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Radiation Necrosis for Brain Met Following SRS
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Radiation Necrosis for Brain Met Following SRS

› Forums › General Melanoma Community › Radiation Necrosis for Brain Met Following SRS

  • Post
    • June 18, 2014 at 5:29 am
    RJoeyB
    Participant
      I've been lurking for a long time, replying to others for a few weeks, and wouldn't you know it, it's time for me to ask my own questions with my first "new topic" post 😉 Not necessarily any specific questions, but interested to know others’ experiences and perhaps share a little of my own experience in this aspect of melanoma that may benefit others. My details are available in my profile, but the highlights are that I've been Stage IV since my diagnosis in July 2010, participated in TIL and IL-2 trials at NIH, had a full course of ipilimumab at my home hospital here in Philadelphia, along with 7 surgeries, and 6 rounds of radiation, mostly SBRT, and including a brain met, craniotomy, and CyberKnife SRS about 15 months ago. I've never been officially NED, but have had a couple of 6 month stretches where you could say I've been close. But my focus here is on the brain met, and following my most recent brain MRI yesterday which is the first time I've had less than stellar results since the brain met was originally treated in early 2013.
       
      So, specific history of the brain met and subsequent treatment (I copied this part from a section of my recent CaringBridge blog that I posted for my family. I made some modifications, so hopefully it doesn't sound too disjointed or state too much of the obvious for our more educated melanoma crowd here)… When the brain met turned up, it was first found on a regularly scheduled PET-CT scan, which I get every three months. We know that PET scans are notoriously ineffective at catching brain tumors (because the whole brain lights up naturally on PET), so an annual (now every three month for me) brain MRI is (was) also part of the standard monitoring for melanoma — at the time of that PET scan, my annual brain MRI was scheduled for later that same week. Whether the tumor itself or the associated swelling were so large or significant, however, it was the PET scan that caught it first, even though the scan just three months prior had been clean in the brain. Shaped like a walnut and 2.5 centimeters (about an inch) across, it was a moderately-sized brain metastasis for melanoma. The swelling appeared in a plane across a large percentage of the right hemisphere of my brain. The swelling and resulting pressure on normal brain tissue is usually the cause of side effects, whether physical or cognitive. In my case, the tumor was in the right side of my brain, in the area responsible for left-side motor control. In the six weeks or so prior to finding the tumor, I had experienced some symptoms, including a left side limp and two instances of focal seizures in my left arm. These were all masked by the fact that I'd had prior surgeries on both, a full replacement of my proximal left humerus and a tumor excision in my left femur, so they seemed like things just perhaps “acting up” (a strange coincidence that was just repeated a second time, I'll get to that in a second). No pun intended, but despite the symptoms, a brain met was the last thing “on my mind” going into that set of scans. Immediately following the brain tumor diagnosis, they started me on the steroid Decadron (dexamethasone), and within days I was walking better, even prior to the surgery.
       
      The tumor was found on a Thursday, I was admitted immediately and started on Decadron, had an MRI the following day, consulted with the neurosurgeon, and once stabilized with the steroid, allowed to go home for a few days prior to surgery. Five days after the diagnosis I had the craniotomy, following which my neurosurgeon felt good that he had removed as much of the visible tumor as possible(recognizing it only takes one cell for the tumor to live on). First night was spent as a standard in the ICU, second night in a regular room, and two days after the craniotomy, I was able to go home. As brain surgeries go, I can't imagine it could have gone any better, I felt great after. Of course, typical after such a procedure, since the surgical margins in the brain are so small, I received radiation. In my case, it was CyberKnife, a form of “stereotactic radiosurgery” or “SRS” — basically highly focused radiation targeted at the tumor “bed” along the edges of where the tumor had been. Whole brain radiation (WBR) was offered and considered but not recommended, at least for my specific situation. The SRS was done about a month following the surgery, a single session of CyberKnife, and also went well. Again, the tumor was about 2.5-cm. Once the surgery and radiation were completed and the swelling had fully resolved, there was a small empty cavity left behind, perhaps 7-mm, where the tumor had been. This was expected and has remained completely stable in every scan since then — yesterday was the eighth brain MRI I've had since the surgery 15 months ago — the area has often been described by my radiation oncologist (who we love) as “pristine” after each scan. (I like hearing my brain described as pristine. And although I know the context and intent, I'm less fond of reading a radiologist’s report describe my brain as “unremarkable” 😉
       
