› Forums › General Melanoma Community › RN update
- This topic has 18 replies, 4 voices, and was last updated 9 years, 6 months ago by
RJoeyB.
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- October 2, 2014 at 1:03 am
As scheduled, I had my brain MRI on Monday, and while the images weren't pretty, frankly, they weren't surprising given the symptoms I've had. As far as my left-side motor control issues, there has been some additional improvement since my last post with the reintroduction of the dexamethasone steroid. Nothing dramatic, but I can move my ankle and toes a little more and my arm, hand, and fingers are becoming a bit more stable and functional again. I'm still using a quad cane and need assistance with some trivial tasks (like parts of getting dressed), but again, have seen some improvement. My wife continues to be helpful and patient with me despite my steroid-induced deteriorating attitude 😉 — speaking of which, the now familiar irritability, jitteriness, fatigue, sleep disturbances, and fat deposits from the steroid are all returning, too.
The MRI images showed a significant increase in the area of cerebral edema (swelling) over both my June and July scans. It had improved from June to July with the steroid, so rather than continue to improve on its own as the steroid was tapered, the radiation necrosis and accompanying edema both worsened. My wife was pretty upset seeing it, but as I said, I wasn't surprised myself — there was no way it was going to look better radiologically with the symptoms as bad as they've been. The central area of necrosis itself was larger than I expected, but according to both the radiologist who read the scan and my radiation oncologist, it still appears consistent with necrosis and not tumor.The question remains about what to do next. The common approach that I've written about before is to play the game of trying to manage the symptoms with the steroids, which won't treat the underlying necrosis, while waiting for the necrosis to resolve on its own, which often happens but not always. The downside is the possibility that this could go on for a year or more of going up and down on steroids, which isn't good for anyone, especially a Stage IV melanoma patient who has had some benefit from multiple immunotherapies and doesn't want anything suppressing that "amped up" immune system.On the unexpected side, my radiation oncologist is leaning towards using Avastin (bevacizumab) to treat the RN. Back when this started in June, she briefly mentioned Avastin as a possibility that we might consider down the road. There are some small studies that have been conducted in the past five years or so that show pretty good results treating RN, regardless of the original tumor type, because this use really has little to do with treating cancer. Rather, just as it can restrict the growth and permeability of blood vessels (angiogenesis) needed for tumor growth, Avastin can use this same effect on necrosis tissue in the brain. While there are some newer trials using Avastin in combination with other agents to treat melanoma, it hasn't been shown to be very effective with melanoma as a single agent. But again, this has almost zero to do with melanoma and is about treating radiation injury to healthy margin tissue. An upside is that rather than just manage the edema symptoms, if it works as hoped, it should treat the underlying cause of those symptoms, i.e. the necrosis itself.There is still some coordination and consultation to do over the next couple of weeks before we officially decide to proceed this direction. First up, I have an appointment with my neurosurgeon next week for him to see me and for him to weigh in, then he, my radiation oncologist, and medical oncologist will all talk and hopefully come to consensus. Surgery is a possibility, but as far as we know, no one thinks we're at that point yet. Ultimately, if we do the Avastin, it will be my medical oncologist who will need to order and manage the treatment delivery — for RN, the study protocols have typically given four IV infusions, each three weeks apart (same schedule as ipi). I also have my next regularly scheduled full-body PET/CT in two weeks, so we want to get through that before deciding to do anything else, on the chance that the PET discovers anything new elsewhere that would contraindicate either Avastin or continued dexamethasone. They may also be able to do a computer image fusion of the brain portion of the PET and the MRI to provide a little more insight into the necrosis itself; it's not typically all that useful, but since they'll have them both, it's worth a look. We're of course praying that the PET comes back otherwise clear, but are too experienced at this now to not be prepared for a surprise. In the meantime, I'll continue on this current dose of dexamethasone and hopefully see some additional improvement, and I have both OT and PT starting up to help keep me functional and operating a little better through this.Thanks for reading and if anyone out there has any experience with Avastin as treatment for symptomatic radiation necrosis, I'd love to hear about it.Joe
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- October 2, 2014 at 12:20 pm
Joe – my husband had a similar experience with radiation necrosis and edema following gamma knife and a craniotomy. He did the Avastin infusions with complete success. I would not hesitate to recommend this treatment. He has had two subsequent gamma knife procedures on other smaller mets that appeared but has not had any issues with recurring radiation necrosis or edema. The Avastin treatment (4 infusions) was done nearly two years ago. Other than continuing to take a low dose of hydrocortisone, he has not had the need for any steroids since then. Take care and I hope your upcoming scans are favorable.
