› Forums › General Melanoma Community › i need to vent, please
- This topic has 24 replies, 8 voices, and was last updated 10 years, 6 months ago by
Sheepsandcows.
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- November 9, 2014 at 2:59 am
Hi
I posted a few days ago with news that my husband, Pete, was just diagnosed Stage 4 because of a brain met. The radiation oncologist told us very bluntly that he will live 18-24 months. Now I read all sorts of posts on these boards of people with Stage 4 multiple mets who live much longer than that. What gives!?! Was the guy just a jackass? Or am I deluding myself with hope that Pete could live for years yet? I feel confused and, frankly, kind of mad. We are waiting to meet the with oncologist (not the radiation oncologist) on Nov 18 and he'll talk to us about immunotherapy. The radiation oncologist obviously talked with us only about radiation options. Anyways, I'm feeling angry tonight. Angry, sad and a bit alone. Thanks for being here for support.
Yasmin
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- November 9, 2014 at 4:25 am
Sorry, Yasmin. Check the note I put on your last post. Brain met in 2010…and I'm still here! Perhaps some of these radiology oncs attend a "special" seminar. On my follow-up visit after my SRS my sweet fellow told me he'd see me in a year for whole brain radiation! Well…not and NOT!!!! There are many posts/articles on my blog regarding treatments for brain mets…as well as the benefit of treating them simultaneously, or in rapid succession, with radiation (cyber knife or stereotactic radiation) and immunotherapy. Just use the bubble on top left to search for topics if you are interested. Meanwhile…vent away. Wishing you both my best – c
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- November 9, 2014 at 4:25 am
Sorry, Yasmin. Check the note I put on your last post. Brain met in 2010…and I'm still here! Perhaps some of these radiology oncs attend a "special" seminar. On my follow-up visit after my SRS my sweet fellow told me he'd see me in a year for whole brain radiation! Well…not and NOT!!!! There are many posts/articles on my blog regarding treatments for brain mets…as well as the benefit of treating them simultaneously, or in rapid succession, with radiation (cyber knife or stereotactic radiation) and immunotherapy. Just use the bubble on top left to search for topics if you are interested. Meanwhile…vent away. Wishing you both my best – c
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- November 9, 2014 at 4:25 am
Sorry, Yasmin. Check the note I put on your last post. Brain met in 2010…and I'm still here! Perhaps some of these radiology oncs attend a "special" seminar. On my follow-up visit after my SRS my sweet fellow told me he'd see me in a year for whole brain radiation! Well…not and NOT!!!! There are many posts/articles on my blog regarding treatments for brain mets…as well as the benefit of treating them simultaneously, or in rapid succession, with radiation (cyber knife or stereotactic radiation) and immunotherapy. Just use the bubble on top left to search for topics if you are interested. Meanwhile…vent away. Wishing you both my best – c
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- November 9, 2014 at 4:29 am
Melanoma is hard to predict. The first oncologist we saw gave us the title of a book to read if you are terminal and my husband was not even staged yet. Although the journey has been rough, he is NED 15 month later. Stereostatic radiation along with yervoy has had excellent results. Hang in there and don't give up hope. Marianne
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- November 9, 2014 at 4:29 am
Melanoma is hard to predict. The first oncologist we saw gave us the title of a book to read if you are terminal and my husband was not even staged yet. Although the journey has been rough, he is NED 15 month later. Stereostatic radiation along with yervoy has had excellent results. Hang in there and don't give up hope. Marianne
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- November 9, 2014 at 4:29 am
Melanoma is hard to predict. The first oncologist we saw gave us the title of a book to read if you are terminal and my husband was not even staged yet. Although the journey has been rough, he is NED 15 month later. Stereostatic radiation along with yervoy has had excellent results. Hang in there and don't give up hope. Marianne
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- November 9, 2014 at 4:39 am
Yasmin, this is a safe place to vent, and I understand your anger. I think in your original post the other day, Ed also mentioned he was troubled by the life expectancy you were told by your husband's radiation oncologist. There are so many examples here of folks doing well with the new immunotherapies and targeted therapies, as well as with the "traditional" treatments like radiation and chemotherapy. Stage IV is a battle, no doubt, and there is much progress to be made. Early this year, there was a good (I think) op-ed piece in the New York Times about doctors discussing survival statistics and answering the "How long do I have?" question… it was written by a neurosurgeon who has the unique perspective of dealing with his own difficult cancer diagnosis. The article is here:Of the many good points the author makes, one I particularly like, especially given the rapid advances we're seeing in melanoma treatment, is that anyone who quotes a five-year survival statistic is using data that's five years out-of-date.No, it's not deluding yourself to think that there is hope for Pete's and your future. Again, there are many examples of people beating melanoma brain mets here (self included) and there are a number of treatment options, including surgery, stereotactic radiation (SRS, CyberKnife, Gamma Knife), immunotherapies, targeted therapies, among others. I don't want to downplay the challenge, these are far from guarantees, but other than to toss out an outdated average survival range for a brain tumor, I don't think anyone can tell you "the odds". I think hearing about a brain met is particularly frightening, just given the fact that it's, you know, in the brain, but once we were past the initial shock and understood the available options, it became another part of our journey.Hang in there, it's O.K. to vent, and there are options and reasons for real hope.Best,Joe -
