› Forums › General Melanoma Community › Continued radiation necrosis experiences?
- This topic has 24 replies, 5 voices, and was last updated 9 years, 7 months ago by
RJoeyB.
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- September 27, 2014 at 1:12 am
After my update in July…
…it's been a tough go. With the positive trend from June to July on my brain MRI showing a reduction in the enhancement along the previously (February 2013) radiated tumor bed along with reduced cerebral edema (swelling), my doctors started to taper my dosage of dexamethasone, with the goal of getting me off the steroid as soon as possible within safe taper limits. Although the edema was still present, the thinking was that as we tapered over 4-5 weeks, the edema would continue to resolve, along eventually with the issues with left-side motor control. And getting off the steroid was welcome, because the side-effects were miserable and getting worse.Unfortunately, the motor control issues persisted and slightly worsened during the final few weeks of the taper. At the highest dose before tapering, I was on 8-mg daily (4-mg a.m. and p.m.) for about six weeks, then for the taper it was cut in half to 4-mg, then 2-mg, then 2-mg every other day, with the cuts happening about every 10 days. When I transitioned from 2-mg to 2-mg every other day is when I started to notice things getting worse. I read a lot about people who experienced "steroid myopathy" in various forms during and after an extended course (> 2 weeks) of dexamethasone, and despite the fact that the issues were predominately left-side, I was generally weak in all my limbs (typical with steroid myopathy). Since I've had so many issues with my left side earlier as part of my melanoma journey (all for bone mets: partial shoulder replacement with 10" titanium rod, plus radiation and surgery to mets in my femur and tibia just above and below the knee, all left side) that I thought perhaps it was a combination of myopathy being amplified on my already traumatized left side.But about 10 days ago, right around two weeks after completely finishing the steroid, things got even worse and it was pretty clear that this was different than myopathy. I couldn’t bend my ankle or move my toes at all, grasp or pick up anything with my left hand, and my arm’s range of motion was much worse than its already previously reduced state. No real pain to speak of, but I couldn't walk, get up from bed or a chair, shower, or get dressed without assistance from my wife. We planned to call the doctor last Monday following the weekend when things really got bad, and after falling in the yard walking from the car to the front door, it was just further proof that we needed to call. Everything is consistent with unresolved edema and the location on the map for left-side motor control, all what we'd expect, but still very frustrating and disconcerting.Last Monday, my radiation oncologist started me back at the dexamethasone dose, 2-mg, where I had started noticing the symptoms worsening, to see if that would start to make a difference. She feels, and we agree, that the symptoms and timing are still consistent with radiation necrosis that hasn't resolved, rather than tumor regrowth at the original tumor site. But, if things continued to worsen, she considered moving up my next brain MRI to help rule out a new met elsewhere. I spent the week between bed, the recliner, and some time at my home desk, but needed help just getting from spot to spot, doing one-handed typing while trying to get some work done. I had an unrelated appointment at the hospital, but had to use a wheelchair in the building.By Thursday, we hadn't noticed a change, but it also hadn't gotten any worse, so she increased the steroid dose to 4-mg. After a few days, by Sunday or Monday, there was very subtle improvement. If I had to give it a number, it was maybe 5% better. Where I couldn't move my ankle or toes at all for a week, I could now see very slight movement and a twitch when I tried to move them. Same with my smaller fingers (my thumb and index finger have been less affected, an interesting quirk of the brain's motor control map), they could start to help grasp things. But the improvement was still so small that I couldn't be sure if it was just wishful thinking and/or getting better at compensating for this (hopefully temporary) disability.We picked up a quad cane which has helped with stability and mobility and allowed me to get into the office this week (with my wife doing the driving), and still having to hunt and peck when on the computer. The past few days have shown a little more improvement, again nothing major, but enough that I can stand up from the recliner and get out of bed on my own, awkwardly but under my own power. I think I'm past it being wishful thinking or better compensating, but it is slow going. I also had an evaluation for occupational therapy (OT) yesterday and will start a program next week, along