› Forums › General Melanoma Community › stage 4 recommended ipi
- This topic has 39 replies, 10 voices, and was last updated 9 years, 9 months ago by
Marianne quinn.
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- November 17, 2015 at 10:55 pm
Hi,
I am concerned with starting ipi because of the side effects.
I am 51yrs old and in good overall health.
In 2011 i found a melanoma on my right foot. The skin was removed and the margins were clear.
At that time I had a chest and brain scan that came back clean. I also had sentinel node taken and clean as well.
This January I had a ct scan, unrelated. It showed a spot. After six months I had a pet/ct and biopsy that confimed meanoma.
The melonoma was removed with surgery Oct 1st, and the recent pet/ct scan is clean.
The oncologist is recommending ipi even though I have no signs of the disease.
I realize the the melonoma will most likely be back, but the side effects seem high to me.
I am thankfull for the treatment but I think it would be better to do the treatment with an actual tumor to treat. Am I wrong in thinking this way?
Also the oncologist discussed some other drugs that had less side effects when taken in combination but did not want to use them because I did not have any tumors, and he would not know how long to treat.
I am braf positive, if I said that correctly.
I know that this treatment, for people in my shoes, is newly approved, so I would imagain that there is not alot of expeience with this.
Any help or advice is appreciated.
Thank You
- Replies
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- November 17, 2015 at 11:14 pm
Wow! I actually just posted the same question about ipi! My melanoma was also on my right foot and I am a stage 3A. I would like to do something to try to prevent it from returning but at the same time is it worth the possible side effects.
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- November 18, 2015 at 12:21 pm
And I just responded to mkirkland, so you may wish to check that thread, too, for further info on ipi and s. effects/dosage/effectiveness etc.
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- November 18, 2015 at 12:21 pm
And I just responded to mkirkland, so you may wish to check that thread, too, for further info on ipi and s. effects/dosage/effectiveness etc.
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- November 18, 2015 at 12:21 pm
And I just responded to mkirkland, so you may wish to check that thread, too, for further info on ipi and s. effects/dosage/effectiveness etc.
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- November 18, 2015 at 12:53 am
Selecting treatment in melanoma world is tricky. You could be lucky and have very little more to do with melanoma in your life. Then again, melanoma is a persistent beast and can come back to bite us…especially when you have progressed to positive lymph nodes, tumors in scattered organs, etc. Side effects are a big deal for anyone, but even more of a consideration when you have no significant illness….is the benefit worth the risk? That is a very personal question no matter your stage. An important thing to remember about immunotherapy (which anti-PD1 and ipi are) is that we have learned that it is most effective when the tumor burden is the lowest possible. Here is a link….that contains several more links to other pertinent posts…with data and articles that address adjuvant ipi and anti-PD1 treatments for NED melanoma patients: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/two-new-fda-approvals-for-treatment-of.html
For my part, I participated in an NED arm of an anti-PD1 (Nivo/Opdivo) trial in 2010, for 2 1/2 years, after having brain and lung mets. I was rendered NED with SRS to the brain and lung surgery. However, 5 years later, I remain NED and most of my fellow ratties are doing equally well. In other words….with a much better shelf life overall than other NED Stage IV peeps without that treatment. Hope it helps. Celeste
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- November 18, 2015 at 12:53 am
Selecting treatment in melanoma world is tricky. You could be lucky and have very little more to do with melanoma in your life. Then again, melanoma is a persistent beast and can come back to bite us…especially when you have progressed to positive lymph nodes, tumors in scattered organs, etc. Side effects are a big deal for anyone, but even more of a consideration when you have no significant illness….is the benefit worth the risk? That is a very personal question no matter your stage. An important thing to remember about immunotherapy (which anti-PD1 and ipi are) is that we have learned that it is most effective when the tumor burden is the lowest possible. Here is a link….that contains several more links to other pertinent posts…with data and articles that address adjuvant ipi and anti-PD1 treatments for NED melanoma patients: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/two-new-fda-approvals-for-treatment-of.html
For my part, I participated in an NED arm of an anti-PD1 (Nivo/Opdivo) trial in 2010, for 2 1/2 years, after having brain and lung mets. I was rendered NED with SRS to the brain and lung surgery. However, 5 years later, I remain NED and most of my fellow ratties are doing equally well. In other words….with a much better shelf life overall than other NED Stage IV peeps without that treatment. Hope it helps. Celeste
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- November 18, 2015 at 12:53 am
Selecting treatment in melanoma world is tricky. You could be lucky and have very little more to do with melanoma in your life. Then again, melanoma is a persistent beast and can come back to bite us…especially when you have progressed to positive lymph nodes, tumors in scattered organs, etc. Side effects are a big deal for anyone, but even more of a consideration when you have no significant illness….is the benefit worth the risk? That is a very personal question no matter your stage. An important thing to remember about immunotherapy (which anti-PD1 and ipi are) is that we have learned that it is most effective when the tumor burden is the lowest possible. Here is a link….that contains several more links to other pertinent posts…with data and articles that address adjuvant ipi and anti-PD1 treatments for NED melanoma patients: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/two-new-fda-approvals-for-treatment-of.html
For my part, I participated in an NED arm of an anti-PD1 (Nivo/Opdivo) trial in 2010, for 2 1/2 years, after having brain and lung mets. I was rendered NED with SRS to the brain and lung surgery. However, 5 years later, I remain NED and most of my fellow ratties are doing equally well. In other words….with a much better shelf life overall than other NED Stage IV peeps without that treatment. Hope it helps. Celeste
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- November 18, 2015 at 3:52 am
Thanks.
