› Forums › General Melanoma Community › To all canadian patients
- This topic has 45 replies, 4 voices, and was last updated 8 years, 7 months ago by
David McCaw.
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- October 27, 2016 at 7:44 pm
I am asking for your guidance please.
And also, for all of you who might read this and think: "Sole is so negative man, he just lets melanoma poison his life and he surely wants to die or something", please dont comment. For now.
I just came back from yet another depressing meeting with onco surgeon and hemaro oncologist. Suffice it to say that except pembro in Quebec and the braf and mek inhibitors and maybe two ro three more (less effective?) drugs, there wont be much more medicine available if/when I progress to stage 4.
Apparently, the nivo/ipi combo was just approved by Health Canada yesterday. But it is up to every province to administer their health funds and in Quebec, we will not ever be able to afford such a thing. It is simply too expensive for our society to spend a million bucks on a patient. I'm afraid my sand box has suddenly gotten very small.
So here is my question to you canadian friends (Ed are you there?): adjuvant therapy for stage 3 aside, what is available in your part of the country for stage 4? Do you have access to ipi? We'll have to see which province agrees to reimburse the combo but I am faced, yet again with more difficult choices.
As for my decision about interferon or c'inical trials and therefore CLND, it will depend if my low aggregate patelet condition can get through or not with the two administrators of those trials.
I will find out sometime soon next week I presume
If there is a richer province, I might have to consider moving if I can and leave all behind me if/when I progress.
On the other hand, some of you have survived despite all the new drugs available today. But I feel very helpless at the moment, contemplating the possibility of not being able to possibly survive this.
My apologies to everyone who gets offended by my attitude. It is not my intention. My melanoma picture has just drastically changed.
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- October 27, 2016 at 8:31 pm
Hi Sole, just my opinion, but I would focus on doing research of your options for stage 3 for now. Once you know if you can get into a trial in the adjuvant setting then things will be much clearer to you. The Pembro vs Ipi trial for stage 3 would be my choice and I think it is still taking patients at least in Ottawa. As far as your question about stage 4 and drug choices in Ontario, you can get Ipi, Pembro, targeted therapies but I don't have the Braf mutation so I haven't really followed what the options are for them and clinical trials. They are just opening Pembro plus IDO inhibitor in Ottawa if my memory is correct. Best Wishes!!!Ed
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- October 27, 2016 at 8:31 pm
Hi Sole, just my opinion, but I would focus on doing research of your options for stage 3 for now. Once you know if you can get into a trial in the adjuvant setting then things will be much clearer to you. The Pembro vs Ipi trial for stage 3 would be my choice and I think it is still taking patients at least in Ottawa. As far as your question about stage 4 and drug choices in Ontario, you can get Ipi, Pembro, targeted therapies but I don't have the Braf mutation so I haven't really followed what the options are for them and clinical trials. They are just opening Pembro plus IDO inhibitor in Ottawa if my memory is correct. Best Wishes!!!Ed
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- October 27, 2016 at 8:31 pm
Hi Sole, just my opinion, but I would focus on doing research of your options for stage 3 for now. Once you know if you can get into a trial in the adjuvant setting then things will be much clearer to you. The Pembro vs Ipi trial for stage 3 would be my choice and I think it is still taking patients at least in Ottawa. As far as your question about stage 4 and drug choices in Ontario, you can get Ipi, Pembro, targeted therapies but I don't have the Braf mutation so I haven't really followed what the options are for them and clinical trials. They are just opening Pembro plus IDO inhibitor in Ottawa if my memory is correct. Best Wishes!!!Ed
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- October 27, 2016 at 8:37 pm
Sole… I am not from Canada (although my grandparents were all French Canadian… so… there's blood man. ha!), but I absolutely understand your concerns. Sitting in limbo is the worst place any of us have been. Not knowing what you can do next, or what you will do next is so much worse than forging ahead with a thought out plan. As horrible as it may sound, if you ever do progress to stage IV, you will feel better once you are able to tackle the cancer one bite at a time. You will be able to be stronger than you are now… and it will surprise you, the fight that is in you.