Ann
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- October 2, 2014 at 12:20 pm
Joe – my husband had a similar experience with radiation necrosis and edema following gamma knife and a craniotomy. He did the Avastin infusions with complete success. I would not hesitate to recommend this treatment. He has had two subsequent gamma knife procedures on other smaller mets that appeared but has not had any issues with recurring radiation necrosis or edema. The Avastin treatment (4 infusions) was done nearly two years ago. Other than continuing to take a low dose of hydrocortisone, he has not had the need for any steroids since then. Take care and I hope your upcoming scans are favorable.
Ann
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- October 2, 2014 at 12:20 pm
Joe – my husband had a similar experience with radiation necrosis and edema following gamma knife and a craniotomy. He did the Avastin infusions with complete success. I would not hesitate to recommend this treatment. He has had two subsequent gamma knife procedures on other smaller mets that appeared but has not had any issues with recurring radiation necrosis or edema. The Avastin treatment (4 infusions) was done nearly two years ago. Other than continuing to take a low dose of hydrocortisone, he has not had the need for any steroids since then. Take care and I hope your upcoming scans are favorable.
Ann
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- October 2, 2014 at 3:26 pm
Hang in there Joe. It sounds like you are working on some good plans for this RN situation. Hopefully your pet scan will be good so you can put your full focus on the RN.
Artie
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- October 2, 2014 at 3:26 pm
Hang in there Joe. It sounds like you are working on some good plans for this RN situation. Hopefully your pet scan will be good so you can put your full focus on the RN.
Artie
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- October 2, 2014 at 3:26 pm
Hang in there Joe. It sounds like you are working on some good plans for this RN situation. Hopefully your pet scan will be good so you can put your full focus on the RN.
Artie
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- October 3, 2014 at 2:47 am
So sorry things have been so difficult, but I'm happy to read that you've gotten some improvement with the steroids (even though i completely understand not wanting to be on them and the side effects- ugh I wasn't even on then that long but still had most of those side effects- so happy I'm off them now). I don't even come close to having anything like you do to deal with, but my team right now is going back and forth about whether or not to do another gamma knife or whether to just do a recheck MRI in the next week or 2 to check on things given that my path report showed the tumor they removed a couple weeks ago (can't believe it's already been that long) was total radiation necrosis- no live cells at all. Still glad to have it out, but now the debate is are the other areas also necrosis (in which case more radiation is bad) so should we just monitor for now? Waiting to hear for sure tomorrow and will not argue if they want to wait on more radiation. I also get to resume my (now FDA approved, Yay!) PD-1 at the local hospital which makes me very happy. Everything that's happened recently only posponed my schedule for 1 week (so it's been 4 instead of 3 weeks since my last dose). No big deal at all.
Wishing you the best and if/when you embark on Avistan I sincerely does everything you and your tem hope- you need some good luck these days
Eva
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- October 4, 2014 at 7:56 pm
I appreciate the reply Eva. Just saw your other post today about the results of your MRI. it really is this tightrope to walk when it comes to RN vs. tumor. Common symptoms, both serious, but still would choose RN over tumor, of course. But it gets complex because treating them requires such dIfferent approaches and the only definitive diagnostic is biopsy, which essentially is a repeat craniotomy. Then factor in the dilemma of steroids and immunotherapy for those of us with melanoma, ugh.
My neurosurgeon appointment is Monday. I don't expect we're at the craniotomy point yet, unless he sees something scan-wise that differs wildly from what my radiation oncologist and the radiologist believe they're seeing. My symptoms are continuing to improve, albeit slowly, but any improvement makes a difference. I do wonder if they'll stick with wanting to try Avastin if my symptoms continue to improve, even at this slow rate. Granted, the dexamethasone doesn't treat the RN, but since it can sometimes (more often than not) resolve over time, I can see them backtracking and considering just giving it more time with another go-round of steroid and seeing how it goes.