      Fast forward to this year, where strange timing comes into play again. I had a small 13-mm lung met treated with 5 sessions of SBRT in February, asymptomatic and a relatively easy treatment. In March was my regular 3-month brain MRI, again “pristine”. In April was my regular 3-month PET, including a first look at how the lung met was doing — already responding, decreased size and lower SUV. But a bone met in my left tibia that had been radiated three years ago was showing signs of increased activity after three years of good response and stability. Rather than re-radiate, which is generally not preferred, my orthopedic oncologist operated about 4 weeks ago. I had a similar procedure on my left femur in 2012: incision, drill into the bone cortex, curettage (“scooping”) of the tumor out from the inside of the bone, burr the inside surface of the cortex, fill the defect with bone cement, and then resurface the cortex with artificial bone graft. The majority of the tumor was necrotic (all black as they'd expect a melanoma tumor to look) from the prior radiation therapy, but with some pathologically confirmed new growth. Relatively straightforward procedure though. It was outpatient, recovery went well, I took it easy the first few days, was back to work 5 days after surgery and on crutches for a week (mostly precautionary since I could bear weight on it even as I left the hospital), and started taking gentle walks of a couple miles in the park two weeks after. Pain has steadily decreased, the incision has healed well, and the bone graft will be replaced by new bone growth over a 6 week period. Some mild pain still when ascending stairs, but not a surprise given that a one inch hole was drilled into my bone less than a month ago. Regular walking on a fairly level surface is pain free and has been for over a week. Where it starts to get interesting is that even when the pain subsided, I couldn't shake the limp, as if I was dragging my left foot to move. I figured it was a result of having had to favor the other leg for several weeks and again, it had only been a short time since surgery, so assumed it would subside, but it just hasn’t seemed right. Other small interesting things, odd small motor control issues in my left ankle and foot, but again, figured it would all improve pretty quickly. Otherwise, no pain or seizures, but given my prior history, in the back of my head, I knew I needed to mention it to my doctor following my MRI yesterday, just in case. I warned my wife that I was noticing this, that I wasn't too concerned, but I didn't want her to be surprised when I brought it up at our appointment.
       
      Yesterday I had my brain MRI in the morning and saw my radiation oncologist (who did the CyberKnife 25 months ago) in the afternoon. I'm so thankful to be at a facility that turns around scan results to the doctors the same day. This was MRI #8 since the craniotomy, every two months for the first 6 months and every three months since, all perfect. (Funny, in hindsight, yesterday everyone from the MRI tech to the radiologist who read the images to folks in my radiation oncologist’s office were all acting a little “off”, not overly concerned, but it seemed like there was something going on — could just be me, though). Long story short, after explaining to the nurse and then my doctor how I've been doing, including the recent limp issues after surgery, and the fact that I've managed to finally take off the 50 pounds I gained after the craniotomy (steroids, appetite, and being overly sedentary) by improving my diet and getting more active, she confirmed that I wasn't crazy (at least in this particular regard ;-), that there was something new going on that we hadn't seen in any previous scans.
       
      That “something” is either regrowth of the excised original tumor or radiation necrosis around the original tumor cavity. We knew radiation necrosis was a possible complication before starting SRS. As explained to me (and I've verified through my own research in the past day), symptomatic radiation necrosis occurs in approximately 10-15% of patients who receive SRS for brain mets (with or without surgery), and the number may be as high as 50% taking into account asymptomatic necrosis that is never reported. To clarify, the 10-15% doesn't mean that the other 85-90% have tumor recurrence. But when necrosis happens, onset is typically 6 to 24 months following treatment — I'm at 15 months, so squarely in the middle of that range. I still find it odd that onset can lag treatment by so much, but I understand that’s how it works. Differentiating necrosis from tumor is extremely difficult without directly examining and testing tissue, there are some techniques using forms of MRI and PET that have been tried but not proven all that reliable. Edema (swelling) can result as easily from necrosis or tumor, so that is not a good indicator. If symptoms can be managed, it seems early observation is the first step. Quick upside, no new lesions elsewhere in the brain at any point, including this scan.
       
      That's where we’re at now. I've started on a lower dose of Decadron. I was on it for about two weeks around the time of the craniotomy (along with Keppra for anti-seizure) and tolerated it pretty well. I was wired and could eat like no tomorrow (cheesesteak for breakfast, anyone?), plus my blood glucose took a hit, but I slept relatively well, and probably leaned more towards euphoria than agitation; not manic, but it was more of a mood enhancer than depressor. The hope is that the motor symptoms in my leg resolve relatively soon, and then I just need to keep a keen eye out for other symptoms, including other motor control issues, seizures, vision changes, headaches, etc. The site is right in the area for left-side motor control, though, and despite the symptoms prior to the craniotomy, I didn't require any physical therapy following the original surgery (although I was warned it was a possibility). 
       
      I'll remain on the steroid until the next MRI, which at the latest will now be in just six weeks. My radiation, medical, and neuro oncologists will all be talking this week to confirm and it's possible they'll decide to move the MRI up or take another approach entirely, but my sense is that this will be the plan. Following the scan, if it looks relatively unchanged from yesterday’s scan, we’d likely stay the course and continue to monitor with future scans and also try to decrease and eliminate the steroid and see how I respond. If there is no new growth or slight growth but the edema or motor symptoms remain, we'd continue the steroid and possibly consider something like Avastin. I'm aware of Avastin for treatment of several cancers, including a family friend with glioblastoma, due to it's anti-angiogenesis (blocking the development of new blood vessels) properties, but didn't know that it could also be used to manage radiation necrosis, although I've now read a number of sources that mention it. It sounds like radiation necrosis, for lack of a better phrase, can often “settle down” and stabilize as the growth subsides, but sometimes requires something beyond steroids to bring it under control.
       
