› Forums › General Melanoma Community › So long NED, Mel is back! Radiation Necrosis head fake!
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- February 4, 2015 at 10:41 pm
Hi, I have been doing a lot of looking on this site and the web to get a better understanding of Radiation Necrosis vs Melanoma issues. I am much appreciative of the great info shared by other warriors in this battle. JoeyB had some really helpful info on RN that I thought I was going through. Hoping to hear his recovery is underway. My situation just took a different direction today after meetings at MSK in NYC. Since my stage 4 diagnosis in zag 2011- two Yervoy series of 4 infusions, a bunch of SRS radiation sessions and a tumors removed from lower left lung lobe in August '11 and then the temporal lobe in Sept '13 was feeling pretty darned optimistic that I had the beast beaten back. Perhaps I am overly optimistic or just fooling myself but it's just the way I try to roll in life in general. My last SRS in June 2014 for a new tumor on the brain dura seemed like the SRS worked as of my Nov 2014 scan. Shortly after my clear Dec '14 body scan I began getting dull headaches which progressed to more painful ones signaling something was amiss. I went in on Jan 27th for a brain MRI scan and Drs alerted me that it appears that the radiation necrosis call made in Nov was in fact more likely a melanoma recurrence and they jointly decided ( my onc, radiation onc and surgeon) that given my tumors resistance to the usually effective SRS they want to get aggressive and remove it..
I am bummed a bit that this isn't just some delayed radiation related swelling that steroids couldn't just solve but glad that they are deciding to get aggressive and go for a surgical solution. My recovery from the first craniotomy was really good so I am hopeful that the second time around is as fast. I am scheduled to get my surgery on Feb 10th. Guess I'll be sitting down with the kids (16 and 14) and gingerly walking them through an edited version of what's going to happen. They were only 13 and 11 when I had the first brain surgery so I just told them I had a pressure spot I needed to get removed and I was hoping this would all just go away. I didn't want to scare them that young but I think I'd be remiss if I didn't give them better direction this go round. Any suggestions on that discussion would be welcome.
I guess this recurrence means my hopes of being a Yervoy responder might be out the window? Maybe so but I got lots of fight left in me to figure out my plan of action. Hopefully next weeks surgery buys me lots of time( forever hopefully) to think this through.
Best of luck to everybody as we all face our respective challenges!
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- February 5, 2015 at 11:27 am
Hi
I'm sorry to hear that you're facing another craniotomy due to a recurrence. I also hope that it will be successful and you'll be through another hurdle in your journey.
In response to your question about how to talk to your teenaged children about the situation; I am a Clinical Social Worker and my husband, Pete, has stage 4 melanoma that also spread to his brain. I would suggest that you speak honestly and simply to your children. I'm not sure what information you've already given them about your disease, but I would encourage you to use the words "cancer" and "melanoma" and that it has recurred. I would emphasize the enormous gains that are being made in melanoma research and treatment and the excellence of care that you're receiving at your cancer centre. If and when they ask if you are going to die, it's very important not to promise something that you cannot control. I think saying something like, "no one knows when they will die, and I'm no different. But, I can assure you that I have a team of experts treating me and there are people who live for many years with advanced melanoma". It's a scary reality, but your kids are old enough to process the truth. My kids were 16 and 18 when my husband was first diagnosed, by the way. It's a tough conversation to have, but allow them to ask any questions that they have and let them cry, if they need to, without feeling that you have to fix everything. Ultimately, your journey includes your whole family, as much as you may wish to protect them.
I hope that's helpful and I wish you all the best.
Yasmin
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- February 5, 2015 at 11:27 am
Hi
I'm sorry to hear that you're facing another craniotomy due to a recurrence. I also hope that it will be successful and you'll be through another hurdle in your journey.
