› Forums › General Melanoma Community › new stage 4 diagnosis
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Bubbles.
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- November 5, 2014 at 11:59 pm
Hi
I've posted before and read the boards often. My husband, Peter, had a CAT scan today and I was told an hour ago (when I got home from work) that his melanoma has spread to his brain. A 2.5 cm tumour in the right frontal cortex ( I think…) We will be meeting with the radiation oncologist tomorrow at 9AM. I'm so sad and scared, my husband is only 56. But, I am inspired by all of the wisdom and experience here. I'm trying to be brave, but I'm failing quite miserably. His original site was on his neck and he's had 2 surgeries and 33 radiation treatments to date. His neck dissection was in Feb/14 and radiation ended in late May/14. His CAT scan in the summer was clear. So, any words of wisdom before our appointment tomorrow? Thanks in advance 🙂
Yasmin
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- November 6, 2014 at 7:38 am
I'm sorry you guys got that awful news. I don't have any words of wisdom, as I'm no expert and not a melanoma warrior myself, but I do know that Stage IV is when they bring out the big guns in terms of treatment. Immunotherapy seems to be the best chance most people have, so hopefully your husband can get going on that soon and see some real results. Hang in there, and good luck tomorrow!
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- November 6, 2014 at 7:38 am
I'm sorry you guys got that awful news. I don't have any words of wisdom, as I'm no expert and not a melanoma warrior myself, but I do know that Stage IV is when they bring out the big guns in terms of treatment. Immunotherapy seems to be the best chance most people have, so hopefully your husband can get going on that soon and see some real results. Hang in there, and good luck tomorrow!
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- November 6, 2014 at 7:38 am
I'm sorry you guys got that awful news. I don't have any words of wisdom, as I'm no expert and not a melanoma warrior myself, but I do know that Stage IV is when they bring out the big guns in terms of treatment. Immunotherapy seems to be the best chance most people have, so hopefully your husband can get going on that soon and see some real results. Hang in there, and good luck tomorrow!
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- November 6, 2014 at 1:22 pm
Sorry to hear his diagnosis. I am also Stage 4, but I've been NED for 6-1/2 years now. Number one is to make sure his oncologist is a melanoma specialist! There are a number of treatments available at Stage 4.now and many are showing dramatic results. Being that the met is in his brain, they may elect to try immunotheropy or some of the nwer drugs to see if they can arrest, shrink, or eliminate the tumor first. There is also the option of the Gamma Knife and full brain radiation. Don't go out on the web looking for survivability stats, as they are dramatically out of date due to advancments in the last couple years! Try to stay calm and focused, meet with the oncologist and listen carefully to the options he/she presents. Don't be afraid to ask questions. Think about it as a plan of attack. Remember, this forum, as there are a lot of good, knowledable people here, as well as, a lot of long term survivors. Let us know what the outcome of the meeting with the oncologist is, we're here for melanoma fighters and their supporters.
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- November 6, 2014 at 1:22 pm
Sorry to hear his diagnosis. I am also Stage 4, but I've been NED for 6-1/2 years now. Number one is to make sure his oncologist is a melanoma specialist! There are a number of treatments available at Stage 4.now and many are showing dramatic results. Being that the met is in his brain, they may elect to try immunotheropy or some of the nwer drugs to see if they can arrest, shrink, or eliminate the tumor first. There is also the option of the Gamma Knife and full brain radiation. Don't go out on the web looking for survivability stats, as they are dramatically out of date due to advancments in the last couple years! Try to stay calm and focused, meet with the oncologist and listen carefully to the options he/she presents. Don't be afraid to ask questions. Think about it as a plan of attack. Remember, this forum, as there are a lot of good, knowledable people here, as well as, a lot of long term survivors. Let us know what the outcome of the meeting with the oncologist is, we're here for melanoma fighters and their supporters.
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- November 6, 2014 at 1:22 pm
Sorry to hear his diagnosis. I am also Stage 4, but I've been NED for 6-1/2 years now. Number one is to make sure his oncologist is a melanoma specialist! There are a number of treatments available at Stage 4.now and many are showing dramatic results. Being that the met is in his brain, they may elect to try immunotheropy or some of the nwer drugs to see if they can arrest, shrink, or eliminate the tumor first. There is also the option of the Gamma Knife and full brain radiation. Don't go out on the web looking for survivability stats, as they are dramatically out of date due to advancments in the last couple years! Try to stay calm and focused, meet with the oncologist and listen carefully to the options he/she presents. Don't be afraid to ask questions. Think about it as a plan of attack. Remember, this forum, as there are a lot of good, knowledable people here, as well as, a lot of long term survivors. Let us know what the outcome of the meeting with the oncologist is, we're here for melanoma fighters and their supporters.
