› Forums › General Melanoma Community › Feedback requested Stage 3 treatment
- This topic has 29 replies, 6 voices, and was last updated 7 years, 3 months ago by
NSNewf.
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- February 15, 2017 at 3:06 pm
I am currently waiting for a date for an L5A neck dissection. I met the oncologist yesterday and my treatment option is HDI or nothing. (I am Canadian). IPI and Pembro are only available at Stage 4. There is a possibility of a trial HDI or IPI or Pembro.
Assuming I don't upstage from 3a following dissection and the trial is not an option what is the feeling about HDI given the results from Sunbelt Trial that doing HDI does not have the prognosis any better by doing observation? Btw sitting at home not working while on HDI would drive me crazy
Thanks for any feedback. Sorry to hear you are going through this.
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- February 15, 2017 at 3:53 pm
Why are you ruling out the trial ?
Think that the stage 3 one goes investigator / patient choice of IPI/ interferon v pembrolizumab.
So, if investigator is willing to sign up to IPI think that is a better choice than interferon and time needed for treatment shorter… But it would be a win of you got pembro and that is 50 50.
Canada might be difficult tho as it may have to be choice of approived drug for stage v pembro in practice. Would ask loads of questions..like IPI dose in trial…details of per approval screening….and when you are told which arm of the trial you are randomised to…can't see that the trial can be blinded when there are such different dosing schedules for the various drugs. The trial rules are usually that you can drop out at any time . and don't need to give a reason. So by going the trial route you may be able to give yourself a watch and wait v pembro option.
Sorry I am not answering the questlion asked. Interferon seems not to be used much anymore in Europe as a standard treatment although there is some research interest in using it with other treatments. Stage 3 options here in the UK are limited to trials unless unresectable and then they treat as stage 4.
Best wishes for a rapid recovery from the neck dissection,
Deb
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- February 15, 2017 at 3:53 pm
Why are you ruling out the trial ?
Think that the stage 3 one goes investigator / patient choice of IPI/ interferon v pembrolizumab.
So, if investigator is willing to sign up to IPI think that is a better choice than interferon and time needed for treatment shorter… But it would be a win of you got pembro and that is 50 50.
Canada might be difficult tho as it may have to be choice of approived drug for stage v pembro in practice. Would ask loads of questions..like IPI dose in trial…details of per approval screening….and when you are told which arm of the trial you are randomised to…can't see that the trial can be blinded when there are such different dosing schedules for the various drugs. The trial rules are usually that you can drop out at any time . and don't need to give a reason. So by going the trial route you may be able to give yourself a watch and wait v pembro option.
Sorry I am not answering the questlion asked. Interferon seems not to be used much anymore in Europe as a standard treatment although there is some research interest in using it with other treatments. Stage 3 options here in the UK are limited to trials unless unresectable and then they treat as stage 4.
Best wishes for a rapid recovery from the neck dissection,
Deb
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- February 15, 2017 at 6:45 pm
Hello again,
You may find the main trial centre can arrange for infusions to be carried out more locally.
Manchester UK trial centre offered my infusions to be done in Preston hospital_the local skincancer centre but this might only have been possible due to staff having previously worked together. This was a stage 3 trial pembro v placebo and I did stay with Manchester as did not want to have to argue my way back invade of progression. Should be same sponsor. If you search clinical trials.gov for melanoma open trials etc you should find the trial but also your oncologist should be able to get you a letter detailing the trial rules etc . just be earned .. You get the offer one day but there is a compulsory24 hr gap before you can sign a witnessed consent with the doc.. Which is a pain in the neck with travel. Also,trial prob needs to start within 3 months of surgery and you need to heal get through screening scans etc .Start can be delayed if queries arise on ct scans or infections arise etc I ended up with first infusion 1 day before time out…if you are seriously considering the trial getting answers asap is worth doing so you can get going as soon as recovery allows.
Best wishes
Deb
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- February 15, 2017 at 6:45 pm
Hello again,
You may find the main trial centre can arrange for infusions to be carried out more locally.
