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Quick Update since Thursday

Forums General Melanoma Community Quick Update since Thursday

  • Post
    ecc26
    Participant

      With Roswell Park's relatively new frameless Gamma Knife system, they treated 19 brain mets over the course of about 2 hrs. I have to say, having had 4 procedures with the frame, I can't imagine why anyone would choose that method- I have permanent dents in my skull and each time when the frame came off it took me a long time and a lot of medication to get over what I can only describe as the worst migrane you can possibly imagine (nausea and vomiting inclued) despite some pretty significant pain medication intened to combat that.

      I had to get up about half way through because my back doesn't appreciate being in that position and not moving, but so much better, and for anyone that doesn't have that many mets, I expect it would be much easier. They said there was only one other person who had had as long a treatment as I had- drove up from NYC specifically for the frame free for the same reason I was so happy it was available- many mets and many previous treatments. Personal choice, but I am certainly glad I had the frame free option.

      Otherwise, starting today steroids are being reduced, though I'll keep the Keppra for a few more weeks. First infusion of the combo Monday morning, so we'll see how that goes, but very happy to have something done about the brain mets. Always worked well for me in the past, hoping it does this time as well.

      Good luck to all of you who are in the midst of, or just starting your fight. Please try and take some comfort in the fact that I've been fighting since 2011, have had whole brain radiation and now 5 rounds of Gamma Knife in addition to every FDA approved treatment (one right after the other- often as they became approved). I've never had an any time since the start where I was "in remission" or even "stable" and off meds, but I'm still going. It took me a very long time to come to terms with my disease and be comfortable enough to talk about it with anyone, so you will not get any judgement from me as far as how you come to terms, or what you share/when or what decisions you make for yourself regarding treatment.

      I am well aware that every person and their case is different and I've been lucky, but keep fighting, keep looking for the next thing. It's ok to be upset and confused and feel down for a while with new diagnoses and setbacks, just don't stay stuck there. Use this forum, and any other support systems you can fine and lean on them to help keep you going, but don't give up. It's hard, but keep going, get yourself as much time as possible and don't look back and say "I wish…" or "I should have…", just keep looking forward, even when it's hard. We all have a good reason to fight- find that and keep going.

      -Eva

    Viewing 20 reply threads
    • Replies
        debwray
        Participant

          Hi Eva,

          Thanks for taking the time and trouble to give feedback on your procedure and for the encouraging comments to all of us dealing with melanoma.Best of luck with your treatment. Am cheering you on and sending the first hug over the net in response to your post .

          debwray
          Participant

            Hi Eva,

            Thanks for taking the time and trouble to give feedback on your procedure and for the encouraging comments to all of us dealing with melanoma.Best of luck with your treatment. Am cheering you on and sending the first hug over the net in response to your post .

            debwray
            Participant

              Hi Eva,

              Thanks for taking the time and trouble to give feedback on your procedure and for the encouraging comments to all of us dealing with melanoma.Best of luck with your treatment. Am cheering you on and sending the first hug over the net in response to your post .

              DZnDef
              Participant

                Great post, Eva!  I'm glad the frameless option worked out so well for you.  Best of luck getting this best tamed.  Your post is a great inspiration to remind us all to keep on going!

                Cheers!

                Maggie

                DZnDef
                Participant

                  Great post, Eva!  I'm glad the frameless option worked out so well for you.  Best of luck getting this best tamed.  Your post is a great inspiration to remind us all to keep on going!

                  Cheers!

                  Maggie

                  DZnDef
                  Participant

                    Great post, Eva!  I'm glad the frameless option worked out so well for you.  Best of luck getting this best tamed.  Your post is a great inspiration to remind us all to keep on going!

                    Cheers!

                    Maggie

                    Maria C
                    Participant

                      Eva, thanks so much for sharing your latest brain mets experience. I can't tell you how hopeful it is to know others are going through this and still kicking along. That you are 5 years in is a real inspiration. I'm just one year in and going on my 3rd SRS treatment as soon as I heal from a craniotomy. It all feels so surreal because I'm not in any pain, but psychologically it's a real mind game!!

                      Can I ask a bit about the trajectory of your brain mets? That's the question I will be bringing to my Monday appt. when they set me up with a firm follow-up radiation plan. I want to know where I sit in the broader scheme of things, what track I'm on if every 2 months, 2-3 new small tumors are popping up in my brain. 19 mets to treat all at once sounds like an awful lot – can I ask how often you get your MRI's? When did the brain mets first appear and how many appeared with each scan? I'm naturally curious about the patterns/trajectory of disease progression in terms of brain mets.

                      Also, thanks for the heads up about Roswell Park's frameless gamma knife option. I may be moving my treatment from CT to NY so I'm very interested in learning the options available in the area. Have you heard whether there's any difference in accuracy, effectiveness or results from the various SRS options? It looks like I'll have a choice between gamma knife in CT or cyberknife in NY and I'm not sure which one is best for me.

                      So glad you are pushing forward with the combo treatment. I went through all 4 infusions this past year and a ton of side effects, but it's a comfort to know I've got something in my system that COULD be working in mysterious ways…

                      Once again, thank you for the gift of FIGHT ON in your voice, Eva! Best of luck with the combo!!