with a physical therapy (PT) evaluation. Until we see more improvement and resolve the root cause, PT won't help much, but OT can help with some "getting by" strategies in the meantime.Next step is my regularly scheduled brain MRI this Monday (8 weeks since the last one). We fully expect that the swelling will be present, along with signs of radiation necrosis enhancement at the site of the original tumor bed. We know that the MRI can't differentiate between necrosis and tumor, but given the subtle response to the steroid reinduction, assuming the edema and enhancement are where we expect, it won't be a surprise. Hopefully that is as we expect, at which point my doctor may decide to again increase the steroid dose.From what we've discussed and I've read elsewhere, sometimes this is the game and balancing act that is required with radiation necrosis, requiring multiple go-rounds with dexamethasone, trying to manage, control, and reduce the edema symptoms while also minimizing the time on the steroid. My doctor has also said in more difficult cases that a second craniotomy to excise the necrosis might be considered and there is some off-label use of Avastin (becacizumab) with necrosis because of its anti-angiogenesis properties, but we’re not at the point of looking at either yet.Long story short, has anyone else out there had a similar experience (or any experience) with radiation necrosis following SRS? It's been frustrating and discouraging to be this far out from the actual treatment and now dealing not with the tumor itself (as best we know) but a late onset side-effect of the single session of SRS over 18 months ago since my last true new met. The estimate is that 10-15% of those who receive SRS to the brain will have diagnosed radiation necrosis, but that as high as 50% may have it at some point but be completely asymptomatic and therefore undiagnosed. Onset is usually in the 6-24 month range, post-treatment, with a plateau and stabilization after two years, even for those who struggle with it. Personally, I went from exercising regularly again and feeling better than I had in four years since diagnosis to the worst I've felt, and again, not from new disease but a relatively rare complication of radiation to the brain.Curious,Joe
- Replies
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- September 28, 2014 at 12:11 am
Dang Joe! Sorry to hear about all this. I never would have guessed all that was going on in the background from all your continuous upbeat and helpful posts. Hope some others can share some experiences that may help. You may consider posting this on MIF to see if Catherine has anyone on her advisory board smart on this kind of stuff. Hang in there. Seems to be a little trend in the right direction even if it is slower than we'd like to see.
Brian
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- September 28, 2014 at 12:11 am
Dang Joe! Sorry to hear about all this. I never would have guessed all that was going on in the background from all your continuous upbeat and helpful posts. Hope some others can share some experiences that may help. You may consider posting this on MIF to see if Catherine has anyone on her advisory board smart on this kind of stuff. Hang in there. Seems to be a little trend in the right direction even if it is slower than we'd like to see.
Brian
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- September 28, 2014 at 6:44 pm
Thanks Brian, I may post something over there, too. I know this doesn't have an easy or quick answer and for the most part, is just going to take some time to work through and resolve, so I'm mainly interested to hear if others have had to deal with RN. Most, fortunately, don't ever have to experience it. For those who do, it can be a "once and done" thing, or it can become more of a chronic see-saw. Once we found out that's what we were dealing with over the summer, it was certainly better than being tumor regrowth, and we were hopeful that it would be in the "once and done" category. Now it seems we could be playing the back and forth balance between steroids and edema until the underlying RN resolves.
I've been trying to stay upbeat (and I've had some extra time where I can't do much else, so keeping up to date here at MPIP, even if I am typing with one good hand, has been a regular activity ;-). Seriously, though, I know it could be worse, because, to the best of our knowledge, this isn't representative of new disease — it's been nearly 18 months since my last newly diagnosed met, but we've been playing this cleanup operation from prior Mets and treatments ever since. Frustrating and tiring, but better than the alternative.
Tomorrow is my brain MRI, which won't be definitive, but combined with the follow up with my doctor, should give us some direction on how she wants to approach this. We of course want to know that there are no new brain mets elsewhere, too… and in two weeks is my next full-body PET/CT.
