› Forums › General Melanoma Community › brain mets – good news
- This topic has 12 replies, 2 voices, and was last updated 12 years, 8 months ago by
jag.
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- June 30, 2012 at 2:28 am
I am so pleased with how well my husband is doing, that I have to share. A week ago, he had a grand mal seizure while on vacation. While we waited at the nearby hospital for a bed to open up at JWCI, we were given some scary news that the tumor had returned and was most likely not operable. Once, we got to his neurosurgeon and oncologist at JWCI, we were given much better news. Although he had two hemorrhagic tumors, they were near the surface and operable.
I am so pleased with how well my husband is doing, that I have to share. A week ago, he had a grand mal seizure while on vacation. While we waited at the nearby hospital for a bed to open up at JWCI, we were given some scary news that the tumor had returned and was most likely not operable. Once, we got to his neurosurgeon and oncologist at JWCI, we were given much better news. Although he had two hemorrhagic tumors, they were near the surface and operable.
John had two craniotomies yesterday and is recovering nicely! The last couple of months have been quite a rollercoaster with WBR, numerous cranis, brain edema and all of the symptoms that go with that. Before putting him back on steroids, I watched my husband dying before my eyes, sleeping all of the time, not eating, confused, memory loss, slurred speech, muscle loss, fatigue, shivering, etc. There were some dark days, and I was losing hope. I feel like we keep getting second, third and fourth chances and am so grateful. John's appetite is great and there are no noticeable cognitive deficits. I just want to offer hope to others in similar circumstances.
John's onc wants to start him on a Temodar/Avastin combo in two weeks. I'm just so glad that all 4 of his brain mets have been recently resected, so that the treatment has a chance to work at preventing them from blowing up again. Have any of you had a Temodar/Avastin combo? Love to hear your experiences.
I hope my husband's experience can offer inspiration to others fighting brain mets.
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- June 30, 2012 at 2:54 am
I'm so glad to see that your husband is recovering so well. My Mom just stated Carbo/Abraxane. I would love to see her on Avastin as well. I've read some interesting things on the combo. I've read that Tremodar is great for brain mets being that it can cross the brain barrier. Avastin is great because what I gather is starves the blood supply to the tumors.
I lived in Pacific Palisades, Ca and have only know great things about John Wayne Caner Center. I am pushing our Dr to add Avastin into my Mother's next cycle. He tells me it's an insurance issue and he doesn't know how the Southern California docs are getting approval for it. Do you know how your Dr got approval for it or it's it just that you have better insurance. I'm am going to call my Mother's insurance company on Monday and see. Our Dr hasn't even tried to inquiry yet.
It seems that I'm seeing quite a few people on chemo protocols right now as mostly all of the anti-pd1 trials are currently full. I know of somone "meanddave" her husband is on I believe cardo/taxol and responding well. Another person from John Wayne that is on Abraxane/Carbo/Avastin that has been NED 11 months. I believe their name is "hope4acure" A few others, but have just started with no scans. My Mom is doing treatment 3 of cycle 1 on Monday. We then have a one week break and another 3 week cycle. I cross my fingers for a response, stable disease and nothing new. I'm not asking for much 🙂 It's been a long 3 years. My Mom is 70 yrs old with Mucosal Melanoma.
I'll keep you and your family close to my heart and in my prayers for a great response.
Wendy
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- June 30, 2012 at 2:54 am
I'm so glad to see that your husband is recovering so well. My Mom just stated Carbo/Abraxane. I would love to see her on Avastin as well. I've read some interesting things on the combo. I've read that Tremodar is great for brain mets being that it can cross the brain barrier. Avastin is great because what I gather is starves the blood supply to the tumors.
I lived in Pacific Palisades, Ca and have only know great things about John Wayne Caner Center. I am pushing our Dr to add Avastin into my Mother's next cycle. He tells me it's an insurance issue and he doesn't know how the Southern California docs are getting approval for it. Do you know how your Dr got approval for it or it's it just that you have better insurance. I'm am going to call my Mother's insurance company on Monday and see. Our Dr hasn't even tried to inquiry yet.