      The worst case is that either the necrosis becomes too aggressive or the growth turns out to be new tumor. Either would be indicated by more rapid new growth and could likely require another surgery — necrosis vs. tumor wouldn't be known until pathological testing of what's removed after the surgery. Frankly, and this isn't trying to be a tough guy, but having done it already, a craniotomy doesn't frighten me all that much. I've been sliced, diced, poked, prodded, drilled, injected, poisoned, and zapped so there's not much that can be done that hasn't been done already. Not to say there’s no anxiety involved prior to any such treatment, but it's certainly easier the second time around with anything (except spiders and snakes which fortunately have not been part of any treatment protocol, at least none that I've had). 
       
      We (the “royal we”, my wife, daughters, and I) are handling this O.K. The shock of my original diagnosis and 2.5 years later the discovery of the brain met were toughest. I'm monitored so frequently, I go into scans with the same “scanxiety”, but I'm better at managing it (lots of new practice with mindful meditation and breathing exercises) and honestly, while anything can happen, I less expect to hear devastating news with a scan. Bad news? Always a possibility, but I don't expect to suddenly hear something akin to, “There’s nothing more we can do.” The bad news could always be the start of a snowball that eventually gets me to the worst case scenario, but we still have a number options left in our pocket to try.
       
      So that's where I'm at. I'd like to hear from anyone with similar experience of new localized activity at some point following SRS (with or without surgery) as a result of either radiation necrosis or regrowth of the originally treated tumor. I'm less interested in study results unless they significantly contradict what I've written here. I've read many in the past 24 hours and they seem to be in pretty close agreement with what I've been told and read elsewhere, e.g. the 10-15% occurrence rate, 6-24 month onset of necrosis, and difficulty in telling necrosis apart from tumor regrowth. But if you have something significantly differing from all that, please share, and of course, any similar experiences and how things progressed for you are most welcome. If not, hopefully this recent experience of mine can add to the compendium of experiences available here and help educate someone else. I'll of course try to update as I move through these next several weeks.
       
      Best,
      Joe
       
       
       
    Viewing 5 reply threads
    • Replies
        • June 18, 2014 at 4:23 pm
        odonoghue80
        Participant

          Joe, that is some tough news – especially after you were doing so well after your first brain treatments. You are definitely on top of your stuff and I'm sure you'll do fine. I can give you my brain treatments and necrosis battle and how everything played out.

          However my order of treatments was different than yours. When my brain tumor showed up in December in 2013 we decided to treat it with SRS. The spot of my tumor was in the left temporal that controls many cognitive skills, including communication skills and especially speech. As you know the single dose of radiation is pretty easy (considering of course). I followed at the 3 month mark and my radiation oncologist said my tumor was eridacated and thought my scan looks awesome. It was great news to hear. However, just before the 6 month follow up, I noticed my speech was faultering and then one night I had a seizure (I never had seizures before but from reading posts from other melanoma patients like us, that I was aware seizures are a possibility, and I notified my parents that I was going to have a seizure). 

          So then all my doctors and oncologists were trying to figure out whats going on and what to do now. I started on decadron and we were see if the edema would go down. After the next few weeks the swelling seemed to stable, but after about a month to 6 weeks my speech was slipping. I could not speak the way I was used to, and could not find the words to say that I wanted to say. It was scary. After all the scans, brain MRI, and meeting with neurosurgeons and radiation onc, nuerologist, we decided that I needed to have an awake craniotomy. The location of my tumor and necrosis could leave me with some serious problems. So I was all set to have my surgery at Univ of Chicago but I went to MD Anderson for a second opinion. I ended up switching at the last minute and had my awake craniotomy at MDA. I ended up with serious aphasia. After the awake craniotomy I barely knew my name and could not talk. (Fortunately I worked extremely hard over the first 4 months after the surgery to rehabiliate my speech, and processing skills. Tough road, but I'm lucky that I'm even able to type this.) 

          Anyways, the problem that I was having, ended up all due to necrosis. The original tumor was radiated and the issue giving me the problems was necrosis. As you mentioned before, in the brain, the doctors can not tell if the issue is necrosis or tumor until the tissue is tested. The necrosis in the brain acts like a tumor. So either way its necrosis or tumor, we needed to get it out (in my case). Especially because of the sensitive area of the brain affected. I remember asking after my surgery why didn't we just have the surgery right away once we knew something was activated again on that site. How do you control edema and necrosis effectively, especially over the long time. My understanding is that necrosis in the brain will continue to eat and damage the cells around itself. Can we ever stop the necrosis in the brain? 

          I'll be interested to see what you do and how you and your doctors approach to the necrosis. In my case, my doctors dealed with the necrosis through an awake craniotomy (awake because of the location of the tumor/necrosis). I'm wondering if you can have another craniotomy – I know this isn't easy but I'm wondering are there other options than staying on steroids, avastin, etc? 

          I hope this helps, I know my story is different, but I wish you the best of luck. I appreciate your informative posts.