Either way, no quick answers. I just want to be back to "normal", and neither the symptoms of the edema and RN nor the side effects of the dexamethasone let me feel that way, and the Avastin won't be quick relief. Patience… not my strong suit.
Thanks again, Joe
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- October 4, 2014 at 7:56 pm
I appreciate the reply Eva. Just saw your other post today about the results of your MRI. it really is this tightrope to walk when it comes to RN vs. tumor. Common symptoms, both serious, but still would choose RN over tumor, of course. But it gets complex because treating them requires such dIfferent approaches and the only definitive diagnostic is biopsy, which essentially is a repeat craniotomy. Then factor in the dilemma of steroids and immunotherapy for those of us with melanoma, ugh.
My neurosurgeon appointment is Monday. I don't expect we're at the craniotomy point yet, unless he sees something scan-wise that differs wildly from what my radiation oncologist and the radiologist believe they're seeing. My symptoms are continuing to improve, albeit slowly, but any improvement makes a difference. I do wonder if they'll stick with wanting to try Avastin if my symptoms continue to improve, even at this slow rate. Granted, the dexamethasone doesn't treat the RN, but since it can sometimes (more often than not) resolve over time, I can see them backtracking and considering just giving it more time with another go-round of steroid and seeing how it goes.
Either way, no quick answers. I just want to be back to "normal", and neither the symptoms of the edema and RN nor the side effects of the dexamethasone let me feel that way, and the Avastin won't be quick relief. Patience… not my strong suit.
Thanks again, Joe
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- October 7, 2014 at 7:12 pm
Another update… we had the consultation with neurosurgery/neuro-oncology on Monday — another cook in the kitchen. The doctor who performed my original craniotomy has moved to another hospital, so I'm seeing the chair of the department now. It went mostly as I expected. He believes we're dealing with RN, but also wants to increase confidence level some. While PET can be unreliable for brain, he's hopeful my regularly scheduled PET (full-body, including brain) next week will provide some additional evidence one way or another (RN or tumor). If he still isn't confident in what he's seeing, then he may consider a "perfusion MRI" (shows blood flow), which someone recently mentioned on another thread here recently. There won't be an absolute answer without actual pathology (via surgery), and we're not at that point yet, so we won't decide anything until after the PET next week.
Since restarting the steroid almost 3 weeks ago, I'm continuing to see small improvements, able to move my ankle, foot, toes, hand, and fingers better, albeit unsteady and uncoordinated. I'm still using the cane, but can get around the house without it and can do most everyday things (dressing, showering, etc.) myself in a sometimes modified manner without assistance. Typing is still a primarily one-handed affair, but my left thumb is starting to pick up some light Shift key duties (progress? 😉
I sense that if the neurosurgeon is feeling more confident about the RN diagnosis, then he may want to continue on the steroid path a little longer, given my symptomatic improvement and the fact that I'm still at a relatively lower dose of the steroid, with room to increase it if needed. Avastin is an option, but i don't sense he thinks we're there yet. A revision "clean-up" craniotomy is also an option, but again, he doesn't think we're there yet. Given how well my original craniotomy went, I always figured that a second surgery to the same area would be similar, but apparently revision procedures are more challenging for the blunt but simple fact that "fresh" brain tissue is easier to cut and slice than tissue that's been scarred from prior surgery and radiation. Makes sense. Also, doing Avastin prior to such a procedure adds to the bleeding risk, since Avastin's mechanism of action is to change the permeability of blood vessels. Of course, if there is indication of tumor regrowth instead of RN, the above bets are off and we're likely looking at surgery. Additional SRS (CyberKinfe or Gamma Knife) might normally be considered for something this size, but given the other the possibility of both tumor and RN, they woudn't want to expose that same area to more radiation, at least right now.
I'm trying to remain hopeful that we're still looking at RN, not tumor. Gut reaction from most people is that my symptomatic improvement would tend to indicate RN, not tumor, but the symptoms are being caused by edema and the steroids are treating the edema, not the underlying cause.
