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SRS

› Forums › General Melanoma Community › SRS

  • Post
    • February 16, 2016 at 3:32 pm
    jamieth29
    Participant
    Well after ditching the advice of local radiation oncologist to wait a month and see what spots on brain do i decided to get a hold of U Chicago and talk to them. I went down Friday and went over scans and they agree spots are most likely mets. They immediately said lets get after these while they are small and there is no edema. Went through mask fitment and simulation on Friday while I was there and I’m heading down right now to have procedure done. Been a very strange process as Dr Luke is on leave for two weeks and I have been unable to contact him. Decided to just go with my gut…started nivolumab last Wednesday also. The plan is to then wait 3 months before they scan me to see if it worked. Was wondering if that seems normal to those that have been through this process to wait 3 months? Also wanted to say thanks to Bubbles, Mat, Ed, Kyle, Jenny, Greg, Brian and all the others that have given advice to me over the last couple weeks. I really appreciate it and it means the world to me. I’m going to just keep pushing forward and see what happens. Like I have said to others…in the end it’s all you can do.
    Jamie
Viewing 23 reply threads
  • Replies
      • February 16, 2016 at 3:55 pm
      Mat
      Participant

      Jamie, sounds good (and happy to help).  The scan cycle sounds good to me.  I think the norm is to do 12 weeks from the start of immunotherapy as they're suggesting.  If you feel the need, you could push them for 10 weeks.  I would (and I do) push for the brain MRI every 8 weeks.  Now that you've had brain mets, they should be able to get this approved.

      • February 16, 2016 at 3:55 pm
      Mat
      Participant

      Jamie, sounds good (and happy to help).  The scan cycle sounds good to me.  I think the norm is to do 12 weeks from the start of immunotherapy as they're suggesting.  If you feel the need, you could push them for 10 weeks.  I would (and I do) push for the brain MRI every 8 weeks.  Now that you've had brain mets, they should be able to get this approved.

      • February 16, 2016 at 3:55 pm
      Mat
      Participant

      Jamie, sounds good (and happy to help).  The scan cycle sounds good to me.  I think the norm is to do 12 weeks from the start of immunotherapy as they're suggesting.  If you feel the need, you could push them for 10 weeks.  I would (and I do) push for the brain MRI every 8 weeks.  Now that you've had brain mets, they should be able to get this approved.

      • February 16, 2016 at 3:58 pm
      dfeng
      Participant

      Have enough rest and if you feel anything unusual, call the doc ASAP.

      nivolumab should work on this, best wishes for you.

      • February 16, 2016 at 3:58 pm
      dfeng
      Participant

      Have enough rest and if you feel anything unusual, call the doc ASAP.

      nivolumab should work on this, best wishes for you.

      • February 16, 2016 at 3:58 pm
      dfeng
      Participant

      Have enough rest and if you feel anything unusual, call the doc ASAP.

      nivolumab should work on this, best wishes for you.

      • February 16, 2016 at 5:06 pm
      rosa1
      Participant

      Jamie,

      I had SRS in August, and 10 weeks after I had a brain MRI to check on the progress. I've been also on Keytruda during the whole thing.

      Best wishes,Rosa

      • February 16, 2016 at 5:06 pm
      rosa1
      Participant

      Jamie,

      I had SRS in August, and 10 weeks after I had a brain MRI to check on the progress. I've been also on Keytruda during the whole thing.

      Best wishes,Rosa

      • February 16, 2016 at 5:06 pm
      rosa1
      Participant

      Jamie,

      I had SRS in August, and 10 weeks after I had a brain MRI to check on the progress. I've been also on Keytruda during the whole thing.

      Best wishes,Rosa

      • February 16, 2016 at 6:20 pm
      jenny22
      Participant

      Hi Jamie- Sounds like a good move…glad you decided to just get it done an not wait..