          Thanks,

          Shane

            • June 19, 2014 at 1:35 am
            jmmm
            Participant

              My husband has been through radiation induced necrosis.  About 10 months post craniotomy and 11 months post gamma knife, he had a PETscan which led to his NED status, then 1 week later had a grand mal seizure out of nowhere.  After a MRI, they did diagnosis him with necrosis.  He was put on steroids and anti-seizure meds.  They rescanned in a month and it looked slightly better.   Over the next 6 months, they scanned every 2 months and slowly weaned down on the steroids.  It continued looking slightly better each time.  It took him almost a year to finally get off the steroids (very long year for all of us:)).   It's been almost 18 months since he completely weaned off the steroids.  He remains on anti-seizure meds.  His brain also remains clear.  I know his response isn't typical and many times another craniotomy is necessary to remove the dead tissue, but it is possible:). 

              • June 19, 2014 at 1:35 am
              jmmm
              Participant

                My husband has been through radiation induced necrosis.  About 10 months post craniotomy and 11 months post gamma knife, he had a PETscan which led to his NED status, then 1 week later had a grand mal seizure out of nowhere.  After a MRI, they did diagnosis him with necrosis.  He was put on steroids and anti-seizure meds.  They rescanned in a month and it looked slightly better.   Over the next 6 months, they scanned every 2 months and slowly weaned down on the steroids.  It continued looking slightly better each time.  It took him almost a year to finally get off the steroids (very long year for all of us:)).   It's been almost 18 months since he completely weaned off the steroids.  He remains on anti-seizure meds.  His brain also remains clear.  I know his response isn't typical and many times another craniotomy is necessary to remove the dead tissue, but it is possible:). 

                • June 19, 2014 at 1:35 am
                jmmm
                Participant

                  My husband has been through radiation induced necrosis.  About 10 months post craniotomy and 11 months post gamma knife, he had a PETscan which led to his NED status, then 1 week later had a grand mal seizure out of nowhere.  After a MRI, they did diagnosis him with necrosis.  He was put on steroids and anti-seizure meds.  They rescanned in a month and it looked slightly better.   Over the next 6 months, they scanned every 2 months and slowly weaned down on the steroids.  It continued looking slightly better each time.  It took him almost a year to finally get off the steroids (very long year for all of us:)).   It's been almost 18 months since he completely weaned off the steroids.  He remains on anti-seizure meds.  His brain also remains clear.  I know his response isn't typical and many times another craniotomy is necessary to remove the dead tissue, but it is possible:). 

                • June 18, 2014 at 4:23 pm
                odonoghue80
                Participant

                  Joe, that is some tough news – especially after you were doing so well after your first brain treatments. You are definitely on top of your stuff and I'm sure you'll do fine. I can give you my brain treatments and necrosis battle and how everything played out.

                  However my order of treatments was different than yours. When my brain tumor showed up in December in 2013 we decided to treat it with SRS. The spot of my tumor was in the left temporal that controls many cognitive skills, including communication skills and especially speech. As you know the single dose of radiation is pretty easy (considering of course). I followed at the 3 month mark and my radiation oncologist said my tumor was eridacated and thought my scan looks awesome. It was great news to hear. However, just before the 6 month follow up, I noticed my speech was faultering and then one night I had a seizure (I never had seizures before but from reading posts from other melanoma patients like us, that I was aware seizures are a possibility, and I notified my parents that I was going to have a seizure). 

                  So then all my doctors and oncologists were trying to figure out whats going on and what to do now. I started on decadron and we were see if the edema would go down. After the next few weeks the swelling seemed to stable, but after about a month to 6 weeks my speech was slipping. I could not speak the way I was used to, and could not find the words to say that I wanted to say. It was scary. After all the scans, brain MRI, and meeting with neurosurgeons and radiation onc, nuerologist, we decided that I needed to have an awake craniotomy. The location of my tumor and necrosis could leave me with some serious problems. So I was all set to have my surgery at Univ of Chicago but I went to MD Anderson for a second opinion. I ended up switching at the last minute and had my awake craniotomy at MDA. I ended up with serious aphasia. After the awake craniotomy I barely knew my name and could not talk. (Fortunately I worked extremely hard over the first 4 months after the surgery to rehabiliate my speech, and processing skills. Tough road, but I'm lucky that I'm even able to type this.) 

                  Anyways, the problem that I was having, ended up all due to necrosis. The original tumor was radiated and the issue giving me the problems was necrosis. As you mentioned before, in the brain, the doctors can not tell if the issue is necrosis or tumor until the tissue is tested. The necrosis in the brain acts like a tumor. So either way its necrosis or tumor, we needed to get it out (in my case). Especially because of the sensitive area of the brain affected. I remember asking after my surgery why didn't we just have the surgery right away once we knew something was activated again on that site. How do you control edema and necrosis effectively, especially over the long time. My understanding is that necrosis in the brain will continue to eat and damage the cells around itself. Can we ever stop the necrosis in the brain? 