More to follow soon,
Joe -
- October 7, 2014 at 7:12 pm
Another update… we had the consultation with neurosurgery/neuro-oncology on Monday — another cook in the kitchen. The doctor who performed my original craniotomy has moved to another hospital, so I'm seeing the chair of the department now. It went mostly as I expected. He believes we're dealing with RN, but also wants to increase confidence level some. While PET can be unreliable for brain, he's hopeful my regularly scheduled PET (full-body, including brain) next week will provide some additional evidence one way or another (RN or tumor). If he still isn't confident in what he's seeing, then he may consider a "perfusion MRI" (shows blood flow), which someone recently mentioned on another thread here recently. There won't be an absolute answer without actual pathology (via surgery), and we're not at that point yet, so we won't decide anything until after the PET next week.
Since restarting the steroid almost 3 weeks ago, I'm continuing to see small improvements, able to move my ankle, foot, toes, hand, and fingers better, albeit unsteady and uncoordinated. I'm still using the cane, but can get around the house without it and can do most everyday things (dressing, showering, etc.) myself in a sometimes modified manner without assistance. Typing is still a primarily one-handed affair, but my left thumb is starting to pick up some light Shift key duties (progress? 😉
I sense that if the neurosurgeon is feeling more confident about the RN diagnosis, then he may want to continue on the steroid path a little longer, given my symptomatic improvement and the fact that I'm still at a relatively lower dose of the steroid, with room to increase it if needed. Avastin is an option, but i don't sense he thinks we're there yet. A revision "clean-up" craniotomy is also an option, but again, he doesn't think we're there yet. Given how well my original craniotomy went, I always figured that a second surgery to the same area would be similar, but apparently revision procedures are more challenging for the blunt but simple fact that "fresh" brain tissue is easier to cut and slice than tissue that's been scarred from prior surgery and radiation. Makes sense. Also, doing Avastin prior to such a procedure adds to the bleeding risk, since Avastin's mechanism of action is to change the permeability of blood vessels. Of course, if there is indication of tumor regrowth instead of RN, the above bets are off and we're likely looking at surgery. Additional SRS (CyberKinfe or Gamma Knife) might normally be considered for something this size, but given the other the possibility of both tumor and RN, they woudn't want to expose that same area to more radiation, at least right now.
I'm trying to remain hopeful that we're still looking at RN, not tumor. Gut reaction from most people is that my symptomatic improvement would tend to indicate RN, not tumor, but the symptoms are being caused by edema and the steroids are treating the edema, not the underlying cause.
More to follow soon,
Joe -
- October 7, 2014 at 7:12 pm
Another update… we had the consultation with neurosurgery/neuro-oncology on Monday — another cook in the kitchen. The doctor who performed my original craniotomy has moved to another hospital, so I'm seeing the chair of the department now. It went mostly as I expected. He believes we're dealing with RN, but also wants to increase confidence level some. While PET can be unreliable for brain, he's hopeful my regularly scheduled PET (full-body, including brain) next week will provide some additional evidence one way or another (RN or tumor). If he still isn't confident in what he's seeing, then he may consider a "perfusion MRI" (shows blood flow), which someone recently mentioned on another thread here recently. There won't be an absolute answer without actual pathology (via surgery), and we're not at that point yet, so we won't decide anything until after the PET next week.
Since restarting the steroid almost 3 weeks ago, I'm continuing to see small improvements, able to move my ankle, foot, toes, hand, and fingers better, albeit unsteady and uncoordinated. I'm still using the cane, but can get around the house without it and can do most everyday things (dressing, showering, etc.) myself in a sometimes modified manner without assistance. Typing is still a primarily one-handed affair, but my left thumb is starting to pick up some light Shift key duties (progress? 😉
I sense that if the neurosurgeon is feeling more confident about the RN diagnosis, then he may want to continue on the steroid path a little longer, given my symptomatic improvement and the fact that I'm still at a relatively lower dose of the steroid, with room to increase it if needed. Avastin is an option, but i don't sense he thinks we're there yet. A revision "clean-up" craniotomy is also an option, but again, he doesn't think we're there yet. Given how well my original craniotomy went, I always figured that a second surgery to the same area would be similar, but apparently revision procedures are more challenging for the blunt but simple fact that "fresh" brain tissue is easier to cut and slice than tissue that's been scarred from prior surgery and radiation. Makes sense. Also, doing Avastin prior to such a procedure adds to the bleeding risk, since Avastin's mechanism of action is to change the permeability of blood vessels. Of course, if there is indication of tumor regrowth instead of RN, the above bets are off and we're likely looking at surgery. Additional SRS (CyberKinfe or Gamma Knife) might normally be considered for something this size, but given the other the possibility of both tumor and RN, they woudn't want to expose that same area to more radiation, at least right now.