                       

                      Maria C
                      Participant

                        Eva, thanks so much for sharing your latest brain mets experience. I can't tell you how hopeful it is to know others are going through this and still kicking along. That you are 5 years in is a real inspiration. I'm just one year in and going on my 3rd SRS treatment as soon as I heal from a craniotomy. It all feels so surreal because I'm not in any pain, but psychologically it's a real mind game!!

                        Can I ask a bit about the trajectory of your brain mets? That's the question I will be bringing to my Monday appt. when they set me up with a firm follow-up radiation plan. I want to know where I sit in the broader scheme of things, what track I'm on if every 2 months, 2-3 new small tumors are popping up in my brain. 19 mets to treat all at once sounds like an awful lot – can I ask how often you get your MRI's? When did the brain mets first appear and how many appeared with each scan? I'm naturally curious about the patterns/trajectory of disease progression in terms of brain mets.

                        Also, thanks for the heads up about Roswell Park's frameless gamma knife option. I may be moving my treatment from CT to NY so I'm very interested in learning the options available in the area. Have you heard whether there's any difference in accuracy, effectiveness or results from the various SRS options? It looks like I'll have a choice between gamma knife in CT or cyberknife in NY and I'm not sure which one is best for me.

                        So glad you are pushing forward with the combo treatment. I went through all 4 infusions this past year and a ton of side effects, but it's a comfort to know I've got something in my system that COULD be working in mysterious ways…

                        Once again, thank you for the gift of FIGHT ON in your voice, Eva! Best of luck with the combo!!

                         

                        Maria C
                        Participant

                          Eva, thanks so much for sharing your latest brain mets experience. I can't tell you how hopeful it is to know others are going through this and still kicking along. That you are 5 years in is a real inspiration. I'm just one year in and going on my 3rd SRS treatment as soon as I heal from a craniotomy. It all feels so surreal because I'm not in any pain, but psychologically it's a real mind game!!

                          Can I ask a bit about the trajectory of your brain mets? That's the question I will be bringing to my Monday appt. when they set me up with a firm follow-up radiation plan. I want to know where I sit in the broader scheme of things, what track I'm on if every 2 months, 2-3 new small tumors are popping up in my brain. 19 mets to treat all at once sounds like an awful lot – can I ask how often you get your MRI's? When did the brain mets first appear and how many appeared with each scan? I'm naturally curious about the patterns/trajectory of disease progression in terms of brain mets.

                          Also, thanks for the heads up about Roswell Park's frameless gamma knife option. I may be moving my treatment from CT to NY so I'm very interested in learning the options available in the area. Have you heard whether there's any difference in accuracy, effectiveness or results from the various SRS options? It looks like I'll have a choice between gamma knife in CT or cyberknife in NY and I'm not sure which one is best for me.

                          So glad you are pushing forward with the combo treatment. I went through all 4 infusions this past year and a ton of side effects, but it's a comfort to know I've got something in my system that COULD be working in mysterious ways…

                          Once again, thank you for the gift of FIGHT ON in your voice, Eva! Best of luck with the combo!!

                           

                            ecc26
                            Participant

                              Everyone is different regarding brain mets- my first go-around with them included, if I remember 6 or 7 with possible leptomeningeal disease, for which targeted radiation is not an option, that was 2013. I did the whole brain radiation then and responded well, but each time I begin to fail a therapy they come back. Since the whole brain I've had 4 rounds (now 5) of the Gamma Knife. 

                              As far as Gamma vs Cyber Knife, I don't think there's really any difference except for the company and possibly the equipment. Gamma Knife has been the system most available to me. As far as the frame vs frameless, I trust my specialists enough that if they're offering it (and actually they now have both options, frame or frameless) I doubt there's much, if any difference in accuracy between them, though I haven't really done all the research myself.

                              This last time was a bit different from the others- I was on a trial for about 6 weeks that required the presence of brain mets and at least one had to be at least 1cm to qualify for the trial, so we let them get bigger than typical. Then, by the time it was determined I should leave the trial due to progression in the bran it turns out I had 19, with the largest of the older ones having grown quite a bit.

                              Having said that, as my PD-1 was failing before the trial started, I had 2 rounds of Gamma Knife about 2 months apart- 1 treated 15, the other 11, so it may just be a feature of my disease that they're popping up in such numbers.

                              I will also remark though that the team I use treats anything they think might be a problem, regardless of size, so it's not uncommon for me to have an MRI locally with the report coming bacak as 5 or 6 mets, then get up there less then a week later for treatment and find out that actually, the're going to treat twice or more that number. The difference between local radiologists/scans and specialists. 

                              In general, I'm on a quarterly scan schedule for both CT and MRI, but after the Gamma Knife treatments they do another scan in 6-8 weeks to check the progress, and depending on how that looks may ask me to come back for a second round, but that hasn't ever happened to me before- hoping it won't this time either. I will also note that while I have had a recent run of large numbers of mets due to treatments/trials failing, I have had runs while treatments are working where I haven't had to do any treatment. It does seem to work well for me, and I'm well aware that it doesn't alway work that well for others.

