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- This topic has 9 replies, 2 voices, and was last updated 14 years, 2 months ago by
Lisa13.
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- November 8, 2011 at 1:06 pm
First of all, I wish you the best of luck with your scans coming up. There may be incredible news that your tumours are shrinking.
First of all, I wish you the best of luck with your scans coming up. There may be incredible news that your tumours are shrinking.
I wanted to ask you about your brain met. Did you have the one remain in your brain because it was bleeding and when it stopped, two areas were gamma knifed? The reason I ask is because I decided against WBR right now. The radiologist suggested I wait 3 weeks, have another MRI to see if the blood is gone and then gamma kife both. He doesn't think they will grow much bigger in the next 3 weeks as they've been there for awhile and likely bled a week or 2 ago. They can't even see a tumour at all because of the blood, but they expect it's small like the other one. What were your Dr's thinking if your bleeding didn't stop??
It sucks that ipi worked so well on me, but I grew 2 small brain tumours sometime between the end of July and now. I'm still hoping that the army of lymphocytes can still crawl into my brain and stop anything further from growing for a long time.
I feel good things for you 🙂
Lisa
Stage 4 – 50% reduction in lung mets – most even disappeared – 2 may be inflammed
2 new brain mets since ipi, but nowhere else
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- November 9, 2011 at 4:47 am
Hey Lisa. I can't figure out how to email you directly on here!
When I went in June 22nd ish 2011, it was for my giant Melanoma tumor in my head that they wanted to immediately take out via Craniotomy. They also noticed the 2nd tumor, the size of a quarter, on the opposite side of my head, which they said they'd worry about later since it was small and not harming my functioning, etc.
All they ever told me, was that they would then treat the 2nd tumor & remains of giant tumor with Gamma Knife July 18th 2011. They just said they saw it had bled (which was probably from me flying on 6 different flights over a week's period, all of which made me throw up, and one time black out for an entire day (which is where they think it had bled at that point when I blacked out for an entire day – I remember 5 minutes from that day getting off the airplane).
They never mentioned, and I never asked either, about the bleeding if it covered it up, etc, as they never said anything to me about not being able to see the tumor, so it must have stayed clear looking. I have no clue how long blood in the brain stays "wet" and covers something or whatever, where it won't like dry out and clear out, or whatever terminology they use.
I don't think there's any harm hopefully in you waiting to get that other spot taken care of.
Nobody knows if these brain tumors grew due to Yervoy or before, but alot of us Stage IV Melanoma people know, that the Lung, Liver & Brain are like some of the top 3 places it likes to go. That's where all 3 of my spots happen to be! I just got sorta lucky my brain tumor grew so big that it impaired me to the point that I went and got tested, otherwise I could have had these spots for years and more would have grown and I would have been going down a quicker route to the end of the line.
Anxiously awaiting Dec. 2nd, seeing all my doctors that day.
I hope the Gamma Knife goes well, just try to stay calm, the nurses I had were so nice, it was just like getting a CT/MRI , just had a bit of poking due to the head brace!
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- November 9, 2011 at 4:47 am
Hey Lisa. I can't figure out how to email you directly on here!
When I went in June 22nd ish 2011, it was for my giant Melanoma tumor in my head that they wanted to immediately take out via Craniotomy. They also noticed the 2nd tumor, the size of a quarter, on the opposite side of my head, which they said they'd worry about later since it was small and not harming my functioning, etc.
All they ever told me, was that they would then treat the 2nd tumor & remains of giant tumor with Gamma Knife July 18th 2011. They just said they saw it had bled (which was probably from me flying on 6 different flights over a week's period, all of which made me throw up, and one time black out for an entire day (which is where they think it had bled at that point when I blacked out for an entire day – I remember 5 minutes from that day getting off the airplane).
They never mentioned, and I never asked either, about the bleeding if it covered it up, etc, as they never said anything to me about not being able to see the tumor, so it must have stayed clear looking. I have no clue how long blood in the brain stays "wet" and covers something or whatever, where it won't like dry out and clear out, or whatever terminology they use.
I don't think there's any harm hopefully in you waiting to get that other spot taken care of.