I'm trying to remain hopeful that we're still looking at RN, not tumor. Gut reaction from most people is that my symptomatic improvement would tend to indicate RN, not tumor, but the symptoms are being caused by edema and the steroids are treating the edema, not the underlying cause.
More to follow soon,
Joe -
- October 4, 2014 at 7:56 pm
I appreciate the reply Eva. Just saw your other post today about the results of your MRI. it really is this tightrope to walk when it comes to RN vs. tumor. Common symptoms, both serious, but still would choose RN over tumor, of course. But it gets complex because treating them requires such dIfferent approaches and the only definitive diagnostic is biopsy, which essentially is a repeat craniotomy. Then factor in the dilemma of steroids and immunotherapy for those of us with melanoma, ugh.
My neurosurgeon appointment is Monday. I don't expect we're at the craniotomy point yet, unless he sees something scan-wise that differs wildly from what my radiation oncologist and the radiologist believe they're seeing. My symptoms are continuing to improve, albeit slowly, but any improvement makes a difference. I do wonder if they'll stick with wanting to try Avastin if my symptoms continue to improve, even at this slow rate. Granted, the dexamethasone doesn't treat the RN, but since it can sometimes (more often than not) resolve over time, I can see them backtracking and considering just giving it more time with another go-round of steroid and seeing how it goes.
Either way, no quick answers. I just want to be back to "normal", and neither the symptoms of the edema and RN nor the side effects of the dexamethasone let me feel that way, and the Avastin won't be quick relief. Patience… not my strong suit.
Thanks again, Joe
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- October 3, 2014 at 2:47 am
So sorry things have been so difficult, but I'm happy to read that you've gotten some improvement with the steroids (even though i completely understand not wanting to be on them and the side effects- ugh I wasn't even on then that long but still had most of those side effects- so happy I'm off them now). I don't even come close to having anything like you do to deal with, but my team right now is going back and forth about whether or not to do another gamma knife or whether to just do a recheck MRI in the next week or 2 to check on things given that my path report showed the tumor they removed a couple weeks ago (can't believe it's already been that long) was total radiation necrosis- no live cells at all. Still glad to have it out, but now the debate is are the other areas also necrosis (in which case more radiation is bad) so should we just monitor for now? Waiting to hear for sure tomorrow and will not argue if they want to wait on more radiation. I also get to resume my (now FDA approved, Yay!) PD-1 at the local hospital which makes me very happy. Everything that's happened recently only posponed my schedule for 1 week (so it's been 4 instead of 3 weeks since my last dose). No big deal at all.
Wishing you the best and if/when you embark on Avistan I sincerely does everything you and your tem hope- you need some good luck these days
Eva
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- October 3, 2014 at 2:47 am
So sorry things have been so difficult, but I'm happy to read that you've gotten some improvement with the steroids (even though i completely understand not wanting to be on them and the side effects- ugh I wasn't even on then that long but still had most of those side effects- so happy I'm off them now). I don't even come close to having anything like you do to deal with, but my team right now is going back and forth about whether or not to do another gamma knife or whether to just do a recheck MRI in the next week or 2 to check on things given that my path report showed the tumor they removed a couple weeks ago (can't believe it's already been that long) was total radiation necrosis- no live cells at all. Still glad to have it out, but now the debate is are the other areas also necrosis (in which case more radiation is bad) so should we just monitor for now? Waiting to hear for sure tomorrow and will not argue if they want to wait on more radiation. I also get to resume my (now FDA approved, Yay!) PD-1 at the local hospital which makes me very happy. Everything that's happened recently only posponed my schedule for 1 week (so it's been 4 instead of 3 weeks since my last dose). No big deal at all.
Wishing you the best and if/when you embark on Avistan I sincerely does everything you and your tem hope- you need some good luck these days
Eva
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