      As I write this I am sitting in NYU, just had Neck, Chest, Abdomen, and Pelvic CT and BRAIN MRI…..had to talk my usual valium for do the MRI…..Unfortunately very claustrophoc….so 15 mg later, I am now very relaxed…..not a bad state to be in as i sit and wait to see PAvlick at 2:30 for results……

      While i was dirinking my contrast I started chatting with a guy sitting next to me…..turns out he lives in TX, but was particapating in trial at Moffit with Weber…..when weber moved to NYU, this guy did too, and now flies here every 3 months…..after failing IPI., weber put him on Keytruda….now 2 years later, Stage IV he continues to be NED…..good story…..

      Jamie, I hope NIVO turns out to be your magic bullet with minimim to tolerable side effects and the SRS zaps those brain mets to oblivian.

      I know how controversial much of the adjuvant treatment discussion are on here….I met with SLoan again alst week, and they reiterated that theyare NOT using IPI at all for stage III adjuvant treatments…..

      So i now havea  tie breaker….SLOAN and NYU- NO to IPI, UPENN, yes to IPI at 3mg. Pavlick stil reccommends Leukine….

      I guess for today just want to get past scan results and then will have to make a decision….as someone recently advise me, be careful of "analysis paralysis"….I thought that was good advise.

      Thanks for your thanks…..its everyones pleasure here…..we, and I in particular are wishing you ALL THE BEST…

      KEep in ouch,

      jenny

      • February 16, 2016 at 6:20 pm
      jenny22
      Participant

      Hi Jamie- Sounds like a good move…glad you decided to just get it done an not wait..

      As I write this I am sitting in NYU, just had Neck, Chest, Abdomen, and Pelvic CT and BRAIN MRI…..had to talk my usual valium for do the MRI…..Unfortunately very claustrophoc….so 15 mg later, I am now very relaxed…..not a bad state to be in as i sit and wait to see PAvlick at 2:30 for results……

      While i was dirinking my contrast I started chatting with a guy sitting next to me…..turns out he lives in TX, but was particapating in trial at Moffit with Weber…..when weber moved to NYU, this guy did too, and now flies here every 3 months…..after failing IPI., weber put him on Keytruda….now 2 years later, Stage IV he continues to be NED…..good story…..

      Jamie, I hope NIVO turns out to be your magic bullet with minimim to tolerable side effects and the SRS zaps those brain mets to oblivian.

      I know how controversial much of the adjuvant treatment discussion are on here….I met with SLoan again alst week, and they reiterated that theyare NOT using IPI at all for stage III adjuvant treatments…..

      So i now havea  tie breaker….SLOAN and NYU- NO to IPI, UPENN, yes to IPI at 3mg. Pavlick stil reccommends Leukine….

      I guess for today just want to get past scan results and then will have to make a decision….as someone recently advise me, be careful of "analysis paralysis"….I thought that was good advise.

      Thanks for your thanks…..its everyones pleasure here…..we, and I in particular are wishing you ALL THE BEST…

      KEep in ouch,

      jenny

        • February 16, 2016 at 11:42 pm
        keepthefaith11
        Participant
        Jamie, praying you get great results from the treatments. Sounds like you made the right choice getting a second opinion.

        Jenny, been thinking about you all afternoon. Hoping for good scan results.

        If you don’t mind me asking, what are their reasons for not giving Ipi as adjuvant?

        Sending positive thoughts to all of you getting scans this month.

        Annie

        • February 16, 2016 at 11:42 pm
        keepthefaith11
        Participant
        Jamie, praying you get great results from the treatments. Sounds like you made the right choice getting a second opinion.

        Jenny, been thinking about you all afternoon. Hoping for good scan results.

        If you don’t mind me asking, what are their reasons for not giving Ipi as adjuvant?

        Sending positive thoughts to all of you getting scans this month.

