› Forums › General Melanoma Community › Ethics of clinical trial participation
- This topic has 48 replies, 10 voices, and was last updated 12 years, 6 months ago by
Hereiam.
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- November 1, 2011 at 9:01 pm
We have an opportunity to participate in a clinical trial–ipi v. interferon.
We decided before knowing we could be in a trial that we don't want interferon, but we want to do something. From all of the research we have done, including this blog, first and second medical opinions, friends and family we made a decision. We think/hope that ipi gives us the best chance.
We have an opportunity to participate in a clinical trial–ipi v. interferon.
We decided before knowing we could be in a trial that we don't want interferon, but we want to do something. From all of the research we have done, including this blog, first and second medical opinions, friends and family we made a decision. We think/hope that ipi gives us the best chance.
Clearly, it is our right to change our mind at anytime. The informed consent form makes it clear in bold letters on the front page. But since we have already made our decision, is it right. One doctor acquintance says he'd do it in a heartbeat, the clinical trial NP made it clear we needed to commit, and stick to the groundrules–Arm A or Arm B.
Life or death, black or white or gray. Right or wrong. What would you do if you were making the decision for your kid?
- Replies
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- November 1, 2011 at 10:08 pm
Since we don't know the status of your child – specifically melanoma stage, surgeries performed, age, etc – it is impossible to say what we might to in your shoes.
Mary
Stage 3
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- November 1, 2011 at 10:49 pm
Sorry for being so vague. Here are the pertinent details.
Stage 3b: Ulcerated melanoma, sentinel biopsy showed 2 of 3 nodes with melanoma. High mitosis rate. 10 lymph nodes removed from groin, all clear. High risk.
Thanks for sharing your opinion.
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- November 1, 2011 at 11:05 pm
For me the biggest inputs into making your choice would be to know your alternatives. So if you really want ipi, are there other options for you to be able to get that treatment for your child? What were the main reasons for choosing not to do interferon and would you reconsider if that were the only option? If you get the 'wrong' arm of the trial and decide to drop out, what's the plan for next steps? And would the fact that you dropped out affect your possible options thereafter?
Sorry to answer questions with questions, but those would be the questions I would make sure I'd explored before making the choice of what was the 'right' thing to do in your situation. And framing it as right or wrong is probably not really relevant anyhow, because all of this is gray in my opinion and each new piece of information changes everything again. You do what you believe is right for your child given the knowledge and priorities you have right now. Just make sure you've explored all the alternative options as much as possible before making that choice. And then don't look back, because hindsight is never the same.
In principle I believe in clinical trials (I'm on one myself) and what they do to help advance medical knowledge. But when it comes down to the treatment undergone by you or your child and the way that affects your very personal future, it's not always possible or even desirable to stick with principles.
Just my two cents worth, since you asked for opinions. But what do I really know??
Best of luck to you and your child, whatever you decide to do.
Elisa
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- November 1, 2011 at 11:05 pm
For me the biggest inputs into making your choice would be to know your alternatives. So if you really want ipi, are there other options for you to be able to get that treatment for your child? What were the main reasons for choosing not to do interferon and would you reconsider if that were the only option? If you get the 'wrong' arm of the trial and decide to drop out, what's the plan for next steps? And would the fact that you dropped out affect your possible options thereafter?
Sorry to answer questions with questions, but those would be the questions I would make sure I'd explored before making the choice of what was the 'right' thing to do in your situation. And framing it as right or wrong is probably not really relevant anyhow, because all of this is gray in my opinion and each new piece of information changes everything again. You do what you believe is right for your child given the knowledge and priorities you have right now. Just make sure you've explored all the alternative options as much as possible before making that choice. And then don't look back, because hindsight is never the same.
In principle I believe in clinical trials (I'm on one myself) and what they do to help advance medical knowledge. But when it comes down to the treatment undergone by you or your child and the way that affects your very personal future, it's not always possible or even desirable to stick with principles.
Just my two cents worth, since you asked for opinions. But what do I really know??
Best of luck to you and your child, whatever you decide to do.
Elisa
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- November 2, 2011 at 12:12 pm
Thank you for sharing your opinion. Our oncologist told us that the options we 1) wait and see 2) pegylated interferon or 3) clinical trial–interferon v ipi which just opened here today. From the research we have done which I believe to be pretty comprehensive, we decided to pass on Interferon. From the 5 doctors we have spoken to, as patient and as friends, they all want us to do something. So, from our perspective, that leaves ipi.
