› Forums › General Melanoma Community › Advice needed on adjuvant choices
- This topic has 33 replies, 8 voices, and was last updated 8 years, 10 months ago by
SOLE.
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- October 22, 2016 at 11:05 pm
In Canada, we are unfortunately behind what the FDA approves and thus I am faced with impossible choices in my view. As a reminder I am Stage 3b with "rare isolated cells" found in one node.
1) Interferon
2) CLND and access to 2 clinical trials: interferon-pembro or placebo-nivo (I think…)
3) Watch and wait
Am looking for your wisdom please.
- Replies
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- October 23, 2016 at 11:31 am
Hello SOLE.
Tough choice but, if it was mine to make, I'd go with CLND and clinical trial.
1) Interferon – from all that I've read, this just isn't really a good option for anyone. You basically feel like absolute crap for a year in the hopes of possibly extending the time to recurrence by a year.
2) CLND and clinical trials – of the three choices, I think this one's the better option. However, if you get into the Interferon or the placebo arm, then you haven't really gained anything.
3) Watch and wait – For some reason, this wording just makes me uncomfortable. What are we waiting for? Stage IV? No thanks, I want to do everything I can to NOT reach stage IV. I'd feel a bit better about it if the doctors said "wait and see" instead "watch and wait". At least then, I'd feel like we were waiting to see IF it advanced.
Please know that these are just my personal feelings. The bottom line is that you have to go with whichever choice you feel most comfortable with.
Good luck,
Ann
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- October 23, 2016 at 11:31 am
Hello SOLE.
Tough choice but, if it was mine to make, I'd go with CLND and clinical trial.
1) Interferon – from all that I've read, this just isn't really a good option for anyone. You basically feel like absolute crap for a year in the hopes of possibly extending the time to recurrence by a year.
2) CLND and clinical trials – of the three choices, I think this one's the better option. However, if you get into the Interferon or the placebo arm, then you haven't really gained anything.
3) Watch and wait – For some reason, this wording just makes me uncomfortable. What are we waiting for? Stage IV? No thanks, I want to do everything I can to NOT reach stage IV. I'd feel a bit better about it if the doctors said "wait and see" instead "watch and wait". At least then, I'd feel like we were waiting to see IF it advanced.
Please know that these are just my personal feelings. The bottom line is that you have to go with whichever choice you feel most comfortable with.
Good luck,
Ann
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- October 23, 2016 at 1:42 pm
Just to add one little point to what Ann talked about, there is no guarantee that you will get into the trial. Trials have limited # 's of spaces and they tend to fill up quickly. On the other hand with Melanoma in the last couple of years there has been a lot of new advances, with many new clinical trials being run at various locations. You might have to travel to get the one you want. Best Wishes!!!ED
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- October 23, 2016 at 1:42 pm
Just to add one little point to what Ann talked about, there is no guarantee that you will get into the trial. Trials have limited # 's of spaces and they tend to fill up quickly. On the other hand with Melanoma in the last couple of years there has been a lot of new advances, with many new clinical trials being run at various locations. You might have to travel to get the one you want. Best Wishes!!!ED
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- October 23, 2016 at 1:42 pm
Just to add one little point to what Ann talked about, there is no guarantee that you will get into the trial. Trials have limited # 's of spaces and they tend to fill up quickly. On the other hand with Melanoma in the last couple of years there has been a lot of new advances, with many new clinical trials being run at various locations. You might have to travel to get the one you want. Best Wishes!!!ED
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- October 23, 2016 at 11:31 am
Hello SOLE.
Tough choice but, if it was mine to make, I'd go with CLND and clinical trial.
1) Interferon – from all that I've read, this just isn't really a good option for anyone. You basically feel like absolute crap for a year in the hopes of possibly extending the time to recurrence by a year.
2) CLND and clinical trials – of the three choices, I think this one's the better option. However, if you get into the Interferon or the placebo arm, then you haven't really gained anything.
3) Watch and wait – For some reason, this wording just makes me uncomfortable. What are we waiting for? Stage IV? No thanks, I want to do everything I can to NOT reach stage IV. I'd feel a bit better about it if the doctors said "wait and see" instead "watch and wait". At least then, I'd feel like we were waiting to see IF it advanced.
Please know that these are just my personal feelings. The bottom line is that you have to go with whichever choice you feel most comfortable with.
