› Forums › General Melanoma Community › Just progressed to stage IV, would love input on what order we should try treatments
- This topic has 42 replies, 8 voices, and was last updated 12 years, 8 months ago by zephyr66.
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- January 19, 2012 at 5:00 am
I was diagnosed stage IIIB in 2007, did interferon for 9 months. Last February found 2 subQs, surgical removal and watch and wait. Scans came back today (my 33rd birthday) showing mets in hip bones, femur, liver, and a subq in the thigh.
I was diagnosed stage IIIB in 2007, did interferon for 9 months. Last February found 2 subQs, surgical removal and watch and wait. Scans came back today (my 33rd birthday) showing mets in hip bones, femur, liver, and a subq in the thigh.
I see my oncologist tomorrow. I want to be prepared to discuss treatment options. What trial do we think is having the best response rate? It seems like I remember (I was on this board a lot a year ago) it was the one at NIH with the T-cell transfer and whole body radiation. Is this still the case? What other trials are going on right now with promising results? I am willing to go anywhere. I do wonder how long it would take to get started on a trial that is out of state. I called MD Anderson with my first recurrence and I couldn't even get in for an appointment for 2 weeks. Is that pretty standard?
Of the mediacations we have available (IPI, IL-2, Zelboraf) what would a young, healthy (well) mother of three (read-desperate for a cure) want to try first? I know the IPI sometimes takes a long to time to work, so maybe I should start there so I can give it time. It seems like lots of trials have a requirement that you don't have an auto immune disease, and would the IPI maybe give me one of those and disqualify me for something down the road? I am strong now, maybe I should do biochemo while feel good? I do have the braf mutation, but I am thinking that would be the last, unless for some reason I need to shrink the tumors.
Any thoughts?
Thank you so much. I am so glad I have somewhere I can talk to people who have been through this and are well read on the latest treatments.
Ali
- Replies
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- January 19, 2012 at 5:51 am
I am heart broken reading your post. I am in a very similar situation. I'm a little older (45), but I am the father of 3 young children and a 35 year old wife. My original dx was in 2008 with a 3mm deep mole on my scalp. Did Leukine injections for 3 years – everything was peachy. Then in late october I started vomiting and having horrible headaches. Had a scan and sure enough – 3 brain mets. I am doing Zelboraf at the moment. Seems to be working but it's hard to know for sure. My first scan came out clean. If you are BRAF positive – I would recommend it as a means of getting the disease contained. It is not a cure, but it works fast and it will give you time to consider the next step – which may be Ipi or one of the other BRAF drugs, or the cell transfer, or the ANti PD drug. The good thing is that you have choices. Please seek advice from more than one oncologist and one center. I hope and pray for the best for you. Just know that there is not one correct answer, and if the first things doesn't work – try the next, and keep focused on beating this thing. Stay strong!
David
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- January 19, 2012 at 5:51 am
I am heart broken reading your post. I am in a very similar situation. I'm a little older (45), but I am the father of 3 young children and a 35 year old wife. My original dx was in 2008 with a 3mm deep mole on my scalp. Did Leukine injections for 3 years – everything was peachy. Then in late october I started vomiting and having horrible headaches. Had a scan and sure enough – 3 brain mets. I am doing Zelboraf at the moment. Seems to be working but it's hard to know for sure. My first scan came out clean. If you are BRAF positive – I would recommend it as a means of getting the disease contained. It is not a cure, but it works fast and it will give you time to consider the next step – which may be Ipi or one of the other BRAF drugs, or the cell transfer, or the ANti PD drug. The good thing is that you have choices. Please seek advice from more than one oncologist and one center. I hope and pray for the best for you. Just know that there is not one correct answer, and if the first things doesn't work – try the next, and keep focused on beating this thing. Stay strong!
David
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- January 19, 2012 at 4:54 pm
David, I am sorry to hear your story too. I'm glad the Zelboraf is doing it's job, it was happy day when I found out I had that mutation. I am feeling good that I have options. I only worry about how much time I have to try them all. Thank you for your encouragment. I sincerly appreciate it. Best of luck to you!
Ali
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- January 19, 2012 at 4:54 pm
David, I am sorry to hear your story too. I'm glad the Zelboraf is doing it's job, it was happy day when I found out I had that mutation. I am feeling good that I have options. I only worry about how much time I have to try them all. Thank you for your encouragment. I sincerly appreciate it. Best of luck to you!
Ali
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- January 19, 2012 at 4:54 pm
David, I am sorry to hear your story too. I'm glad the Zelboraf is doing it's job, it was happy day when I found out I had that mutation. I am feeling good that I have options. I only worry about how much time I have to try them all. Thank you for your encouragment. I sincerly appreciate it. Best of luck to you!