In response to your question about how to talk to your teenaged children about the situation; I am a Clinical Social Worker and my husband, Pete, has stage 4 melanoma that also spread to his brain. I would suggest that you speak honestly and simply to your children. I'm not sure what information you've already given them about your disease, but I would encourage you to use the words "cancer" and "melanoma" and that it has recurred. I would emphasize the enormous gains that are being made in melanoma research and treatment and the excellence of care that you're receiving at your cancer centre. If and when they ask if you are going to die, it's very important not to promise something that you cannot control. I think saying something like, "no one knows when they will die, and I'm no different. But, I can assure you that I have a team of experts treating me and there are people who live for many years with advanced melanoma". It's a scary reality, but your kids are old enough to process the truth. My kids were 16 and 18 when my husband was first diagnosed, by the way. It's a tough conversation to have, but allow them to ask any questions that they have and let them cry, if they need to, without feeling that you have to fix everything. Ultimately, your journey includes your whole family, as much as you may wish to protect them.
I hope that's helpful and I wish you all the best.
Yasmin
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- February 5, 2015 at 2:30 pm
Very good advice here by Yasmin on how to communicate this with your children – I am in a similar boat and have 3 kids (age 5, 12, and 13). We spoke openly to them about the recurrence that put me at stage 4 a little over a year ago and the surgery that followed. I have not been asked the "are you going to die" question, but I think Yasmin is spot on here. I think my response would be something like "we all die someday, but today is not my day."
Keep up the optimistic attitude. This is especially important with kids – showing optimism and courage in how we face the challenges life throws at us teaches kids an important lesson.
Kevin
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- February 5, 2015 at 5:02 pm
Hi,
Sorry to hear about your recurrence. I had my first craniotomy in Nov 2012. In June 2013 I had my second craniotomy due to a recurrence. My surgeon left Gliadel wafers in the cavity and I have not had another brain met since June 2013. The wafers are meant for gliomas but my team (and I) wanted to be aggressive so my doc used them. Maybe something for you to consider? I'm not sure how often they are used with melanoma mets. I thnk my doc said I was his ninth patient with melanoma?
Good luck to you!!
Brendan
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- February 5, 2015 at 5:02 pm
Hi,
Sorry to hear about your recurrence. I had my first craniotomy in Nov 2012. In June 2013 I had my second craniotomy due to a recurrence. My surgeon left Gliadel wafers in the cavity and I have not had another brain met since June 2013. The wafers are meant for gliomas but my team (and I) wanted to be aggressive so my doc used them. Maybe something for you to consider? I'm not sure how often they are used with melanoma mets. I thnk my doc said I was his ninth patient with melanoma?
Good luck to you!!
Brendan
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- February 5, 2015 at 5:02 pm
Hi,
Sorry to hear about your recurrence. I had my first craniotomy in Nov 2012. In June 2013 I had my second craniotomy due to a recurrence. My surgeon left Gliadel wafers in the cavity and I have not had another brain met since June 2013. The wafers are meant for gliomas but my team (and I) wanted to be aggressive so my doc used them. Maybe something for you to consider? I'm not sure how often they are used with melanoma mets. I thnk my doc said I was his ninth patient with melanoma?
Good luck to you!!
Brendan
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- February 5, 2015 at 2:30 pm
Very good advice here by Yasmin on how to communicate this with your children – I am in a similar boat and have 3 kids (age 5, 12, and 13). We spoke openly to them about the recurrence that put me at stage 4 a little over a year ago and the surgery that followed. I have not been asked the "are you going to die" question, but I think Yasmin is spot on here. I think my response would be something like "we all die someday, but today is not my day."
Keep up the optimistic attitude. This is especially important with kids – showing optimism and courage in how we face the challenges life throws at us teaches kids an important lesson.
Kevin
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- February 5, 2015 at 2:30 pm
Very good advice here by Yasmin on how to communicate this with your children – I am in a similar boat and have 3 kids (age 5, 12, and 13). We spoke openly to them about the recurrence that put me at stage 4 a little over a year ago and the surgery that followed. I have not been asked the "are you going to die" question, but I think Yasmin is spot on here. I think my response would be something like "we all die someday, but today is not my day."