Good luck,
Ann
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- October 23, 2016 at 2:21 pm
Hi Sole. I'm so sorry you're at this incredibly hard decision. This was mentally the hardest part of my treatment plan, and my heart goes out to you.
Many people in the US at stage 3 have the same choices as you. Even though Ipi is FDA approved, many institutions are not giving it to their stage 3 patients due to the side effect profile. So please don't feel as though you aren't getting the best treatment possible. If you aren't comfortable with your doctor's mannor and attitude, however, that's a whole different problem – and I highly suggest you find a team you feel comfortable with. Your health care team becomes your guide through some seriously tough times, so make sure you trust them.
As for your treatment choices, no one here can say what's best for you. As Ann said, YOU have to make this choice for yourself. Do your research and sleep on the decision. I've had both a CLND and been on PEG interferon, so if you'd like to see scar pictures and side effects, I've got lots of info on my blog. But do what will help you sleep at night. This is your journey. Look inside and do what's best for you.
Wishing you all the best,
Lauren
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- October 23, 2016 at 2:21 pm
Hi Sole. I'm so sorry you're at this incredibly hard decision. This was mentally the hardest part of my treatment plan, and my heart goes out to you.
Many people in the US at stage 3 have the same choices as you. Even though Ipi is FDA approved, many institutions are not giving it to their stage 3 patients due to the side effect profile. So please don't feel as though you aren't getting the best treatment possible. If you aren't comfortable with your doctor's mannor and attitude, however, that's a whole different problem – and I highly suggest you find a team you feel comfortable with. Your health care team becomes your guide through some seriously tough times, so make sure you trust them.
As for your treatment choices, no one here can say what's best for you. As Ann said, YOU have to make this choice for yourself. Do your research and sleep on the decision. I've had both a CLND and been on PEG interferon, so if you'd like to see scar pictures and side effects, I've got lots of info on my blog. But do what will help you sleep at night. This is your journey. Look inside and do what's best for you.
Wishing you all the best,
Lauren
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- October 23, 2016 at 2:21 pm
Hi Sole. I'm so sorry you're at this incredibly hard decision. This was mentally the hardest part of my treatment plan, and my heart goes out to you.
Many people in the US at stage 3 have the same choices as you. Even though Ipi is FDA approved, many institutions are not giving it to their stage 3 patients due to the side effect profile. So please don't feel as though you aren't getting the best treatment possible. If you aren't comfortable with your doctor's mannor and attitude, however, that's a whole different problem – and I highly suggest you find a team you feel comfortable with. Your health care team becomes your guide through some seriously tough times, so make sure you trust them.
As for your treatment choices, no one here can say what's best for you. As Ann said, YOU have to make this choice for yourself. Do your research and sleep on the decision. I've had both a CLND and been on PEG interferon, so if you'd like to see scar pictures and side effects, I've got lots of info on my blog. But do what will help you sleep at night. This is your journey. Look inside and do what's best for you.
Wishing you all the best,
Lauren
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- October 23, 2016 at 8:32 pm
Hi,
You need to find out more re the trials in order to make choices.
Staginginfo https://cancerstaging.org/references-tools/quickreferences/documents/melanomasmall.pdf
link to all canadian studies re melanoma but you would need to carefully look at inclusion/ exclusion criteria and work out if you would be happy with randomised treatment. also consider pros and cons of clnd if required .. but I think you might qualify as stage III due to findings in the lymph node.
Also consider how you would be reviewed if watch and wait. Some centres are looking at ultrasound to detect early changes in lymph nodes.. or would it be 3 monthly lymph node examinations ?
Good luck with your choices
Deb
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- October 23, 2016 at 8:32 pm
Hi,
You need to find out more re the trials in order to make choices.
Staginginfo https://cancerstaging.org/references-tools/quickreferences/documents/melanomasmall.pdf
link to all canadian studies re melanoma but you would need to carefully look at inclusion/ exclusion criteria and work out if you would be happy with randomised treatment. also consider pros and cons of clnd if required .. but I think you might qualify as stage III due to findings in the lymph node.
Also consider how you would be reviewed if watch and wait. Some centres are looking at ultrasound to detect early changes in lymph nodes.. or would it be 3 monthly lymph node examinations ?
Good luck with your choices
Deb
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- October 23, 2016 at 8:32 pm
Hi,
You need to find out more re the trials in order to make choices.
Staginginfo https://cancerstaging.org/references-tools/quickreferences/documents/melanomasmall.pdf
link to all canadian studies re melanoma but you would need to carefully look at inclusion/ exclusion criteria and work out if you would be happy with randomised treatment. also consider pros and cons of clnd if required .. but I think you might qualify as stage III due to findings in the lymph node.