Thanks again, Joe
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- September 28, 2014 at 6:44 pm
Thanks Brian, I may post something over there, too. I know this doesn't have an easy or quick answer and for the most part, is just going to take some time to work through and resolve, so I'm mainly interested to hear if others have had to deal with RN. Most, fortunately, don't ever have to experience it. For those who do, it can be a "once and done" thing, or it can become more of a chronic see-saw. Once we found out that's what we were dealing with over the summer, it was certainly better than being tumor regrowth, and we were hopeful that it would be in the "once and done" category. Now it seems we could be playing the back and forth balance between steroids and edema until the underlying RN resolves.
I've been trying to stay upbeat (and I've had some extra time where I can't do much else, so keeping up to date here at MPIP, even if I am typing with one good hand, has been a regular activity ;-). Seriously, though, I know it could be worse, because, to the best of our knowledge, this isn't representative of new disease — it's been nearly 18 months since my last newly diagnosed met, but we've been playing this cleanup operation from prior Mets and treatments ever since. Frustrating and tiring, but better than the alternative.
Tomorrow is my brain MRI, which won't be definitive, but combined with the follow up with my doctor, should give us some direction on how she wants to approach this. We of course want to know that there are no new brain mets elsewhere, too… and in two weeks is my next full-body PET/CT.
Thanks again, Joe
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- September 28, 2014 at 6:44 pm
Thanks Brian, I may post something over there, too. I know this doesn't have an easy or quick answer and for the most part, is just going to take some time to work through and resolve, so I'm mainly interested to hear if others have had to deal with RN. Most, fortunately, don't ever have to experience it. For those who do, it can be a "once and done" thing, or it can become more of a chronic see-saw. Once we found out that's what we were dealing with over the summer, it was certainly better than being tumor regrowth, and we were hopeful that it would be in the "once and done" category. Now it seems we could be playing the back and forth balance between steroids and edema until the underlying RN resolves.
I've been trying to stay upbeat (and I've had some extra time where I can't do much else, so keeping up to date here at MPIP, even if I am typing with one good hand, has been a regular activity ;-). Seriously, though, I know it could be worse, because, to the best of our knowledge, this isn't representative of new disease — it's been nearly 18 months since my last newly diagnosed met, but we've been playing this cleanup operation from prior Mets and treatments ever since. Frustrating and tiring, but better than the alternative.
Tomorrow is my brain MRI, which won't be definitive, but combined with the follow up with my doctor, should give us some direction on how she wants to approach this. We of course want to know that there are no new brain mets elsewhere, too… and in two weeks is my next full-body PET/CT.
Thanks again, Joe
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- September 28, 2014 at 12:11 am
Dang Joe! Sorry to hear about all this. I never would have guessed all that was going on in the background from all your continuous upbeat and helpful posts. Hope some others can share some experiences that may help. You may consider posting this on MIF to see if Catherine has anyone on her advisory board smart on this kind of stuff. Hang in there. Seems to be a little trend in the right direction even if it is slower than we'd like to see.
Brian
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- September 28, 2014 at 2:13 am
I have no experience to add just wanted to say hang in there Joe.
Artie
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- September 28, 2014 at 2:13 am
I have no experience to add just wanted to say hang in there Joe.
Artie
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- September 28, 2014 at 2:13 am
I have no experience to add just wanted to say hang in there Joe.
Artie
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- September 28, 2014 at 11:39 am
Joe, I'm sorry to hear about your recent challenges. I know that you're generally very happy with your medical team and have been with them for years, but any thoughts about getting a second opinion at Penn?