I realize that I didn't say that the second melanoma was on my left lung.
The surgery removed the tumor and the margins were clean.
If I stay on a schedule to be checked for any new signs of disease, it seems that the longest time between the start of a new tumor to being detected by ct or mri , would be 3 to six months.
Is this reasonable thinking?
As you can tell I am not looking forward to the ipi. I can't go back undo any damage that could be done.
Thanks again
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- November 18, 2015 at 3:52 am
Thanks.
I realize that I didn't say that the second melanoma was on my left lung.
The surgery removed the tumor and the margins were clean.
If I stay on a schedule to be checked for any new signs of disease, it seems that the longest time between the start of a new tumor to being detected by ct or mri , would be 3 to six months.
Is this reasonable thinking?
As you can tell I am not looking forward to the ipi. I can't go back undo any damage that could be done.
Thanks again
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- November 18, 2015 at 3:52 am
Thanks.
I realize that I didn't say that the second melanoma was on my left lung.
The surgery removed the tumor and the margins were clean.
If I stay on a schedule to be checked for any new signs of disease, it seems that the longest time between the start of a new tumor to being detected by ct or mri , would be 3 to six months.
Is this reasonable thinking?
As you can tell I am not looking forward to the ipi. I can't go back undo any damage that could be done.
Thanks again
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- November 18, 2015 at 11:37 am
You thoughts ARE reasonable. Some people are willing to watch and wait and stay vigilent. Others are not. I don't blame you for wishing to avoid ipi…or any other treatment for that matter. It is all very personal. There are no wrong answers…you just have to do what you think is best for you. I wish you well. C
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- November 18, 2015 at 11:37 am
You thoughts ARE reasonable. Some people are willing to watch and wait and stay vigilent. Others are not. I don't blame you for wishing to avoid ipi…or any other treatment for that matter. It is all very personal. There are no wrong answers…you just have to do what you think is best for you. I wish you well. C
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- November 18, 2015 at 11:37 am
You thoughts ARE reasonable. Some people are willing to watch and wait and stay vigilent. Others are not. I don't blame you for wishing to avoid ipi…or any other treatment for that matter. It is all very personal. There are no wrong answers…you just have to do what you think is best for you. I wish you well. C
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- November 18, 2015 at 12:19 pm
Celeste, As one who is quite new to disease (mucosal m. diagnosed in May, this year) and the treatments (first ipi/nivo, then bad s. effects, recovery, and now Pembro since Sept), I want to thank you and your fellow peeps for participating in the trials back in 2010 – you and your fellow ratties have made a great contribution to pushig this research along! Further, it's wonderful to hear that 5 years out you and so many of the orig. group are still NED – so hopeful! Chris
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- November 18, 2015 at 12:19 pm
Celeste, As one who is quite new to disease (mucosal m. diagnosed in May, this year) and the treatments (first ipi/nivo, then bad s. effects, recovery, and now Pembro since Sept), I want to thank you and your fellow peeps for participating in the trials back in 2010 – you and your fellow ratties have made a great contribution to pushig this research along! Further, it's wonderful to hear that 5 years out you and so many of the orig. group are still NED – so hopeful! Chris
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- November 18, 2015 at 12:19 pm
Celeste, As one who is quite new to disease (mucosal m. diagnosed in May, this year) and the treatments (first ipi/nivo, then bad s. effects, recovery, and now Pembro since Sept), I want to thank you and your fellow peeps for participating in the trials back in 2010 – you and your fellow ratties have made a great contribution to pushig this research along! Further, it's wonderful to hear that 5 years out you and so many of the orig. group are still NED – so hopeful! Chris
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- November 18, 2015 at 12:56 am
There has been a few posts on this. If I remember correctly dr Luke at the university of Chicago for that person basically said why risk a med for something that might never come back. But that was for that person who may have a much lower risk of recurrence,
If it does recur then the med of choice at that time can be used. For example either keytruda or opdivo pd1 might be an option by then. Although all meds have risk they are lower risk than ipi especially since stage 3 ipi is over 3 times the dose of stage 4 ipi. Kind of odd dosing in my opinion but what do i know.