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- November 6, 2014 at 1:55 pm
Hi Yasmin just wanted to say that I also have had brain mets. 3 small mets last year, ranging from 3 to 5 mm in size. 2.5 mm sound like a small one, and from what I have learned, very treatable. I had successful cyberknife treatment which lasted about 1 hr and other than some fatigue for a couple of days, there were no side effects. Best of luck!!! Ed
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- November 6, 2014 at 4:43 pm
Thank you all for your encouragement, it means so much. The radiation oncologist that we met with today said that radiation must be first plan ot attack. An MRI will be booked to confirm that this is the only tumour in Peter's brain; if it is, he will have cyberknife radiation. If there are other tumours, he will have whole brain radiation. We meet with the other oncologist on Nov 18 to discuss systemic options. My husband's driver's license was taken away because of the brain mets, which has been hard for him to accept. The radiation oncologist gave Pete 18-24 months to live, but we are not putting too much credence on that, as he is not a melanoma specialist.
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- November 6, 2014 at 7:52 pm
Hi Yasmin, just curious about the driver's lience being taken away. Did your husband suffer a black out or seizure? I am located near Ottawa and had the cyberknife treatment at the Ottawa General and at no point did they take my lience away. We did talk about the chance of swelling that could cause a seizure after the treatment for up to 6months. Also to quote a # about life expectancy at this point is troubling. Options for treatment for stage 4 keep expanding. My neural surgeon talked about using cyber knife treatment for up to 5 mets and also the size of the met being important in choosing whole brain vs cyberknife. I have also heard of people that have been retreated using cyberknife. I was treated by Dr. Sinclair (trained at Stanford in Sterotatic radiosurgery) at the Ottawa General and the radiologist was Dr. Malone who I contiue to see and do follow up scans every 3 months with. Wishing you the best! Ed
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- November 7, 2014 at 12:20 pm
Hi Ed
Thanks for your response, I appreciate it. The reason for taking Pete's license away now is that he already has swelling around the tumour, which could cause a seizure. He is now taking a steroid to reduce the swelling, which unfortunately causes insomnia. I will keep reading the board posts and updating as we get new info. By the way, we live in Kitchener, ON, just down the 401 from Ottawa 🙂
Yasmin
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- November 7, 2014 at 12:20 pm
Hi Ed
Thanks for your response, I appreciate it. The reason for taking Pete's license away now is that he already has swelling around the tumour, which could cause a seizure. He is now taking a steroid to reduce the swelling, which unfortunately causes insomnia. I will keep reading the board posts and updating as we get new info. By the way, we live in Kitchener, ON, just down the 401 from Ottawa 🙂
Yasmin
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- November 7, 2014 at 12:20 pm
Hi Ed
Thanks for your response, I appreciate it. The reason for taking Pete's license away now is that he already has swelling around the tumour, which could cause a seizure. He is now taking a steroid to reduce the swelling, which unfortunately causes insomnia. I will keep reading the board posts and updating as we get new info. By the way, we live in Kitchener, ON, just down the 401 from Ottawa 🙂
Yasmin
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- November 6, 2014 at 7:52 pm
Hi Yasmin, just curious about the driver's lience being taken away. Did your husband suffer a black out or seizure? I am located near Ottawa and had the cyberknife treatment at the Ottawa General and at no point did they take my lience away. We did talk about the chance of swelling that could cause a seizure after the treatment for up to 6months. Also to quote a # about life expectancy at this point is troubling. Options for treatment for stage 4 keep expanding. My neural surgeon talked about using cyber knife treatment for up to 5 mets and also the size of the met being important in choosing whole brain vs cyberknife. I have also heard of people that have been retreated using cyberknife. I was treated by Dr. Sinclair (trained at Stanford in Sterotatic radiosurgery) at the Ottawa General and the radiologist was Dr. Malone who I contiue to see and do follow up scans every 3 months with. Wishing you the best! Ed
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- November 6, 2014 at 7:52 pm
Hi Yasmin, just curious about the driver's lience being taken away. Did your husband suffer a black out or seizure? I am located near Ottawa and had the cyberknife treatment at the Ottawa General and at no point did they take my lience away. We did talk about the chance of swelling that could cause a seizure after the treatment for up to 6months. Also to quote a # about life expectancy at this point is troubling. Options for treatment for stage 4 keep expanding. My neural surgeon talked about using cyber knife treatment for up to 5 mets and also the size of the met being important in choosing whole brain vs cyberknife. I have also heard of people that have been retreated using cyberknife. I was treated by Dr. Sinclair (trained at Stanford in Sterotatic radiosurgery) at the Ottawa General and the radiologist was Dr. Malone who I contiue to see and do follow up scans every 3 months with. Wishing you the best! Ed
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- November 6, 2014 at 4:43 pm
Thank you all for your encouragement, it means so much. The radiation oncologist that we met with today said that radiation must be first plan ot attack. An MRI will be booked to confirm that this is the only tumour in Peter's brain; if it is, he will have cyberknife radiation. If there are other tumours, he will have whole brain radiation. We meet with the other oncologist on Nov 18 to discuss systemic options. My husband's driver's license was taken away because of the brain mets, which has been hard for him to accept. The radiation oncologist gave Pete 18-24 months to live, but we are not putting too much credence on that, as he is not a melanoma specialist.