                              In general, I've never had any side effects from the mets, but I will say that every person is different, so I can't really tell you what numbers are "on track" as it's really whatever your particular disease is doing.

                              As far as differences between frame and frameless- the frame system, as I previously said in my post requires some sedation and a frame litterally screwed into your skull that can lock onto the table to prevent you from moving and the radiation missing the mark (if you send me an e-mail, I'll send you a photo), the real pain comes with the rapid pressure releas from removing the frame. With the frameless, there is no sedation and they simply mold a mesh mask to your face once you're on the table that then clips to the table to prevent you from moving in the same way as the frame does. With a treatment as long as what I had, I had to stop because I had some back pain form laying there so long and the back of my head was hurting from the pressure on the table. I got up, walked around, they gave me some pain killers, then the mask locked me back in position for the remainder of treatment.

                              This was long, but I hope it answered at least some of your questions. Feel free to e-mail me if you have others or would like to talk more.

                              -Eva

                              Maria C
                              Participant

                                Thank you so much Eva for your generosity of time and thought. You are truly, truly an inspiration for me because my mets are popping up only 2-3 at a time vs. your 11-15! You are one tough cookie and if you could do it, so can I….

                                Maria C
                                Participant

                                  Thank you so much Eva for your generosity of time and thought. You are truly, truly an inspiration for me because my mets are popping up only 2-3 at a time vs. your 11-15! You are one tough cookie and if you could do it, so can I….

                                  Maria C
                                  Participant

                                    Thank you so much Eva for your generosity of time and thought. You are truly, truly an inspiration for me because my mets are popping up only 2-3 at a time vs. your 11-15! You are one tough cookie and if you could do it, so can I….

                                    Maria C
                                    Participant

                                      Hi Eva – just wanted to follow up to let you know my apt. at Sloan went really well yesterday. They're putting a treatment plan in place that involves 5 consecutive days of radiation, about 45 min. each shot, to treat the bed left behind from the craniotomy, plus focused radiation to the 2 new mets on 1  or 2 of the 5 days, as well as possibly re-starting the infusions, all in one week. We were given hope that there's still a possibility of controlling the disease in the brain as the trajectory of my disease is not out of hand yet. The key will be getting back on an immunotherapy, with pembro now mentioned as a possibility. Their team needs to deliberate on that one. They also already took my stitches out! 42 counted :-)! My husband and I left with a strong sense of both competency and care. I forgot I wasn't supposed to mix alcohol with meds and had a martini at dinner afterward to celebrate…kicking myself this morning for forgetting…!

                                      Thank you again so much for sharing the details of your journey. I thought of you often yesterday and shared your story with my husband. He was inspired too. 

                                      Maria C
                                      Participant

                                        Hi Eva – just wanted to follow up to let you know my apt. at Sloan went really well yesterday. They're putting a treatment plan in place that involves 5 consecutive days of radiation, about 45 min. each shot, to treat the bed left behind from the craniotomy, plus focused radiation to the 2 new mets on 1  or 2 of the 5 days, as well as possibly re-starting the infusions, all in one week. We were given hope that there's still a possibility of controlling the disease in the brain as the trajectory of my disease is not out of hand yet. The key will be getting back on an immunotherapy, with pembro now mentioned as a possibility. Their team needs to deliberate on that one. They also already took my stitches out! 42 counted :-)! My husband and I left with a strong sense of both competency and care. I forgot I wasn't supposed to mix alcohol with meds and had a martini at dinner afterward to celebrate…kicking myself this morning for forgetting…!

                                        Thank you again so much for sharing the details of your journey. I thought of you often yesterday and shared your story with my husband. He was inspired too. 

                                        Maria C
                                        Participant

                                          Hi Eva – just wanted to follow up to let you know my apt. at Sloan went really well yesterday. They're putting a treatment plan in place that involves 5 consecutive days of radiation, about 45 min. each shot, to treat the bed left behind from the craniotomy, plus focused radiation to the 2 new mets on 1  or 2 of the 5 days, as well as possibly re-starting the infusions, all in one week. We were given hope that there's still a possibility of controlling the disease in the brain as the trajectory of my disease is not out of hand yet. The key will be getting back on an immunotherapy, with pembro now mentioned as a possibility. Their team needs to deliberate on that one. They also already took my stitches out! 42 counted :-)! My husband and I left with a strong sense of both competency and care. I forgot I wasn't supposed to mix alcohol with meds and had a martini at dinner afterward to celebrate…kicking myself this morning for forgetting…!

                                          Thank you again so much for sharing the details of your journey. I thought of you often yesterday and shared your story with my husband. He was inspired too. 

                                          ecc26
                                          Participant

                                            So happy to hear things went well for you! Sounds like you've got a good plan in place and feel good moving forward. Best of luck with the Pembro- it worked really well for me, including in my brain for a good year and a half, hopefully it will be just the thing you need to get this thing kicked.

                                            -Eva

                                            ecc26
                                            Participant

                                              So happy to hear things went well for you! Sounds like you've got a good plan in place and feel good moving forward. Best of luck with the Pembro- it worked really well for me, including in my brain for a good year and a half, hopefully it will be just the thing you need to get this thing kicked.