Since this is what we want to do, perhaps our recent luck will change and we'll get in this without having to pull out of the trial. We understand ipi is not proven, but it seems to have a foot in the future where interferon doesn't. As the doctor said yesterday, if interferon made a 50% difference, it would be a no-brainer. Couldn't agree more.
All of the comments have clarified the issue and empowered us to go for it.
We'll let you know how we make out.
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- November 2, 2011 at 12:12 pm
Thank you for sharing your opinion. Our oncologist told us that the options we 1) wait and see 2) pegylated interferon or 3) clinical trial–interferon v ipi which just opened here today. From the research we have done which I believe to be pretty comprehensive, we decided to pass on Interferon. From the 5 doctors we have spoken to, as patient and as friends, they all want us to do something. So, from our perspective, that leaves ipi.
Since this is what we want to do, perhaps our recent luck will change and we'll get in this without having to pull out of the trial. We understand ipi is not proven, but it seems to have a foot in the future where interferon doesn't. As the doctor said yesterday, if interferon made a 50% difference, it would be a no-brainer. Couldn't agree more.
All of the comments have clarified the issue and empowered us to go for it.
We'll let you know how we make out.
-
- November 2, 2011 at 12:12 pm
Thank you for sharing your opinion. Our oncologist told us that the options we 1) wait and see 2) pegylated interferon or 3) clinical trial–interferon v ipi which just opened here today. From the research we have done which I believe to be pretty comprehensive, we decided to pass on Interferon. From the 5 doctors we have spoken to, as patient and as friends, they all want us to do something. So, from our perspective, that leaves ipi.
Since this is what we want to do, perhaps our recent luck will change and we'll get in this without having to pull out of the trial. We understand ipi is not proven, but it seems to have a foot in the future where interferon doesn't. As the doctor said yesterday, if interferon made a 50% difference, it would be a no-brainer. Couldn't agree more.
All of the comments have clarified the issue and empowered us to go for it.
We'll let you know how we make out.
-
- November 1, 2011 at 11:05 pm
For me the biggest inputs into making your choice would be to know your alternatives. So if you really want ipi, are there other options for you to be able to get that treatment for your child? What were the main reasons for choosing not to do interferon and would you reconsider if that were the only option? If you get the 'wrong' arm of the trial and decide to drop out, what's the plan for next steps? And would the fact that you dropped out affect your possible options thereafter?
Sorry to answer questions with questions, but those would be the questions I would make sure I'd explored before making the choice of what was the 'right' thing to do in your situation. And framing it as right or wrong is probably not really relevant anyhow, because all of this is gray in my opinion and each new piece of information changes everything again. You do what you believe is right for your child given the knowledge and priorities you have right now. Just make sure you've explored all the alternative options as much as possible before making that choice. And then don't look back, because hindsight is never the same.
In principle I believe in clinical trials (I'm on one myself) and what they do to help advance medical knowledge. But when it comes down to the treatment undergone by you or your child and the way that affects your very personal future, it's not always possible or even desirable to stick with principles.
Just my two cents worth, since you asked for opinions. But what do I really know??
Best of luck to you and your child, whatever you decide to do.
Elisa
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- November 1, 2011 at 10:49 pm
Sorry for being so vague. Here are the pertinent details.
Stage 3b: Ulcerated melanoma, sentinel biopsy showed 2 of 3 nodes with melanoma. High mitosis rate. 10 lymph nodes removed from groin, all clear. High risk.
Thanks for sharing your opinion.
-
- November 1, 2011 at 10:49 pm
Sorry for being so vague. Here are the pertinent details.
Stage 3b: Ulcerated melanoma, sentinel biopsy showed 2 of 3 nodes with melanoma. High mitosis rate. 10 lymph nodes removed from groin, all clear. High risk.
Thanks for sharing your opinion.
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- November 2, 2011 at 12:51 am
My husband just faced a similar decision when he entered the same trial. After talking with five different doctors, we realized our only real choice was to enter this trial. Like you, he initially planned to drop out if he was given Interferon; we even had one of the doctors we met with suggest this approach. While I don't think this would have been entirely ethical, I also felt like it was his only choice to balance QOL with a chance at long term survival. In my husbands case, he ultimately decided to give Interferon a shot, and see how bad his side effects were as that was our primary concern with the treatment. I am still struggling with whether or not it's worth it every day, but I also try to remind myself that the extra time that Interferon could buy him until the next relapse, may be long enough for new drugs to be approved in both the adjuvant and metastatic setting.
