› Forums › General Melanoma Community › Treatment options in Canada
- This topic has 18 replies, 3 voices, and was last updated 10 years, 3 months ago by
Nadia.
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- January 24, 2014 at 10:16 pm
Reading forums, blogs, etc. I realize how many options of treatment are for Stage IV peeps in the US, and I can't really find as many options in Canada. When my Hubby was diagnosed, he was told he can start Vemurafenib (Zelboraf) right away, but if he waits for a month he may be accepted in the nivo/ ipi phase III three arm trial. He is currently enrolled in this trial and although we have high hopes and we are keeping positive, we will not know until the scans (Jan 28) what is next. All we know is if it worked, he will be kept in maintenance (IV every two weeks) for as long as he is stable and he can handle it.
But we asked twice already what options are there if the trial didn't work. The one answer we got was a mumble about a "compasionate" trial but it was left at that, no miracle drug name was mentioned. I know Vemurafenib is also another option. But what else is available?
We are ready to travel in other provinces that offer other options for treatment (and pay for the treatment if it's not covered by the Health Care system) but we really don't know what are the terms we have to comply. Any Canadian people that had to travel around in other province for treatment?
Also, before we started the trial we contacted MD Anderson, sent them all the scan results, blood work, etc. for second opinion and they said they can treat Dave there but we have to relocate to Huston and pay for everything. Is anybody from Canada currently treated in the US that can share any light in the matter?
Thank you,
Maria
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- January 25, 2014 at 2:46 am
Hi, Maria-
The ipi and/or nivo trial is a very good one, so please try your best to maintain a positive mental attitude unless and until you find out otherwise. After all, there is a good chance that the Jan 28th scans will give you some very good news!
I understand, however, the impulse to start to look for what might come next. I don't know much about the Canadian health care system and I hope others here can answer your questions more knowledgeably. However, I do know that both Tafinlar (dabrafenib) and Mekinist (MEK) were approved in Canada last summer. The combination works even better than either one alone and that might be a good option for your husband.
The combo has not yet been approved in Canada. Is it legal for a doctor to prescribe both drugs together in Canada (what we Americans call "off label" use)? In the States, it is legal for doctors to do that but our insurance companies will usually not pay for "off label" use– the patient has to pay. I do not know what is possible in Canada.
I hope and expect that your husband is responding to the ipi and/or nivo. If he's not, perhaps you can talk to your doctor about Tafinlar + Mekinist. And do also post this question on the Melanoma International Foundation forum– they have quite a few Canadian members.
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- January 25, 2014 at 2:46 am
Hi, Maria-
The ipi and/or nivo trial is a very good one, so please try your best to maintain a positive mental attitude unless and until you find out otherwise. After all, there is a good chance that the Jan 28th scans will give you some very good news!
I understand, however, the impulse to start to look for what might come next. I don't know much about the Canadian health care system and I hope others here can answer your questions more knowledgeably. However, I do know that both Tafinlar (dabrafenib) and Mekinist (MEK) were approved in Canada last summer. The combination works even better than either one alone and that might be a good option for your husband.
The combo has not yet been approved in Canada. Is it legal for a doctor to prescribe both drugs together in Canada (what we Americans call "off label" use)? In the States, it is legal for doctors to do that but our insurance companies will usually not pay for "off label" use– the patient has to pay. I do not know what is possible in Canada.
I hope and expect that your husband is responding to the ipi and/or nivo. If he's not, perhaps you can talk to your doctor about Tafinlar + Mekinist. And do also post this question on the Melanoma International Foundation forum– they have quite a few Canadian members.
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- January 25, 2014 at 5:02 am
Thank you for your reply, I am going to check out the MIF forum. Hopefully the scan will come back as stable or better and we don't have to worry, however, my question still needs to be asked and answered.
I am amazed at the lack of information specific for Canadians available on the internet, I know the sun only shines six times a year (just kidding), but people still get diagnosed with melanoma. I found the Canadian Cancer Society's web site, the only site that has links to clinical trials, it was last updated on December 2012!!! Hubby's trial started in October 2013, it wasn't even listed!