                                              -Eva

                                              Maria C
                                              Participant

                                                Hi Eva – sorry for the delay in responding, just noticing your reply now. Wondering if you had any side effects from the Pembro? Also, were you still on the pembro when you had the recurrence a year & a half later? I have no idea what lies ahead of me, I just know I need to stick around for my kids' sake….!!!

                                                Maria C
                                                Participant

                                                  Hi Eva – sorry for the delay in responding, just noticing your reply now. Wondering if you had any side effects from the Pembro? Also, were you still on the pembro when you had the recurrence a year & a half later? I have no idea what lies ahead of me, I just know I need to stick around for my kids' sake….!!!

                                                  ecc26
                                                  Participant

                                                    I did not have any noticable side effects, but I know some do. I was still getting infusions when I progressed. The plan had been to continue for 2 years then, as long as things were looking relatively good, try going off the drug. Didn't quite make it.

                                                    -Eva

                                                    ecc26
                                                    Participant

                                                      I did not have any noticable side effects, but I know some do. I was still getting infusions when I progressed. The plan had been to continue for 2 years then, as long as things were looking relatively good, try going off the drug. Didn't quite make it.

                                                      -Eva

                                                      Maria C
                                                      Participant

                                                        Good to know no side effects is a possibility…now I'm wondering what treatment you moved on to once the pembro failed?

                                                        Maria C
                                                        Participant

                                                          Good to know no side effects is a possibility…now I'm wondering what treatment you moved on to once the pembro failed?

                                                          Maria C
                                                          Participant

                                                            Good to know no side effects is a possibility…now I'm wondering what treatment you moved on to once the pembro failed?

                                                            ecc26
                                                            Participant

                                                              I did not have any noticable side effects, but I know some do. I was still getting infusions when I progressed. The plan had been to continue for 2 years then, as long as things were looking relatively good, try going off the drug. Didn't quite make it.

                                                              -Eva

                                                              Maria C
                                                              Participant

                                                                Hi Eva – sorry for the delay in responding, just noticing your reply now. Wondering if you had any side effects from the Pembro? Also, were you still on the pembro when you had the recurrence a year & a half later? I have no idea what lies ahead of me, I just know I need to stick around for my kids' sake….!!!

                                                                ecc26
                                                                Participant

                                                                  So happy to hear things went well for you! Sounds like you've got a good plan in place and feel good moving forward. Best of luck with the Pembro- it worked really well for me, including in my brain for a good year and a half, hopefully it will be just the thing you need to get this thing kicked.

                                                                  -Eva

                                                                  ecc26
                                                                  Participant

                                                                    Everyone is different regarding brain mets- my first go-around with them included, if I remember 6 or 7 with possible leptomeningeal disease, for which targeted radiation is not an option, that was 2013. I did the whole brain radiation then and responded well, but each time I begin to fail a therapy they come back. Since the whole brain I've had 4 rounds (now 5) of the Gamma Knife. 

                                                                    As far as Gamma vs Cyber Knife, I don't think there's really any difference except for the company and possibly the equipment. Gamma Knife has been the system most available to me. As far as the frame vs frameless, I trust my specialists enough that if they're offering it (and actually they now have both options, frame or frameless) I doubt there's much, if any difference in accuracy between them, though I haven't really done all the research myself.

                                                                    This last time was a bit different from the others- I was on a trial for about 6 weeks that required the presence of brain mets and at least one had to be at least 1cm to qualify for the trial, so we let them get bigger than typical. Then, by the time it was determined I should leave the trial due to progression in the bran it turns out I had 19, with the largest of the older ones having grown quite a bit.

                                                                    Having said that, as my PD-1 was failing before the trial started, I had 2 rounds of Gamma Knife about 2 months apart- 1 treated 15, the other 11, so it may just be a feature of my disease that they're popping up in such numbers.

                                                                    I will also remark though that the team I use treats anything they think might be a problem, regardless of size, so it's not uncommon for me to have an MRI locally with the report coming bacak as 5 or 6 mets, then get up there less then a week later for treatment and find out that actually, the're going to treat twice or more that number. The difference between local radiologists/scans and specialists. 

                                                                    In general, I'm on a quarterly scan schedule for both CT and MRI, but after the Gamma Knife treatments they do another scan in 6-8 weeks to check the progress, and depending on how that looks may ask me to come back for a second round, but that hasn't ever happened to me before- hoping it won't this time either. I will also note that while I have had a recent run of large numbers of mets due to treatments/trials failing, I have had runs while treatments are working where I haven't had to do any treatment. It does seem to work well for me, and I'm well aware that it doesn't alway work that well for others.

                                                                    In general, I've never had any side effects from the mets, but I will say that every person is different, so I can't really tell you what numbers are "on track" as it's really whatever your particular disease is doing.