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- September 28, 2014 at 6:54 pm
Thanks Mat, it has crossed my mind as an option if I'm not satisfied with the answers I'm getting. I don't know if I'm quite there yet, though. Most of what I've been told by my doctors has been consistent with the research I've done and frankly, this may just be something we have to work through, this titration of steroid up and down while watching for the RN to eventually resolve. It could take a few rounds of trying before considering other options including trying Avastin or another surgery. Tomorrow's brain MRI and in-person discussion with my radiation oncologist won't give us definitive answers, but should help us see some direction and a plan. My reason for posting was less looking for answers, because I don't think there are any absolutes right now, just wondering if anyone else has had to deal with RN, especially in a longer-term, more chronic situation. And maybe I was venting a little, too 😉
Thanks, Joe
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- September 28, 2014 at 6:54 pm
Thanks Mat, it has crossed my mind as an option if I'm not satisfied with the answers I'm getting. I don't know if I'm quite there yet, though. Most of what I've been told by my doctors has been consistent with the research I've done and frankly, this may just be something we have to work through, this titration of steroid up and down while watching for the RN to eventually resolve. It could take a few rounds of trying before considering other options including trying Avastin or another surgery. Tomorrow's brain MRI and in-person discussion with my radiation oncologist won't give us definitive answers, but should help us see some direction and a plan. My reason for posting was less looking for answers, because I don't think there are any absolutes right now, just wondering if anyone else has had to deal with RN, especially in a longer-term, more chronic situation. And maybe I was venting a little, too 😉
Thanks, Joe
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- September 28, 2014 at 6:54 pm
Thanks Mat, it has crossed my mind as an option if I'm not satisfied with the answers I'm getting. I don't know if I'm quite there yet, though. Most of what I've been told by my doctors has been consistent with the research I've done and frankly, this may just be something we have to work through, this titration of steroid up and down while watching for the RN to eventually resolve. It could take a few rounds of trying before considering other options including trying Avastin or another surgery. Tomorrow's brain MRI and in-person discussion with my radiation oncologist won't give us definitive answers, but should help us see some direction and a plan. My reason for posting was less looking for answers, because I don't think there are any absolutes right now, just wondering if anyone else has had to deal with RN, especially in a longer-term, more chronic situation. And maybe I was venting a little, too 😉
Thanks, Joe
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- September 28, 2014 at 11:52 am
I don't have anything like what you've been dealing with, but the path report from my craniotomy on the 16th was that it was all radiation necrosis- no active disease at all. Again, I've never had any symptoms and I'm happy it was all dead and not a new, rapidly growing tumor, especially as they had been talking about bringing me back to do another (would be my 3rd) gamma knife to treat the surgical site and 4-5 other smaller areas they had seen but did not try to surgically remove. At the moment, they're thinking if the big one was necrosis, perhaps so are the smaller ones and more radiation to any of the sites is not likely to be helpful. I'm perfectly happy not doing a 3rd gamma knife, but they're still talking about it, so we'll see. I was quite surprised at the path result being radiation necrosis. Everyone expected there to be central necrosis, but not for the whole thing to be necrotic let alone radiation necrosis. Now the concern is that if that lesion grew that much in a short a time frame (my last gamma knife was in late May just 2 weeks before I started PD-1), even if it did die (and did it die from the radiation or the PD-1) what may happen with the other lesions? Are they also already dead, or is there a chance that they will also swell and potentially cause problems? As I said- I've been lucky and never had any symptoms, but as you pointed out they really can't tell radiation necrosis from the MRI, so there's still much discussion about watch and wait vs another gamma knife and which is going to be less risky in the long run. Personally, I'm leaning a bit towards watch and wait, get an MRI in another couple of weeks and go from there- if they're bigger I'm happy to go for another gamma knife, if not perhaps just keep track of them as I'll be resuming PD-1 this coming week. We may never know if those are also radiation necrosis or not.
Anyway, thinking of you and hoping you get this beat and get back to more normal activities soon.
All the best, always!