My original diagnosis was June 2007. Stage IV was April 2013. There was no "in between" mental mess for me. I went from thinking "It's never coming back." to "Excuse me… i have WHAT in my brain!?" I remember the first meeting with my oncologist (a melanoma specialist). He was so excited about immunotherapy and the "new" treatements "coming soon" (Pembro). I remember thinking "I only need to survive long enough to make it to Pembro approval." Small surgeries came and went, major surgeries came and went, gamma rounds came and went, Ipi came and went, and although not BRAF negative… I'm not BRAF V-600E or K, so that ruled out FDA approved use of those meds. Then along came Pembro, and I was still alive. Given a 7% chance to make it 6 months, I'd made it 19 months, with brain metastasis. Pembro was my "magic ticket". Lesions quit popping up in my head, the lesion remaining in my lung disappeared, the subQ on my left arm "melted away".
You only need ONE "magic bullet" to work for you. I can tell that your worry and planning ahead will make you fight harder than those of us who, as you say, survived despite the drug availability. The most wonderful thing about melanoma research, is that it is ON FIRE right now. We are the "popular kids" who others are looking to for direction with immunotherapy. I have scans next week… chest/ab/pelvis and brain MRI. Am I concerned? You bet! Like an insane woman! The body has been NED for about 20 months. The brain, still has one wee little gamma radiated lump of "left over" that we are awaiting the disappearance of. Drug side effects forced me to pause/give up Pembro this summer. I am freaked out as to what to do if the brain mets return. All I know, is that melanoma has taught me we can only take one day at a time, because tomorrow may open a new door of treatment possibilities.
Nobody can stop the alarms in your mind. But you are in the right place for shoulders to lean on and for information resources. If the time comes, that you need to seek further treatment, you will be more prepared than you know, to do what needs to get done to get you to the next step. The internet has difficulty keeping up with advances and updating scary statistics (which are a whoooole other ball of "not always accurate"). The science is so rapidly evolving, that your sandbox may be getting an expansion on the far side, that you can't quite see yet. ; ) Until then… we are here for you to freak out with. It's why we're all here… shoulders and others in our shoes who totally "get it". : )
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- October 27, 2016 at 8:37 pm
Sole… I am not from Canada (although my grandparents were all French Canadian… so… there's blood man. ha!), but I absolutely understand your concerns. Sitting in limbo is the worst place any of us have been. Not knowing what you can do next, or what you will do next is so much worse than forging ahead with a thought out plan. As horrible as it may sound, if you ever do progress to stage IV, you will feel better once you are able to tackle the cancer one bite at a time. You will be able to be stronger than you are now… and it will surprise you, the fight that is in you.
My original diagnosis was June 2007. Stage IV was April 2013. There was no "in between" mental mess for me. I went from thinking "It's never coming back." to "Excuse me… i have WHAT in my brain!?" I remember the first meeting with my oncologist (a melanoma specialist). He was so excited about immunotherapy and the "new" treatements "coming soon" (Pembro). I remember thinking "I only need to survive long enough to make it to Pembro approval." Small surgeries came and went, major surgeries came and went, gamma rounds came and went, Ipi came and went, and although not BRAF negative… I'm not BRAF V-600E or K, so that ruled out FDA approved use of those meds. Then along came Pembro, and I was still alive. Given a 7% chance to make it 6 months, I'd made it 19 months, with brain metastasis. Pembro was my "magic ticket". Lesions quit popping up in my head, the lesion remaining in my lung disappeared, the subQ on my left arm "melted away".
You only need ONE "magic bullet" to work for you. I can tell that your worry and planning ahead will make you fight harder than those of us who, as you say, survived despite the drug availability. The most wonderful thing about melanoma research, is that it is ON FIRE right now. We are the "popular kids" who others are looking to for direction with immunotherapy. I have scans next week… chest/ab/pelvis and brain MRI. Am I concerned? You bet! Like an insane woman! The body has been NED for about 20 months. The brain, still has one wee little gamma radiated lump of "left over" that we are awaiting the disappearance of. Drug side effects forced me to pause/give up Pembro this summer. I am freaked out as to what to do if the brain mets return. All I know, is that melanoma has taught me we can only take one day at a time, because tomorrow may open a new door of treatment possibilities.
