› Forums › General Melanoma Community › Scan results good and bad
- This topic has 36 replies, 7 voices, and was last updated 9 years, 11 months ago by
Scooby123.
- Post
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- March 24, 2016 at 12:39 pm
Well after waiting 4 weeks for results my results was liver , lungs still stable but found 4 MM. spot on brain.
going to have radiotherapy next week to treat it., but no other treatment . I think due to my lungs liver stable from ippi, and they treat head different .
Please advice , experience on head tumours and radiotherapy treatment. Been told cannot drive, was planning a holiday with my daughter before she goes to uni in September.
keep well all
scooby123❤️
- Replies
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- March 24, 2016 at 3:58 pm
Sorry to hear the news Scooby, you're amazing just to be able to wait that long time for the results. I know you will get lots of good advice on here.
Sending good thoughts your way,
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- March 24, 2016 at 3:58 pm
Sorry to hear the news Scooby, you're amazing just to be able to wait that long time for the results. I know you will get lots of good advice on here.
Sending good thoughts your way,
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- March 24, 2016 at 3:58 pm
Sorry to hear the news Scooby, you're amazing just to be able to wait that long time for the results. I know you will get lots of good advice on here.
Sending good thoughts your way,
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- March 24, 2016 at 4:13 pm
So sorry you are dealing with that, Scooby. However, many of us here have been there done that. I had the halo placed with screws (now THAT part was NOT fun) for SRS to a brain met in 2010…followed within days by surgery to remove the upper lobe of my lung…but…I'm still here!!! I have a silly rendition of the process on the beginning of my blog. I knew it was possible I could be placed on anti-seizure meds post procedure…but my doc did not do it. And I never had any problems. Did have to be on large doses of steriods to stave off swelling though. I was limited in driving for a bit….though I can't specifically remember the time-frame now. As to the screws for the halo….many places use a mask now…so it is possible you can do that with much less torture and equally good effect. I am of course assuming that your are doing SRS….reather than WBR?????
Many, many studies confirm that radiation combined with immunotherapy has a positive synergystic effect. My blog has innumerable articles re brain mets as well as radiation. Here are two that cover a good deal:
This one has many links to other articles within it: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html
We also know that BRAFi as well as immunotherapy can work on brain mets (not always…sadly). I would certainly be talking with my docs about adding an additional systemic therapy if possible. I wish you my best. Celeste
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- March 24, 2016 at 4:45 pm
Thanks guys I phoned the hospital to find out what the process is and I am having gamaknife one dose to area unless when they scan me it is worse . I am scared nervous but I was told it is 4 MM. last scan so he said small . So I am booked next week to have it done . I was unsure on if I have got a brain met then stable eles where does that mean ippi not working anymore. I finished ippi last June 2015 not been on treatment since. But he is just treating the brain now . Not starting me on kedruda .
scooby123❤️
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- March 24, 2016 at 7:00 pm
4MM is small and gamma knife is an easy "in and out" procedure. I do recall from someone else's posts that the UK has unreasonable driving restrictions (in reality, you'd be fine to drive the next day). I agree that I would push for another systemic treatment. I'd also push for continuing brain MRIs at reasonably close intervals (e.g., every 8-12 weeks). Don't mess around with the brain.
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- March 24, 2016 at 7:00 pm
4MM is small and gamma knife is an easy "in and out" procedure. I do recall from someone else's posts that the UK has unreasonable driving restrictions (in reality, you'd be fine to drive the next day). I agree that I would push for another systemic treatment. I'd also push for continuing brain MRIs at reasonably close intervals (e.g., every 8-12 weeks). Don't mess around with the brain.
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- March 24, 2016 at 8:17 pm
Sorry for this little setback Scooby. I'll also second Mat's suggestion for a systemic treatment. Keytruda or Opdivo would be great but even a second go of Yervoy would be better than nothing. It obviously has had some benefit for you. Not sure how the process works in the UK but is there anyway to appeal the decision not to do systemic treatment?