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- September 28, 2014 at 10:54 pm
Thanks for the reply Eva, I know you've had your own run with multiple brain mets, including very recently. Mine had gone as smoothly as it could have, all things considered. A single 2.5-cm met back in early 2013 that was mostly asymptomatic (a minor gait issue in hindsight, but not enough to be a warning sign) until found on a routine PET (a week before my brain MRI was scheduled). I was admitted immediately, spent two nights inpatient on steroids to stabilize the surrounding edema, then allowed to go home until scheduled for the craniotomy three days later. They said I could possibly need some PT/OT after the procedure, given the location, but felt better after than before. I spent the first night in the ICU as a matter of their standard procedure, probably could have gone home the day after, but they wanted to observe and evaluate me for PT, so spent an extra night in the hospital. But overall, much easier than I would ever have expected. I followed doctors orders and recovered and rested at home for a couple of weeks, but felt really well. I was off of steroids and anti-seizure medication quickly. The surgeon felt really good about having “got it all”, but CyberKnife SRS as follow-up was still strongly recommended given the high chance of recurrence with melanoma. Whole-brain radiation (WBR) was offered and considered, but given the lone met with a “clean” tumor bed left, SRS to the margin of the remaining cavity was recommended and preferred. Typically CyberKnife following craniotomy is 1, 3, or 5 sessions, but after the planning, they said that a single session would be sufficient while (hopefully) minimizing the chance of future complications, including radiation necrosis. So a month after the craniotomy, I had the single session of CyberKnife, with no immediate or short-term side effects.
Every brain MRI since then has been “pristine” (their term, not mine, but I never complain when someone calls my brain “pristine” — I much prefer it to the radiologists’ reports, who instead often described it as “unremarkable” ;-). That's been for the past 15-18 months, with MRI’s every 2 months to start and then every 3 months for the last year: no edema, no “enhancement” (or halo) around the small remaining cavity… pristine and unremarkable.Unfortunately, the phrase “radiation necrosis” (“RN”) is such a loaded term. I think most times, at least when I heard it in the past for other mets I've had (in bone and lymph nodes), necrotic tissue has been dead tumor, either as the result of radiation treatment or immunotherapy (or both). RN in the context of a late onset effect (> 3-6 months following treatment) is sometimes referred to as “radiation injury” or “radiation effect” and represents damage/inflammation/irritation to what was healthy tissue along the margin, not necrotic tumor. The pathology of the late onset isn't completely understood and can resemble tumor regrowth both symptomatically and radiographically. On MRI, at least mine, it looks like a light “halo” (what they call “enhancement” on the radiology report) around the remaining cavity from the original tumor, plus the surrounding edema that leads to my symptoms with left-side motor control. As I understand it, the consistent halo would be more indicative of radiation effect rather than tumor regrowth, but the only way to be 100% would be biopsy of the entire thing, which means a second craniotomy and at which point necrosis vs. tumor is a mostly moot point, because it would all be excised. We’ll see how the MRI looks tomorrow. The June one first showed the enhancement and edema. After six weeks on dexamethasone, the July scan showed about a 50% reduction in both enhancement and edema, also signs pointing more towards RN than new tumor growth. As I wrote in my post above, I expect we’ll see both enhancement and edema tomorrow, but hopefully still consistent with RN.The course of RN can vary widely, apparently. I read one study that suggested that up to 50% of SRS patients may have some amount of late onset RN, but that it is only diagnosed about 10-15% of the time, either radiographically or symptomatically. The risk factors for who will develop it aren't really known. Steroids don't treat the RN itself, only manage the symptoms. The more common, but not guaranteed course, however, is that the RN will resolve on its own over time, but can require an extended course (or multiple courses) of steroids to manage along the way. My radiation oncologist has also said that there is a “hump” around two years post-treatment where they statistically start to see improvement.Sorry for the second long post in this thread — sometimes I think I'm spending as much time explaining things to myself through writing than I am to anyone else, so thanks to everyone for bearing with me. This actually makes sense, I think, but is frustrating nonetheless. I will update again if we learn anything new tomorrow.Thanks again to everyone for replying, Joe -