                                                                    As far as differences between frame and frameless- the frame system, as I previously said in my post requires some sedation and a frame litterally screwed into your skull that can lock onto the table to prevent you from moving and the radiation missing the mark (if you send me an e-mail, I'll send you a photo), the real pain comes with the rapid pressure releas from removing the frame. With the frameless, there is no sedation and they simply mold a mesh mask to your face once you're on the table that then clips to the table to prevent you from moving in the same way as the frame does. With a treatment as long as what I had, I had to stop because I had some back pain form laying there so long and the back of my head was hurting from the pressure on the table. I got up, walked around, they gave me some pain killers, then the mask locked me back in position for the remainder of treatment.

                                                                    This was long, but I hope it answered at least some of your questions. Feel free to e-mail me if you have others or would like to talk more.

                                                                    -Eva

                                                                    ecc26
                                                                    Participant

                                                                      Everyone is different regarding brain mets- my first go-around with them included, if I remember 6 or 7 with possible leptomeningeal disease, for which targeted radiation is not an option, that was 2013. I did the whole brain radiation then and responded well, but each time I begin to fail a therapy they come back. Since the whole brain I've had 4 rounds (now 5) of the Gamma Knife. 

                                                                      As far as Gamma vs Cyber Knife, I don't think there's really any difference except for the company and possibly the equipment. Gamma Knife has been the system most available to me. As far as the frame vs frameless, I trust my specialists enough that if they're offering it (and actually they now have both options, frame or frameless) I doubt there's much, if any difference in accuracy between them, though I haven't really done all the research myself.

                                                                      This last time was a bit different from the others- I was on a trial for about 6 weeks that required the presence of brain mets and at least one had to be at least 1cm to qualify for the trial, so we let them get bigger than typical. Then, by the time it was determined I should leave the trial due to progression in the bran it turns out I had 19, with the largest of the older ones having grown quite a bit.

                                                                      Having said that, as my PD-1 was failing before the trial started, I had 2 rounds of Gamma Knife about 2 months apart- 1 treated 15, the other 11, so it may just be a feature of my disease that they're popping up in such numbers.

                                                                      I will also remark though that the team I use treats anything they think might be a problem, regardless of size, so it's not uncommon for me to have an MRI locally with the report coming bacak as 5 or 6 mets, then get up there less then a week later for treatment and find out that actually, the're going to treat twice or more that number. The difference between local radiologists/scans and specialists. 

                                                                      In general, I'm on a quarterly scan schedule for both CT and MRI, but after the Gamma Knife treatments they do another scan in 6-8 weeks to check the progress, and depending on how that looks may ask me to come back for a second round, but that hasn't ever happened to me before- hoping it won't this time either. I will also note that while I have had a recent run of large numbers of mets due to treatments/trials failing, I have had runs while treatments are working where I haven't had to do any treatment. It does seem to work well for me, and I'm well aware that it doesn't alway work that well for others.

                                                                      In general, I've never had any side effects from the mets, but I will say that every person is different, so I can't really tell you what numbers are "on track" as it's really whatever your particular disease is doing.

                                                                      As far as differences between frame and frameless- the frame system, as I previously said in my post requires some sedation and a frame litterally screwed into your skull that can lock onto the table to prevent you from moving and the radiation missing the mark (if you send me an e-mail, I'll send you a photo), the real pain comes with the rapid pressure releas from removing the frame. With the frameless, there is no sedation and they simply mold a mesh mask to your face once you're on the table that then clips to the table to prevent you from moving in the same way as the frame does. With a treatment as long as what I had, I had to stop because I had some back pain form laying there so long and the back of my head was hurting from the pressure on the table. I got up, walked around, they gave me some pain killers, then the mask locked me back in position for the remainder of treatment.

                                                                      This was long, but I hope it answered at least some of your questions. Feel free to e-mail me if you have others or would like to talk more.

                                                                      -Eva

                                                                    Maria C
                                                                    Participant

                                                                      Eva, thanks so much for sharing your latest brain mets experience. I can't tell you how hopeful it is to know others are going through this and still kicking along. That you are 5 years in is a real inspiration. I'm just one year in and going on my 3rd SRS treatment as soon as I heal from a craniotomy. It all feels so surreal because I'm not in any pain, but psychologically it's a real mind game!!

                                                                      Can I ask a bit about the trajectory of your brain mets? That's the question I will be bringing to my Monday appt. when they set me up with a firm follow-up radiation plan. I want to know where I sit in the broader scheme of things, what track I'm on if every 2 months, 2-3 new small tumors are popping up in my brain. 19 mets to treat all at once sounds like an awful lot – can I ask how often you get your MRI's? When did the brain mets first appear and how many appeared with each scan? I'm naturally curious about the patterns/trajectory of disease progression in terms of brain mets.

                                                                      Also, thanks for the heads up about Roswell Park's frameless gamma knife option. I may be moving my treatment from CT to NY so I'm very interested in learning the options available in the area. Have you heard whether there's any difference in accuracy, effectiveness or results from the various SRS options? It looks like I'll have a choice between gamma knife in CT or cyberknife in NY and I'm not sure which one is best for me.

                                                                      So glad you are pushing forward with the combo treatment. I went through all 4 infusions this past year and a ton of side effects, but it's a comfort to know I've got something in my system that COULD be working in mysterious ways…

                                                                      Once again, thank you for the gift of FIGHT ON in your voice, Eva! Best of luck with the combo!!