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- March 24, 2016 at 8:17 pm
Sorry for this little setback Scooby. I'll also second Mat's suggestion for a systemic treatment. Keytruda or Opdivo would be great but even a second go of Yervoy would be better than nothing. It obviously has had some benefit for you. Not sure how the process works in the UK but is there anyway to appeal the decision not to do systemic treatment?
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- March 24, 2016 at 9:17 pm
Hi brain hope you well. I think the decision was made to do gramma knife and not go on to keydruda due to all other tumours are stable from last scan. Being its 4mm which he said is small gramma knife should take care of it.
Thanks brain
scooby123❤️
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- March 24, 2016 at 9:17 pm
Hi brain hope you well. I think the decision was made to do gramma knife and not go on to keydruda due to all other tumours are stable from last scan. Being its 4mm which he said is small gramma knife should take care of it.
Thanks brain
scooby123❤️
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- March 24, 2016 at 9:17 pm
Hi brain hope you well. I think the decision was made to do gramma knife and not go on to keydruda due to all other tumours are stable from last scan. Being its 4mm which he said is small gramma knife should take care of it.
Thanks brain
scooby123❤️
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- March 24, 2016 at 9:18 pm
Hi brain hope you well. I think the decision was made to do gramma knife and not go on to keydruda due to all other tumours are stable from last scan. Being its 4mm which he said is small gramma knife should take care of it.
Thanks brain
scooby123❤️
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- March 24, 2016 at 9:18 pm
Hi brain hope you well. I think the decision was made to do gramma knife and not go on to keydruda due to all other tumours are stable from last scan. Being its 4mm which he said is small gramma knife should take care of it.
Thanks brain
scooby123❤️
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- March 24, 2016 at 9:18 pm
Hi brain hope you well. I think the decision was made to do gramma knife and not go on to keydruda due to all other tumours are stable from last scan. Being its 4mm which he said is small gramma knife should take care of it.
Thanks brain
scooby123❤️
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- March 24, 2016 at 8:17 pm
Sorry for this little setback Scooby. I'll also second Mat's suggestion for a systemic treatment. Keytruda or Opdivo would be great but even a second go of Yervoy would be better than nothing. It obviously has had some benefit for you. Not sure how the process works in the UK but is there anyway to appeal the decision not to do systemic treatment?
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- March 25, 2016 at 3:43 am
Hi mat,
my 18 yr old son has a very heavy tumor load everywhere but brain as far as we know. They are stopping keytruda(didn't work) and offering Mek/Taflinar combo or ipi/Taflinar combo in a trial. I will research this trial but how did the combo work for you?
Hope all is okay,
kerri
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- March 25, 2016 at 3:43 am
Hi mat,
my 18 yr old son has a very heavy tumor load everywhere but brain as far as we know. They are stopping keytruda(didn't work) and offering Mek/Taflinar combo or ipi/Taflinar combo in a trial. I will research this trial but how did the combo work for you?
Hope all is okay,
kerri
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- March 25, 2016 at 8:29 am
Kerri, you can search my early posts starting in August 2013. The Tafinlar-Mekinist combo saved my life. I was able to ride it for 18 months with minimal side effects. I was also able to come back to it briefly for a second run down the road. Miracle drugs as far as I'm concerned. The only downside is that they are not a permanent solution for most–more of a bridge, but it can be a long bridge. Good luck.
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- March 25, 2016 at 8:29 am
Kerri, you can search my early posts starting in August 2013. The Tafinlar-Mekinist combo saved my life. I was able to ride it for 18 months with minimal side effects. I was also able to come back to it briefly for a second run down the road. Miracle drugs as far as I'm concerned. The only downside is that they are not a permanent solution for most–more of a bridge, but it can be a long bridge. Good luck.
-
- March 25, 2016 at 8:29 am
Kerri, you can search my early posts starting in August 2013. The Tafinlar-Mekinist combo saved my life. I was able to ride it for 18 months with minimal side effects. I was also able to come back to it briefly for a second run down the road. Miracle drugs as far as I'm concerned. The only downside is that they are not a permanent solution for most–more of a bridge, but it can be a long bridge. Good luck.
