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Update on Radiation Necrosis
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Update on Radiation Necrosis

› Forums › General Melanoma Community › Update on Radiation Necrosis

  • Post
    • July 31, 2014 at 2:56 am
    RJoeyB
    Participant
      It's been about six weeks since I posted about this and wanted to give an update following my most recent set of scans.  Rather than recap what's been happening, here's a link to my post from June (apologies in advance, it's entirely too long, as is this post, but no one ever accused me of not being thorough 😉
       
       
      So I've been on Decadron for the past six weeks to try to reduce the swelling and perhaps resolve the motor control symptoms I've had in my left leg, e.g. limp and awkward gait, knee weakness, reduced ankle motion, can't curl toes, etc.  I've continued to take my daily walks, 2-3 miles in the evening and some longer ones on the weekend, but really didn't see any improvement in motor control.  Some days a little better, some a little worse, but overall about the same.  I've also noticed in the past couple of weeks new weakness and range of motion in my left arm — the top half of my left humerus is a 10" titanium rod from back in 2010 to remove one of my original mets, so it's limited to begin with, but this limitation is new and definitely related to the motor control issue.  My expectation going into the scans these past two weeks was that things would be stable at best, with no indication if this was new tumor growth or radiation necrosis.
       
      My regular three-month PET-CT was last week and in addition to the continued vigilance for the dreaded "new met", there were a couple specific things we were on the lookout for:  continued response of the lung met that was treated with SBRT in February and an area of possible concern in my distal ileum (near where the small intestine and large intestine connect) that lit up on my April PET.  We know that the PET will rarely be able to show anything in the brain because it naturally lights up "hot" throughout, so weren't expecting any answers, only looking to keep things uncomplicated as we try to focus on whatever is happening brain-wise.  Good news with the PET.  The lung met didn't even get honorable mention in the report for either size or activity.  The intestinal area is lighting up still but doesn't appear to be associated with any mass; given that it was also scoped (lower double-balloon enteroscope, longer than a colonoscopy into the small bowel) in May with no clinical finding, there is string belief that it's transient GI inflammation likely associated with the partial small bowel resection where the tumor used for my TIL cell harvest was removed about three years ago.  We've seen it before but have to continue to watch it.  And no new areas of concern elsewhere on the PET.
       
      Monday was the repeat brain MRI.  Given how things have progressed, or not, I was expecting that things were going to look about the same and we were going to be in the same position as we were six weeks ago, without any real answers and looking at another period or observation — and more cursed Decadron.  The news was a little better, considering that I haven't had any improvement in the physical symptoms.  The "enhancement" or new activity all around the edge of the original tumor bed has substantially reduced, and the area of cerebral edema (swelling) extending outward from there is perhaps half to two-thirds of the size it was on the last scan.  This isn't activity that would be expected of new tumor growth on its own — remember, I'm not currently actively receiving any PD-1, ipi, or BRAF/MEK therapies — so this is likely radiation necrosis. Still potentially serious, as necrosis can continue to advance and be as problematic as a tumor.  But it can respond to steroids or even on its own over time.
       
      The fact remains that I'm still experiencing motor control problems, but they believe that the necrosis should continue to resolve and as it does, the symptoms will also improve.  Even if the swelling is only half of what it was before, it's still squarely centered in the "motor control strip", so may not improve until it fully dissipates.  The plan is to try tapering off the Decadron over four weeks, to see if the necrosis will continue to improve on its own.  We're going to add Trental and vitamin E, which can assist but aren't nearly as effective as the steroid — I don't know a lot about either with regards to necrosis so won't say much about them — then repeat the MRI in eight weeks.  Should I experience any worsening of physical symptoms, resuming the Decadron is an option, but they want to get me off them as soon as they can…  no argument from me, it's a miserable thing — I need a good night's sleep and look like Humpty Dumpty, among other things, and my family is probably ready to toss me on the street from the moodiness.  Truth is, I've managed O.K. compared to the severity of Decadron stories I've heard from others.
       
      So, it looks like radiation necrosis that is improving.  There is a possibility that this could be cyclical, with "flare-ups" of activity, which means continued vigilance for necrosis or new tumor growth if things change and periodic or longer-term use of steroids.  But my radiation oncologist also said that even if that happens, there is usually a "hump", often around two years, where even cyclical RN starts to settle down.  
       