        Annie

        • February 17, 2016 at 2:16 am
        gregor913
        Participant
        I believe some are not offering ippi because of toxic side effects if the disease burden is low. My onc recommended ippi because instead of fighting a billion cells it’s better to fight a 100. That’s if it’s Still in your body. Hopefully your dad’s surgery was curative and he will never deal with it again. Prayers. Greg
        • February 17, 2016 at 2:16 am
        gregor913
        Participant
        I believe some are not offering ippi because of toxic side effects if the disease burden is low. My onc recommended ippi because instead of fighting a billion cells it’s better to fight a 100. That’s if it’s Still in your body. Hopefully your dad’s surgery was curative and he will never deal with it again. Prayers. Greg
        • February 17, 2016 at 11:47 am
        keepthefaith11
        Participant
        I also don’t think it makes sense to group everyone into “stage 3”, with such differences between a,b and c. Had my dad been stage a or b, instead of c (and with extracapsular extention), we probably would have opted for watch and wait. Mainly because he is a bit older, almost 69. Thanks!/
        • February 17, 2016 at 11:47 am
        keepthefaith11
        Participant
        I also don’t think it makes sense to group everyone into “stage 3”, with such differences between a,b and c. Had my dad been stage a or b, instead of c (and with extracapsular extention), we probably would have opted for watch and wait. Mainly because he is a bit older, almost 69. Thanks!/
        • February 17, 2016 at 11:47 am
        keepthefaith11
        Participant
        I also don’t think it makes sense to group everyone into “stage 3”, with such differences between a,b and c. Had my dad been stage a or b, instead of c (and with extracapsular extention), we probably would have opted for watch and wait. Mainly because he is a bit older, almost 69. Thanks!/
        • February 17, 2016 at 2:16 am
        gregor913
        Participant
        I believe some are not offering ippi because of toxic side effects if the disease burden is low. My onc recommended ippi because instead of fighting a billion cells it’s better to fight a 100. That’s if it’s Still in your body. Hopefully your dad’s surgery was curative and he will never deal with it again. Prayers. Greg
        • February 16, 2016 at 11:42 pm
        keepthefaith11
        Participant
        Jamie, praying you get great results from the treatments. Sounds like you made the right choice getting a second opinion.

        Jenny, been thinking about you all afternoon. Hoping for good scan results.

        If you don’t mind me asking, what are their reasons for not giving Ipi as adjuvant?

        Sending positive thoughts to all of you getting scans this month.

        Annie

      • February 16, 2016 at 6:20 pm
      jenny22
      Participant

      Hi Jamie- Sounds like a good move…glad you decided to just get it done an not wait..

      As I write this I am sitting in NYU, just had Neck, Chest, Abdomen, and Pelvic CT and BRAIN MRI…..had to talk my usual valium for do the MRI…..Unfortunately very claustrophoc….so 15 mg later, I am now very relaxed…..not a bad state to be in as i sit and wait to see PAvlick at 2:30 for results……

      While i was dirinking my contrast I started chatting with a guy sitting next to me…..turns out he lives in TX, but was particapating in trial at Moffit with Weber…..when weber moved to NYU, this guy did too, and now flies here every 3 months…..after failing IPI., weber put him on Keytruda….now 2 years later, Stage IV he continues to be NED…..good story…..

      Jamie, I hope NIVO turns out to be your magic bullet with minimim to tolerable side effects and the SRS zaps those brain mets to oblivian.

      I know how controversial much of the adjuvant treatment discussion are on here….I met with SLoan again alst week, and they reiterated that theyare NOT using IPI at all for stage III adjuvant treatments…..

      So i now havea  tie breaker….SLOAN and NYU- NO to IPI, UPENN, yes to IPI at 3mg. Pavlick stil reccommends Leukine….

      I guess for today just want to get past scan results and then will have to make a decision….as someone recently advise me, be careful of "analysis paralysis"….I thought that was good advise.