FWIW, I'm pretty sure there are a lot of people opting to drop out when not given ipi. I've heard of 6 different people in the trial so far and all of them got Interferon. I initially believed the odds were 50-50, but the numbers don't add up at this point. Then again, someone has to get on the other side eventually. As for other options, I assume your child has already undergone a completion dissection. However, I believe there is a trial in Pittsburgh looking at the efficacy of Ipi in the adjuvant setting before or after completion dissection. I really wish I knew about it at the time…
Also, before entering the trial, I would try to find out whether or not this would influence entry into other trials. I am fairly certain this wouldn't influence anything if the patient simply couldn't tolerate the side effects; however, never undergoing any treatment may hinder him/her from entering future trials. Best of luck with your decision. In the end, please remember it is not about pleasing other people. It is about saving lives.
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- November 2, 2011 at 12:51 am
My husband just faced a similar decision when he entered the same trial. After talking with five different doctors, we realized our only real choice was to enter this trial. Like you, he initially planned to drop out if he was given Interferon; we even had one of the doctors we met with suggest this approach. While I don't think this would have been entirely ethical, I also felt like it was his only choice to balance QOL with a chance at long term survival. In my husbands case, he ultimately decided to give Interferon a shot, and see how bad his side effects were as that was our primary concern with the treatment. I am still struggling with whether or not it's worth it every day, but I also try to remind myself that the extra time that Interferon could buy him until the next relapse, may be long enough for new drugs to be approved in both the adjuvant and metastatic setting.
FWIW, I'm pretty sure there are a lot of people opting to drop out when not given ipi. I've heard of 6 different people in the trial so far and all of them got Interferon. I initially believed the odds were 50-50, but the numbers don't add up at this point. Then again, someone has to get on the other side eventually. As for other options, I assume your child has already undergone a completion dissection. However, I believe there is a trial in Pittsburgh looking at the efficacy of Ipi in the adjuvant setting before or after completion dissection. I really wish I knew about it at the time…
Also, before entering the trial, I would try to find out whether or not this would influence entry into other trials. I am fairly certain this wouldn't influence anything if the patient simply couldn't tolerate the side effects; however, never undergoing any treatment may hinder him/her from entering future trials. Best of luck with your decision. In the end, please remember it is not about pleasing other people. It is about saving lives.
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- November 2, 2011 at 12:51 am
My husband just faced a similar decision when he entered the same trial. After talking with five different doctors, we realized our only real choice was to enter this trial. Like you, he initially planned to drop out if he was given Interferon; we even had one of the doctors we met with suggest this approach. While I don't think this would have been entirely ethical, I also felt like it was his only choice to balance QOL with a chance at long term survival. In my husbands case, he ultimately decided to give Interferon a shot, and see how bad his side effects were as that was our primary concern with the treatment. I am still struggling with whether or not it's worth it every day, but I also try to remind myself that the extra time that Interferon could buy him until the next relapse, may be long enough for new drugs to be approved in both the adjuvant and metastatic setting.
FWIW, I'm pretty sure there are a lot of people opting to drop out when not given ipi. I've heard of 6 different people in the trial so far and all of them got Interferon. I initially believed the odds were 50-50, but the numbers don't add up at this point. Then again, someone has to get on the other side eventually. As for other options, I assume your child has already undergone a completion dissection. However, I believe there is a trial in Pittsburgh looking at the efficacy of Ipi in the adjuvant setting before or after completion dissection. I really wish I knew about it at the time…
Also, before entering the trial, I would try to find out whether or not this would influence entry into other trials. I am fairly certain this wouldn't influence anything if the patient simply couldn't tolerate the side effects; however, never undergoing any treatment may hinder him/her from entering future trials. Best of luck with your decision. In the end, please remember it is not about pleasing other people. It is about saving lives.
