It's early yet – I'm only 3 weeks in to the 7 week course of radiation – but here's the thing: no scans or biopsies yet, of course, buy my rad. onc. says she has not seen (just with naked eye)  such an obvious visible shrinkage in such a short time before. And this is the first time they have had a case similar to mine combining Pembro w/ IMRT.   So…Hopeful?  I think so.   Helpful to everyone here?  I have no idea, but I hope adding the story to the mix will at least buoy us our positive outlooks!  Best to all, Chris

In early summer of this year I started ipi/nivo but only lasted for two infusions before being hospitalized w/ auto immune hepatitis, thyroid disease (knocked it out) and other BP and potential pneumonitis issues.  Not gastro, though.  Had prednisone at 160mg for several weeks before the taper off & finally went off P. about 5-6 weeks later.  Recovering from side effects kept me off actual cancer drugs until Sept when I started Pembrolizumab & am stil on it (I have mucosal m. in the sinus).  Prednisone is a necessary drug to reverse the side effect damage, but you have to wait for the full taper down before you can start another imm. treatment.  Good luck!   Chris

In early summer of this year I started ipi/nivo but only lasted for two infusions before being hospitalized w/ auto immune hepatitis, thyroid disease (knocked it out) and other BP and potential pneumonitis issues.  Not gastro, though.  Had prednisone at 160mg for several weeks before the taper off & finally went off P. about 5-6 weeks later.  Recovering from side effects kept me off actual cancer drugs until Sept when I started Pembrolizumab & am stil on it (I have mucosal m. in the sinus).  Prednisone is a necessary drug to reverse the side effect damage, but you have to wait for the full taper down before you can start another imm. treatment.  Good luck!   Chris

In early summer of this year I started ipi/nivo but only lasted for two infusions before being hospitalized w/ auto immune hepatitis, thyroid disease (knocked it out) and other BP and potential pneumonitis issues.  Not gastro, though.  Had prednisone at 160mg for several weeks before the taper off & finally went off P. about 5-6 weeks later.  Recovering from side effects kept me off actual cancer drugs until Sept when I started Pembrolizumab & am stil on it (I have mucosal m. in the sinus).  Prednisone is a necessary drug to reverse the side effect damage, but you have to wait for the full taper down before you can start another imm. treatment.  Good luck!   Chris