                                                                       

                                                                      Maria C
                                                                      Participant

                                                                        Eva, thanks so much for sharing your latest brain mets experience. I can't tell you how hopeful it is to know others are going through this and still kicking along. That you are 5 years in is a real inspiration. I'm just one year in and going on my 3rd SRS treatment as soon as I heal from a craniotomy. It all feels so surreal because I'm not in any pain, but psychologically it's a real mind game!!

                                                                        Can I ask a bit about the trajectory of your brain mets? That's the question I will be bringing to my Monday appt. when they set me up with a firm follow-up radiation plan. I want to know where I sit in the broader scheme of things, what track I'm on if every 2 months, 2-3 new small tumors are popping up in my brain. 19 mets to treat all at once sounds like an awful lot – can I ask how often you get your MRI's? When did the brain mets first appear and how many appeared with each scan? I'm naturally curious about the patterns/trajectory of disease progression in terms of brain mets.

                                                                        Also, thanks for the heads up about Roswell Park's frameless gamma knife option. I may be moving my treatment from CT to NY so I'm very interested in learning the options available in the area. Have you heard whether there's any difference in accuracy, effectiveness or results from the various SRS options? It looks like I'll have a choice between gamma knife in CT or cyberknife in NY and I'm not sure which one is best for me.

                                                                        So glad you are pushing forward with the combo treatment. I went through all 4 infusions this past year and a ton of side effects, but it's a comfort to know I've got something in my system that COULD be working in mysterious ways…

                                                                        Once again, thank you for the gift of FIGHT ON in your voice, Eva! Best of luck with the combo!!

                                                                         

                                                                        Maria C
                                                                        Participant

                                                                          Eva, thanks so much for sharing your latest brain mets experience. I can't tell you how hopeful it is to know others are going through this and still kicking along. That you are 5 years in is a real inspiration. I'm just one year in and going on my 3rd SRS treatment as soon as I heal from a craniotomy. It all feels so surreal because I'm not in any pain, but psychologically it's a real mind game!!

                                                                          Can I ask a bit about the trajectory of your brain mets? That's the question I will be bringing to my Monday appt. when they set me up with a firm follow-up radiation plan. I want to know where I sit in the broader scheme of things, what track I'm on if every 2 months, 2-3 new small tumors are popping up in my brain. 19 mets to treat all at once sounds like an awful lot – can I ask how often you get your MRI's? When did the brain mets first appear and how many appeared with each scan? I'm naturally curious about the patterns/trajectory of disease progression in terms of brain mets.

                                                                          Also, thanks for the heads up about Roswell Park's frameless gamma knife option. I may be moving my treatment from CT to NY so I'm very interested in learning the options available in the area. Have you heard whether there's any difference in accuracy, effectiveness or results from the various SRS options? It looks like I'll have a choice between gamma knife in CT or cyberknife in NY and I'm not sure which one is best for me.

                                                                          So glad you are pushing forward with the combo treatment. I went through all 4 infusions this past year and a ton of side effects, but it's a comfort to know I've got something in my system that COULD be working in mysterious ways…

                                                                          Once again, thank you for the gift of FIGHT ON in your voice, Eva! Best of luck with the combo!!

                                                                           

                                                                          JoshF
                                                                          Participant

                                                                            Eva-

                                                                            i believe you're one of the first people I became acquainted with on this forum. I remember 2011 when I was first diagnosed and as years went on and I followed your fight, I was always afraid that one day that'd be me. Well today, thank God minus the brain mets I'm in a bigger fight I could imagine. Thank you so much for sharing you struggle as well as the emotional toll this disease takes on you. You're inspirational and give hope that you can fight on. Yes we're all different and the disease will affect us different but reality, science & medicine is advancing and offering us the opportunity to fight back harder. People like you show us that we can do this with the hopes that the next thing just obliterates the crap in out body. My horsy we and hope for you is that the combo gives you healing in your body and at the bare minimum, stable disease. Though I'd like to say that's not acceptable and see you as NED!

                                                                            Josh

                                                                              ecc26
                                                                              Participant

                                                                                Thank you, Josh. While I haven't been around as much for the last year or so, I do check in and follow, even if I don't comment. I'm sorry for anyone who has to deal with any aspect of this disease and for those that have a bigger struggle, as you have had. I wish I could wave a magic wand and make it all go away and let everyone go back to healthy and happy. I have to say that I get a little jealous of those who respond well to something and get to at least be stable if not NED and off meds at least for a time. Not my reality, and I really feel for them when something starts to grow or something new pops up after a period of time like that. Seems cruel to be such a tease and then start all over again.

                                                                                I wish everyone the best of luck fighting this in any way they can!

                                                                                -Eva

                                                                                ecc26
                                                                                Participant

                                                                                  Thank you, Josh. While I haven't been around as much for the last year or so, I do check in and follow, even if I don't comment. I'm sorry for anyone who has to deal with any aspect of this disease and for those that have a bigger struggle, as you have had. I wish I could wave a magic wand and make it all go away and let everyone go back to healthy and happy. I have to say that I get a little jealous of those who respond well to something and get to at least be stable if not NED and off meds at least for a time. Not my reality, and I really feel for them when something starts to grow or something new pops up after a period of time like that. Seems cruel to be such a tease and then start all over again.