Also consider how you would be reviewed if watch and wait. Some centres are looking at ultrasound to detect early changes in lymph nodes.. or would it be 3 monthly lymph node examinations ?
Good luck with your choices
Deb
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- October 24, 2016 at 6:00 pm
Sole,
I was diagnosed Stage 3a April 2016 and currently reside in Pennsylvania. I did not qualify for clinical trials because I only had 1 lymph node positive. I was offered interferon but I declined. I got a 2nd opinion with another melanoma specialist and recommended no treatment. I was not comfortable with no treatment and she then sent pre-authorization to my insurance for Yervoy at 3 mg rather than 10 mg. Had she not have gotten approval for 3 mg, I would have just watch and waited. Even though I have done Yervoy, there is no way to know if my body is a responder or not. Check out my profile for more information.
Good luck and know that I am thinking of you.
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- October 24, 2016 at 6:00 pm
Sole,
I was diagnosed Stage 3a April 2016 and currently reside in Pennsylvania. I did not qualify for clinical trials because I only had 1 lymph node positive. I was offered interferon but I declined. I got a 2nd opinion with another melanoma specialist and recommended no treatment. I was not comfortable with no treatment and she then sent pre-authorization to my insurance for Yervoy at 3 mg rather than 10 mg. Had she not have gotten approval for 3 mg, I would have just watch and waited. Even though I have done Yervoy, there is no way to know if my body is a responder or not. Check out my profile for more information.
Good luck and know that I am thinking of you.
-
- October 24, 2016 at 6:00 pm
Sole,
I was diagnosed Stage 3a April 2016 and currently reside in Pennsylvania. I did not qualify for clinical trials because I only had 1 lymph node positive. I was offered interferon but I declined. I got a 2nd opinion with another melanoma specialist and recommended no treatment. I was not comfortable with no treatment and she then sent pre-authorization to my insurance for Yervoy at 3 mg rather than 10 mg. Had she not have gotten approval for 3 mg, I would have just watch and waited. Even though I have done Yervoy, there is no way to know if my body is a responder or not. Check out my profile for more information.
Good luck and know that I am thinking of you.
-
- October 24, 2016 at 8:07 pm
Thanks Laulamb
I am sorry to see you are battling with two cancers at the same time.
As for the 3mg Yervoy, I'm afraid this is impossible where I live. I am in the Canadian health system and we are not offered any flexibility.
Your melanoma was relatively mild if I may say so. Mine compated to ypurs is twice as important. At least 2.85mm, Clark 4 , ulcerated. No other involvment of any kind locally. My WLE came back almost clear with clear margins, and 1 out of three nodes involved with "rare isolated cells" so somehow less than microscopic mets it seems. My onco surgeon said he did not operate further with CLND with such low tumor burden. Mind you I still need to see him and discuss all this face to face (my appt with him has been postponed three times so far… really unacceptable!) but as Ed said, you dont get in the clinical trials easily and I have a probable genetic condition with my patelets which I think will never get me in any clinical trials… at stage 3 at least.
So now I'm considering something completely different as adjuvant therapy. If my first 3 month set of scans are still clear and I'm still NED, I am looking at going to Sanoviv (natural health cancer therapies) just south of San Diego. True, it costs a lot of money, maybe 10k$/week but it's my life on the line and with the adjuvant choices before me, I want to do something pro active.
Any thoughts anyone? Good and bad…
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- October 25, 2016 at 4:36 am
Why go to Mexico for some very expensive unproven treatment? Why not find a clinical trial in the US with one of the proven drugs if your willing to spend big bucks? In trials the drug is paid for, you have to pay for scans and labs (exact details depend on trial criteria). Probably still can't get your ipi/nivo combo at your stage but maybe one of them as adjuvant. The few that have gone south who posted about it didn't find the cure they were seeking.
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- October 25, 2016 at 4:36 am
Why go to Mexico for some very expensive unproven treatment? Why not find a clinical trial in the US with one of the proven drugs if your willing to spend big bucks? In trials the drug is paid for, you have to pay for scans and labs (exact details depend on trial criteria). Probably still can't get your ipi/nivo combo at your stage but maybe one of them as adjuvant. The few that have gone south who posted about it didn't find the cure they were seeking.