I will do my homework, I will make sure we are aware of all the options, but hope from the bottom of my heart the nivo /ipi works and I don't need any other treatment for the next 40 years!
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- January 25, 2014 at 8:34 pm
hi Maria,
I'm so sorry that you & your husband are needing to face this.
I'm a Canadian dealing with stage IV melanoma. (I live in Calgary with my family).
Back in July of this year, when I was seeking treatment, the anti-PD-1 agents were the most promising. (I think that's probably still the case).
I'd wanted to get into the three-arm phase III BMS trial (with Ipi & Nivo). But the Edmonton site (closest to me) wasn't recruiting until the fall, and I knew I probably didn't have that long to wait.
I had already had a consultation with Jedd Wolchok in New York back when I was in stage III, and so I contacted him, and ended up in the tail end of the phase I ipi-nivo trial. I've done well in that, but I have had to pay for all the scans & bloodwork, to the tune of more than 200 thousand Cdn. Hello, re-mortgaging.
So — if you can get into that ipi-nivo trial in Canada, then I think you've got the best of both worlds!!
As for the next step — I'm not sure that there IS a miracle next step for any of us, regardless of where we're living. I guess if the Nivo stops working for me, I would consider TIL at the NIH — and they do cover costs for international patients.
Good luck, good luck to you. Please keep us posted?
u.
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- January 25, 2014 at 8:46 pm
One more thing — to answer POW's question about off-label use in Canada
(and, POW, can I take a moment to say how much I appreciate your steady stream of knowledgable, compassionate, and articulate replies? Boy, do I appreciate it, and I'm sure that others do, too).
I think that Canadian physicians actually have more flexibility around off-label prescribing, as long as the agents have Health Canada approval (no small caveat, since that approval sometimes comes months or years later than the American FDA approval. That can be a blessing — eg, thalidomide; but mostly a pain).
They are not as bound to the protocols of insurance companies (the government, as our 'insurance company' tends to give physicians a longer leash). But this is up to individual physicians, and so you to have an assertive, knowledgeable Canadian doc who really knows what they're doing. And of course, that's difficult when it comes to melanoma. I know that Michael Smylie in Edmonton and David Hogg in Toronto are smart & creative Canadian oncologists.
cheers,
u.
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- January 25, 2014 at 8:46 pm
One more thing — to answer POW's question about off-label use in Canada
(and, POW, can I take a moment to say how much I appreciate your steady stream of knowledgable, compassionate, and articulate replies? Boy, do I appreciate it, and I'm sure that others do, too).
I think that Canadian physicians actually have more flexibility around off-label prescribing, as long as the agents have Health Canada approval (no small caveat, since that approval sometimes comes months or years later than the American FDA approval. That can be a blessing — eg, thalidomide; but mostly a pain).
They are not as bound to the protocols of insurance companies (the government, as our 'insurance company' tends to give physicians a longer leash). But this is up to individual physicians, and so you to have an assertive, knowledgeable Canadian doc who really knows what they're doing. And of course, that's difficult when it comes to melanoma. I know that Michael Smylie in Edmonton and David Hogg in Toronto are smart & creative Canadian oncologists.
cheers,
u.
-
- January 25, 2014 at 8:46 pm
One more thing — to answer POW's question about off-label use in Canada
(and, POW, can I take a moment to say how much I appreciate your steady stream of knowledgable, compassionate, and articulate replies? Boy, do I appreciate it, and I'm sure that others do, too).
I think that Canadian physicians actually have more flexibility around off-label prescribing, as long as the agents have Health Canada approval (no small caveat, since that approval sometimes comes months or years later than the American FDA approval. That can be a blessing — eg, thalidomide; but mostly a pain).