                  I'll be interested to see what you do and how you and your doctors approach to the necrosis. In my case, my doctors dealed with the necrosis through an awake craniotomy (awake because of the location of the tumor/necrosis). I'm wondering if you can have another craniotomy – I know this isn't easy but I'm wondering are there other options than staying on steroids, avastin, etc? 

                  I hope this helps, I know my story is different, but I wish you the best of luck. I appreciate your informative posts.

                  Thanks,

                  Shane

                  • June 18, 2014 at 4:23 pm
                  odonoghue80
                  Participant

                    Joe, that is some tough news – especially after you were doing so well after your first brain treatments. You are definitely on top of your stuff and I'm sure you'll do fine. I can give you my brain treatments and necrosis battle and how everything played out.

                    However my order of treatments was different than yours. When my brain tumor showed up in December in 2013 we decided to treat it with SRS. The spot of my tumor was in the left temporal that controls many cognitive skills, including communication skills and especially speech. As you know the single dose of radiation is pretty easy (considering of course). I followed at the 3 month mark and my radiation oncologist said my tumor was eridacated and thought my scan looks awesome. It was great news to hear. However, just before the 6 month follow up, I noticed my speech was faultering and then one night I had a seizure (I never had seizures before but from reading posts from other melanoma patients like us, that I was aware seizures are a possibility, and I notified my parents that I was going to have a seizure). 

                    So then all my doctors and oncologists were trying to figure out whats going on and what to do now. I started on decadron and we were see if the edema would go down. After the next few weeks the swelling seemed to stable, but after about a month to 6 weeks my speech was slipping. I could not speak the way I was used to, and could not find the words to say that I wanted to say. It was scary. After all the scans, brain MRI, and meeting with neurosurgeons and radiation onc, nuerologist, we decided that I needed to have an awake craniotomy. The location of my tumor and necrosis could leave me with some serious problems. So I was all set to have my surgery at Univ of Chicago but I went to MD Anderson for a second opinion. I ended up switching at the last minute and had my awake craniotomy at MDA. I ended up with serious aphasia. After the awake craniotomy I barely knew my name and could not talk. (Fortunately I worked extremely hard over the first 4 months after the surgery to rehabiliate my speech, and processing skills. Tough road, but I'm lucky that I'm even able to type this.) 

                    Anyways, the problem that I was having, ended up all due to necrosis. The original tumor was radiated and the issue giving me the problems was necrosis. As you mentioned before, in the brain, the doctors can not tell if the issue is necrosis or tumor until the tissue is tested. The necrosis in the brain acts like a tumor. So either way its necrosis or tumor, we needed to get it out (in my case). Especially because of the sensitive area of the brain affected. I remember asking after my surgery why didn't we just have the surgery right away once we knew something was activated again on that site. How do you control edema and necrosis effectively, especially over the long time. My understanding is that necrosis in the brain will continue to eat and damage the cells around itself. Can we ever stop the necrosis in the brain? 

                    I'll be interested to see what you do and how you and your doctors approach to the necrosis. In my case, my doctors dealed with the necrosis through an awake craniotomy (awake because of the location of the tumor/necrosis). I'm wondering if you can have another craniotomy – I know this isn't easy but I'm wondering are there other options than staying on steroids, avastin, etc? 

                    I hope this helps, I know my story is different, but I wish you the best of luck. I appreciate your informative posts.

                    Thanks,

                    Shane

                    • June 20, 2014 at 4:11 am
                    RJoeyB
                    Participant
                      Thanks for your responses, I really appreciate your taking the time to read through my long post — there was a lot to explain and I wanted to make sure I covered everything relevant to this brain met.  Like many of you, I think my entire diagnosis to present story could fill a volume.  Anyway, your replies are spot on with the kind of similar experiences I’m hoping to hear about (and if anyone else managed to make it through my post, I'd love to hear your experiences, too).
                       
                      Shane, the cognitive impact sounds like it was tough.  Congratulations on the hard work to get back what's yours!  You make an interesting observation about necrosis and tumor having much in common, even though we tend to think of the malignant tumor being much more dangerous, necrosis can have just as much an impact.  (And can we do something about the term “necrosis”?  Every time I hear it, it makes me think of some rotting flesh zombie thing.)  To answer some of your follow-ups and share a little more of what I've learned in the past couple of days…  yes, a second craniotomy would be an option for me if needed.  I don't relish the idea, but without trying to be blasé about it, been there done that — as having a hole drilled into my head and then my brain sliced up can go, I think it went as well as it could have.  An awake craniotomy is frightening, but not necessary in my case.  
                       
                      My impression from my radiation oncologist, who as I mentioned before I trust a great deal, along with some reading I've done, is that necrosis can “settle down” or be persistent in its progression.  As with any scar tissue, it forms, inflames, and then should start to “resolve”.  Whether a scar on the skin or one in an organ or bone.  As it inflames, sometimes a steroid is needed to manage the impact of the inflammation — in the case of the brain, that's the edema.  If the scar tissue continues to expand, sometimes Avastin can slow and stop that growth.  However, if the steroids and/or Avastin (or any other medications) fail to help, them we’re left with two conundrums:  (1) is the growth new tumor, (2) and even if not, how do we stop the progression of necrosis?  The only was to answer/address both is a craniotomy.  The answer could end up being that it's one or the other, it could also be a little of both.  If “just” necrosis, it sounds like there's no need for subsequent radiotherapy, if there is some new tumor growth, perhaps additional radiation could be used.
                       
