› Forums › Cutaneous Melanoma Community › Another radiation necrosis update
- This topic has 15 replies, 3 voices, and was last updated 9 years, 6 months ago by
Bubbles.
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- October 19, 2014 at 7:58 pm
(Following up to my last radiation necrosis post a couple of weeks ago here:
This past week I had my scheduled three-month full-body PET/CT for continued monitoring but also to possibly be used as part of the continuing assessment in determining how to proceed on the question of radiation necrosis vs. tumor regrowth in my brain. Physically, I think I've continued to improve slightly, perhaps starting to plateau over the last week. I still need a cane to get around outside the house, but I'm mostly functional within limits again and we haven't had to increase the dexamethasone dose again.The full-body portion of the PET was good. No sign of any new metastatic disease elsewhere in the body. The small lung met that was radiated (SBRT) in February didn't even make the radiologist's report and in reviewing the images, neither my radiation or medical oncologists can see it. An area in my small bowel that's lit up on my past two scans (and periodically on prior scans over the years), but which we were pretty sure was transient GI inflammation near the site of my small bowel resection over three years ago, also didn't light at all. A spot adjacent to the surgical site from May in my left tibia was noted in the report with a recommendation for follow-up with MRI, but recognizing that there was recent surgery and that the adjacency to the bone cement may make it challenging for MRI to differentiate. Knowing my orthopedic oncologist (he's operated on me three times: left humerus, femur, and tibia) and based on numerous prior conversations, the fact that this area is lighting up on PET likely won't be a concern — in the past he's said that there can be inflammation for 6-12 months after a bone surgery. So we'll check in with him and it's possible he'll say to go ahead with the MRI, but I'm guessing not at this point, which I'm comfortable with. We see him in a few weeks for a six-month post surgery follow-up anyway.(The only other items on the radiology report were cutaneous areas on my upper inner right thigh and bottom of my right foot and the only reason I note them here is to point out the finicky nature of PET: both areas I told my wife the day before, "Don't be surprised if these light up on the PET." The area near my groin is an infected pore or hair follicle, which I've been prone to since being on the steroid (reduced resistance to infection + increased sweating + weight gain + "chub rub"). And the bottom of my right foot has been a mess of blister, irritated, and dry skin since that leg and foot has been doing a lot of work with my messed up gait over the last couple of months. The radiologist doesn't know any of these when reviewing the images, so they make the report, and then my medical oncologist has to "correlate".)Which brings us to the big question, what about the radiation necrosis vs. tumor regrowth? Of course, there is nothing close to an absolute answer without pathology, but both my radiation oncologist and neurosurgeon were influenced sufficiently to think we should continue down the path of this being RN. First, while the PET isn't all too helpful in looking for brain metastases (remembering of course that the brain already lights pretty brightly on PET making tumor difficult to discern from normal activity), the fact that there was nothing so bright to stand out at all, indicating something more significant, is something they wanted to see. My radiation oncologist also requested that radiology perform an "image fusion" of my brain MRI from two weeks prior with the brain portion of the PET/CT, and that fused image didn't show anything that stood out either. Finally, while the steroid would treat either RN or tumor, they are encouraged that I've seen motor control improvement with the steroid. The plan then is to continue for now managing this as RN with close monitoring, meaning another MRI in probably about a month. In the meantime, we'll stay at the current steroid dose unless symptoms again worsen. The goal of the steroid won't be to completely resolve the motor control symptoms (and it doesn't treat the underlying necrosis at all), only to keep me functional while minimizing the long-term dangers of prolonged steroid usage. I'm told and have read that more often than not, RN can resolve on its own over time, so for now, the approach they want to take is to balance motor control issues with steroid effects and closely monitor as this plays out over the coming few months. Other options were discussed, including Avastin, surgery, and I brought up hyperbaric oxygen therapy (HBOT), but the consensus is that we're not there yet with any of those. Any changes on scans or symptomatically would put anything back on the table, of course.It's as frustrating as it sounds, but I'm trying to be patient and live with the continued ambiguity, both skills I've had to work on over these past few years. More to follow soon, thanks for reading.Best,Joe