- September 28, 2014 at 10:54 pm
Thanks for the reply Eva, I know you've had your own run with multiple brain mets, including very recently. Mine had gone as smoothly as it could have, all things considered. A single 2.5-cm met back in early 2013 that was mostly asymptomatic (a minor gait issue in hindsight, but not enough to be a warning sign) until found on a routine PET (a week before my brain MRI was scheduled). I was admitted immediately, spent two nights inpatient on steroids to stabilize the surrounding edema, then allowed to go home until scheduled for the craniotomy three days later. They said I could possibly need some PT/OT after the procedure, given the location, but felt better after than before. I spent the first night in the ICU as a matter of their standard procedure, probably could have gone home the day after, but they wanted to observe and evaluate me for PT, so spent an extra night in the hospital. But overall, much easier than I would ever have expected. I followed doctors orders and recovered and rested at home for a couple of weeks, but felt really well. I was off of steroids and anti-seizure medication quickly. The surgeon felt really good about having “got it all”, but CyberKnife SRS as follow-up was still strongly recommended given the high chance of recurrence with melanoma. Whole-brain radiation (WBR) was offered and considered, but given the lone met with a “clean” tumor bed left, SRS to the margin of the remaining cavity was recommended and preferred. Typically CyberKnife following craniotomy is 1, 3, or 5 sessions, but after the planning, they said that a single session would be sufficient while (hopefully) minimizing the chance of future complications, including radiation necrosis. So a month after the craniotomy, I had the single session of CyberKnife, with no immediate or short-term side effects.
Every brain MRI since then has been “pristine” (their term, not mine, but I never complain when someone calls my brain “pristine” — I much prefer it to the radiologists’ reports, who instead often described it as “unremarkable” ;-). That's been for the past 15-18 months, with MRI’s every 2 months to start and then every 3 months for the last year: no edema, no “enhancement” (or halo) around the small remaining cavity… pristine and unremarkable.Unfortunately, the phrase “radiation necrosis” (“RN”) is such a loaded term. I think most times, at least when I heard it in the past for other mets I've had (in bone and lymph nodes), necrotic tissue has been dead tumor, either as the result of radiation treatment or immunotherapy (or both). RN in the context of a late onset effect (> 3-6 months following treatment) is sometimes referred to as “radiation injury” or “radiation effect” and represents damage/inflammation/irritation to what was healthy tissue along the margin, not necrotic tumor. The pathology of the late onset isn't completely understood and can resemble tumor regrowth both symptomatically and radiographically. On MRI, at least mine, it looks like a light “halo” (what they call “enhancement” on the radiology report) around the remaining cavity from the original tumor, plus the surrounding edema that leads to my symptoms with left-side motor control. As I understand it, the consistent halo would be more indicative of radiation effect rather than tumor regrowth, but the only way to be 100% would be biopsy of the entire thing, which means a second craniotomy and at which point necrosis vs. tumor is a mostly moot point, because it would all be excised. We’ll see how the MRI looks tomorrow. The June one first showed the enhancement and edema. After six weeks on dexamethasone, the July scan showed about a 50% reduction in both enhancement and edema, also signs pointing more towards RN than new tumor growth. As I wrote in my post above, I expect we’ll see both enhancement and edema tomorrow, but hopefully still consistent with RN.The course of RN can vary widely, apparently. I read one study that suggested that up to 50% of SRS patients may have some amount of late onset RN, but that it is only diagnosed about 10-15% of the time, either radiographically or symptomatically. The risk factors for who will develop it aren't really known. Steroids don't treat the RN itself, only manage the symptoms. The more common, but not guaranteed course, however, is that the RN will resolve on its own over time, but can require an extended course (or multiple courses) of steroids to manage along the way. My radiation oncologist has also said that there is a “hump” around two years post-treatment where they statistically start to see improvement.Sorry for the second long post in this thread — sometimes I think I'm spending as much time explaining things to myself through writing than I am to anyone else, so thanks to everyone for bearing with me. This actually makes sense, I think, but is frustrating nonetheless. I will update again if we learn anything new tomorrow.Thanks again to everyone for replying, Joe -