- November 9, 2014 at 4:39 am
Yasmin, this is a safe place to vent, and I understand your anger. I think in your original post the other day, Ed also mentioned he was troubled by the life expectancy you were told by your husband's radiation oncologist. There are so many examples here of folks doing well with the new immunotherapies and targeted therapies, as well as with the "traditional" treatments like radiation and chemotherapy. Stage IV is a battle, no doubt, and there is much progress to be made. Early this year, there was a good (I think) op-ed piece in the New York Times about doctors discussing survival statistics and answering the "How long do I have?" question… it was written by a neurosurgeon who has the unique perspective of dealing with his own difficult cancer diagnosis. The article is here:Of the many good points the author makes, one I particularly like, especially given the rapid advances we're seeing in melanoma treatment, is that anyone who quotes a five-year survival statistic is using data that's five years out-of-date.No, it's not deluding yourself to think that there is hope for Pete's and your future. Again, there are many examples of people beating melanoma brain mets here (self included) and there are a number of treatment options, including surgery, stereotactic radiation (SRS, CyberKnife, Gamma Knife), immunotherapies, targeted therapies, among others. I don't want to downplay the challenge, these are far from guarantees, but other than to toss out an outdated average survival range for a brain tumor, I don't think anyone can tell you "the odds". I think hearing about a brain met is particularly frightening, just given the fact that it's, you know, in the brain, but once we were past the initial shock and understood the available options, it became another part of our journey.Hang in there, it's O.K. to vent, and there are options and reasons for real hope.Best,Joe -
- November 9, 2014 at 4:39 am
Yasmin, this is a safe place to vent, and I understand your anger. I think in your original post the other day, Ed also mentioned he was troubled by the life expectancy you were told by your husband's radiation oncologist. There are so many examples here of folks doing well with the new immunotherapies and targeted therapies, as well as with the "traditional" treatments like radiation and chemotherapy. Stage IV is a battle, no doubt, and there is much progress to be made. Early this year, there was a good (I think) op-ed piece in the New York Times about doctors discussing survival statistics and answering the "How long do I have?" question… it was written by a neurosurgeon who has the unique perspective of dealing with his own difficult cancer diagnosis. The article is here:Of the many good points the author makes, one I particularly like, especially given the rapid advances we're seeing in melanoma treatment, is that anyone who quotes a five-year survival statistic is using data that's five years out-of-date.No, it's not deluding yourself to think that there is hope for Pete's and your future. Again, there are many examples of people beating melanoma brain mets here (self included) and there are a number of treatment options, including surgery, stereotactic radiation (SRS, CyberKnife, Gamma Knife), immunotherapies, targeted therapies, among others. I don't want to downplay the challenge, these are far from guarantees, but other than to toss out an outdated average survival range for a brain tumor, I don't think anyone can tell you "the odds". I think hearing about a brain met is particularly frightening, just given the fact that it's, you know, in the brain, but once we were past the initial shock and understood the available options, it became another part of our journey.Hang in there, it's O.K. to vent, and there are options and reasons for real hope.Best,Joe -
- November 9, 2014 at 5:29 pm
Yasmin,
Agree with everything that has been said above. I remember when I progressed from stage III to stage IV. My oncologist was too nice of a guy to be blunt but I could tell from his demeanor that he basically thought I had just received my death sentence. I never fooled my self into thinking it was a sure thing that I was going to beat this disease but I always knew two things. I knew if I was going down I was not going down without a fight and I knew that standard of care was not going to cut it. To give myself the best chance I needed to get as smart as I could and find the smartest people in the field.
Your experience reminded me of an experience TJ Sharpe shared on his blog. Maybe you can get some inspiration from it. Try to envision yourself writing a letter to your radiologist in a couple years from now.
http://www.philly.com/philly/blogs/patient1/A-triumphant-note-to-TJs-first-oncologist.html
Brian
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- November 9, 2014 at 5:29 pm
Yasmin,
Agree with everything that has been said above. I remember when I progressed from stage III to stage IV. My oncologist was too nice of a guy to be blunt but I could tell from his demeanor that he basically thought I had just received my death sentence. I never fooled my self into thinking it was a sure thing that I was going to beat this disease but I always knew two things. I knew if I was going down I was not going down without a fight and I knew that standard of care was not going to cut it. To give myself the best chance I needed to get as smart as I could and find the smartest people in the field.