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- November 2, 2011 at 2:18 am
Hi, very sorry that you are forced into this situation. I definitely think it would be ethical to drop out of the trial if you're not in the ipi arm. In a situation where it's already known which drug people prefer (no one who prefers interferon would voluntarily enter the trial, by definition), the trial itself is highly unethical. That is, the argument could be made that some patients might suffer for the greater good if it were truly the case that one treatment was not known to be preferable to the other. But it seems immoral to put a "subject" in the position of feeling obliged to take a highly toxic drug (that is at this point an artificially sustained "standard of care"), i.e. people who want to take interferon should take it; no one else should be steered by a medical study into doing so.
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- November 2, 2011 at 2:18 am
Hi, very sorry that you are forced into this situation. I definitely think it would be ethical to drop out of the trial if you're not in the ipi arm. In a situation where it's already known which drug people prefer (no one who prefers interferon would voluntarily enter the trial, by definition), the trial itself is highly unethical. That is, the argument could be made that some patients might suffer for the greater good if it were truly the case that one treatment was not known to be preferable to the other. But it seems immoral to put a "subject" in the position of feeling obliged to take a highly toxic drug (that is at this point an artificially sustained "standard of care"), i.e. people who want to take interferon should take it; no one else should be steered by a medical study into doing so.
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- November 2, 2011 at 2:18 am
Hi, very sorry that you are forced into this situation. I definitely think it would be ethical to drop out of the trial if you're not in the ipi arm. In a situation where it's already known which drug people prefer (no one who prefers interferon would voluntarily enter the trial, by definition), the trial itself is highly unethical. That is, the argument could be made that some patients might suffer for the greater good if it were truly the case that one treatment was not known to be preferable to the other. But it seems immoral to put a "subject" in the position of feeling obliged to take a highly toxic drug (that is at this point an artificially sustained "standard of care"), i.e. people who want to take interferon should take it; no one else should be steered by a medical study into doing so.
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- November 2, 2011 at 2:18 am
Hi, very sorry that you are forced into this situation. I definitely think it would be ethical to drop out of the trial if you're not in the ipi arm. In a situation where it's already known which drug people prefer (no one who prefers interferon would voluntarily enter the trial, by definition), the trial itself is highly unethical. That is, the argument could be made that some patients might suffer for the greater good if it were truly the case that one treatment was not known to be preferable to the other. But it seems immoral to put a "subject" in the position of feeling obliged to take a highly toxic drug (that is at this point an artificially sustained "standard of care"), i.e. people who want to take interferon should take it; no one else should be steered by a medical study into doing so.
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- November 2, 2011 at 2:18 am
Hi, very sorry that you are forced into this situation. I definitely think it would be ethical to drop out of the trial if you're not in the ipi arm. In a situation where it's already known which drug people prefer (no one who prefers interferon would voluntarily enter the trial, by definition), the trial itself is highly unethical. That is, the argument could be made that some patients might suffer for the greater good if it were truly the case that one treatment was not known to be preferable to the other. But it seems immoral to put a "subject" in the position of feeling obliged to take a highly toxic drug (that is at this point an artificially sustained "standard of care"), i.e. people who want to take interferon should take it; no one else should be steered by a medical study into doing so.
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- November 2, 2011 at 2:18 am
Hi, very sorry that you are forced into this situation. I definitely think it would be ethical to drop out of the trial if you're not in the ipi arm. In a situation where it's already known which drug people prefer (no one who prefers interferon would voluntarily enter the trial, by definition), the trial itself is highly unethical. That is, the argument could be made that some patients might suffer for the greater good if it were truly the case that one treatment was not known to be preferable to the other. But it seems immoral to put a "subject" in the position of feeling obliged to take a highly toxic drug (that is at this point an artificially sustained "standard of care"), i.e. people who want to take interferon should take it; no one else should be steered by a medical study into doing so.
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- November 2, 2011 at 2:48 am
I am not knocking clinical trials in any way, but know what they are : Scientific experiments that use human beings as test subjects".
I get all the altruistic elements, path for others in the future and all that and endorse that research value; but for the patient in the throws of disease my first statement applies as a matter of context..
First and foremost, we all want to save our own ass, right now, and absent other options, ' THAT is why we do clinical trials.
One can quit a trial at any time. ANY time.
I have never been placed to make a decision for another, only advise. There are others here who have.
I would say though, no matter the age, it is their chance and therefore their choice.
To the degree of understanding of that by all, let that be a guide.