      Altogether, though, the news is as good as we could have hoped compared to where we were six weeks ago and allows our family to collectively exhale a bit — time to focus a little more on daughter #2's college search and break some of these crazy Decadron food cravings — back to the Stage IV limbo.  Hopefully the physical symptoms start to improve soon.  Just wanted to share — we learned a little more the past six weeks, if only I could apply the time spent to learning to play piano or something…
       
      Best to all,
      Joe
       
    Viewing 6 reply threads
    • Replies
        • July 31, 2014 at 5:07 pm
        hannahcopeland1
        Participant

          Hi, 

          I havent posted on this for a long while, but this caught my eye so i thought id give you a tip from what ive learned in my journey this summer. Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf, mek combo, then ipi, WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine.  i have scans on monday to see how the ipi and temodar are doing.

          im gonna try to make this short and sweet. the reason im writing to you is that your neurological symptoms seem similar to some of mine and i have a suggestion for you. my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

          its relly amazing and i truly think that it is going to help my recovery and my overall life. 

           

          good luck to you with everything. i hope this info an help you feel better!

            • July 31, 2014 at 7:58 pm
            Mat
            Participant

              Hannah, wishing you the best of luck with your scans on Monday.  You've obviously been through a lot.

              • July 31, 2014 at 7:58 pm
              Mat
              Participant

                Hannah, wishing you the best of luck with your scans on Monday.  You've obviously been through a lot.

                • July 31, 2014 at 7:58 pm
                Mat
                Participant

                  Hannah, wishing you the best of luck with your scans on Monday.  You've obviously been through a lot.

                  • July 31, 2014 at 8:40 pm
                  RJoeyB
                  Participant

                    Thanks for the response Hannah.  I'm sorry to hear about the complications you've encountered with leptomeningeal disease.  I honestly can't complain about my motor control symptoms too much.  The awkward gait and limp is certainly something I hope will resolve as the cerebral edema and necrosis do the same.  I haven't had any pain, numbness, tingling, in my left side or elsewhere, and nothing neurological with regards to vision, headaches, dizziness, etc.  It's primarily been a loss of some motor control and weakness in my leg and a little in my arm, along with some general fatigue associated with the steroid.

                    I'm not discounting chiropractic at all, though, and it's something I've always considered as an option as part of the management of my overall treatment.  When I was at NIH as an inpatient for my TIL cell therapy, one of my nurses was a Reiki practitioner and offered a few sessions with me.  While admittedly skeptical, I did try it.  I can't say for certain how I feel about it in hindsight, my mind was in a much different place, but I would probably at least try it again.  My cancer hospital offers Reiki and a gentle yoga geared towards cancer patients as part of their integrative medicine program, and we (my wife and I both) have participated in some yoga classes.

                    Again, thanks for the reply.  Also wishing you good luck and the best with your scans,

                    Joe

                    • July 31, 2014 at 8:40 pm
                    RJoeyB
                    Participant

                      Thanks for the response Hannah.  I'm sorry to hear about the complications you've encountered with leptomeningeal disease.  I honestly can't complain about my motor control symptoms too much.  The awkward gait and limp is certainly something I hope will resolve as the cerebral edema and necrosis do the same.  I haven't had any pain, numbness, tingling, in my left side or elsewhere, and nothing neurological with regards to vision, headaches, dizziness, etc.  It's primarily been a loss of some motor control and weakness in my leg and a little in my arm, along with some general fatigue associated with the steroid.

                      I'm not discounting chiropractic at all, though, and it's something I've always considered as an option as part of the management of my overall treatment.  When I was at NIH as an inpatient for my TIL cell therapy, one of my nurses was a Reiki practitioner and offered a few sessions with me.  While admittedly skeptical, I did try it.  I can't say for certain how I feel about it in hindsight, my mind was in a much different place, but I would probably at least try it again.  My cancer hospital offers Reiki and a gentle yoga geared towards cancer patients as part of their integrative medicine program, and we (my wife and I both) have participated in some yoga classes.

                      Again, thanks for the reply.  Also wishing you good luck and the best with your scans,

                      Joe

                      • July 31, 2014 at 8:40 pm
                      RJoeyB
                      Participant

                        Thanks for the response Hannah.  I'm sorry to hear about the complications you've encountered with leptomeningeal disease.  I honestly can't complain about my motor control symptoms too much.  The awkward gait and limp is certainly something I hope will resolve as the cerebral edema and necrosis do the same.  I haven't had any pain, numbness, tingling, in my left side or elsewhere, and nothing neurological with regards to vision, headaches, dizziness, etc.  It's primarily been a loss of some motor control and weakness in my leg and a little in my arm, along with some general fatigue associated with the steroid.