Ali
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- January 19, 2012 at 5:51 am
I am heart broken reading your post. I am in a very similar situation. I'm a little older (45), but I am the father of 3 young children and a 35 year old wife. My original dx was in 2008 with a 3mm deep mole on my scalp. Did Leukine injections for 3 years – everything was peachy. Then in late october I started vomiting and having horrible headaches. Had a scan and sure enough – 3 brain mets. I am doing Zelboraf at the moment. Seems to be working but it's hard to know for sure. My first scan came out clean. If you are BRAF positive – I would recommend it as a means of getting the disease contained. It is not a cure, but it works fast and it will give you time to consider the next step – which may be Ipi or one of the other BRAF drugs, or the cell transfer, or the ANti PD drug. The good thing is that you have choices. Please seek advice from more than one oncologist and one center. I hope and pray for the best for you. Just know that there is not one correct answer, and if the first things doesn't work – try the next, and keep focused on beating this thing. Stay strong!
David
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- January 19, 2012 at 10:36 am
Ali, I am sorry to read of your situation. I think that surgery, if possible, is the best initial way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.
At the moment it appears that the best options for effective systemic treatments include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial.
Note that IL-2 before or after Yervoy can make a good combination. Early results of anti PD-1 trials seem to be very promising from what I have read.
Hope this helps
Frank from Australia
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- January 19, 2012 at 4:58 pm
Thank you Frank, it was the surgeon I talked to yesterday, and since it is in the bones I think we are going with something systemic. I don't know the results of the brain scans yet, so that may change. I have not read up on the PD-1 trials, do you have a good article or study about that? I will ask about all these treatments today and hope we pick a winner.
Ali
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- January 19, 2012 at 4:58 pm
Thank you Frank, it was the surgeon I talked to yesterday, and since it is in the bones I think we are going with something systemic. I don't know the results of the brain scans yet, so that may change. I have not read up on the PD-1 trials, do you have a good article or study about that? I will ask about all these treatments today and hope we pick a winner.
Ali
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- January 20, 2012 at 5:20 am
Ali, here is some early info on anti PD-1 (MDX-1106) trials:
From the abstract: Immunobiology of Immune Checkpoints
"MDX-1106 is a fully human antibody to PD-1. Data from a large phase 1 program has
revealed the ability of treatment with this antibody to mediate durable responses, as
well an immune related adverse events. An ongoing phase 1 trial is exploring the
combination of ipilimumab and MDX-1106 in patients with advanced melanoma."
See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full and also http://www.springerlink.com/content/k348w612r51t6k24/For clinical trials see:
http://www.clinicaltrials.gov/ct2/results?term=anti-PD-1&recr=Open&rslt=&type=&cond=melanoma&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=The following is a link to a thread about response rates of various treatments:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/all-you-stage-iv-patients-collection-response-rate
(If it doesn't work, just copy and paste the link into the address bar of your browser.)Take care
Frank from Australia
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- January 20, 2012 at 5:20 am
Ali, here is some early info on anti PD-1 (MDX-1106) trials:
From the abstract: Immunobiology of Immune Checkpoints
"MDX-1106 is a fully human antibody to PD-1. Data from a large phase 1 program has
revealed the ability of treatment with this antibody to mediate durable responses, as
well an immune related adverse events. An ongoing phase 1 trial is exploring the
combination of ipilimumab and MDX-1106 in patients with advanced melanoma."
See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full and also http://www.springerlink.com/content/k348w612r51t6k24/For clinical trials see:
http://www.clinicaltrials.gov/ct2/results?term=anti-PD-1&recr=Open&rslt=&type=&cond=melanoma&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=The following is a link to a thread about response rates of various treatments:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/all-you-stage-iv-patients-collection-response-rate
(If it doesn't work, just copy and paste the link into the address bar of your browser.)Take care
Frank from Australia
-
- January 20, 2012 at 5:20 am
Ali, here is some early info on anti PD-1 (MDX-1106) trials:
From the abstract: Immunobiology of Immune Checkpoints
"MDX-1106 is a fully human antibody to PD-1. Data from a large phase 1 program has
revealed the ability of treatment with this antibody to mediate durable responses, as
well an immune related adverse events. An ongoing phase 1 trial is exploring the
combination of ipilimumab and MDX-1106 in patients with advanced melanoma."