                      Jmmm, it sounds like you and your husband have had quite the ride, too, glad to hear that things remain clear.  For both you and Shane, your necrosis experiences have gone on longer than I was expecting would be the norm, but after reconsidering the conversation I had with my doctor on Monday, I can see how my own journey could be the same.  While a second craniotomy is an option, I don't think anyone wants to rush to that, which means doing everything they can to use Decadron and potentially Avastin to manage, control, and hopefully stop it, with the craniotomy being sort of a last resort.
                       
                      So for now I'm on Decadron, orally 4-mg twice per day.  When I had the original met, it was 10-mg IV initially and the eventually quickly tapered down on to orally 4-mg thrice, then twice, then once per day after leaving the hospital.  From met diagnosis to last dose of Decadron was perhaps two weeks.  I tolerated it pretty well over that period of time.  They're talking about keeping me on it for the next six weeks until the next MRI, we’ll see how I do with it over a longer period of time.  I was on Keppra for anti-seizure with the original met, especially since I'd had what in hindsight were focal seizures in my arm in the weeks leading up to the diagnosis.  No plans for Keppra for now unless I experience anything similar.  It's only been three days, but I think I may be seeing some small improvement in the symptoms, but I can't say for sure yet.  With the original tumor, the Decadron had a pretty fast impact, albeit at the higher IV dosages.  Frankly, it could have been worse, it's been primarily a noticeable and persistent limp in my left leg along with fine motor control in my ankle and foot — funny story, before the leg surgery, as the weather warmed, I was wearing flip-flops and kept complaining to my wife that the darn left flip-flop kept flying off when I walked and I couldn't wear the things any more!  I thought I'd somehow stretched out three different pairs of flip-flops or my left foot had somehow shrunk, but it turns out it was likely the way my leg and foot were taking their stride, combined with the fact that I couldn't sort of shrug my toes into the left sandle to hold it in place. Again, hindsight is 20/20 — a warning to all, if you can't wear one flip-flop, it might be a brain tumor, or at least radiation necrosis 😉 
                       
                      And again, the plan is to wait 6 weeks until I see symptoms change, which, although frustrating, seems reasonable and is probably an appropriate first round of time to see how things progress, or don't.  We could easily find ourselves in 6 weeks starting another round of observation and waiting, we’ll see.  I also have my next PET scan around the same time, and sometimes (rarely, but sometimes), they can observe something on the PET that the brain MRI interprets differently, so there could be some supplementary information in there.
                       
                      I sometimes tire of the war/battle analogies, but at the risk of perpetuating it, after all I've been through, I'm hoping this is sort of a continuation of the “mop-up operation following the conclusion of combat operations”.  I was deflated at first when this leg tumor acted up, but once we realized it wasn't a new tumor but one that had been previously radiated and now needed further maintenance, it somehow made it easier.  I'm not trying to downplay necrosis, you've helped me understand that it's nothing to underestimate, only that it isn't representative of new disease progression.  Of course, my last PET showed a questionable spot on my distal ileum (end of the small intestine), but the follow-up scope didn't find anything, so hoping the next PET in six weeks shows no activity there (I've already been down the same road of a false GI finding on PET about two years ago).
                       
                      Thanks again for replying, I'm happy to hear you both fought through and are doing well with the necrosis after prolonged and challenging fights.  Any other insights anyone can offer, I'd appreciate them.  I'll update this thread, hopefully soon, if I start to see verifiable short-term improvement in my leg.  I've been going about my business best I can, working, going for regular (but gimpy) walks in the park, etc.
                       
                      Cheers,
                      Joe
                       
                      • June 20, 2014 at 4:11 am
                      RJoeyB
                      Participant
                        Thanks for your responses, I really appreciate your taking the time to read through my long post — there was a lot to explain and I wanted to make sure I covered everything relevant to this brain met.  Like many of you, I think my entire diagnosis to present story could fill a volume.  Anyway, your replies are spot on with the kind of similar experiences I’m hoping to hear about (and if anyone else managed to make it through my post, I'd love to hear your experiences, too).
                         
                        Shane, the cognitive impact sounds like it was tough.  Congratulations on the hard work to get back what's yours!  You make an interesting observation about necrosis and tumor having much in common, even though we tend to think of the malignant tumor being much more dangerous, necrosis can have just as much an impact.  (And can we do something about the term “necrosis”?  Every time I hear it, it makes me think of some rotting flesh zombie thing.)  To answer some of your follow-ups and share a little more of what I've learned in the past couple of days…  yes, a second craniotomy would be an option for me if needed.  I don't relish the idea, but without trying to be blasé about it, been there done that — as having a hole drilled into my head and then my brain sliced up can go, I think it went as well as it could have.  An awake craniotomy is frightening, but not necessary in my case.  
                         