It seems that I'm seeing quite a few people on chemo protocols right now as mostly all of the anti-pd1 trials are currently full. I know of somone "meanddave" her husband is on I believe cardo/taxol and responding well. Another person from John Wayne that is on Abraxane/Carbo/Avastin that has been NED 11 months. I believe their name is "hope4acure" A few others, but have just started with no scans. My Mom is doing treatment 3 of cycle 1 on Monday. We then have a one week break and another 3 week cycle. I cross my fingers for a response, stable disease and nothing new. I'm not asking for much 🙂 It's been a long 3 years. My Mom is 70 yrs old with Mucosal Melanoma.
I'll keep you and your family close to my heart and in my prayers for a great response.
Wendy
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- June 30, 2012 at 2:54 am
I'm so glad to see that your husband is recovering so well. My Mom just stated Carbo/Abraxane. I would love to see her on Avastin as well. I've read some interesting things on the combo. I've read that Tremodar is great for brain mets being that it can cross the brain barrier. Avastin is great because what I gather is starves the blood supply to the tumors.
I lived in Pacific Palisades, Ca and have only know great things about John Wayne Caner Center. I am pushing our Dr to add Avastin into my Mother's next cycle. He tells me it's an insurance issue and he doesn't know how the Southern California docs are getting approval for it. Do you know how your Dr got approval for it or it's it just that you have better insurance. I'm am going to call my Mother's insurance company on Monday and see. Our Dr hasn't even tried to inquiry yet.
It seems that I'm seeing quite a few people on chemo protocols right now as mostly all of the anti-pd1 trials are currently full. I know of somone "meanddave" her husband is on I believe cardo/taxol and responding well. Another person from John Wayne that is on Abraxane/Carbo/Avastin that has been NED 11 months. I believe their name is "hope4acure" A few others, but have just started with no scans. My Mom is doing treatment 3 of cycle 1 on Monday. We then have a one week break and another 3 week cycle. I cross my fingers for a response, stable disease and nothing new. I'm not asking for much 🙂 It's been a long 3 years. My Mom is 70 yrs old with Mucosal Melanoma.
I'll keep you and your family close to my heart and in my prayers for a great response.
Wendy
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- June 30, 2012 at 2:54 am
I'm so glad to see that your husband is recovering so well. My Mom just stated Carbo/Abraxane. I would love to see her on Avastin as well. I've read some interesting things on the combo. I've read that Tremodar is great for brain mets being that it can cross the brain barrier. Avastin is great because what I gather is starves the blood supply to the tumors.
I lived in Pacific Palisades, Ca and have only know great things about John Wayne Caner Center. I am pushing our Dr to add Avastin into my Mother's next cycle. He tells me it's an insurance issue and he doesn't know how the Southern California docs are getting approval for it. Do you know how your Dr got approval for it or it's it just that you have better insurance. I'm am going to call my Mother's insurance company on Monday and see. Our Dr hasn't even tried to inquiry yet.
It seems that I'm seeing quite a few people on chemo protocols right now as mostly all of the anti-pd1 trials are currently full. I know of somone "meanddave" her husband is on I believe cardo/taxol and responding well. Another person from John Wayne that is on Abraxane/Carbo/Avastin that has been NED 11 months. I believe their name is "hope4acure" A few others, but have just started with no scans. My Mom is doing treatment 3 of cycle 1 on Monday. We then have a one week break and another 3 week cycle. I cross my fingers for a response, stable disease and nothing new. I'm not asking for much 🙂 It's been a long 3 years. My Mom is 70 yrs old with Mucosal Melanoma.
I'll keep you and your family close to my heart and in my prayers for a great response.
Wendy
-
- June 30, 2012 at 2:54 am
I'm so glad to see that your husband is recovering so well. My Mom just stated Carbo/Abraxane. I would love to see her on Avastin as well. I've read some interesting things on the combo. I've read that Tremodar is great for brain mets being that it can cross the brain barrier. Avastin is great because what I gather is starves the blood supply to the tumors.
I lived in Pacific Palisades, Ca and have only know great things about John Wayne Caner Center. I am pushing our Dr to add Avastin into my Mother's next cycle. He tells me it's an insurance issue and he doesn't know how the Southern California docs are getting approval for it. Do you know how your Dr got approval for it or it's it just that you have better insurance. I'm am going to call my Mother's insurance company on Monday and see. Our Dr hasn't even tried to inquiry yet.