- September 28, 2014 at 10:54 pm
Thanks for the reply Eva, I know you've had your own run with multiple brain mets, including very recently. Mine had gone as smoothly as it could have, all things considered. A single 2.5-cm met back in early 2013 that was mostly asymptomatic (a minor gait issue in hindsight, but not enough to be a warning sign) until found on a routine PET (a week before my brain MRI was scheduled). I was admitted immediately, spent two nights inpatient on steroids to stabilize the surrounding edema, then allowed to go home until scheduled for the craniotomy three days later. They said I could possibly need some PT/OT after the procedure, given the location, but felt better after than before. I spent the first night in the ICU as a matter of their standard procedure, probably could have gone home the day after, but they wanted to observe and evaluate me for PT, so spent an extra night in the hospital. But overall, much easier than I would ever have expected. I followed doctors orders and recovered and rested at home for a couple of weeks, but felt really well. I was off of steroids and anti-seizure medication quickly. The surgeon felt really good about having “got it all”, but CyberKnife SRS as follow-up was still strongly recommended given the high chance of recurrence with melanoma. Whole-brain radiation (WBR) was offered and considered, but given the lone met with a “clean” tumor bed left, SRS to the margin of the remaining cavity was recommended and preferred. Typically CyberKnife following craniotomy is 1, 3, or 5 sessions, but after the planning, they said that a single session would be sufficient while (hopefully) minimizing the chance of future complications, including radiation necrosis. So a month after the craniotomy, I had the single session of CyberKnife, with no immediate or short-term side effects.
Every brain MRI since then has been “pristine” (their term, not mine, but I never complain when someone calls my brain “pristine” — I much prefer it to the radiologists’ reports, who instead often described it as “unremarkable” ;-). That's been for the past 15-18 months, with MRI’s every 2 months to start and then every 3 months for the last year: no edema, no “enhancement” (or halo) around the small remaining cavity… pristine and unremarkable.Unfortunately, the phrase “radiation necrosis” (“RN”) is such a loaded term. I think most times, at least when I heard it in the past for other mets I've had (in bone and lymph nodes), necrotic tissue has been dead tumor, either as the result of radiation treatment or immunotherapy (or both). RN in the context of a late onset effect (> 3-6 months following treatment) is sometimes referred to as “radiation injury” or “radiation effect” and represents damage/inflammation/irritation to what was healthy tissue along the margin, not necrotic tumor. The pathology of the late onset isn't completely understood and can resemble tumor regrowth both symptomatically and radiographically. On MRI, at least mine, it looks like a light “halo” (what they call “enhancement” on the radiology report) around the remaining cavity from the original tumor, plus the surrounding edema that leads to my symptoms with left-side motor control. As I understand it, the consistent halo would be more indicative of radiation effect rather than tumor regrowth, but the only way to be 100% would be biopsy of the entire thing, which means a second craniotomy and at which point necrosis vs. tumor is a mostly moot point, because it would all be excised. We’ll see how the MRI looks tomorrow. The June one first showed the enhancement and edema. After six weeks on dexamethasone, the July scan showed about a 50% reduction in both enhancement and edema, also signs pointing more towards RN than new tumor growth. As I wrote in my post above, I expect we’ll see both enhancement and edema tomorrow, but hopefully still consistent with RN.The course of RN can vary widely, apparently. I read one study that suggested that up to 50% of SRS patients may have some amount of late onset RN, but that it is only diagnosed about 10-15% of the time, either radiographically or symptomatically. The risk factors for who will develop it aren't really known. Steroids don't treat the RN itself, only manage the symptoms. The more common, but not guaranteed course, however, is that the RN will resolve on its own over time, but can require an extended course (or multiple courses) of steroids to manage along the way. My radiation oncologist has also said that there is a “hump” around two years post-treatment where they statistically start to see improvement.Sorry for the second long post in this thread — sometimes I think I'm spending as much time explaining things to myself through writing than I am to anyone else, so thanks to everyone for bearing with me. This actually makes sense, I think, but is frustrating nonetheless. I will update again if we learn anything new tomorrow.Thanks again to everyone for replying, Joe