                        My impression from my radiation oncologist, who as I mentioned before I trust a great deal, along with some reading I've done, is that necrosis can “settle down” or be persistent in its progression.  As with any scar tissue, it forms, inflames, and then should start to “resolve”.  Whether a scar on the skin or one in an organ or bone.  As it inflames, sometimes a steroid is needed to manage the impact of the inflammation — in the case of the brain, that's the edema.  If the scar tissue continues to expand, sometimes Avastin can slow and stop that growth.  However, if the steroids and/or Avastin (or any other medications) fail to help, them we’re left with two conundrums:  (1) is the growth new tumor, (2) and even if not, how do we stop the progression of necrosis?  The only was to answer/address both is a craniotomy.  The answer could end up being that it's one or the other, it could also be a little of both.  If “just” necrosis, it sounds like there's no need for subsequent radiotherapy, if there is some new tumor growth, perhaps additional radiation could be used.
                         
                        Jmmm, it sounds like you and your husband have had quite the ride, too, glad to hear that things remain clear.  For both you and Shane, your necrosis experiences have gone on longer than I was expecting would be the norm, but after reconsidering the conversation I had with my doctor on Monday, I can see how my own journey could be the same.  While a second craniotomy is an option, I don't think anyone wants to rush to that, which means doing everything they can to use Decadron and potentially Avastin to manage, control, and hopefully stop it, with the craniotomy being sort of a last resort.
                         
                        So for now I'm on Decadron, orally 4-mg twice per day.  When I had the original met, it was 10-mg IV initially and the eventually quickly tapered down on to orally 4-mg thrice, then twice, then once per day after leaving the hospital.  From met diagnosis to last dose of Decadron was perhaps two weeks.  I tolerated it pretty well over that period of time.  They're talking about keeping me on it for the next six weeks until the next MRI, we’ll see how I do with it over a longer period of time.  I was on Keppra for anti-seizure with the original met, especially since I'd had what in hindsight were focal seizures in my arm in the weeks leading up to the diagnosis.  No plans for Keppra for now unless I experience anything similar.  It's only been three days, but I think I may be seeing some small improvement in the symptoms, but I can't say for sure yet.  With the original tumor, the Decadron had a pretty fast impact, albeit at the higher IV dosages.  Frankly, it could have been worse, it's been primarily a noticeable and persistent limp in my left leg along with fine motor control in my ankle and foot — funny story, before the leg surgery, as the weather warmed, I was wearing flip-flops and kept complaining to my wife that the darn left flip-flop kept flying off when I walked and I couldn't wear the things any more!  I thought I'd somehow stretched out three different pairs of flip-flops or my left foot had somehow shrunk, but it turns out it was likely the way my leg and foot were taking their stride, combined with the fact that I couldn't sort of shrug my toes into the left sandle to hold it in place. Again, hindsight is 20/20 — a warning to all, if you can't wear one flip-flop, it might be a brain tumor, or at least radiation necrosis 😉 
                         
                        And again, the plan is to wait 6 weeks until I see symptoms change, which, although frustrating, seems reasonable and is probably an appropriate first round of time to see how things progress, or don't.  We could easily find ourselves in 6 weeks starting another round of observation and waiting, we’ll see.  I also have my next PET scan around the same time, and sometimes (rarely, but sometimes), they can observe something on the PET that the brain MRI interprets differently, so there could be some supplementary information in there.
                         
                        I sometimes tire of the war/battle analogies, but at the risk of perpetuating it, after all I've been through, I'm hoping this is sort of a continuation of the “mop-up operation following the conclusion of combat operations”.  I was deflated at first when this leg tumor acted up, but once we realized it wasn't a new tumor but one that had been previously radiated and now needed further maintenance, it somehow made it easier.  I'm not trying to downplay necrosis, you've helped me understand that it's nothing to underestimate, only that it isn't representative of new disease progression.  Of course, my last PET showed a questionable spot on my distal ileum (end of the small intestine), but the follow-up scope didn't find anything, so hoping the next PET in six weeks shows no activity there (I've already been down the same road of a false GI finding on PET about two years ago).
                         
                        Thanks again for replying, I'm happy to hear you both fought through and are doing well with the necrosis after prolonged and challenging fights.  Any other insights anyone can offer, I'd appreciate them.  I'll update this thread, hopefully soon, if I start to see verifiable short-term improvement in my leg.  I've been going about my business best I can, working, going for regular (but gimpy) walks in the park, etc.
                         
                        Cheers,
                        Joe
                         
                        • June 20, 2014 at 4:11 am
                        RJoeyB
                        Participant
                          Thanks for your responses, I really appreciate your taking the time to read through my long post — there was a lot to explain and I wanted to make sure I covered everything relevant to this brain met.  Like many of you, I think my entire diagnosis to present story could fill a volume.  Anyway, your replies are spot on with the kind of similar experiences I’m hoping to hear about (and if anyone else managed to make it through my post, I'd love to hear your experiences, too).
                           