But then on the flip side what if it does recur and isn't caught until it's much worse. Very difficult decision for you to make.
Artie
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- November 18, 2015 at 12:56 am
There has been a few posts on this. If I remember correctly dr Luke at the university of Chicago for that person basically said why risk a med for something that might never come back. But that was for that person who may have a much lower risk of recurrence,
If it does recur then the med of choice at that time can be used. For example either keytruda or opdivo pd1 might be an option by then. Although all meds have risk they are lower risk than ipi especially since stage 3 ipi is over 3 times the dose of stage 4 ipi. Kind of odd dosing in my opinion but what do i know.
But then on the flip side what if it does recur and isn't caught until it's much worse. Very difficult decision for you to make.
Artie
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- November 18, 2015 at 12:56 am
There has been a few posts on this. If I remember correctly dr Luke at the university of Chicago for that person basically said why risk a med for something that might never come back. But that was for that person who may have a much lower risk of recurrence,
If it does recur then the med of choice at that time can be used. For example either keytruda or opdivo pd1 might be an option by then. Although all meds have risk they are lower risk than ipi especially since stage 3 ipi is over 3 times the dose of stage 4 ipi. Kind of odd dosing in my opinion but what do i know.
But then on the flip side what if it does recur and isn't caught until it's much worse. Very difficult decision for you to make.
Artie
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- November 18, 2015 at 1:35 am
I would get a circulatiing tonour cell test done if i was stage 111 and considering further treatment.
A CTC test will tell you the likelihood of you becoming a stage 4 patient in which case treatment maybe a better option that wait and see.
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- November 18, 2015 at 3:42 pm
My husband was a Stage IIIb at his initial diagnosis in Jan 2008 and after several surgeries advanced to Stage IV with a unresectable tumor pressing on the spine at C1-2 area, liver mets, lung mets and 4 or 5 sub q's in Oct. 2010. He began the IPI 10mg/kg in Mar. 2011. He had the original 4 doses every 3 weeks for 12 weeks and then went into the maintenance phase of once every 12 weeks. He was also given GMCSF daily self injections 14 days on 7 days off for the full time. We literally watched the sub q's disappear as we took pictures every 3 weeks just before his IPI infusions.
He had some side effects but mostly minor and easy to handle. He remained on the IPI and GMCSF until Dec. 2013 when he went off and is just followed by his onc. He has been 3 years NED. If you would like to read more about him you can read his profile.
Judy (loving wife to Gene Stage IV and now NED for over 3 years.)
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- November 18, 2015 at 3:42 pm
My husband was a Stage IIIb at his initial diagnosis in Jan 2008 and after several surgeries advanced to Stage IV with a unresectable tumor pressing on the spine at C1-2 area, liver mets, lung mets and 4 or 5 sub q's in Oct. 2010. He began the IPI 10mg/kg in Mar. 2011. He had the original 4 doses every 3 weeks for 12 weeks and then went into the maintenance phase of once every 12 weeks. He was also given GMCSF daily self injections 14 days on 7 days off for the full time. We literally watched the sub q's disappear as we took pictures every 3 weeks just before his IPI infusions.
He had some side effects but mostly minor and easy to handle. He remained on the IPI and GMCSF until Dec. 2013 when he went off and is just followed by his onc. He has been 3 years NED. If you would like to read more about him you can read his profile.
Judy (loving wife to Gene Stage IV and now NED for over 3 years.)