-
- November 6, 2014 at 4:43 pm
Thank you all for your encouragement, it means so much. The radiation oncologist that we met with today said that radiation must be first plan ot attack. An MRI will be booked to confirm that this is the only tumour in Peter's brain; if it is, he will have cyberknife radiation. If there are other tumours, he will have whole brain radiation. We meet with the other oncologist on Nov 18 to discuss systemic options. My husband's driver's license was taken away because of the brain mets, which has been hard for him to accept. The radiation oncologist gave Pete 18-24 months to live, but we are not putting too much credence on that, as he is not a melanoma specialist.
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- November 6, 2014 at 1:55 pm
Hi Yasmin just wanted to say that I also have had brain mets. 3 small mets last year, ranging from 3 to 5 mm in size. 2.5 mm sound like a small one, and from what I have learned, very treatable. I had successful cyberknife treatment which lasted about 1 hr and other than some fatigue for a couple of days, there were no side effects. Best of luck!!! Ed
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- November 6, 2014 at 1:55 pm
Hi Yasmin just wanted to say that I also have had brain mets. 3 small mets last year, ranging from 3 to 5 mm in size. 2.5 mm sound like a small one, and from what I have learned, very treatable. I had successful cyberknife treatment which lasted about 1 hr and other than some fatigue for a couple of days, there were no side effects. Best of luck!!! Ed
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- November 6, 2014 at 5:20 pm
Hi Yasmin,
I understand some of how hard this news is to receive.
I've learned how important location is for determining treatment options for brain mets. I know resection can be done in some locations, but not necessarily in others. My preference is for resection/craniotomy when possible for larger tumors. My history is 1 3cm tumor craniotomy in 2010, follow-up CyberKnife to tumor bed plus to another smaller 1cm tumor; then a double 3cm + 3cm tumor craniotomy in 2011, follow-up GammaKnife to tumor beds plus gamma knife to two smaller (6mm and 3mm) ones.
My oncologist helped me get a systemic treatment (IPI in my case). I received it immediately after the 2011 surgeries/gamma knife. I turns out I might be a responde to IPI. He credits it with helping me to be NED in my brain since then. I would look for a systemic treatment in conjunction with resection and/or radiation.
For what it's worth my neurosurgeon (who I'm very happy with) here at UCSF in California did his neurosurgery training at University of British Columbia. I do see UBC is a very long way from where you are. If you get a second opinion on your husband's treatment plan (something I recommend for sure) one place might be the The Joey and Toby Tannenbaum Gamma Knife Centre in Toronto, associated with Princess Margaret. Gamma Knife, while similar, is also a bit different than CyberKnife and it might be worth seeing what they could do using that system that may be slightly different than CyberKnife.
For both of my episodes with brain mets, an interdisciplinary tumor board (radiation oncologist, neurosurgeon, melanoma specialist) met to discuss my case and come up with my treatment plans each time. Which makes a lot of sense to me as treating brain mets crosses all 3 areas.
Good luck with your appointment tomorrow.
-Kyle
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- November 7, 2014 at 9:19 pm
Hi Yasmine,
I echo the info Kyle and Ed provided. I too had a brain met, April 2010, along with a met in my lung. I had my brain zapped using stereotactic radiation and the upper lobe of my lung removed. I participated in a Nivolumab (anti-PD1) trial starting in Dec 2010 with my last dose about 17 months ago and remain NED. It will be hard and yucky but you and your husband can do this!!! I am a real believer in cyberknife and stereotactic radiation if at all possible. Multiple mets can be irradiated simultaneously if need be. Also, Kyle is exactly right. Prompt follow-up with an immunotherapy…like ipi, anti-PD1 or the combo…has been proven to be incredibly beneficial for mets in general, including those in the brain.