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- October 25, 2016 at 1:39 pm
If any proven drug were available here in Canada for adjuvant stage 3 (other than interferon which is available but so controversial), I would jump on it! Unless I do the CLND (which is most probably overkill in my case) maybe then I can enter a clinical trial but i also have a patelets condition which I think will always be in the way. I still have to figure it out with the hemato onco team but this is what I am faced with.
Remember, I am looking at adjuvant treatment (given I still have clear scans) like high dose IV Vitamin C and others, everything to boost up my immune system.
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- October 25, 2016 at 1:39 pm
If any proven drug were available here in Canada for adjuvant stage 3 (other than interferon which is available but so controversial), I would jump on it! Unless I do the CLND (which is most probably overkill in my case) maybe then I can enter a clinical trial but i also have a patelets condition which I think will always be in the way. I still have to figure it out with the hemato onco team but this is what I am faced with.
Remember, I am looking at adjuvant treatment (given I still have clear scans) like high dose IV Vitamin C and others, everything to boost up my immune system.
-
- October 25, 2016 at 1:39 pm
If any proven drug were available here in Canada for adjuvant stage 3 (other than interferon which is available but so controversial), I would jump on it! Unless I do the CLND (which is most probably overkill in my case) maybe then I can enter a clinical trial but i also have a patelets condition which I think will always be in the way. I still have to figure it out with the hemato onco team but this is what I am faced with.
Remember, I am looking at adjuvant treatment (given I still have clear scans) like high dose IV Vitamin C and others, everything to boost up my immune system.
-
- October 25, 2016 at 4:36 am
Why go to Mexico for some very expensive unproven treatment? Why not find a clinical trial in the US with one of the proven drugs if your willing to spend big bucks? In trials the drug is paid for, you have to pay for scans and labs (exact details depend on trial criteria). Probably still can't get your ipi/nivo combo at your stage but maybe one of them as adjuvant. The few that have gone south who posted about it didn't find the cure they were seeking.
-
- October 24, 2016 at 8:07 pm
Thanks Laulamb
I am sorry to see you are battling with two cancers at the same time.
As for the 3mg Yervoy, I'm afraid this is impossible where I live. I am in the Canadian health system and we are not offered any flexibility.
Your melanoma was relatively mild if I may say so. Mine compated to ypurs is twice as important. At least 2.85mm, Clark 4 , ulcerated. No other involvment of any kind locally. My WLE came back almost clear with clear margins, and 1 out of three nodes involved with "rare isolated cells" so somehow less than microscopic mets it seems. My onco surgeon said he did not operate further with CLND with such low tumor burden. Mind you I still need to see him and discuss all this face to face (my appt with him has been postponed three times so far… really unacceptable!) but as Ed said, you dont get in the clinical trials easily and I have a probable genetic condition with my patelets which I think will never get me in any clinical trials… at stage 3 at least.
So now I'm considering something completely different as adjuvant therapy. If my first 3 month set of scans are still clear and I'm still NED, I am looking at going to Sanoviv (natural health cancer therapies) just south of San Diego. True, it costs a lot of money, maybe 10k$/week but it's my life on the line and with the adjuvant choices before me, I want to do something pro active.
Any thoughts anyone? Good and bad…
-
- October 24, 2016 at 8:07 pm
Thanks Laulamb
I am sorry to see you are battling with two cancers at the same time.
As for the 3mg Yervoy, I'm afraid this is impossible where I live. I am in the Canadian health system and we are not offered any flexibility.
Your melanoma was relatively mild if I may say so. Mine compated to ypurs is twice as important. At least 2.85mm, Clark 4 , ulcerated. No other involvment of any kind locally. My WLE came back almost clear with clear margins, and 1 out of three nodes involved with "rare isolated cells" so somehow less than microscopic mets it seems. My onco surgeon said he did not operate further with CLND with such low tumor burden. Mind you I still need to see him and discuss all this face to face (my appt with him has been postponed three times so far… really unacceptable!) but as Ed said, you dont get in the clinical trials easily and I have a probable genetic condition with my patelets which I think will never get me in any clinical trials… at stage 3 at least.
So now I'm considering something completely different as adjuvant therapy. If my first 3 month set of scans are still clear and I'm still NED, I am looking at going to Sanoviv (natural health cancer therapies) just south of San Diego. True, it costs a lot of money, maybe 10k$/week but it's my life on the line and with the adjuvant choices before me, I want to do something pro active.
Any thoughts anyone? Good and bad…
-
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