Your experience reminded me of an experience TJ Sharpe shared on his blog. Maybe you can get some inspiration from it. Try to envision yourself writing a letter to your radiologist in a couple years from now.
http://www.philly.com/philly/blogs/patient1/A-triumphant-note-to-TJs-first-oncologist.html
Brian
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- November 9, 2014 at 5:29 pm
Yasmin,
Agree with everything that has been said above. I remember when I progressed from stage III to stage IV. My oncologist was too nice of a guy to be blunt but I could tell from his demeanor that he basically thought I had just received my death sentence. I never fooled my self into thinking it was a sure thing that I was going to beat this disease but I always knew two things. I knew if I was going down I was not going down without a fight and I knew that standard of care was not going to cut it. To give myself the best chance I needed to get as smart as I could and find the smartest people in the field.
Your experience reminded me of an experience TJ Sharpe shared on his blog. Maybe you can get some inspiration from it. Try to envision yourself writing a letter to your radiologist in a couple years from now.
http://www.philly.com/philly/blogs/patient1/A-triumphant-note-to-TJs-first-oncologist.html
Brian
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- November 9, 2014 at 7:03 pm
Yasmin, I very much agree with the "how long have I got left?" article Joe posted. Like the article says, I'm on a survival curve too, somewhere, but who can say where? Perhaps 10, 20, 30 years out — certainly what I want to shoot for. Numbers and averages might make sense to a statisticiian but I think they're misleading to an individual patient. The 'statistics' or actual experiences of long-term survivorship keep increasing.
In 2010 I was told I had 6 months to live — these were still the days when the last approved treatment wasl circa 1995. One thing I will say, though, is that hearing "6 months" encouraged me to be very aggressive in my pursuit of treatment. Even with the newly approved and in-trial treatments coming now, this remains a serious cancer. I don't think that should be sugar-coated.
My current recurrence — found last December — has been "only" in a couple of lymph nodes. I don't want it going anywhere else, though, like to my brain where it was in 2010-2011. I think I've been very lucky in the tumor locations, i.e. which specific brain areas. As long as I am able to get aggressive, and preferably leading-edge treatment for any recurrence, I will. I also try to stay as healthy as I reasonably can in terms of exercise, diet, rest and stress. Many (most?) of us are leapfrogging from new treatment to new treatment now, and going NED (no evidence of disease) for short, medium, or very long stretches. I feel fortuante to be in a clinical trial now with this latest recurrence.
On a different tack, what type of radiation is being discussed? For one met, I hope it's SRS i.e. beam radiation delivered by something like Gamma Knife or CyberKnife. And what kind of immunotherapy? My brain met treatment plans were discussed by an interdisciplanry tumor board, consisting each time of my melanoma specialist, radiation oncologist and neurosurgeron at the time. That might be somethign to ask your oncologist about on the 18th — will a tumor board be discussing your case.
This webinar "Radiation Treatment in Brain Metastases" is still very current and would probably be a very good watch. I learned a lot about my own radiation treatments from it.
Good luck with you appointment on the 18th!
– Kyle
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- November 9, 2014 at 7:26 pm
Thank you so much for all of our replies, I appreciate it so much. Kyle, yes the radiation being suggested is SRS, if there is only the one tumour. We are awaiting an MRI to determine this with certainty. We will be requesting consultation with the melanoma specialist at Princess Margaret in Toronto, Dr. Hogg, whom we have been very impressed with in the past. I feel so supported on these boards, thank you all so much. You are all inspiring <3
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- November 10, 2014 at 4:06 pm
Of course you will feel angry, sad and many other emotions.
My son is being treated at Princess Margaret. It is a center of excellence, though we all need an oncologist with a team that you feel comfortable and respected. Ultimately, no one holds the truth. There are stats and prognosis to take into account, and at the same time your husband needs to also feel in control of his own treatment.
Best wishes for you and your husband.
M
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- November 10, 2014 at 4:06 pm
Of course you will feel angry, sad and many other emotions.
My son is being treated at Princess Margaret. It is a center of excellence, though we all need an oncologist with a team that you feel comfortable and respected. Ultimately, no one holds the truth. There are stats and prognosis to take into account, and at the same time your husband needs to also feel in control of his own treatment.
Best wishes for you and your husband.
M
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- November 10, 2014 at 4:06 pm
Of course you will feel angry, sad and many other emotions.
My son is being treated at Princess Margaret. It is a center of excellence, though we all need an oncologist with a team that you feel comfortable and respected. Ultimately, no one holds the truth. There are stats and prognosis to take into account, and at the same time your husband needs to also feel in control of his own treatment.
Best wishes for you and your husband.