Cheers,
Charlie S
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- November 2, 2011 at 8:27 pm
Thanks for the feedback Charlie. I agree that clinical trials are scientific experiments that use human beings as test subjects. Look no further than the increase in dosage from the standard 3mg to 10 in the stage 3 ipi trial. I guess the idea is to see how far they can push the toxic needle. Anyway, we have a lot of things to to weigh in making a decision, but my guess is we will go forward with the ipi trial. If we don't make it. We'll watch and wait for the next big thing. Best to you
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- November 2, 2011 at 8:27 pm
Thanks for the feedback Charlie. I agree that clinical trials are scientific experiments that use human beings as test subjects. Look no further than the increase in dosage from the standard 3mg to 10 in the stage 3 ipi trial. I guess the idea is to see how far they can push the toxic needle. Anyway, we have a lot of things to to weigh in making a decision, but my guess is we will go forward with the ipi trial. If we don't make it. We'll watch and wait for the next big thing. Best to you
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- November 2, 2011 at 8:27 pm
Thanks for the feedback Charlie. I agree that clinical trials are scientific experiments that use human beings as test subjects. Look no further than the increase in dosage from the standard 3mg to 10 in the stage 3 ipi trial. I guess the idea is to see how far they can push the toxic needle. Anyway, we have a lot of things to to weigh in making a decision, but my guess is we will go forward with the ipi trial. If we don't make it. We'll watch and wait for the next big thing. Best to you
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- November 2, 2011 at 2:48 am
I am not knocking clinical trials in any way, but know what they are : Scientific experiments that use human beings as test subjects".
I get all the altruistic elements, path for others in the future and all that and endorse that research value; but for the patient in the throws of disease my first statement applies as a matter of context..
First and foremost, we all want to save our own ass, right now, and absent other options, ' THAT is why we do clinical trials.
One can quit a trial at any time. ANY time.
I have never been placed to make a decision for another, only advise. There are others here who have.
I would say though, no matter the age, it is their chance and therefore their choice.
To the degree of understanding of that by all, let that be a guide.
Cheers,
Charlie S
-
- November 2, 2011 at 2:48 am
I am not knocking clinical trials in any way, but know what they are : Scientific experiments that use human beings as test subjects".
I get all the altruistic elements, path for others in the future and all that and endorse that research value; but for the patient in the throws of disease my first statement applies as a matter of context..
First and foremost, we all want to save our own ass, right now, and absent other options, ' THAT is why we do clinical trials.
One can quit a trial at any time. ANY time.
I have never been placed to make a decision for another, only advise. There are others here who have.
I would say though, no matter the age, it is their chance and therefore their choice.
To the degree of understanding of that by all, let that be a guide.
Cheers,
Charlie S
-
- November 2, 2011 at 5:19 am
I was dx as stage 3 in June, 2000. I had micromets in my Sentinel node and the remaining 17 nodes were clean. My choices of treatment at the time were a double blinded study and Interferon. I was 34 at the time with a 7 & 5 year old. I wouldn't take the chance of a trial as I knew I would never forgive myself if mm returned and I had not done what was FDA approved. I thought it was great that people were willing to do trials to help find out what works and what doesn't. I still do think that. If I would have known about any "better" options, I might have tried them but these were the only two choices my doctor gave me. I didn't find this BB until after I had started my treatment. I certainly have always encouraged people to look into other treatments and decide what is best for them. Once you do decide on a treatment, always stand behind it 110% and never look back.
The reason for my post is to let you know that I did go through the entire year of Interferon with a few but tolerable and managable side effects. I continued to work my 30 hours a week as an accountant and keep up with my kids schedules. I am VERY happy to say that this past June I reached the NED mark of ELEVEN years!! And am still doing fine as of today. Was the LND what made me NED? Was it Interferon? Was it a combination? I'll never know. I really don't care. I just like to let people know that although Interferon can be horrible for many, it also is ok for many too. A lot of those people who have stayed NED after taking Interferon may not still be active on the BB.
If I can be of any assistance, please feel free to contact me directly @ [email protected]. Your family will be in my thoughts and prayers. As a mom, I can't imagine watching my child go through anything related to mm. I was always glad I was the patient. Best of luck to all of you!
Take care!