      Thanks for your thanks…..its everyones pleasure here…..we, and I in particular are wishing you ALL THE BEST…

      KEep in ouch,

      jenny

      • February 17, 2016 at 3:26 am
      Bubbles
      Participant

      Oh, Jamie. Hang in there. I think you are doing great! Nivo – check. Now, SRS – check. I am an old person in this scenario…as I was treated with surgery to a lung met and SRS for a brain met within weeks….but both before ipi or BRAFi, much less anti-PD1, were available. However, after SRS in April in 2010….I had routine scans in August as follow-up and my next ones in December as prep for entering the nivo trial I ended up participating in. So….your schedule sounds about right. Even once I was on nivo….scans were only every 3 months. C

      • February 17, 2016 at 3:26 am
      Bubbles
      Participant

      Oh, Jamie. Hang in there. I think you are doing great! Nivo – check. Now, SRS – check. I am an old person in this scenario…as I was treated with surgery to a lung met and SRS for a brain met within weeks….but both before ipi or BRAFi, much less anti-PD1, were available. However, after SRS in April in 2010….I had routine scans in August as follow-up and my next ones in December as prep for entering the nivo trial I ended up participating in. So….your schedule sounds about right. Even once I was on nivo….scans were only every 3 months. C

      • February 17, 2016 at 3:26 am
      Bubbles
      Participant

      Oh, Jamie. Hang in there. I think you are doing great! Nivo – check. Now, SRS – check. I am an old person in this scenario…as I was treated with surgery to a lung met and SRS for a brain met within weeks….but both before ipi or BRAFi, much less anti-PD1, were available. However, after SRS in April in 2010….I had routine scans in August as follow-up and my next ones in December as prep for entering the nivo trial I ended up participating in. So….your schedule sounds about right. Even once I was on nivo….scans were only every 3 months. C

      • February 17, 2016 at 3:58 pm
      gregor913
      Participant
      You were in my prayers Jaime. Technology is great and your young and strong. Your going to do great. Greg
      • February 17, 2016 at 3:58 pm
      gregor913
      Participant
      You were in my prayers Jaime. Technology is great and your young and strong. Your going to do great. Greg
      • February 17, 2016 at 3:58 pm
      gregor913
      Participant
      You were in my prayers Jaime. Technology is great and your young and strong. Your going to do great. Greg
      • February 17, 2016 at 6:51 pm
      jamieth29
      Participant
      Thanks everyone for the advice and support. I couldn’t make it through all three spots being done in one session so have to go back at 4 today and have last one done. They said nobody makes it through 3 and most don’t even make 2. The procedure itself is easy but the mask they have on me is like someone pushing down on your face for 45 min. Started to get nauseous about halfway through 2nd spot. They had me covered in blankets and i was sweating something fierce. Other then that no really side effects or anything. Just sitting at Ikea with the wife burning time till appt. What i was wondering about scan time was about brain mri not body scans. 3 months just seems like forever to me right now but as Mat said i will see if I can push for a 2 month check. Just another day in melanoma land i guess.
      Jamie
      • February 17, 2016 at 6:51 pm
      jamieth29
      Participant
      Thanks everyone for the advice and support. I couldn’t make it through all three spots being done in one session so have to go back at 4 today and have last one done. They said nobody makes it through 3 and most don’t even make 2. The procedure itself is easy but the mask they have on me is like someone pushing down on your face for 45 min. Started to get nauseous about halfway through 2nd spot. They had me covered in blankets and i was sweating something fierce. Other then that no really side effects or anything. Just sitting at Ikea with the wife burning time till appt. What i was wondering about scan time was about brain mri not body scans. 3 months just seems like forever to me right now but as Mat said i will see if I can push for a 2 month check. Just another day in melanoma land i guess.
      Jamie
        • February 17, 2016 at 7:35 pm
        jenny22
        Participant

        Hey Jamie-

        I know you're just bout done with the SRS, but wondered if its ok to tkae semthing before the preocedure…For me, with neck radiation on havng to have a mask i HAD to take valium before every session…I had the short course 5 does reginem so it was doable..EVEN yesterday though for my BRAIN MRI had to do same…took 15 mg valium and got through it with no problem.

        Is that possible to do for SRS?  If so maybe you could get something for todays last one….

        GOOD luck!

        Jenny

        • February 17, 2016 at 7:35 pm
        jenny22
        Participant

        Hey Jamie-

        I know you're just bout done with the SRS, but wondered if its ok to tkae semthing before the preocedure…For me, with neck radiation on havng to have a mask i HAD to take valium before every session…I had the short course 5 does reginem so it was doable..EVEN yesterday though for my BRAIN MRI had to do same…took 15 mg valium and got through it with no problem.