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- October 19, 2014 at 8:33 pm
Hey Joe,
I know you're sick and tired of being "sick and tired"….but overall that sounds like things are finally looking up. Red herrings are always issues with scans of any sort, but it seems that you have yours pretty much sorted out!!! Hope all "things" (both radiation necrosis and tumors!!!) continue to fade away and your energy and function continue to increase! Hang in there!! Celeste
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- October 21, 2014 at 12:48 am
Thanks Celeste. I know it can be a common cancer experience, with treatment side effects, either early or late onset, being as challenging as the disease itself. I's still odd to have been through so much in four years, but my last actual new met is almost two years ago — everything since has been either "cleanup", finishing out treatments, or this late onset RN. I went from feeling better physically than I had last spring to barely being able to walk a few weeks ago… I just want to go for a good run! 😉
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- October 21, 2014 at 12:48 am
Thanks Celeste. I know it can be a common cancer experience, with treatment side effects, either early or late onset, being as challenging as the disease itself. I's still odd to have been through so much in four years, but my last actual new met is almost two years ago — everything since has been either "cleanup", finishing out treatments, or this late onset RN. I went from feeling better physically than I had last spring to barely being able to walk a few weeks ago… I just want to go for a good run! 😉
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- October 21, 2014 at 12:48 am
Thanks Celeste. I know it can be a common cancer experience, with treatment side effects, either early or late onset, being as challenging as the disease itself. I's still odd to have been through so much in four years, but my last actual new met is almost two years ago — everything since has been either "cleanup", finishing out treatments, or this late onset RN. I went from feeling better physically than I had last spring to barely being able to walk a few weeks ago… I just want to go for a good run! 😉
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- October 19, 2014 at 8:33 pm
Hey Joe,
I know you're sick and tired of being "sick and tired"….but overall that sounds like things are finally looking up. Red herrings are always issues with scans of any sort, but it seems that you have yours pretty much sorted out!!! Hope all "things" (both radiation necrosis and tumors!!!) continue to fade away and your energy and function continue to increase! Hang in there!! Celeste
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- October 19, 2014 at 8:33 pm
Hey Joe,
I know you're sick and tired of being "sick and tired"….but overall that sounds like things are finally looking up. Red herrings are always issues with scans of any sort, but it seems that you have yours pretty much sorted out!!! Hope all "things" (both radiation necrosis and tumors!!!) continue to fade away and your energy and function continue to increase! Hang in there!! Celeste
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- October 20, 2014 at 12:41 am
Good to hear you are getting more functional. It sounds like you have a good plan A with the steroid and healing itself and several good possible plan Bs if needed. Good luck Joe.
Artie
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- October 21, 2014 at 12:53 am
Thank you Artie… as you know from your own experiences, it's a maze, trying to understand everything to be ready when we reach the inevitable forks in the path. Hope things are going well with your own plan — will be on the lookout for your next update.
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- October 21, 2014 at 12:53 am
Thank you Artie… as you know from your own experiences, it's a maze, trying to understand everything to be ready when we reach the inevitable forks in the path. Hope things are going well with your own plan — will be on the lookout for your next update.
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- October 21, 2014 at 12:53 am
Thank you Artie… as you know from your own experiences, it's a maze, trying to understand everything to be ready when we reach the inevitable forks in the path. Hope things are going well with your own plan — will be on the lookout for your next update.
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- October 20, 2014 at 12:41 am
Good to hear you are getting more functional. It sounds like you have a good plan A with the steroid and healing itself and several good possible plan Bs if needed. Good luck Joe.
Artie
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- October 20, 2014 at 12:41 am
Good to hear you are getting more functional. It sounds like you have a good plan A with the steroid and healing itself and several good possible plan Bs if needed. Good luck Joe.
Artie
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