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- September 28, 2014 at 11:52 am
I don't have anything like what you've been dealing with, but the path report from my craniotomy on the 16th was that it was all radiation necrosis- no active disease at all. Again, I've never had any symptoms and I'm happy it was all dead and not a new, rapidly growing tumor, especially as they had been talking about bringing me back to do another (would be my 3rd) gamma knife to treat the surgical site and 4-5 other smaller areas they had seen but did not try to surgically remove. At the moment, they're thinking if the big one was necrosis, perhaps so are the smaller ones and more radiation to any of the sites is not likely to be helpful. I'm perfectly happy not doing a 3rd gamma knife, but they're still talking about it, so we'll see. I was quite surprised at the path result being radiation necrosis. Everyone expected there to be central necrosis, but not for the whole thing to be necrotic let alone radiation necrosis. Now the concern is that if that lesion grew that much in a short a time frame (my last gamma knife was in late May just 2 weeks before I started PD-1), even if it did die (and did it die from the radiation or the PD-1) what may happen with the other lesions? Are they also already dead, or is there a chance that they will also swell and potentially cause problems? As I said- I've been lucky and never had any symptoms, but as you pointed out they really can't tell radiation necrosis from the MRI, so there's still much discussion about watch and wait vs another gamma knife and which is going to be less risky in the long run. Personally, I'm leaning a bit towards watch and wait, get an MRI in another couple of weeks and go from there- if they're bigger I'm happy to go for another gamma knife, if not perhaps just keep track of them as I'll be resuming PD-1 this coming week. We may never know if those are also radiation necrosis or not.
Anyway, thinking of you and hoping you get this beat and get back to more normal activities soon.
All the best, always!
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- September 28, 2014 at 11:52 am
I don't have anything like what you've been dealing with, but the path report from my craniotomy on the 16th was that it was all radiation necrosis- no active disease at all. Again, I've never had any symptoms and I'm happy it was all dead and not a new, rapidly growing tumor, especially as they had been talking about bringing me back to do another (would be my 3rd) gamma knife to treat the surgical site and 4-5 other smaller areas they had seen but did not try to surgically remove. At the moment, they're thinking if the big one was necrosis, perhaps so are the smaller ones and more radiation to any of the sites is not likely to be helpful. I'm perfectly happy not doing a 3rd gamma knife, but they're still talking about it, so we'll see. I was quite surprised at the path result being radiation necrosis. Everyone expected there to be central necrosis, but not for the whole thing to be necrotic let alone radiation necrosis. Now the concern is that if that lesion grew that much in a short a time frame (my last gamma knife was in late May just 2 weeks before I started PD-1), even if it did die (and did it die from the radiation or the PD-1) what may happen with the other lesions? Are they also already dead, or is there a chance that they will also swell and potentially cause problems? As I said- I've been lucky and never had any symptoms, but as you pointed out they really can't tell radiation necrosis from the MRI, so there's still much discussion about watch and wait vs another gamma knife and which is going to be less risky in the long run. Personally, I'm leaning a bit towards watch and wait, get an MRI in another couple of weeks and go from there- if they're bigger I'm happy to go for another gamma knife, if not perhaps just keep track of them as I'll be resuming PD-1 this coming week. We may never know if those are also radiation necrosis or not.
Anyway, thinking of you and hoping you get this beat and get back to more normal activities soon.
All the best, always!
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