                                                                                  I wish everyone the best of luck fighting this in any way they can!

                                                                                  -Eva

                                                                                  JoshF
                                                                                  Participant

                                                                                    Unfortunately I can relate now as to being envious. I spent so much time more as NED than not and now in hindsight, I realize how fortunate I was with only small sub-q's. People have defeated large tumor loads…I like you hope & pray for everyone here. People haven been blessing in all this. Keep us posted…I want to do hear you're doing well!!!

                                                                                    Josh

                                                                                    JoshF
                                                                                    Participant

                                                                                      Unfortunately I can relate now as to being envious. I spent so much time more as NED than not and now in hindsight, I realize how fortunate I was with only small sub-q's. People have defeated large tumor loads…I like you hope & pray for everyone here. People haven been blessing in all this. Keep us posted…I want to do hear you're doing well!!!

                                                                                      Josh

                                                                                      JoshF
                                                                                      Participant

                                                                                        Unfortunately I can relate now as to being envious. I spent so much time more as NED than not and now in hindsight, I realize how fortunate I was with only small sub-q's. People have defeated large tumor loads…I like you hope & pray for everyone here. People haven been blessing in all this. Keep us posted…I want to do hear you're doing well!!!

                                                                                        Josh

                                                                                        ecc26
                                                                                        Participant

                                                                                          Thank you, Josh. While I haven't been around as much for the last year or so, I do check in and follow, even if I don't comment. I'm sorry for anyone who has to deal with any aspect of this disease and for those that have a bigger struggle, as you have had. I wish I could wave a magic wand and make it all go away and let everyone go back to healthy and happy. I have to say that I get a little jealous of those who respond well to something and get to at least be stable if not NED and off meds at least for a time. Not my reality, and I really feel for them when something starts to grow or something new pops up after a period of time like that. Seems cruel to be such a tease and then start all over again.

                                                                                          I wish everyone the best of luck fighting this in any way they can!

                                                                                          -Eva

                                                                                        JoshF
                                                                                        Participant

                                                                                          Eva-

                                                                                          i believe you're one of the first people I became acquainted with on this forum. I remember 2011 when I was first diagnosed and as years went on and I followed your fight, I was always afraid that one day that'd be me. Well today, thank God minus the brain mets I'm in a bigger fight I could imagine. Thank you so much for sharing you struggle as well as the emotional toll this disease takes on you. You're inspirational and give hope that you can fight on. Yes we're all different and the disease will affect us different but reality, science & medicine is advancing and offering us the opportunity to fight back harder. People like you show us that we can do this with the hopes that the next thing just obliterates the crap in out body. My horsy we and hope for you is that the combo gives you healing in your body and at the bare minimum, stable disease. Though I'd like to say that's not acceptable and see you as NED!

                                                                                          Josh

                                                                                          JoshF
                                                                                          Participant

                                                                                            Eva-

                                                                                            i believe you're one of the first people I became acquainted with on this forum. I remember 2011 when I was first diagnosed and as years went on and I followed your fight, I was always afraid that one day that'd be me. Well today, thank God minus the brain mets I'm in a bigger fight I could imagine. Thank you so much for sharing you struggle as well as the emotional toll this disease takes on you. You're inspirational and give hope that you can fight on. Yes we're all different and the disease will affect us different but reality, science & medicine is advancing and offering us the opportunity to fight back harder. People like you show us that we can do this with the hopes that the next thing just obliterates the crap in out body. My horsy we and hope for you is that the combo gives you healing in your body and at the bare minimum, stable disease. Though I'd like to say that's not acceptable and see you as NED!

                                                                                            Josh

                                                                                            sister of patient
                                                                                            Participant

                                                                                              Eva,

                                                                                              I can't tell you how much hope your posts bring me!! I'm not the mel patient, my sister is and we are in Canada where they won't do gamma knife if you have more than 4 brain mets. Nobody has told my sister how many she actually has, only that they are numerous or "too many to count." She has just finished WBR and is an excellent responder to ipi/nivo, so she can't wait to get back on her infusions (she's gotta wean off steroids first – one week to ramp up on them but 28 days to come off).

                                                                                              As one of your previous posts mentioned you had 40+ brain mets, I was wondering how you were initially treated. Now to hear that you have also previously undergone WBR, you have revamped my hope that WBR will work for her and also that gamma is still a possibility for the future.

                                                                                              Thank you so much for keeping us apprised!!! My best thoughts are with you!

                                                                                              Barb 

                                                                                              sister of patient
                                                                                              Participant

                                                                                                Eva,

                                                                                                I can't tell you how much hope your posts bring me!! I'm not the mel patient, my sister is and we are in Canada where they won't do gamma knife if you have more than 4 brain mets. Nobody has told my sister how many she actually has, only that they are numerous or "too many to count." She has just finished WBR and is an excellent responder to ipi/nivo, so she can't wait to get back on her infusions (she's gotta wean off steroids first – one week to ramp up on them but 28 days to come off).