Nobody knows if these brain tumors grew due to Yervoy or before, but alot of us Stage IV Melanoma people know, that the Lung, Liver & Brain are like some of the top 3 places it likes to go. That's where all 3 of my spots happen to be! I just got sorta lucky my brain tumor grew so big that it impaired me to the point that I went and got tested, otherwise I could have had these spots for years and more would have grown and I would have been going down a quicker route to the end of the line.
Anxiously awaiting Dec. 2nd, seeing all my doctors that day.
I hope the Gamma Knife goes well, just try to stay calm, the nurses I had were so nice, it was just like getting a CT/MRI , just had a bit of poking due to the head brace!
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- November 9, 2011 at 4:47 am
Hey Lisa. I can't figure out how to email you directly on here!
When I went in June 22nd ish 2011, it was for my giant Melanoma tumor in my head that they wanted to immediately take out via Craniotomy. They also noticed the 2nd tumor, the size of a quarter, on the opposite side of my head, which they said they'd worry about later since it was small and not harming my functioning, etc.
All they ever told me, was that they would then treat the 2nd tumor & remains of giant tumor with Gamma Knife July 18th 2011. They just said they saw it had bled (which was probably from me flying on 6 different flights over a week's period, all of which made me throw up, and one time black out for an entire day (which is where they think it had bled at that point when I blacked out for an entire day – I remember 5 minutes from that day getting off the airplane).
They never mentioned, and I never asked either, about the bleeding if it covered it up, etc, as they never said anything to me about not being able to see the tumor, so it must have stayed clear looking. I have no clue how long blood in the brain stays "wet" and covers something or whatever, where it won't like dry out and clear out, or whatever terminology they use.
I don't think there's any harm hopefully in you waiting to get that other spot taken care of.
Nobody knows if these brain tumors grew due to Yervoy or before, but alot of us Stage IV Melanoma people know, that the Lung, Liver & Brain are like some of the top 3 places it likes to go. That's where all 3 of my spots happen to be! I just got sorta lucky my brain tumor grew so big that it impaired me to the point that I went and got tested, otherwise I could have had these spots for years and more would have grown and I would have been going down a quicker route to the end of the line.
Anxiously awaiting Dec. 2nd, seeing all my doctors that day.
I hope the Gamma Knife goes well, just try to stay calm, the nurses I had were so nice, it was just like getting a CT/MRI , just had a bit of poking due to the head brace!
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- November 9, 2011 at 4:53 am
And don't forget, if IPI / Yervoy worked for you, they will continue to let you use that more spread out, won't they? My doctor mentioned if it works, they'll keep me on it over the next year, just spaced out. Sure hoping it does!
I hate that I can't edit my previous post, what I said about the darn Melanoma going to the brain, I hate that it has gone to your Brain at all, I meant to say though, that the Brain is one of the favorite places for it to go, so it's not a huge surprise to most Melanoma doctors that it went up there, as tiny specks could have been in there for a long time, just waiting to grow and finally did, so I was just saying they can't prove/disprove what caused them to grow up there.
Just hoping that you and I both and all the others can keep these damn Brain tumors away for a long time after our treatments!
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- November 9, 2011 at 8:07 pm
Thanks so much for sharing your story. They think the 1 met has bled and rather than being mostly blood, they think it's mainly tumour, so they want to so the gamma knife right away. I have no idea when they appeared as my bloodwork has been perfect for the past 3 months and nothing ever indicated my cancer was progressing. I'm very happy that my lung mets have shrunk by 50% and some have gone away. I just hope by the end of the month, they're still shrinking. Quite frankly, having melanoma in my lungs these past 10 months has been a walk in the park for me. Brain mets – whole different story! You just have to hope and pray it doesn't come back for a long time.
My Yervoy is over and I don't get any maintenance shots in this clinical trial. I'm sure if I was living in the states, I'd get more. The good news is, if I should ever grow cancer, I can continue to do it again. I might even ask/beg if they'll let me keep taking it. How does anybody know that it will kick it the long you continue doing it – especially if you're successful?? My Dr. said ipi allows the immune system to work hard for months and sometimes years, so even when you finish it, you don't have to worry it's not working anymore.