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- November 18, 2015 at 9:57 pm
Hi Takat,
I can appreciate your concerns in avoiding Ipi. I have been avoiding it myself and I am stage IV with lung mets. My tumor burden remains low (last I checked). The response rate for Ipi is somewhere around 20-25%. With my luck, I always assumed I'd be in the 75% group (all the side effects and none of the benefit). There's currently no way to know whether you will respond or not. If you are a responder, you would likely respond with a couple of tumors down the road as well as you would now. If you are not a responder, then there is no benefit to doing it earlier. As long as you are being monitored regularly, you would likely become aware of any tumors while you still had a low tumor burden. But maybe not. It is a tricky beast. Inform yourself of the risks and benefits and do what feels right for you. Good luck to you!
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- November 18, 2015 at 9:57 pm
Hi Takat,
I can appreciate your concerns in avoiding Ipi. I have been avoiding it myself and I am stage IV with lung mets. My tumor burden remains low (last I checked). The response rate for Ipi is somewhere around 20-25%. With my luck, I always assumed I'd be in the 75% group (all the side effects and none of the benefit). There's currently no way to know whether you will respond or not. If you are a responder, you would likely respond with a couple of tumors down the road as well as you would now. If you are not a responder, then there is no benefit to doing it earlier. As long as you are being monitored regularly, you would likely become aware of any tumors while you still had a low tumor burden. But maybe not. It is a tricky beast. Inform yourself of the risks and benefits and do what feels right for you. Good luck to you!
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- November 20, 2015 at 4:20 am
Just got my husbands CAT scan results. NED for 18 months. Over 2 years after diagnosis. He had 10 mg ipi for four doses. He had what appeared to be a small liver mets after the induction infusions. He had microwave ablation surgery and no further mets or immunotherapy. We know the ipi worked. The side effects were manageable . I am glad he did it. It seems that there was mets in his body even though he was.NED after surgery and a lymphendectomy. He was originally diagnosed as 3c. Good luck to you.
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- November 20, 2015 at 4:20 am
Just got my husbands CAT scan results. NED for 18 months. Over 2 years after diagnosis. He had 10 mg ipi for four doses. He had what appeared to be a small liver mets after the induction infusions. He had microwave ablation surgery and no further mets or immunotherapy. We know the ipi worked. The side effects were manageable . I am glad he did it. It seems that there was mets in his body even though he was.NED after surgery and a lymphendectomy. He was originally diagnosed as 3c. Good luck to you.
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- November 20, 2015 at 4:20 am
Just got my husbands CAT scan results. NED for 18 months. Over 2 years after diagnosis. He had 10 mg ipi for four doses. He had what appeared to be a small liver mets after the induction infusions. He had microwave ablation surgery and no further mets or immunotherapy. We know the ipi worked. The side effects were manageable . I am glad he did it. It seems that there was mets in his body even though he was.NED after surgery and a lymphendectomy. He was originally diagnosed as 3c. Good luck to you.
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- November 18, 2015 at 9:57 pm
Hi Takat,
I can appreciate your concerns in avoiding Ipi. I have been avoiding it myself and I am stage IV with lung mets. My tumor burden remains low (last I checked). The response rate for Ipi is somewhere around 20-25%. With my luck, I always assumed I'd be in the 75% group (all the side effects and none of the benefit). There's currently no way to know whether you will respond or not. If you are a responder, you would likely respond with a couple of tumors down the road as well as you would now. If you are not a responder, then there is no benefit to doing it earlier. As long as you are being monitored regularly, you would likely become aware of any tumors while you still had a low tumor burden. But maybe not. It is a tricky beast. Inform yourself of the risks and benefits and do what feels right for you. Good luck to you!
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My husband was a Stage IIIb at his initial diagnosis in Jan 2008 and after several surgeries advanced to Stage IV with a unresectable tumor pressing on the spine at C1-2 area, liver mets, lung mets and 4 or 5 sub q's in Oct. 2010. He began the IPI 10mg/kg in Mar. 2011. He had the original 4 doses every 3 weeks for 12 weeks and then went into the maintenance phase of once every 12 weeks. He was also given GMCSF daily self injections 14 days on 7 days off for the full time. We literally watched the sub q's disappear as we took pictures every 3 weeks just before his IPI infusions.
He had some side effects but mostly minor and easy to handle. He remained on the IPI and GMCSF until Dec. 2013 when he went off and is just followed by his onc. He has been 3 years NED. If you would like to read more about him you can read his profile.
Judy (loving wife to Gene Stage IV and now NED for over 3 years.)