Nobody can stop the alarms in your mind. But you are in the right place for shoulders to lean on and for information resources. If the time comes, that you need to seek further treatment, you will be more prepared than you know, to do what needs to get done to get you to the next step. The internet has difficulty keeping up with advances and updating scary statistics (which are a whoooole other ball of "not always accurate"). The science is so rapidly evolving, that your sandbox may be getting an expansion on the far side, that you can't quite see yet. ; ) Until then… we are here for you to freak out with. It's why we're all here… shoulders and others in our shoes who totally "get it". : )
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- October 27, 2016 at 8:37 pm
Sole… I am not from Canada (although my grandparents were all French Canadian… so… there's blood man. ha!), but I absolutely understand your concerns. Sitting in limbo is the worst place any of us have been. Not knowing what you can do next, or what you will do next is so much worse than forging ahead with a thought out plan. As horrible as it may sound, if you ever do progress to stage IV, you will feel better once you are able to tackle the cancer one bite at a time. You will be able to be stronger than you are now… and it will surprise you, the fight that is in you.
My original diagnosis was June 2007. Stage IV was April 2013. There was no "in between" mental mess for me. I went from thinking "It's never coming back." to "Excuse me… i have WHAT in my brain!?" I remember the first meeting with my oncologist (a melanoma specialist). He was so excited about immunotherapy and the "new" treatements "coming soon" (Pembro). I remember thinking "I only need to survive long enough to make it to Pembro approval." Small surgeries came and went, major surgeries came and went, gamma rounds came and went, Ipi came and went, and although not BRAF negative… I'm not BRAF V-600E or K, so that ruled out FDA approved use of those meds. Then along came Pembro, and I was still alive. Given a 7% chance to make it 6 months, I'd made it 19 months, with brain metastasis. Pembro was my "magic ticket". Lesions quit popping up in my head, the lesion remaining in my lung disappeared, the subQ on my left arm "melted away".
You only need ONE "magic bullet" to work for you. I can tell that your worry and planning ahead will make you fight harder than those of us who, as you say, survived despite the drug availability. The most wonderful thing about melanoma research, is that it is ON FIRE right now. We are the "popular kids" who others are looking to for direction with immunotherapy. I have scans next week… chest/ab/pelvis and brain MRI. Am I concerned? You bet! Like an insane woman! The body has been NED for about 20 months. The brain, still has one wee little gamma radiated lump of "left over" that we are awaiting the disappearance of. Drug side effects forced me to pause/give up Pembro this summer. I am freaked out as to what to do if the brain mets return. All I know, is that melanoma has taught me we can only take one day at a time, because tomorrow may open a new door of treatment possibilities.
Nobody can stop the alarms in your mind. But you are in the right place for shoulders to lean on and for information resources. If the time comes, that you need to seek further treatment, you will be more prepared than you know, to do what needs to get done to get you to the next step. The internet has difficulty keeping up with advances and updating scary statistics (which are a whoooole other ball of "not always accurate"). The science is so rapidly evolving, that your sandbox may be getting an expansion on the far side, that you can't quite see yet. ; ) Until then… we are here for you to freak out with. It's why we're all here… shoulders and others in our shoes who totally "get it". : )
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- October 27, 2016 at 9:14 pm
Niki,
I am very moved by your story and I thank you for your advice and support. If I choose to stay in Quebec, Pembro will have to be my magic bullet too. I am looking at Ottawa right now and their provincial health plan and how this could eventually be a solution for me.
With all my heart, Niki, I wish you well and a very very long and productive life without any disease.
This is my wish for everyone.
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- October 27, 2016 at 9:14 pm
Niki,
I am very moved by your story and I thank you for your advice and support. If I choose to stay in Quebec, Pembro will have to be my magic bullet too. I am looking at Ottawa right now and their provincial health plan and how this could eventually be a solution for me.
With all my heart, Niki, I wish you well and a very very long and productive life without any disease.
This is my wish for everyone.
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- October 27, 2016 at 9:14 pm
Niki,
I am very moved by your story and I thank you for your advice and support. If I choose to stay in Quebec, Pembro will have to be my magic bullet too. I am looking at Ottawa right now and their provincial health plan and how this could eventually be a solution for me.
With all my heart, Niki, I wish you well and a very very long and productive life without any disease.
This is my wish for everyone.