Cara Tindell
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- November 2, 2011 at 5:19 am
I was dx as stage 3 in June, 2000. I had micromets in my Sentinel node and the remaining 17 nodes were clean. My choices of treatment at the time were a double blinded study and Interferon. I was 34 at the time with a 7 & 5 year old. I wouldn't take the chance of a trial as I knew I would never forgive myself if mm returned and I had not done what was FDA approved. I thought it was great that people were willing to do trials to help find out what works and what doesn't. I still do think that. If I would have known about any "better" options, I might have tried them but these were the only two choices my doctor gave me. I didn't find this BB until after I had started my treatment. I certainly have always encouraged people to look into other treatments and decide what is best for them. Once you do decide on a treatment, always stand behind it 110% and never look back.
The reason for my post is to let you know that I did go through the entire year of Interferon with a few but tolerable and managable side effects. I continued to work my 30 hours a week as an accountant and keep up with my kids schedules. I am VERY happy to say that this past June I reached the NED mark of ELEVEN years!! And am still doing fine as of today. Was the LND what made me NED? Was it Interferon? Was it a combination? I'll never know. I really don't care. I just like to let people know that although Interferon can be horrible for many, it also is ok for many too. A lot of those people who have stayed NED after taking Interferon may not still be active on the BB.
If I can be of any assistance, please feel free to contact me directly @ [email protected]. Your family will be in my thoughts and prayers. As a mom, I can't imagine watching my child go through anything related to mm. I was always glad I was the patient. Best of luck to all of you!
Take care!
Cara Tindell
-
- November 2, 2011 at 5:19 am
I was dx as stage 3 in June, 2000. I had micromets in my Sentinel node and the remaining 17 nodes were clean. My choices of treatment at the time were a double blinded study and Interferon. I was 34 at the time with a 7 & 5 year old. I wouldn't take the chance of a trial as I knew I would never forgive myself if mm returned and I had not done what was FDA approved. I thought it was great that people were willing to do trials to help find out what works and what doesn't. I still do think that. If I would have known about any "better" options, I might have tried them but these were the only two choices my doctor gave me. I didn't find this BB until after I had started my treatment. I certainly have always encouraged people to look into other treatments and decide what is best for them. Once you do decide on a treatment, always stand behind it 110% and never look back.
The reason for my post is to let you know that I did go through the entire year of Interferon with a few but tolerable and managable side effects. I continued to work my 30 hours a week as an accountant and keep up with my kids schedules. I am VERY happy to say that this past June I reached the NED mark of ELEVEN years!! And am still doing fine as of today. Was the LND what made me NED? Was it Interferon? Was it a combination? I'll never know. I really don't care. I just like to let people know that although Interferon can be horrible for many, it also is ok for many too. A lot of those people who have stayed NED after taking Interferon may not still be active on the BB.
If I can be of any assistance, please feel free to contact me directly @ [email protected]. Your family will be in my thoughts and prayers. As a mom, I can't imagine watching my child go through anything related to mm. I was always glad I was the patient. Best of luck to all of you!
Take care!
Cara Tindell
-
- November 2, 2011 at 10:51 am
I'm so sorry to hear that you have to make this decision. The truth is, there really is no right or wrong answer. When my husband was diagnosed, Interferon was the only option. It kept him NED for 2 1/2 years. Nobody will ever know if the Interferon was what kept him NED or the LND, or if it was just the natural progression of disease and NONE of it worked. But he knows that he made the best decision for HIM with what he had to work with at the time.
I believe that the way clinical trials work, if there is clearly a better treatment patients are allowed to cross over. But for some, that may be too late.
If it was my kid, I would do what was best for THEM. Ethics be damned, that is your child, and by all means, that comes first.
Interferon is a gray area, but remember – so is IPI for stage III.
Best wishes for you and your family regardless of your decision,
Maria
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- November 2, 2011 at 10:51 am
I'm so sorry to hear that you have to make this decision. The truth is, there really is no right or wrong answer. When my husband was diagnosed, Interferon was the only option. It kept him NED for 2 1/2 years. Nobody will ever know if the Interferon was what kept him NED or the LND, or if it was just the natural progression of disease and NONE of it worked. But he knows that he made the best decision for HIM with what he had to work with at the time.
I believe that the way clinical trials work, if there is clearly a better treatment patients are allowed to cross over. But for some, that may be too late.
If it was my kid, I would do what was best for THEM. Ethics be damned, that is your child, and by all means, that comes first.
Interferon is a gray area, but remember – so is IPI for stage III.