Manchester UK trial centre offered my infusions to be done in Preston hospital_the local skincancer centre but this might only have been possible due to staff having previously worked together. This was a stage 3 trial pembro v placebo and I did stay with Manchester as did not want to have to argue my way back invade of progression. Should be same sponsor. If you search clinical trials.gov for melanoma open trials etc you should find the trial but also your oncologist should be able to get you a letter detailing the trial rules etc . just be earned .. You get the offer one day but there is a compulsory24 hr gap before you can sign a witnessed consent with the doc.. Which is a pain in the neck with travel. Also,trial prob needs to start within 3 months of surgery and you need to heal get through screening scans etc .Start can be delayed if queries arise on ct scans or infections arise etc I ended up with first infusion 1 day before time out…if you are seriously considering the trial getting answers asap is worth doing so you can get going as soon as recovery allows.
Best wishes
Deb
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- February 15, 2017 at 6:45 pm
Hello again,
You may find the main trial centre can arrange for infusions to be carried out more locally.
Manchester UK trial centre offered my infusions to be done in Preston hospital_the local skincancer centre but this might only have been possible due to staff having previously worked together. This was a stage 3 trial pembro v placebo and I did stay with Manchester as did not want to have to argue my way back invade of progression. Should be same sponsor. If you search clinical trials.gov for melanoma open trials etc you should find the trial but also your oncologist should be able to get you a letter detailing the trial rules etc . just be earned .. You get the offer one day but there is a compulsory24 hr gap before you can sign a witnessed consent with the doc.. Which is a pain in the neck with travel. Also,trial prob needs to start within 3 months of surgery and you need to heal get through screening scans etc .Start can be delayed if queries arise on ct scans or infections arise etc I ended up with first infusion 1 day before time out…if you are seriously considering the trial getting answers asap is worth doing so you can get going as soon as recovery allows.
Best wishes
Deb
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- February 15, 2017 at 3:53 pm
Why are you ruling out the trial ?
Think that the stage 3 one goes investigator / patient choice of IPI/ interferon v pembrolizumab.
So, if investigator is willing to sign up to IPI think that is a better choice than interferon and time needed for treatment shorter… But it would be a win of you got pembro and that is 50 50.
Canada might be difficult tho as it may have to be choice of approived drug for stage v pembro in practice. Would ask loads of questions..like IPI dose in trial…details of per approval screening….and when you are told which arm of the trial you are randomised to…can't see that the trial can be blinded when there are such different dosing schedules for the various drugs. The trial rules are usually that you can drop out at any time . and don't need to give a reason. So by going the trial route you may be able to give yourself a watch and wait v pembro option.
Sorry I am not answering the questlion asked. Interferon seems not to be used much anymore in Europe as a standard treatment although there is some research interest in using it with other treatments. Stage 3 options here in the UK are limited to trials unless unresectable and then they treat as stage 4.
Best wishes for a rapid recovery from the neck dissection,
Deb
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- February 15, 2017 at 3:59 pm
Why would you put yourself through HDI if, as you said, it shows no better numbers than observation? It's not an easy treatment. Having said that, if you participate in the trial, you have a 2/3 chance of getting something better. Depending upon your personal view, at least if you did HDI in the trial, your treatment is of benefit to others as your data is correlated with the other treatments. Science benefits but you may not get much. My personal take is I would not do HDI outside a trial. It's a crap shoot if you join the trial and get HDI. As a side note, there are many who have worked through HDI. They would work in the morning, do the infusion later in the day, go home and sleep it off.
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- February 15, 2017 at 3:59 pm
Why would you put yourself through HDI if, as you said, it shows no better numbers than observation? It's not an easy treatment. Having said that, if you participate in the trial, you have a 2/3 chance of getting something better. Depending upon your personal view, at least if you did HDI in the trial, your treatment is of benefit to others as your data is correlated with the other treatments. Science benefits but you may not get much. My personal take is I would not do HDI outside a trial. It's a crap shoot if you join the trial and get HDI. As a side note, there are many who have worked through HDI. They would work in the morning, do the infusion later in the day, go home and sleep it off.