It seems that I'm seeing quite a few people on chemo protocols right now as mostly all of the anti-pd1 trials are currently full. I know of somone "meanddave" her husband is on I believe cardo/taxol and responding well. Another person from John Wayne that is on Abraxane/Carbo/Avastin that has been NED 11 months. I believe their name is "hope4acure" A few others, but have just started with no scans. My Mom is doing treatment 3 of cycle 1 on Monday. We then have a one week break and another 3 week cycle. I cross my fingers for a response, stable disease and nothing new. I'm not asking for much 🙂 It's been a long 3 years. My Mom is 70 yrs old with Mucosal Melanoma.
I'll keep you and your family close to my heart and in my prayers for a great response.
Wendy
-
- June 30, 2012 at 2:54 am
I'm so glad to see that your husband is recovering so well. My Mom just stated Carbo/Abraxane. I would love to see her on Avastin as well. I've read some interesting things on the combo. I've read that Tremodar is great for brain mets being that it can cross the brain barrier. Avastin is great because what I gather is starves the blood supply to the tumors.
I lived in Pacific Palisades, Ca and have only know great things about John Wayne Caner Center. I am pushing our Dr to add Avastin into my Mother's next cycle. He tells me it's an insurance issue and he doesn't know how the Southern California docs are getting approval for it. Do you know how your Dr got approval for it or it's it just that you have better insurance. I'm am going to call my Mother's insurance company on Monday and see. Our Dr hasn't even tried to inquiry yet.
It seems that I'm seeing quite a few people on chemo protocols right now as mostly all of the anti-pd1 trials are currently full. I know of somone "meanddave" her husband is on I believe cardo/taxol and responding well. Another person from John Wayne that is on Abraxane/Carbo/Avastin that has been NED 11 months. I believe their name is "hope4acure" A few others, but have just started with no scans. My Mom is doing treatment 3 of cycle 1 on Monday. We then have a one week break and another 3 week cycle. I cross my fingers for a response, stable disease and nothing new. I'm not asking for much 🙂 It's been a long 3 years. My Mom is 70 yrs old with Mucosal Melanoma.
I'll keep you and your family close to my heart and in my prayers for a great response.
Wendy
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- June 30, 2012 at 2:57 am
Woooooohooooooooooooo!
Very happy to hear your good news and that John has treatment options.
I recieved Temodar therapy. Wasn't the best. Brain tumors finally stopped recurring when my doctor took me off of it.It does cross the blood brain barrier, but I can't name any brain met survivors who have actually seen their tumors shrink with Temodar. I could be wrong. Not a lot of side effects, yet still I felt kind of beat up.
Avastin on the other hand, that is a targeted therapy that is thought to prevent blood vessel formation for tumors, likely has some antiradiation necrosis factors with it as well.
I would ask about Yervoy and why it is not being reccomended for your husband.
In the meantime, do whatever the hell you guys want, you are back at square 1, and NED for the time being, time to start crossing things off of the "bucket list"
God Bless
John
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- June 30, 2012 at 2:57 am
Woooooohooooooooooooo!
Very happy to hear your good news and that John has treatment options.
I recieved Temodar therapy. Wasn't the best. Brain tumors finally stopped recurring when my doctor took me off of it.It does cross the blood brain barrier, but I can't name any brain met survivors who have actually seen their tumors shrink with Temodar. I could be wrong. Not a lot of side effects, yet still I felt kind of beat up.
Avastin on the other hand, that is a targeted therapy that is thought to prevent blood vessel formation for tumors, likely has some antiradiation necrosis factors with it as well.
I would ask about Yervoy and why it is not being reccomended for your husband.
In the meantime, do whatever the hell you guys want, you are back at square 1, and NED for the time being, time to start crossing things off of the "bucket list"
God Bless
John
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- June 30, 2012 at 2:57 am
Woooooohooooooooooooo!
Very happy to hear your good news and that John has treatment options.
I recieved Temodar therapy. Wasn't the best. Brain tumors finally stopped recurring when my doctor took me off of it.It does cross the blood brain barrier, but I can't name any brain met survivors who have actually seen their tumors shrink with Temodar. I could be wrong. Not a lot of side effects, yet still I felt kind of beat up.
Avastin on the other hand, that is a targeted therapy that is thought to prevent blood vessel formation for tumors, likely has some antiradiation necrosis factors with it as well.
I would ask about Yervoy and why it is not being reccomended for your husband.
In the meantime, do whatever the hell you guys want, you are back at square 1, and NED for the time being, time to start crossing things off of the "bucket list"
God Bless
John
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