They are not as bound to the protocols of insurance companies (the government, as our 'insurance company' tends to give physicians a longer leash). But this is up to individual physicians, and so you to have an assertive, knowledgeable Canadian doc who really knows what they're doing. And of course, that's difficult when it comes to melanoma. I know that Michael Smylie in Edmonton and David Hogg in Toronto are smart & creative Canadian oncologists.
cheers,
u.
-
- January 26, 2014 at 5:48 pm
Thank you very much for your reply, it answers some of my questions. We are from Calgary as well, and Dave was the first patient accepted in the phase III trial in Edmonton. He had his first infusion on Nov. 1st. and he has his first scan on jan. 28th.
We know he is not going to be NED, he can feel one of the tumours still there so we would be extatic if his scan shows 45-50% reduction. The reason i'm doing some research now is he also started in the last week to feel a new growth in the right side of the lower abdomen, where we were not aware he had any tumours. So now we are even more anxoius for tuesday
We are very positive people, we are trying to do the best we can from a bad situation, and be prepared for the "what if" and all the curved balls that may be thrown our way. Doing the research is my part of the battle and its my coping mechanism.
I found your blog and read it all in one night at some point in November, and followed your jurney step by step, rooting for you. Thank you for allowing us to share your experience and being there for you, for good and for better!
Big hugs to you,
Maria
-
- January 26, 2014 at 5:48 pm
Thank you very much for your reply, it answers some of my questions. We are from Calgary as well, and Dave was the first patient accepted in the phase III trial in Edmonton. He had his first infusion on Nov. 1st. and he has his first scan on jan. 28th.
We know he is not going to be NED, he can feel one of the tumours still there so we would be extatic if his scan shows 45-50% reduction. The reason i'm doing some research now is he also started in the last week to feel a new growth in the right side of the lower abdomen, where we were not aware he had any tumours. So now we are even more anxoius for tuesday
We are very positive people, we are trying to do the best we can from a bad situation, and be prepared for the "what if" and all the curved balls that may be thrown our way. Doing the research is my part of the battle and its my coping mechanism.
I found your blog and read it all in one night at some point in November, and followed your jurney step by step, rooting for you. Thank you for allowing us to share your experience and being there for you, for good and for better!
Big hugs to you,
Maria
-
- January 26, 2014 at 5:48 pm
Thank you very much for your reply, it answers some of my questions. We are from Calgary as well, and Dave was the first patient accepted in the phase III trial in Edmonton. He had his first infusion on Nov. 1st. and he has his first scan on jan. 28th.
We know he is not going to be NED, he can feel one of the tumours still there so we would be extatic if his scan shows 45-50% reduction. The reason i'm doing some research now is he also started in the last week to feel a new growth in the right side of the lower abdomen, where we were not aware he had any tumours. So now we are even more anxoius for tuesday
We are very positive people, we are trying to do the best we can from a bad situation, and be prepared for the "what if" and all the curved balls that may be thrown our way. Doing the research is my part of the battle and its my coping mechanism.
I found your blog and read it all in one night at some point in November, and followed your jurney step by step, rooting for you. Thank you for allowing us to share your experience and being there for you, for good and for better!
Big hugs to you,
Maria
-
- January 25, 2014 at 8:34 pm
hi Maria,
I'm so sorry that you & your husband are needing to face this.
I'm a Canadian dealing with stage IV melanoma. (I live in Calgary with my family).
Back in July of this year, when I was seeking treatment, the anti-PD-1 agents were the most promising. (I think that's probably still the case).
I'd wanted to get into the three-arm phase III BMS trial (with Ipi & Nivo). But the Edmonton site (closest to me) wasn't recruiting until the fall, and I knew I probably didn't have that long to wait.
I had already had a consultation with Jedd Wolchok in New York back when I was in stage III, and so I contacted him, and ended up in the tail end of the phase I ipi-nivo trial. I've done well in that, but I have had to pay for all the scans & bloodwork, to the tune of more than 200 thousand Cdn. Hello, re-mortgaging.