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- February 15, 2017 at 3:59 pm
Why would you put yourself through HDI if, as you said, it shows no better numbers than observation? It's not an easy treatment. Having said that, if you participate in the trial, you have a 2/3 chance of getting something better. Depending upon your personal view, at least if you did HDI in the trial, your treatment is of benefit to others as your data is correlated with the other treatments. Science benefits but you may not get much. My personal take is I would not do HDI outside a trial. It's a crap shoot if you join the trial and get HDI. As a side note, there are many who have worked through HDI. They would work in the morning, do the infusion later in the day, go home and sleep it off.
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- February 15, 2017 at 4:56 pm
Interferon has proven to be no better than observation. So, if you don't get into the trial, do observation. There is absolutely no reason to make yourself very sick for an entire year with side effects that include depression and suicide, it's a nasty drug. Lots of stage 3a folks have stayed 3a and never progressed, so don't fear observation if that's your only option.
All the best,
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- February 15, 2017 at 4:56 pm
Interferon has proven to be no better than observation. So, if you don't get into the trial, do observation. There is absolutely no reason to make yourself very sick for an entire year with side effects that include depression and suicide, it's a nasty drug. Lots of stage 3a folks have stayed 3a and never progressed, so don't fear observation if that's your only option.
All the best,
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- February 15, 2017 at 4:56 pm
Interferon has proven to be no better than observation. So, if you don't get into the trial, do observation. There is absolutely no reason to make yourself very sick for an entire year with side effects that include depression and suicide, it's a nasty drug. Lots of stage 3a folks have stayed 3a and never progressed, so don't fear observation if that's your only option.
All the best,
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- February 16, 2017 at 2:39 am
Go for the trial since as Deb writes, most likely if you dont get pembro you can choose between ipi and interferon. If you cannot choose then as one respondent wrote, if you are on interferon then you might benefit (not clear) but fellow sufferers may benefit, also you will be in the trial so i guess supervised closely.
wihen you say two hours do you mean two hours drive? I would do that for ipi/pembro, easily. Early warriors (bubbles) had to take flights for their trials, with incredible results.
good luck!!!!
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- February 16, 2017 at 2:39 am
Go for the trial since as Deb writes, most likely if you dont get pembro you can choose between ipi and interferon. If you cannot choose then as one respondent wrote, if you are on interferon then you might benefit (not clear) but fellow sufferers may benefit, also you will be in the trial so i guess supervised closely.
wihen you say two hours do you mean two hours drive? I would do that for ipi/pembro, easily. Early warriors (bubbles) had to take flights for their trials, with incredible results.
good luck!!!!
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- February 16, 2017 at 6:20 am
I am also stage 3a and live in Canada. I was offered the same trial, I believe, comparing HDI to Pembro. IPI is not yet approved in Canada for stage 3 so it wasn't offered in this trial as standard of care. Therefore given a 50/50 chance of getting the newer drug, Pembro, I entered the trial. Unfortunately I drew the HDI arm. I only made it through 5 days of HDI as I couldn't handle the side effects. So now I'm being watched closely and am feeling like this is a good path forward for now. Needless to say, if I were you I'd go for the trial and hope you get on pembro. Tough call I know.
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- February 16, 2017 at 6:20 am
I am also stage 3a and live in Canada. I was offered the same trial, I believe, comparing HDI to Pembro. IPI is not yet approved in Canada for stage 3 so it wasn't offered in this trial as standard of care. Therefore given a 50/50 chance of getting the newer drug, Pembro, I entered the trial. Unfortunately I drew the HDI arm. I only made it through 5 days of HDI as I couldn't handle the side effects. So now I'm being watched closely and am feeling like this is a good path forward for now. Needless to say, if I were you I'd go for the trial and hope you get on pembro. Tough call I know.
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