Hang in there. I hope today's appointments went as well as possible. Yours, Celeste
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- November 7, 2014 at 9:19 pm
Hi Yasmine,
I echo the info Kyle and Ed provided. I too had a brain met, April 2010, along with a met in my lung. I had my brain zapped using stereotactic radiation and the upper lobe of my lung removed. I participated in a Nivolumab (anti-PD1) trial starting in Dec 2010 with my last dose about 17 months ago and remain NED. It will be hard and yucky but you and your husband can do this!!! I am a real believer in cyberknife and stereotactic radiation if at all possible. Multiple mets can be irradiated simultaneously if need be. Also, Kyle is exactly right. Prompt follow-up with an immunotherapy…like ipi, anti-PD1 or the combo…has been proven to be incredibly beneficial for mets in general, including those in the brain.
Hang in there. I hope today's appointments went as well as possible. Yours, Celeste
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- November 7, 2014 at 9:19 pm
Hi Yasmine,
I echo the info Kyle and Ed provided. I too had a brain met, April 2010, along with a met in my lung. I had my brain zapped using stereotactic radiation and the upper lobe of my lung removed. I participated in a Nivolumab (anti-PD1) trial starting in Dec 2010 with my last dose about 17 months ago and remain NED. It will be hard and yucky but you and your husband can do this!!! I am a real believer in cyberknife and stereotactic radiation if at all possible. Multiple mets can be irradiated simultaneously if need be. Also, Kyle is exactly right. Prompt follow-up with an immunotherapy…like ipi, anti-PD1 or the combo…has been proven to be incredibly beneficial for mets in general, including those in the brain.
Hang in there. I hope today's appointments went as well as possible. Yours, Celeste
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- November 6, 2014 at 5:20 pm
Hi Yasmin,
I understand some of how hard this news is to receive.
I've learned how important location is for determining treatment options for brain mets. I know resection can be done in some locations, but not necessarily in others. My preference is for resection/craniotomy when possible for larger tumors. My history is 1 3cm tumor craniotomy in 2010, follow-up CyberKnife to tumor bed plus to another smaller 1cm tumor; then a double 3cm + 3cm tumor craniotomy in 2011, follow-up GammaKnife to tumor beds plus gamma knife to two smaller (6mm and 3mm) ones.
My oncologist helped me get a systemic treatment (IPI in my case). I received it immediately after the 2011 surgeries/gamma knife. I turns out I might be a responde to IPI. He credits it with helping me to be NED in my brain since then. I would look for a systemic treatment in conjunction with resection and/or radiation.
For what it's worth my neurosurgeon (who I'm very happy with) here at UCSF in California did his neurosurgery training at University of British Columbia. I do see UBC is a very long way from where you are. If you get a second opinion on your husband's treatment plan (something I recommend for sure) one place might be the The Joey and Toby Tannenbaum Gamma Knife Centre in Toronto, associated with Princess Margaret. Gamma Knife, while similar, is also a bit different than CyberKnife and it might be worth seeing what they could do using that system that may be slightly different than CyberKnife.
For both of my episodes with brain mets, an interdisciplinary tumor board (radiation oncologist, neurosurgeon, melanoma specialist) met to discuss my case and come up with my treatment plans each time. Which makes a lot of sense to me as treating brain mets crosses all 3 areas.
Good luck with your appointment tomorrow.
-Kyle
-
- November 6, 2014 at 5:20 pm
Hi Yasmin,
I understand some of how hard this news is to receive.
I've learned how important location is for determining treatment options for brain mets. I know resection can be done in some locations, but not necessarily in others. My preference is for resection/craniotomy when possible for larger tumors. My history is 1 3cm tumor craniotomy in 2010, follow-up CyberKnife to tumor bed plus to another smaller 1cm tumor; then a double 3cm + 3cm tumor craniotomy in 2011, follow-up GammaKnife to tumor beds plus gamma knife to two smaller (6mm and 3mm) ones.
My oncologist helped me get a systemic treatment (IPI in my case). I received it immediately after the 2011 surgeries/gamma knife. I turns out I might be a responde to IPI. He credits it with helping me to be NED in my brain since then. I would look for a systemic treatment in conjunction with resection and/or radiation.
For what it's worth my neurosurgeon (who I'm very happy with) here at UCSF in California did his neurosurgery training at University of British Columbia. I do see UBC is a very long way from where you are. If you get a second opinion on your husband's treatment plan (something I recommend for sure) one place might be the The Joey and Toby Tannenbaum Gamma Knife Centre in Toronto, associated with Princess Margaret. Gamma Knife, while similar, is also a bit different than CyberKnife and it might be worth seeing what they could do using that system that may be slightly different than CyberKnife.
For both of my episodes with brain mets, an interdisciplinary tumor board (radiation oncologist, neurosurgeon, melanoma specialist) met to discuss my case and come up with my treatment plans each time. Which makes a lot of sense to me as treating brain mets crosses all 3 areas.
Good luck with your appointment tomorrow.
-Kyle
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