M
-
- November 9, 2014 at 7:26 pm
Thank you so much for all of our replies, I appreciate it so much. Kyle, yes the radiation being suggested is SRS, if there is only the one tumour. We are awaiting an MRI to determine this with certainty. We will be requesting consultation with the melanoma specialist at Princess Margaret in Toronto, Dr. Hogg, whom we have been very impressed with in the past. I feel so supported on these boards, thank you all so much. You are all inspiring <3
-
- November 9, 2014 at 7:26 pm
Thank you so much for all of our replies, I appreciate it so much. Kyle, yes the radiation being suggested is SRS, if there is only the one tumour. We are awaiting an MRI to determine this with certainty. We will be requesting consultation with the melanoma specialist at Princess Margaret in Toronto, Dr. Hogg, whom we have been very impressed with in the past. I feel so supported on these boards, thank you all so much. You are all inspiring <3
-
- November 9, 2014 at 7:03 pm
Yasmin, I very much agree with the "how long have I got left?" article Joe posted. Like the article says, I'm on a survival curve too, somewhere, but who can say where? Perhaps 10, 20, 30 years out — certainly what I want to shoot for. Numbers and averages might make sense to a statisticiian but I think they're misleading to an individual patient. The 'statistics' or actual experiences of long-term survivorship keep increasing.
In 2010 I was told I had 6 months to live — these were still the days when the last approved treatment wasl circa 1995. One thing I will say, though, is that hearing "6 months" encouraged me to be very aggressive in my pursuit of treatment. Even with the newly approved and in-trial treatments coming now, this remains a serious cancer. I don't think that should be sugar-coated.
My current recurrence — found last December — has been "only" in a couple of lymph nodes. I don't want it going anywhere else, though, like to my brain where it was in 2010-2011. I think I've been very lucky in the tumor locations, i.e. which specific brain areas. As long as I am able to get aggressive, and preferably leading-edge treatment for any recurrence, I will. I also try to stay as healthy as I reasonably can in terms of exercise, diet, rest and stress. Many (most?) of us are leapfrogging from new treatment to new treatment now, and going NED (no evidence of disease) for short, medium, or very long stretches. I feel fortuante to be in a clinical trial now with this latest recurrence.
On a different tack, what type of radiation is being discussed? For one met, I hope it's SRS i.e. beam radiation delivered by something like Gamma Knife or CyberKnife. And what kind of immunotherapy? My brain met treatment plans were discussed by an interdisciplanry tumor board, consisting each time of my melanoma specialist, radiation oncologist and neurosurgeron at the time. That might be somethign to ask your oncologist about on the 18th — will a tumor board be discussing your case.
This webinar "Radiation Treatment in Brain Metastases" is still very current and would probably be a very good watch. I learned a lot about my own radiation treatments from it.
Good luck with you appointment on the 18th!
– Kyle
-
- November 9, 2014 at 7:03 pm
Yasmin, I very much agree with the "how long have I got left?" article Joe posted. Like the article says, I'm on a survival curve too, somewhere, but who can say where? Perhaps 10, 20, 30 years out — certainly what I want to shoot for. Numbers and averages might make sense to a statisticiian but I think they're misleading to an individual patient. The 'statistics' or actual experiences of long-term survivorship keep increasing.
In 2010 I was told I had 6 months to live — these were still the days when the last approved treatment wasl circa 1995. One thing I will say, though, is that hearing "6 months" encouraged me to be very aggressive in my pursuit of treatment. Even with the newly approved and in-trial treatments coming now, this remains a serious cancer. I don't think that should be sugar-coated.
My current recurrence — found last December — has been "only" in a couple of lymph nodes. I don't want it going anywhere else, though, like to my brain where it was in 2010-2011. I think I've been very lucky in the tumor locations, i.e. which specific brain areas. As long as I am able to get aggressive, and preferably leading-edge treatment for any recurrence, I will. I also try to stay as healthy as I reasonably can in terms of exercise, diet, rest and stress. Many (most?) of us are leapfrogging from new treatment to new treatment now, and going NED (no evidence of disease) for short, medium, or very long stretches. I feel fortuante to be in a clinical trial now with this latest recurrence.
On a different tack, what type of radiation is being discussed? For one met, I hope it's SRS i.e. beam radiation delivered by something like Gamma Knife or CyberKnife. And what kind of immunotherapy? My brain met treatment plans were discussed by an interdisciplanry tumor board, consisting each time of my melanoma specialist, radiation oncologist and neurosurgeron at the time. That might be somethign to ask your oncologist about on the 18th — will a tumor board be discussing your case.
This webinar "Radiation Treatment in Brain Metastases" is still very current and would probably be a very good watch. I learned a lot about my own radiation treatments from it.
Good luck with you appointment on the 18th!
– Kyle
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