        Is that possible to do for SRS?  If so maybe you could get something for todays last one….

        GOOD luck!

        Jenny

        • February 17, 2016 at 7:36 pm
        jenny22
        Participant

        Yikes…to many typos, sorry…..hope you got my drift!

         

        • February 17, 2016 at 7:36 pm
        jenny22
        Participant

        Yikes…to many typos, sorry…..hope you got my drift!

         

        • February 17, 2016 at 7:46 pm
        jamieth29
        Participant
        Jenny i took 2mg of ativan wasn’t so much anxiety or claustrophobia but the downward pressure on my face. When they took the mask off the doctor said whoa…my forehead was so red from the pressure of mask. He even took a picture.
        • February 17, 2016 at 7:46 pm
        jamieth29
        Participant
        Jenny i took 2mg of ativan wasn’t so much anxiety or claustrophobia but the downward pressure on my face. When they took the mask off the doctor said whoa…my forehead was so red from the pressure of mask. He even took a picture.
        • February 17, 2016 at 7:58 pm
        jenny22
        Participant

        UGH…..so sorry jamie….I hated the mask for Radiation……but it was a hard mesh and they could cut open a spot around my nose so the presure wasn't too bad….

        Hopefully you can brun those pictures and not ever have to look at them again!!!!!

        Hope all goes well later today.

        I am so damn sorry you are going through all this !!!!! 

        let us now how it goes

        jenny

         

        • February 17, 2016 at 7:58 pm
        jenny22
        Participant

        UGH…..so sorry jamie….I hated the mask for Radiation……but it was a hard mesh and they could cut open a spot around my nose so the presure wasn't too bad….

        Hopefully you can brun those pictures and not ever have to look at them again!!!!!

        Hope all goes well later today.

        I am so damn sorry you are going through all this !!!!! 

        let us now how it goes

        jenny

         

        • February 17, 2016 at 8:07 pm
        jamieth29
        Participant
        Yeah Jenny the nose is one of the worst parts. Anyway back i go for another 45 min or so and it’s over.
        • February 17, 2016 at 8:07 pm
        jamieth29
        Participant
        Yeah Jenny the nose is one of the worst parts. Anyway back i go for another 45 min or so and it’s over.
        • February 17, 2016 at 8:07 pm
        jamieth29
        Participant
        Yeah Jenny the nose is one of the worst parts. Anyway back i go for another 45 min or so and it’s over.
        • February 17, 2016 at 8:10 pm
        jenny22
        Participant

        Well, take your Ativan…or whatever may help and lets hope it does what it needs to do and that you'll never need it again….followed by your NIVO cocktail and maybe that will do it!!!!!

        Anyway thats what I am hoping for for you!

        • February 17, 2016 at 8:10 pm
        jenny22
        Participant

        Well, take your Ativan…or whatever may help and lets hope it does what it needs to do and that you'll never need it again….followed by your NIVO cocktail and maybe that will do it!!!!!

        Anyway thats what I am hoping for for you!

        • February 17, 2016 at 8:10 pm
        jenny22
        Participant

        Well, take your Ativan…or whatever may help and lets hope it does what it needs to do and that you'll never need it again….followed by your NIVO cocktail and maybe that will do it!!!!!

        Anyway thats what I am hoping for for you!

        • February 17, 2016 at 7:58 pm
        jenny22
        Participant

        UGH…..so sorry jamie….I hated the mask for Radiation……but it was a hard mesh and they could cut open a spot around my nose so the presure wasn't too bad….

        Hopefully you can brun those pictures and not ever have to look at them again!!!!!

        Hope all goes well later today.

        I am so damn sorry you are going through all this !!!!! 

        let us now how it goes

        jenny

         

        • February 17, 2016 at 7:46 pm
        jamieth29
        Participant
        Jenny i took 2mg of ativan wasn’t so much anxiety or claustrophobia but the downward pressure on my face. When they took the mask off the doctor said whoa…my forehead was so red from the pressure of mask. He even took a picture.
        • February 17, 2016 at 7:36 pm
        jenny22
        Participant

        Yikes…to many typos, sorry…..hope you got my drift!