                                                                                                As one of your previous posts mentioned you had 40+ brain mets, I was wondering how you were initially treated. Now to hear that you have also previously undergone WBR, you have revamped my hope that WBR will work for her and also that gamma is still a possibility for the future.

                                                                                                Thank you so much for keeping us apprised!!! My best thoughts are with you!

                                                                                                Barb 

                                                                                                sister of patient
                                                                                                Participant

                                                                                                  Eva,

                                                                                                  I can't tell you how much hope your posts bring me!! I'm not the mel patient, my sister is and we are in Canada where they won't do gamma knife if you have more than 4 brain mets. Nobody has told my sister how many she actually has, only that they are numerous or "too many to count." She has just finished WBR and is an excellent responder to ipi/nivo, so she can't wait to get back on her infusions (she's gotta wean off steroids first – one week to ramp up on them but 28 days to come off).

                                                                                                  As one of your previous posts mentioned you had 40+ brain mets, I was wondering how you were initially treated. Now to hear that you have also previously undergone WBR, you have revamped my hope that WBR will work for her and also that gamma is still a possibility for the future.

                                                                                                  Thank you so much for keeping us apprised!!! My best thoughts are with you!

                                                                                                  Barb 

                                                                                                  Swanee
                                                                                                  Participant

                                                                                                    Hi Eva!

                                                                                                    I've been around awhile too and much like you, read and follow everyone's journey and always thinking positive thoughts for everyone here.  You and POW were such a support for me in the early years, but since have found my PMA (Aldakota22beatthebeast) is better if I don't spend to much time on this board…..I think over the years my heart has been so crushed by all the others that I loved and knew who lost their battle or just stopped posting after devastating news(now Charlie:(……and the rest….you know who I speak of!

                                                                                                    On a different note, I continue to read and keep up on MPIP and always appreciate those who continue to post their journey and experiences that we can all gain knowledge from.  Tomorrow I will have two more tumors removed (that have just grown to big) and they will be used for more TIL,  to add to what I already have. 

                                                                                                    I too, feel like one of the lucky ones, to somehow keep dodging this beast and somehow bridging to the next place to hopefully take advantage of the next new treatment option. I read your post with feelings of what great strength you posess for so long and to keep up with a great attitude all the while trying to help others in your own journey with melanoma.

                                                                                                    Thank you Eva for your continued support on this website and your giving spirit that helps and inspires so many others who hang on here for just one small tidbit of hope!

                                                                                                    Blessings to all who continue to fight this beast and to you Eva, continued success with your journey!

                                                                                                    Swanee

                                                                                                    Swanee
                                                                                                    Participant

                                                                                                      Hi Eva!

                                                                                                      I've been around awhile too and much like you, read and follow everyone's journey and always thinking positive thoughts for everyone here.  You and POW were such a support for me in the early years, but since have found my PMA (Aldakota22beatthebeast) is better if I don't spend to much time on this board…..I think over the years my heart has been so crushed by all the others that I loved and knew who lost their battle or just stopped posting after devastating news(now Charlie:(……and the rest….you know who I speak of!

                                                                                                      On a different note, I continue to read and keep up on MPIP and always appreciate those who continue to post their journey and experiences that we can all gain knowledge from.  Tomorrow I will have two more tumors removed (that have just grown to big) and they will be used for more TIL,  to add to what I already have. 

                                                                                                      I too, feel like one of the lucky ones, to somehow keep dodging this beast and somehow bridging to the next place to hopefully take advantage of the next new treatment option. I read your post with feelings of what great strength you posess for so long and to keep up with a great attitude all the while trying to help others in your own journey with melanoma.

                                                                                                      Thank you Eva for your continued support on this website and your giving spirit that helps and inspires so many others who hang on here for just one small tidbit of hope!

                                                                                                      Blessings to all who continue to fight this beast and to you Eva, continued success with your journey!

                                                                                                      Swanee

                                                                                                      Swanee
                                                                                                      Participant

                                                                                                        Hi Eva!

                                                                                                        I've been around awhile too and much like you, read and follow everyone's journey and always thinking positive thoughts for everyone here.  You and POW were such a support for me in the early years, but since have found my PMA (Aldakota22beatthebeast) is better if I don't spend to much time on this board…..I think over the years my heart has been so crushed by all the others that I loved and knew who lost their battle or just stopped posting after devastating news(now Charlie:(……and the rest….you know who I speak of!

                                                                                                        On a different note, I continue to read and keep up on MPIP and always appreciate those who continue to post their journey and experiences that we can all gain knowledge from.  Tomorrow I will have two more tumors removed (that have just grown to big) and they will be used for more TIL,  to add to what I already have. 

                                                                                                        I too, feel like one of the lucky ones, to somehow keep dodging this beast and somehow bridging to the next place to hopefully take advantage of the next new treatment option. I read your post with feelings of what great strength you posess for so long and to keep up with a great attitude all the while trying to help others in your own journey with melanoma.

                                                                                                        Thank you Eva for your continued support on this website and your giving spirit that helps and inspires so many others who hang on here for just one small tidbit of hope!

                                                                                                        Blessings to all who continue to fight this beast and to you Eva, continued success with your journey!

                                                                                                        Swanee

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