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- October 27, 2016 at 9:33 pm
Always good to have back up plans. Let's hope it never comes to that. : ) If you move to Ottawa, does that mean you have to switch from cheering the Canadians to routing on the Senators? ; ) KIDDING! My medical oncologist was Canadian, there was a lot of "hockey talk" at appointments. ha!
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- October 27, 2016 at 9:33 pm
Always good to have back up plans. Let's hope it never comes to that. : ) If you move to Ottawa, does that mean you have to switch from cheering the Canadians to routing on the Senators? ; ) KIDDING! My medical oncologist was Canadian, there was a lot of "hockey talk" at appointments. ha!
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- October 27, 2016 at 9:33 pm
Always good to have back up plans. Let's hope it never comes to that. : ) If you move to Ottawa, does that mean you have to switch from cheering the Canadians to routing on the Senators? ; ) KIDDING! My medical oncologist was Canadian, there was a lot of "hockey talk" at appointments. ha!
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- October 28, 2016 at 1:04 pm
I'm sorry. I did not mean to make light of the situation. The differences in health care likely makes things easier on us here in the states. I travel about 290 km to Los Angeles for treatment, but it did not require a move and an entire upheavel of my life. I truly wish for you to find a team of docs that you trust, and that you can find the care you need with as little disruption as possible. Having a loved one close by, so you can "crack" as needed, is tremendously helpful….. I don't know how my husband puts up with it sometimes. : )
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- October 28, 2016 at 1:04 pm
I'm sorry. I did not mean to make light of the situation. The differences in health care likely makes things easier on us here in the states. I travel about 290 km to Los Angeles for treatment, but it did not require a move and an entire upheavel of my life. I truly wish for you to find a team of docs that you trust, and that you can find the care you need with as little disruption as possible. Having a loved one close by, so you can "crack" as needed, is tremendously helpful….. I don't know how my husband puts up with it sometimes. : )
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- October 28, 2016 at 1:04 pm
I'm sorry. I did not mean to make light of the situation. The differences in health care likely makes things easier on us here in the states. I travel about 290 km to Los Angeles for treatment, but it did not require a move and an entire upheavel of my life. I truly wish for you to find a team of docs that you trust, and that you can find the care you need with as little disruption as possible. Having a loved one close by, so you can "crack" as needed, is tremendously helpful….. I don't know how my husband puts up with it sometimes. : )
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- October 27, 2016 at 10:29 pm
Hello Sole,
I am in Ottawa and stage 3c, I agree with Ed on focusing on stage 3 options.I meet with my med onc in 2 weeks for a treatment plan on my in-transit melanomas, two were removed during clnd surgery 2 weeke ago. I discussed clinical trials with mel surgeon and interesting some I will not qualify for because of ITMs others are full in Ottawa and others may be available in Kingston,Toronto and inter provincial to Montreal So don’t give up there are other options. I don’t know who your melanoma oncologist is in Montreal,but two are listed on melanomanetwork.ca are Dr. Wilson Miller and Dr. Francois Patenaude at JGH and Dr. Mihalicioiu RVH., plus Dr. Joel Claveau in Hotel Dieu de Quebec. Quebec City Take CareDavid
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- October 27, 2016 at 10:29 pm
Hello Sole,
I am in Ottawa and stage 3c, I agree with Ed on focusing on stage 3 options.I meet with my med onc in 2 weeks for a treatment plan on my in-transit melanomas, two were removed during clnd surgery 2 weeke ago. I discussed clinical trials with mel surgeon and interesting some I will not qualify for because of ITMs others are full in Ottawa and others may be available in Kingston,Toronto and inter provincial to Montreal So don’t give up there are other options. I don’t know who your melanoma oncologist is in Montreal,but two are listed on melanomanetwork.ca are Dr. Wilson Miller and Dr. Francois Patenaude at JGH and Dr. Mihalicioiu RVH., plus Dr. Joel Claveau in Hotel Dieu de Quebec. Quebec City Take CareDavid
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- October 27, 2016 at 10:29 pm
Hello Sole,
I am in Ottawa and stage 3c, I agree with Ed on focusing on stage 3 options.I meet with my med onc in 2 weeks for a treatment plan on my in-transit melanomas, two were removed during clnd surgery 2 weeke ago. I discussed clinical trials with mel surgeon and interesting some I will not qualify for because of ITMs others are full in Ottawa and others may be available in Kingston,Toronto and inter provincial to Montreal So don’t give up there are other options. I don’t know who your melanoma oncologist is in Montreal,but two are listed on melanomanetwork.ca are Dr. Wilson Miller and Dr. Francois Patenaude at JGH and Dr. Mihalicioiu RVH., plus Dr. Joel Claveau in Hotel Dieu de Quebec. Quebec City Take CareDavid
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- October 27, 2016 at 10:45 pm
Thank you David
I am in the process of changing medical center here in Montreal. But the thing is that I may have a condition with my patelets that could prevent me from doing ANY trials or treatments for that matter… I am exhausted and really discouraged today.