Keep up the optimistic attitude. This is especially important with kids – showing optimism and courage in how we face the challenges life throws at us teaches kids an important lesson.
Kevin
-
- February 5, 2015 at 11:27 am
Hi
I'm sorry to hear that you're facing another craniotomy due to a recurrence. I also hope that it will be successful and you'll be through another hurdle in your journey.
In response to your question about how to talk to your teenaged children about the situation; I am a Clinical Social Worker and my husband, Pete, has stage 4 melanoma that also spread to his brain. I would suggest that you speak honestly and simply to your children. I'm not sure what information you've already given them about your disease, but I would encourage you to use the words "cancer" and "melanoma" and that it has recurred. I would emphasize the enormous gains that are being made in melanoma research and treatment and the excellence of care that you're receiving at your cancer centre. If and when they ask if you are going to die, it's very important not to promise something that you cannot control. I think saying something like, "no one knows when they will die, and I'm no different. But, I can assure you that I have a team of experts treating me and there are people who live for many years with advanced melanoma". It's a scary reality, but your kids are old enough to process the truth. My kids were 16 and 18 when my husband was first diagnosed, by the way. It's a tough conversation to have, but allow them to ask any questions that they have and let them cry, if they need to, without feeling that you have to fix everything. Ultimately, your journey includes your whole family, as much as you may wish to protect them.
I hope that's helpful and I wish you all the best.
Yasmin
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- February 6, 2015 at 1:20 pm
Thanks everybody!
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- February 6, 2015 at 1:20 pm
Thanks everybody!
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- February 6, 2015 at 1:20 pm
Thanks everybody!
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- February 11, 2015 at 6:09 pm
Update:
Well. Another lesson learned. Never underestimate the aggressiveness of this disease. It appears that the change from the Nov clear head MRI to the Jan 27th was pretty extreme. Had the second temporal lobe resection yesterday and on the mend at MSK ICU today. Surgeon came by on rounds and said there was def the expected Edema but also there was quite a bit of new Melanoma tumor. Got lots out but a little sticker stuff left around veins, etc. The Radiation Onc, Surgeon and Main Onc have huddled and it looks like I will likely be going down the new plan B route of more radiation followed by hopefully starting an Anti Pd-1 regimen. I don't know much about Anti Pd-1 results on brain mets but will start researching asap and welcome any direction.
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- February 11, 2015 at 6:09 pm
Update:
Well. Another lesson learned. Never underestimate the aggressiveness of this disease. It appears that the change from the Nov clear head MRI to the Jan 27th was pretty extreme. Had the second temporal lobe resection yesterday and on the mend at MSK ICU today. Surgeon came by on rounds and said there was def the expected Edema but also there was quite a bit of new Melanoma tumor. Got lots out but a little sticker stuff left around veins, etc. The Radiation Onc, Surgeon and Main Onc have huddled and it looks like I will likely be going down the new plan B route of more radiation followed by hopefully starting an Anti Pd-1 regimen. I don't know much about Anti Pd-1 results on brain mets but will start researching asap and welcome any direction.
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- February 11, 2015 at 6:09 pm
Update:
Well. Another lesson learned. Never underestimate the aggressiveness of this disease. It appears that the change from the Nov clear head MRI to the Jan 27th was pretty extreme. Had the second temporal lobe resection yesterday and on the mend at MSK ICU today. Surgeon came by on rounds and said there was def the expected Edema but also there was quite a bit of new Melanoma tumor. Got lots out but a little sticker stuff left around veins, etc. The Radiation Onc, Surgeon and Main Onc have huddled and it looks like I will likely be going down the new plan B route of more radiation followed by hopefully starting an Anti Pd-1 regimen. I don't know much about Anti Pd-1 results on brain mets but will start researching asap and welcome any direction.
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- September 23, 2020 at 8:34 am
hope you beat it…I I am similar melanoma brain mets,craniotomy,srt,keytruda…then another craniotomy, turned out to be radiation necrosis(losing balance now)….I am hoping you beat the RN
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