I wish you the best on your upcoming scans. I waited 2 weeks after my last infusion to get scanned and another one on November 30th. I never would have had the brain scan, if I didn't complain about some swollen neck I had. They found nothing in my neck, but did find 2 tumours. Thank God I asked!
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- November 9, 2011 at 8:07 pm
Thanks so much for sharing your story. They think the 1 met has bled and rather than being mostly blood, they think it's mainly tumour, so they want to so the gamma knife right away. I have no idea when they appeared as my bloodwork has been perfect for the past 3 months and nothing ever indicated my cancer was progressing. I'm very happy that my lung mets have shrunk by 50% and some have gone away. I just hope by the end of the month, they're still shrinking. Quite frankly, having melanoma in my lungs these past 10 months has been a walk in the park for me. Brain mets – whole different story! You just have to hope and pray it doesn't come back for a long time.
My Yervoy is over and I don't get any maintenance shots in this clinical trial. I'm sure if I was living in the states, I'd get more. The good news is, if I should ever grow cancer, I can continue to do it again. I might even ask/beg if they'll let me keep taking it. How does anybody know that it will kick it the long you continue doing it – especially if you're successful?? My Dr. said ipi allows the immune system to work hard for months and sometimes years, so even when you finish it, you don't have to worry it's not working anymore.
I wish you the best on your upcoming scans. I waited 2 weeks after my last infusion to get scanned and another one on November 30th. I never would have had the brain scan, if I didn't complain about some swollen neck I had. They found nothing in my neck, but did find 2 tumours. Thank God I asked!
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- November 9, 2011 at 8:07 pm
Thanks so much for sharing your story. They think the 1 met has bled and rather than being mostly blood, they think it's mainly tumour, so they want to so the gamma knife right away. I have no idea when they appeared as my bloodwork has been perfect for the past 3 months and nothing ever indicated my cancer was progressing. I'm very happy that my lung mets have shrunk by 50% and some have gone away. I just hope by the end of the month, they're still shrinking. Quite frankly, having melanoma in my lungs these past 10 months has been a walk in the park for me. Brain mets – whole different story! You just have to hope and pray it doesn't come back for a long time.
My Yervoy is over and I don't get any maintenance shots in this clinical trial. I'm sure if I was living in the states, I'd get more. The good news is, if I should ever grow cancer, I can continue to do it again. I might even ask/beg if they'll let me keep taking it. How does anybody know that it will kick it the long you continue doing it – especially if you're successful?? My Dr. said ipi allows the immune system to work hard for months and sometimes years, so even when you finish it, you don't have to worry it's not working anymore.
I wish you the best on your upcoming scans. I waited 2 weeks after my last infusion to get scanned and another one on November 30th. I never would have had the brain scan, if I didn't complain about some swollen neck I had. They found nothing in my neck, but did find 2 tumours. Thank God I asked!
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- November 9, 2011 at 4:53 am
And don't forget, if IPI / Yervoy worked for you, they will continue to let you use that more spread out, won't they? My doctor mentioned if it works, they'll keep me on it over the next year, just spaced out. Sure hoping it does!
I hate that I can't edit my previous post, what I said about the darn Melanoma going to the brain, I hate that it has gone to your Brain at all, I meant to say though, that the Brain is one of the favorite places for it to go, so it's not a huge surprise to most Melanoma doctors that it went up there, as tiny specks could have been in there for a long time, just waiting to grow and finally did, so I was just saying they can't prove/disprove what caused them to grow up there.
Just hoping that you and I both and all the others can keep these damn Brain tumors away for a long time after our treatments!
-
- November 9, 2011 at 4:53 am
And don't forget, if IPI / Yervoy worked for you, they will continue to let you use that more spread out, won't they? My doctor mentioned if it works, they'll keep me on it over the next year, just spaced out. Sure hoping it does!
I hate that I can't edit my previous post, what I said about the darn Melanoma going to the brain, I hate that it has gone to your Brain at all, I meant to say though, that the Brain is one of the favorite places for it to go, so it's not a huge surprise to most Melanoma doctors that it went up there, as tiny specks could have been in there for a long time, just waiting to grow and finally did, so I was just saying they can't prove/disprove what caused them to grow up there.
Just hoping that you and I both and all the others can keep these damn Brain tumors away for a long time after our treatments!
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