But thanks a million!
I'll see what I can do. Girlfriend is helping everywhere in my life except traditional medicine which she dors not believe in so I'm all alone trying to figure it out. Not whining, just tired.
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- October 27, 2016 at 10:45 pm
Thank you David
I am in the process of changing medical center here in Montreal. But the thing is that I may have a condition with my patelets that could prevent me from doing ANY trials or treatments for that matter… I am exhausted and really discouraged today.
But thanks a million!
I'll see what I can do. Girlfriend is helping everywhere in my life except traditional medicine which she dors not believe in so I'm all alone trying to figure it out. Not whining, just tired.
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- October 27, 2016 at 10:45 pm
Thank you David
I am in the process of changing medical center here in Montreal. But the thing is that I may have a condition with my patelets that could prevent me from doing ANY trials or treatments for that matter… I am exhausted and really discouraged today.
But thanks a million!
I'll see what I can do. Girlfriend is helping everywhere in my life except traditional medicine which she dors not believe in so I'm all alone trying to figure it out. Not whining, just tired.
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- October 27, 2016 at 11:13 pm
Keep positive. Keep building your support team. Surg mel onc, med mel onc, dermatologist, reach out to ccs peer network and melanoma network canada, plus keep pressing forward with your plan A and backup plans. https://www.melanomanetwork.ca/contact/
Take Care
David
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- October 27, 2016 at 11:13 pm
Keep positive. Keep building your support team. Surg mel onc, med mel onc, dermatologist, reach out to ccs peer network and melanoma network canada, plus keep pressing forward with your plan A and backup plans. https://www.melanomanetwork.ca/contact/
Take Care
David
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- October 27, 2016 at 11:13 pm
Keep positive. Keep building your support team. Surg mel onc, med mel onc, dermatologist, reach out to ccs peer network and melanoma network canada, plus keep pressing forward with your plan A and backup plans. https://www.melanomanetwork.ca/contact/
Take Care
David
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- October 27, 2016 at 11:20 pm
between my ankles, top of foot, lower middle leg, they did a skin graft last nov 24, its approx. 5 cm diameter, interesting all the margins were negative and SNB, then 10 months later , 23 of 28 inguinal nodes +
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- October 27, 2016 at 11:20 pm
between my ankles, top of foot, lower middle leg, they did a skin graft last nov 24, its approx. 5 cm diameter, interesting all the margins were negative and SNB, then 10 months later , 23 of 28 inguinal nodes +
-
- October 27, 2016 at 11:20 pm
between my ankles, top of foot, lower middle leg, they did a skin graft last nov 24, its approx. 5 cm diameter, interesting all the margins were negative and SNB, then 10 months later , 23 of 28 inguinal nodes +
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- October 31, 2016 at 9:33 pm
Sole, I see that health canada finally approved the ipi nivo combo today. The clinical trial is checkmate 067 , which is the treatment that Ed was fortunate to receive in Jan 2014. Next is the funding to provinces
Regards,
David
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- October 31, 2016 at 9:33 pm
Sole, I see that health canada finally approved the ipi nivo combo today. The clinical trial is checkmate 067 , which is the treatment that Ed was fortunate to receive in Jan 2014. Next is the funding to provinces
Regards,
David
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- October 31, 2016 at 9:33 pm
Sole, I see that health canada finally approved the ipi nivo combo today. The clinical trial is checkmate 067 , which is the treatment that Ed was fortunate to receive in Jan 2014. Next is the funding to provinces
Regards,
David
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