         

        • February 17, 2016 at 7:35 pm
        jenny22
        Participant

        Hey Jamie-

        I know you're just bout done with the SRS, but wondered if its ok to tkae semthing before the preocedure…For me, with neck radiation on havng to have a mask i HAD to take valium before every session…I had the short course 5 does reginem so it was doable..EVEN yesterday though for my BRAIN MRI had to do same…took 15 mg valium and got through it with no problem.

        Is that possible to do for SRS?  If so maybe you could get something for todays last one….

        GOOD luck!

        Jenny

        • February 17, 2016 at 7:55 pm
        Bubbles
        Participant

        Hey Jamie.  Keep hanging tough.  In my prior post…I was refering to a brain MRI.  I had MRI's of the brain as I noted before starting my trial and then CT's of neck, chest, abd/pelvis with an MRI of the brain every three months while on my 2 1/2 year Nivo trial.  From reading lots of studies, I would say, as best as one can in melanoma world, that is the routine time frame.  WIshing you well.  c

        • February 17, 2016 at 7:55 pm
        Bubbles
        Participant

        Hey Jamie.  Keep hanging tough.  In my prior post…I was refering to a brain MRI.  I had MRI's of the brain as I noted before starting my trial and then CT's of neck, chest, abd/pelvis with an MRI of the brain every three months while on my 2 1/2 year Nivo trial.  From reading lots of studies, I would say, as best as one can in melanoma world, that is the routine time frame.  WIshing you well.  c

        • February 17, 2016 at 8:04 pm
        jamieth29
        Participant
        Thanks Celeste, the radiation oncologist agreed with exactly what your saying… that 3 month intervals should be good. Just nervous I guess.
        • February 17, 2016 at 8:04 pm
        jamieth29
        Participant
        Thanks Celeste, the radiation oncologist agreed with exactly what your saying… that 3 month intervals should be good. Just nervous I guess.
        • February 17, 2016 at 8:04 pm
        jamieth29
        Participant
        Thanks Celeste, the radiation oncologist agreed with exactly what your saying… that 3 month intervals should be good. Just nervous I guess.
        • February 17, 2016 at 9:38 pm
        Mat
        Participant

        No disagreement from me–but after I progressed with a 1.5cm tumor in my optic nerve less than 8 weeks after a clean MRI, I insisted (and continue to insist) on the most aggressive possible schedule.  Prior to that progression (having had more minor brain mets), my MRI schedule was closer to every 12 weeks.  The overall point is that Stage IV patients should be vigilant about brain MRIs.  Regarding SRS, Jamie, I'm sorry to hear that you needed multiple sessions.  At UPenn, they give you a mild sedative which knocks you out for the procedure.

        • February 18, 2016 at 12:04 am
        jamieth29
        Participant
        Got it Mat thanks…they seemed to left a door open for a sooner scan if i think i need it. Doctor said if i have any question something is happening call and we can move it up. I also wondered about the sedative but after the first session so i guess i was behind the 8 ball. Today went fast and much easier than yesterday. I am going to inquire about 8 week scans. Thanks again
        • February 18, 2016 at 12:04 am
        jamieth29
        Participant
        Got it Mat thanks…they seemed to left a door open for a sooner scan if i think i need it. Doctor said if i have any question something is happening call and we can move it up. I also wondered about the sedative but after the first session so i guess i was behind the 8 ball. Today went fast and much easier than yesterday. I am going to inquire about 8 week scans. Thanks again
        • February 18, 2016 at 12:04 am
        jamieth29
        Participant
        Got it Mat thanks…they seemed to left a door open for a sooner scan if i think i need it. Doctor said if i have any question something is happening call and we can move it up. I also wondered about the sedative but after the first session so i guess i was behind the 8 ball. Today went fast and much easier than yesterday. I am going to inquire about 8 week scans. Thanks again
        • February 17, 2016 at 9:38 pm
        Mat
        Participant

        No disagreement from me–but after I progressed with a 1.5cm tumor in my optic nerve less than 8 weeks after a clean MRI, I insisted (and continue to insist) on the most aggressive possible schedule.  Prior to that progression (having had more minor brain mets), my MRI schedule was closer to every 12 weeks.  The overall point is that Stage IV patients should be vigilant about brain MRIs.  Regarding SRS, Jamie, I'm sorry to hear that you needed multiple sessions.  At UPenn, they give you a mild sedative which knocks you out for the procedure.