See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full and also http://www.springerlink.com/content/k348w612r51t6k24/For clinical trials see:
http://www.clinicaltrials.gov/ct2/results?term=anti-PD-1&recr=Open&rslt=&type=&cond=melanoma&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=The following is a link to a thread about response rates of various treatments:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/all-you-stage-iv-patients-collection-response-rate
(If it doesn't work, just copy and paste the link into the address bar of your browser.)Take care
Frank from Australia
-
- January 19, 2012 at 4:58 pm
Thank you Frank, it was the surgeon I talked to yesterday, and since it is in the bones I think we are going with something systemic. I don't know the results of the brain scans yet, so that may change. I have not read up on the PD-1 trials, do you have a good article or study about that? I will ask about all these treatments today and hope we pick a winner.
Ali
-
- January 19, 2012 at 10:36 am
Ali, I am sorry to read of your situation. I think that surgery, if possible, is the best initial way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.
At the moment it appears that the best options for effective systemic treatments include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial.
Note that IL-2 before or after Yervoy can make a good combination. Early results of anti PD-1 trials seem to be very promising from what I have read.
Hope this helps
Frank from Australia
-
- January 19, 2012 at 10:36 am
Ali, I am sorry to read of your situation. I think that surgery, if possible, is the best initial way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.
At the moment it appears that the best options for effective systemic treatments include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial.
Note that IL-2 before or after Yervoy can make a good combination. Early results of anti PD-1 trials seem to be very promising from what I have read.
Hope this helps
Frank from Australia
-
- January 19, 2012 at 3:58 pm
Ali, I would find out your HLAA2 blood type, and pursue trials with adoptive cell transfer, MDAnderson is running a trial with two cohorts and is now I believe wanting people who are HLAA2 positive.They need to remove the tumor and see if they can grow the T cells. Also, check out adoptive cell at NIH, I believe your youth will help you get thru these difficult treatments. My husband goes to md anderson and it took us a few weeks to get an appointment, but that’s was okay because he was finishing up his radiation. He is going for his 4th round of biochemo next week, MDAnderson has a floor for this treatment and high dose IL2. Tough treatments, but my husband has done well so far! Don’t hesitate to email me if you have any questions, you have many options, with Ipi, Zelboraf, and antiPd1 trials. Good luck to you, Valerie (Phil’s wife) -
- January 19, 2012 at 3:58 pm
Ali, I would find out your HLAA2 blood type, and pursue trials with adoptive cell transfer, MDAnderson is running a trial with two cohorts and is now I believe wanting people who are HLAA2 positive.They need to remove the tumor and see if they can grow the T cells. Also, check out adoptive cell at NIH, I believe your youth will help you get thru these difficult treatments. My husband goes to md anderson and it took us a few weeks to get an appointment, but that’s was okay because he was finishing up his radiation. He is going for his 4th round of biochemo next week, MDAnderson has a floor for this treatment and high dose IL2. Tough treatments, but my husband has done well so far! Don’t hesitate to email me if you have any questions, you have many options, with Ipi, Zelboraf, and antiPd1 trials. Good luck to you, Valerie (Phil’s wife)-
- January 19, 2012 at 5:11 pm
Valerie,
Good idea, I will have them test the blood type. Any idea on how long this kind of testing takes? I do a have a subQ I think they could try and harvest T cells from. I am definatly intertsted in checking into this option. I have heard great things about MD Anderson. Why did they choose IL2? Is it his first systemic drug? Thanks again, I may be emailing you.
Ali
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- January 19, 2012 at 7:00 pm
Simple blood test, shouldn’t take much time for results, lab just needs to know what they are testing for, our local lab didn’t know HLAA2. Also, just know that t cells take some time to grow, 4-6 weeks, so work on adoptive cell transfer first, plus I think its better to get that tumor removed prior to other systemic treatment. My husband has been fighting for two years, did one year of interferon, had lung surgery, craniotomy, and brain radiation. Now, doing biochemo in Texas, which is three chemo drugs plus interferon and IL2. Contact whenever you have questions, I read this Board daily! Valerie -
- January 19, 2012 at 7:00 pm
Simple blood test, shouldn’t take much time for results, lab just needs to know what they are testing for, our local lab didn’t know HLAA2. Also, just know that t cells take some time to grow, 4-6 weeks, so work on adoptive cell transfer first, plus I think its better to get that tumor removed prior to other systemic treatment. My husband has been fighting for two years, did one year of interferon, had lung surgery, craniotomy, and brain radiation. Now, doing biochemo in Texas, which is three chemo drugs plus interferon and IL2. Contact whenever you have questions, I read this Board daily! Valerie -
- January 19, 2012 at 7:00 pm
Simple blood test, shouldn’t take much time for results, lab just needs to know what they are testing for, our local lab didn’t know HLAA2. Also, just know that t cells take some time to grow, 4-6 weeks, so work on adoptive cell transfer first, plus I think its better to get that tumor removed prior to other systemic treatment. My husband has been fighting for two years, did one year of interferon, had lung surgery, craniotomy, and brain radiation. Now, doing biochemo in Texas, which is three chemo drugs plus interferon and IL2. Contact whenever you have questions, I read this Board daily! Valerie -
- January 19, 2012 at 5:11 pm
Valerie,
Good idea, I will have them test the blood type. Any idea on how long this kind of testing takes? I do a have a subQ I think they could try and harvest T cells from. I am definatly intertsted in checking into this option. I have heard great things about MD Anderson. Why did they choose IL2? Is it his first systemic drug? Thanks again, I may be emailing you.