-
- March 25, 2016 at 3:43 am
Hi mat,
my 18 yr old son has a very heavy tumor load everywhere but brain as far as we know. They are stopping keytruda(didn't work) and offering Mek/Taflinar combo or ipi/Taflinar combo in a trial. I will research this trial but how did the combo work for you?
Hope all is okay,
kerri
-
- March 24, 2016 at 7:00 pm
4MM is small and gamma knife is an easy "in and out" procedure. I do recall from someone else's posts that the UK has unreasonable driving restrictions (in reality, you'd be fine to drive the next day). I agree that I would push for another systemic treatment. I'd also push for continuing brain MRIs at reasonably close intervals (e.g., every 8-12 weeks). Don't mess around with the brain.
-
- March 24, 2016 at 4:45 pm
Thanks guys I phoned the hospital to find out what the process is and I am having gamaknife one dose to area unless when they scan me it is worse . I am scared nervous but I was told it is 4 MM. last scan so he said small . So I am booked next week to have it done . I was unsure on if I have got a brain met then stable eles where does that mean ippi not working anymore. I finished ippi last June 2015 not been on treatment since. But he is just treating the brain now . Not starting me on kedruda .
scooby123❤️
-
- March 24, 2016 at 4:45 pm
Thanks guys I phoned the hospital to find out what the process is and I am having gamaknife one dose to area unless when they scan me it is worse . I am scared nervous but I was told it is 4 MM. last scan so he said small . So I am booked next week to have it done . I was unsure on if I have got a brain met then stable eles where does that mean ippi not working anymore. I finished ippi last June 2015 not been on treatment since. But he is just treating the brain now . Not starting me on kedruda .
scooby123❤️
-
- March 24, 2016 at 4:13 pm
So sorry you are dealing with that, Scooby. However, many of us here have been there done that. I had the halo placed with screws (now THAT part was NOT fun) for SRS to a brain met in 2010…followed within days by surgery to remove the upper lobe of my lung…but…I'm still here!!! I have a silly rendition of the process on the beginning of my blog. I knew it was possible I could be placed on anti-seizure meds post procedure…but my doc did not do it. And I never had any problems. Did have to be on large doses of steriods to stave off swelling though. I was limited in driving for a bit….though I can't specifically remember the time-frame now. As to the screws for the halo….many places use a mask now…so it is possible you can do that with much less torture and equally good effect. I am of course assuming that your are doing SRS….reather than WBR?????
Many, many studies confirm that radiation combined with immunotherapy has a positive synergystic effect. My blog has innumerable articles re brain mets as well as radiation. Here are two that cover a good deal:
This one has many links to other articles within it: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html
We also know that BRAFi as well as immunotherapy can work on brain mets (not always…sadly). I would certainly be talking with my docs about adding an additional systemic therapy if possible. I wish you my best. Celeste
-
- March 24, 2016 at 4:13 pm
So sorry you are dealing with that, Scooby. However, many of us here have been there done that. I had the halo placed with screws (now THAT part was NOT fun) for SRS to a brain met in 2010…followed within days by surgery to remove the upper lobe of my lung…but…I'm still here!!! I have a silly rendition of the process on the beginning of my blog. I knew it was possible I could be placed on anti-seizure meds post procedure…but my doc did not do it. And I never had any problems. Did have to be on large doses of steriods to stave off swelling though. I was limited in driving for a bit….though I can't specifically remember the time-frame now. As to the screws for the halo….many places use a mask now…so it is possible you can do that with much less torture and equally good effect. I am of course assuming that your are doing SRS….reather than WBR?????
Many, many studies confirm that radiation combined with immunotherapy has a positive synergystic effect. My blog has innumerable articles re brain mets as well as radiation. Here are two that cover a good deal:
This one has many links to other articles within it: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html
We also know that BRAFi as well as immunotherapy can work on brain mets (not always…sadly). I would certainly be talking with my docs about adding an additional systemic therapy if possible. I wish you my best. Celeste
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