        • February 17, 2016 at 9:38 pm
        Mat
        Participant

        No disagreement from me–but after I progressed with a 1.5cm tumor in my optic nerve less than 8 weeks after a clean MRI, I insisted (and continue to insist) on the most aggressive possible schedule.  Prior to that progression (having had more minor brain mets), my MRI schedule was closer to every 12 weeks.  The overall point is that Stage IV patients should be vigilant about brain MRIs.  Regarding SRS, Jamie, I'm sorry to hear that you needed multiple sessions.  At UPenn, they give you a mild sedative which knocks you out for the procedure.

        • February 17, 2016 at 7:55 pm
        Bubbles
        Participant

        Hey Jamie.  Keep hanging tough.  In my prior post…I was refering to a brain MRI.  I had MRI's of the brain as I noted before starting my trial and then CT's of neck, chest, abd/pelvis with an MRI of the brain every three months while on my 2 1/2 year Nivo trial.  From reading lots of studies, I would say, as best as one can in melanoma world, that is the routine time frame.  WIshing you well.  c

      • February 17, 2016 at 6:51 pm
      jamieth29
      Participant
      Thanks everyone for the advice and support. I couldn’t make it through all three spots being done in one session so have to go back at 4 today and have last one done. They said nobody makes it through 3 and most don’t even make 2. The procedure itself is easy but the mask they have on me is like someone pushing down on your face for 45 min. Started to get nauseous about halfway through 2nd spot. They had me covered in blankets and i was sweating something fierce. Other then that no really side effects or anything. Just sitting at Ikea with the wife burning time till appt. What i was wondering about scan time was about brain mri not body scans. 3 months just seems like forever to me right now but as Mat said i will see if I can push for a 2 month check. Just another day in melanoma land i guess.
      Jamie
      • February 19, 2016 at 10:18 am
      Gwenmorgan
      Participant

      After cyber knife I report any neurological changes, left arm weakness, dizziness, I had a seizure last Thursday from edema and hit the ER.  They always do a brain MRI with contrast regardless of time frame as it is considered new symptoms.

      Also, no nivo for me do to the edema so it is awesome that you can continue.

      Best wishes!

      • February 19, 2016 at 10:18 am
      Gwenmorgan
      Participant

      After cyber knife I report any neurological changes, left arm weakness, dizziness, I had a seizure last Thursday from edema and hit the ER.  They always do a brain MRI with contrast regardless of time frame as it is considered new symptoms.

      Also, no nivo for me do to the edema so it is awesome that you can continue.

      Best wishes!

        • February 19, 2016 at 2:53 pm
        jamieth29
        Participant
        Thanks Gwen, so far things seem to be ok with side effects. How big were your mets? Did they do them all at once?
        • February 19, 2016 at 2:53 pm
        jamieth29
        Participant
        Thanks Gwen, so far things seem to be ok with side effects. How big were your mets? Did they do them all at once?
        • February 19, 2016 at 2:53 pm
        jamieth29
        Participant
        Thanks Gwen, so far things seem to be ok with side effects. How big were your mets? Did they do them all at once?
      • February 19, 2016 at 10:18 am
      Gwenmorgan
      Participant

      After cyber knife I report any neurological changes, left arm weakness, dizziness, I had a seizure last Thursday from edema and hit the ER.  They always do a brain MRI with contrast regardless of time frame as it is considered new symptoms.

      Also, no nivo for me do to the edema so it is awesome that you can continue.

      Best wishes!

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