                          Shane, the cognitive impact sounds like it was tough.  Congratulations on the hard work to get back what's yours!  You make an interesting observation about necrosis and tumor having much in common, even though we tend to think of the malignant tumor being much more dangerous, necrosis can have just as much an impact.  (And can we do something about the term “necrosis”?  Every time I hear it, it makes me think of some rotting flesh zombie thing.)  To answer some of your follow-ups and share a little more of what I've learned in the past couple of days…  yes, a second craniotomy would be an option for me if needed.  I don't relish the idea, but without trying to be blasé about it, been there done that — as having a hole drilled into my head and then my brain sliced up can go, I think it went as well as it could have.  An awake craniotomy is frightening, but not necessary in my case.  
                           
                          My impression from my radiation oncologist, who as I mentioned before I trust a great deal, along with some reading I've done, is that necrosis can “settle down” or be persistent in its progression.  As with any scar tissue, it forms, inflames, and then should start to “resolve”.  Whether a scar on the skin or one in an organ or bone.  As it inflames, sometimes a steroid is needed to manage the impact of the inflammation — in the case of the brain, that's the edema.  If the scar tissue continues to expand, sometimes Avastin can slow and stop that growth.  However, if the steroids and/or Avastin (or any other medications) fail to help, them we’re left with two conundrums:  (1) is the growth new tumor, (2) and even if not, how do we stop the progression of necrosis?  The only was to answer/address both is a craniotomy.  The answer could end up being that it's one or the other, it could also be a little of both.  If “just” necrosis, it sounds like there's no need for subsequent radiotherapy, if there is some new tumor growth, perhaps additional radiation could be used.
                           
                          Jmmm, it sounds like you and your husband have had quite the ride, too, glad to hear that things remain clear.  For both you and Shane, your necrosis experiences have gone on longer than I was expecting would be the norm, but after reconsidering the conversation I had with my doctor on Monday, I can see how my own journey could be the same.  While a second craniotomy is an option, I don't think anyone wants to rush to that, which means doing everything they can to use Decadron and potentially Avastin to manage, control, and hopefully stop it, with the craniotomy being sort of a last resort.
                           
                          So for now I'm on Decadron, orally 4-mg twice per day.  When I had the original met, it was 10-mg IV initially and the eventually quickly tapered down on to orally 4-mg thrice, then twice, then once per day after leaving the hospital.  From met diagnosis to last dose of Decadron was perhaps two weeks.  I tolerated it pretty well over that period of time.  They're talking about keeping me on it for the next six weeks until the next MRI, we’ll see how I do with it over a longer period of time.  I was on Keppra for anti-seizure with the original met, especially since I'd had what in hindsight were focal seizures in my arm in the weeks leading up to the diagnosis.  No plans for Keppra for now unless I experience anything similar.  It's only been three days, but I think I may be seeing some small improvement in the symptoms, but I can't say for sure yet.  With the original tumor, the Decadron had a pretty fast impact, albeit at the higher IV dosages.  Frankly, it could have been worse, it's been primarily a noticeable and persistent limp in my left leg along with fine motor control in my ankle and foot — funny story, before the leg surgery, as the weather warmed, I was wearing flip-flops and kept complaining to my wife that the darn left flip-flop kept flying off when I walked and I couldn't wear the things any more!  I thought I'd somehow stretched out three different pairs of flip-flops or my left foot had somehow shrunk, but it turns out it was likely the way my leg and foot were taking their stride, combined with the fact that I couldn't sort of shrug my toes into the left sandle to hold it in place. Again, hindsight is 20/20 — a warning to all, if you can't wear one flip-flop, it might be a brain tumor, or at least radiation necrosis 😉 
                           
                          And again, the plan is to wait 6 weeks until I see symptoms change, which, although frustrating, seems reasonable and is probably an appropriate first round of time to see how things progress, or don't.  We could easily find ourselves in 6 weeks starting another round of observation and waiting, we’ll see.  I also have my next PET scan around the same time, and sometimes (rarely, but sometimes), they can observe something on the PET that the brain MRI interprets differently, so there could be some supplementary information in there.
                           
                          I sometimes tire of the war/battle analogies, but at the risk of perpetuating it, after all I've been through, I'm hoping this is sort of a continuation of the “mop-up operation following the conclusion of combat operations”.  I was deflated at first when this leg tumor acted up, but once we realized it wasn't a new tumor but one that had been previously radiated and now needed further maintenance, it somehow made it easier.  I'm not trying to downplay necrosis, you've helped me understand that it's nothing to underestimate, only that it isn't representative of new disease progression.  Of course, my last PET showed a questionable spot on my distal ileum (end of the small intestine), but the follow-up scope didn't find anything, so hoping the next PET in six weeks shows no activity there (I've already been down the same road of a false GI finding on PET about two years ago).
                           
                          Thanks again for replying, I'm happy to hear you both fought through and are doing well with the necrosis after prolonged and challenging fights.  Any other insights anyone can offer, I'd appreciate them.  I'll update this thread, hopefully soon, if I start to see verifiable short-term improvement in my leg.  I've been going about my business best I can, working, going for regular (but gimpy) walks in the park, etc.
                           
                          Cheers,
                          Joe
                           
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