Best wishes for you and your family regardless of your decision,
Maria
-
- November 2, 2011 at 10:51 am
I'm so sorry to hear that you have to make this decision. The truth is, there really is no right or wrong answer. When my husband was diagnosed, Interferon was the only option. It kept him NED for 2 1/2 years. Nobody will ever know if the Interferon was what kept him NED or the LND, or if it was just the natural progression of disease and NONE of it worked. But he knows that he made the best decision for HIM with what he had to work with at the time.
I believe that the way clinical trials work, if there is clearly a better treatment patients are allowed to cross over. But for some, that may be too late.
If it was my kid, I would do what was best for THEM. Ethics be damned, that is your child, and by all means, that comes first.
Interferon is a gray area, but remember – so is IPI for stage III.
Best wishes for you and your family regardless of your decision,
Maria
-
- November 2, 2011 at 1:42 pm
Hi,
I am very sorry that your family have to go through this all.
I can only advice you to discuss with your doctors, whether your child is able to practice virotherapy while on the trial. As far as I know, it significantly decreases the potentional side-effects caused by the both ipi and interferon. Moreover, it improves immune system, therefore, the patient is more likely to respond positively to the drug.
Best wishes!
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- November 2, 2011 at 1:42 pm
Hi,
I am very sorry that your family have to go through this all.
I can only advice you to discuss with your doctors, whether your child is able to practice virotherapy while on the trial. As far as I know, it significantly decreases the potentional side-effects caused by the both ipi and interferon. Moreover, it improves immune system, therefore, the patient is more likely to respond positively to the drug.
Best wishes!
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- November 4, 2011 at 1:24 am
The virotherapy does sound promising. I'm a little surprised there isn't more activity and research with this type treatment in the US. Maybe there is and I just haven't heard about it. Does anyone know if any medical centers in the US are using virotherapy for treating melanoma? I did a few minutes of google research and this link had the most information. I'm taking the statistics listed in the article with a grain of salt but if they are accurate I'm really baffled why this isn't being explored more in the States. http://www.viroterapija.lv/latvian_virotherapy_center_en.html#rigvir
Brian
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- November 4, 2011 at 1:24 am
The virotherapy does sound promising. I'm a little surprised there isn't more activity and research with this type treatment in the US. Maybe there is and I just haven't heard about it. Does anyone know if any medical centers in the US are using virotherapy for treating melanoma? I did a few minutes of google research and this link had the most information. I'm taking the statistics listed in the article with a grain of salt but if they are accurate I'm really baffled why this isn't being explored more in the States. http://www.viroterapija.lv/latvian_virotherapy_center_en.html#rigvir
Brian
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- November 4, 2011 at 12:27 pm
Hi again,
As far as I understood from the website, this centre that you mentioned practices this treatment already. I found this site useful: http://www.latvia.travel/en/oncology-%E2%80%93-cancer-virotherapy
I have no idea about US, because I come from Europe. Maybe you couldfind out more by contacting the centre.
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- November 4, 2011 at 12:27 pm
Hi again,
As far as I understood from the website, this centre that you mentioned practices this treatment already. I found this site useful: http://www.latvia.travel/en/oncology-%E2%80%93-cancer-virotherapy
I have no idea about US, because I come from Europe. Maybe you couldfind out more by contacting the centre.
-
- November 4, 2011 at 12:27 pm
Hi again,
As far as I understood from the website, this centre that you mentioned practices this treatment already. I found this site useful: http://www.latvia.travel/en/oncology-%E2%80%93-cancer-virotherapy
I have no idea about US, because I come from Europe. Maybe you couldfind out more by contacting the centre.
-
- November 4, 2011 at 1:24 am
The virotherapy does sound promising. I'm a little surprised there isn't more activity and research with this type treatment in the US. Maybe there is and I just haven't heard about it. Does anyone know if any medical centers in the US are using virotherapy for treating melanoma? I did a few minutes of google research and this link had the most information. I'm taking the statistics listed in the article with a grain of salt but if they are accurate I'm really baffled why this isn't being explored more in the States. http://www.viroterapija.lv/latvian_virotherapy_center_en.html#rigvir
Brian
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- November 2, 2011 at 1:42 pm
Hi,
I am very sorry that your family have to go through this all.
I can only advice you to discuss with your doctors, whether your child is able to practice virotherapy while on the trial. As far as I know, it significantly decreases the potentional side-effects caused by the both ipi and interferon. Moreover, it improves immune system, therefore, the patient is more likely to respond positively to the drug.
Best wishes!
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