                        I'm not discounting chiropractic at all, though, and it's something I've always considered as an option as part of the management of my overall treatment.  When I was at NIH as an inpatient for my TIL cell therapy, one of my nurses was a Reiki practitioner and offered a few sessions with me.  While admittedly skeptical, I did try it.  I can't say for certain how I feel about it in hindsight, my mind was in a much different place, but I would probably at least try it again.  My cancer hospital offers Reiki and a gentle yoga geared towards cancer patients as part of their integrative medicine program, and we (my wife and I both) have participated in some yoga classes.

                        Again, thanks for the reply.  Also wishing you good luck and the best with your scans,

                        Joe

                      • July 31, 2014 at 5:07 pm
                      hannahcopeland1
                      Participant

                        Hi, 

                        I havent posted on this for a long while, but this caught my eye so i thought id give you a tip from what ive learned in my journey this summer. Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf, mek combo, then ipi, WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine.  i have scans on monday to see how the ipi and temodar are doing.

                        im gonna try to make this short and sweet. the reason im writing to you is that your neurological symptoms seem similar to some of mine and i have a suggestion for you. my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

                        its relly amazing and i truly think that it is going to help my recovery and my overall life. 

                         

                        good luck to you with everything. i hope this info an help you feel better!

                        • July 31, 2014 at 5:07 pm
                        hannahcopeland1
                        Participant

                          Hi, 

                          I havent posted on this for a long while, but this caught my eye so i thought id give you a tip from what ive learned in my journey this summer. Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf, mek combo, then ipi, WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine.  i have scans on monday to see how the ipi and temodar are doing.

                          im gonna try to make this short and sweet. the reason im writing to you is that your neurological symptoms seem similar to some of mine and i have a suggestion for you. my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

                          its relly amazing and i truly think that it is going to help my recovery and my overall life. 

                           

                          good luck to you with everything. i hope this info an help you feel better!

                          • August 1, 2014 at 2:13 am
                          BrianP
                          Participant

                            Joe,

                            That definitely qualifies for trending in the right direction.  I so glad to hear this.  There's no doubt in my mind if you had been focusing on playing the piano instead of this melanoma stuff you would most assuredly be a maestro by now!

                            Brian

                              • August 1, 2014 at 3:52 pm
                              RJoeyB
                              Participant

                                Thanks so much Brian.  I think many of us can say we've learned more than we ever wanted to know about melanoma.  I tell people often that, "It's a lot of work having cancer," meaning that beyond the disease and treatments, there's a lot to do – scheduling, paperwork, bills, insurance, even communicating with friends/family – I think staying educated is part of that, too, especially with things changing so quickly with melanoma.

                                Again, thanks for the encouragement, it's much appreciated, Joe

                                • August 1, 2014 at 3:52 pm
                                RJoeyB
                                Participant

                                  Thanks so much Brian.  I think many of us can say we've learned more than we ever wanted to know about melanoma.  I tell people often that, "It's a lot of work having cancer," meaning that beyond the disease and treatments, there's a lot to do – scheduling, paperwork, bills, insurance, even communicating with friends/family – I think staying educated is part of that, too, especially with things changing so quickly with melanoma.

                                  Again, thanks for the encouragement, it's much appreciated, Joe

                                  • August 1, 2014 at 3:52 pm
                                  RJoeyB
                                  Participant

                                    Thanks so much Brian.  I think many of us can say we've learned more than we ever wanted to know about melanoma.  I tell people often that, "It's a lot of work having cancer," meaning that beyond the disease and treatments, there's a lot to do – scheduling, paperwork, bills, insurance, even communicating with friends/family – I think staying educated is part of that, too, especially with things changing so quickly with melanoma.

                                    Again, thanks for the encouragement, it's much appreciated, Joe

                                  • August 1, 2014 at 2:13 am
                                  BrianP
                                  Participant

                                    Joe,

                                    That definitely qualifies for trending in the right direction.  I so glad to hear this.  There's no doubt in my mind if you had been focusing on playing the piano instead of this melanoma stuff you would most assuredly be a maestro by now!

                                    Brian

                                    • August 1, 2014 at 2:13 am
                                    BrianP
                                    Participant

                                      Joe,

                                      That definitely qualifies for trending in the right direction.  I so glad to hear this.  There's no doubt in my mind if you had been focusing on playing the piano instead of this melanoma stuff you would most assuredly be a maestro by now!

                                      Brian

                                      • September 23, 2020 at 8:19 am
                                      [email protected]
                                      Participant
                                        I sure hope your still kicking that thing…I am stage four two years after 2 craniotomy, srt radiation and pembro…thought I was winning then got radiation necrosis(confirmed with biopsy) losing balance(RN is in cerebellum….taking dex does not help and sea sick pills (does work)..I am hoping you made it…
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