So — if you can get into that ipi-nivo trial in Canada, then I think you've got the best of both worlds!!
As for the next step — I'm not sure that there IS a miracle next step for any of us, regardless of where we're living. I guess if the Nivo stops working for me, I would consider TIL at the NIH — and they do cover costs for international patients.
Good luck, good luck to you. Please keep us posted?
u.
-
- January 25, 2014 at 8:34 pm
hi Maria,
I'm so sorry that you & your husband are needing to face this.
I'm a Canadian dealing with stage IV melanoma. (I live in Calgary with my family).
Back in July of this year, when I was seeking treatment, the anti-PD-1 agents were the most promising. (I think that's probably still the case).
I'd wanted to get into the three-arm phase III BMS trial (with Ipi & Nivo). But the Edmonton site (closest to me) wasn't recruiting until the fall, and I knew I probably didn't have that long to wait.
I had already had a consultation with Jedd Wolchok in New York back when I was in stage III, and so I contacted him, and ended up in the tail end of the phase I ipi-nivo trial. I've done well in that, but I have had to pay for all the scans & bloodwork, to the tune of more than 200 thousand Cdn. Hello, re-mortgaging.
So — if you can get into that ipi-nivo trial in Canada, then I think you've got the best of both worlds!!
As for the next step — I'm not sure that there IS a miracle next step for any of us, regardless of where we're living. I guess if the Nivo stops working for me, I would consider TIL at the NIH — and they do cover costs for international patients.
Good luck, good luck to you. Please keep us posted?
u.
-
- January 25, 2014 at 5:02 am
Thank you for your reply, I am going to check out the MIF forum. Hopefully the scan will come back as stable or better and we don't have to worry, however, my question still needs to be asked and answered.
I am amazed at the lack of information specific for Canadians available on the internet, I know the sun only shines six times a year (just kidding), but people still get diagnosed with melanoma. I found the Canadian Cancer Society's web site, the only site that has links to clinical trials, it was last updated on December 2012!!! Hubby's trial started in October 2013, it wasn't even listed!
I will do my homework, I will make sure we are aware of all the options, but hope from the bottom of my heart the nivo /ipi works and I don't need any other treatment for the next 40 years!
-
- January 25, 2014 at 5:02 am
Thank you for your reply, I am going to check out the MIF forum. Hopefully the scan will come back as stable or better and we don't have to worry, however, my question still needs to be asked and answered.
I am amazed at the lack of information specific for Canadians available on the internet, I know the sun only shines six times a year (just kidding), but people still get diagnosed with melanoma. I found the Canadian Cancer Society's web site, the only site that has links to clinical trials, it was last updated on December 2012!!! Hubby's trial started in October 2013, it wasn't even listed!
I will do my homework, I will make sure we are aware of all the options, but hope from the bottom of my heart the nivo /ipi works and I don't need any other treatment for the next 40 years!
-
- January 25, 2014 at 2:46 am
Hi, Maria-
The ipi and/or nivo trial is a very good one, so please try your best to maintain a positive mental attitude unless and until you find out otherwise. After all, there is a good chance that the Jan 28th scans will give you some very good news!
I understand, however, the impulse to start to look for what might come next. I don't know much about the Canadian health care system and I hope others here can answer your questions more knowledgeably. However, I do know that both Tafinlar (dabrafenib) and Mekinist (MEK) were approved in Canada last summer. The combination works even better than either one alone and that might be a good option for your husband.
The combo has not yet been approved in Canada. Is it legal for a doctor to prescribe both drugs together in Canada (what we Americans call "off label" use)? In the States, it is legal for doctors to do that but our insurance companies will usually not pay for "off label" use– the patient has to pay. I do not know what is possible in Canada.
I hope and expect that your husband is responding to the ipi and/or nivo. If he's not, perhaps you can talk to your doctor about Tafinlar + Mekinist. And do also post this question on the Melanoma International Foundation forum– they have quite a few Canadian members.
-
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