Ali
-
- January 19, 2012 at 5:11 pm
Valerie,
Good idea, I will have them test the blood type. Any idea on how long this kind of testing takes? I do a have a subQ I think they could try and harvest T cells from. I am definatly intertsted in checking into this option. I have heard great things about MD Anderson. Why did they choose IL2? Is it his first systemic drug? Thanks again, I may be emailing you.
Ali
-
- January 19, 2012 at 3:58 pm
Ali, I would find out your HLAA2 blood type, and pursue trials with adoptive cell transfer, MDAnderson is running a trial with two cohorts and is now I believe wanting people who are HLAA2 positive.They need to remove the tumor and see if they can grow the T cells. Also, check out adoptive cell at NIH, I believe your youth will help you get thru these difficult treatments. My husband goes to md anderson and it took us a few weeks to get an appointment, but that’s was okay because he was finishing up his radiation. He is going for his 4th round of biochemo next week, MDAnderson has a floor for this treatment and high dose IL2. Tough treatments, but my husband has done well so far! Don’t hesitate to email me if you have any questions, you have many options, with Ipi, Zelboraf, and antiPd1 trials. Good luck to you, Valerie (Phil’s wife) -
- January 19, 2012 at 11:12 pm
Ali:
I am sorry for this news–what a 33rd birthday present!
You are right that you have some options, and the question comes down to which option to choose and when. These are very personal choices, as you know. I always advise people who are Stage IV to be sure they are being treated by a team that sees a lot of melanoma and is offering the latest options. Also, try to see an oncologist who is willing to refer you out to someone else if they have a better trial or treatment option. For example, IL-2 is only offered at certain locations, and some doctors won't refer their patients to those locations.
I would like to think a Stage IV patient could get into a center in less than 2 two weeks, but if it takes that long to get to the best person then it is probably worth the wait. Depending on where you live or your ability to travel, you may have other options as good as MD Anderson that could see you sooner.
Last spring i spoke to two different doctors who I regard highly about a Stage IV patient about your age. They thought IL-2 was a good first choice, even though neither of them offer it in their practice. This surprised me, but their thinking was this: She is young and healthy, and so is likely able to tolerate the procedure. She may get lucky and be in the 4% of people who have a complete response, or in the 14% who have some kind of response. If so, great. If not–or if she has a recurrence–she can do ipi or one of the BRAF inhibitors later. I am not recommending a treatment approach, or even saying that this is what I would do in that situation. I was intrigued by their thinking, though, and thought I would share it with you.
As you consider your treatment options, don't forget clinical trials. Doctors who are big on immunotherapy are very interested in the anti-PD1 studies. This is an agent that works like ipi, but on a different target. And, a number of studies are being done combining a BRAF inhibitor with other drugs–either another inhibitor (MEK, PI3 Kinase, AKT, etc.) or some form of immunotherapy. A trial recently opened that combines Yervoy with Zelboraf (ipi plus BRAF), and they are currently enrolling patients at UCLA and Sloan-Kettering.
Please keep us posted on your decisions and progress.
Tim–MRF
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- January 19, 2012 at 11:12 pm
Ali:
I am sorry for this news–what a 33rd birthday present!
You are right that you have some options, and the question comes down to which option to choose and when. These are very personal choices, as you know. I always advise people who are Stage IV to be sure they are being treated by a team that sees a lot of melanoma and is offering the latest options. Also, try to see an oncologist who is willing to refer you out to someone else if they have a better trial or treatment option. For example, IL-2 is only offered at certain locations, and some doctors won't refer their patients to those locations.
I would like to think a Stage IV patient could get into a center in less than 2 two weeks, but if it takes that long to get to the best person then it is probably worth the wait. Depending on where you live or your ability to travel, you may have other options as good as MD Anderson that could see you sooner.
Last spring i spoke to two different doctors who I regard highly about a Stage IV patient about your age. They thought IL-2 was a good first choice, even though neither of them offer it in their practice. This surprised me, but their thinking was this: She is young and healthy, and so is likely able to tolerate the procedure. She may get lucky and be in the 4% of people who have a complete response, or in the 14% who have some kind of response. If so, great. If not–or if she has a recurrence–she can do ipi or one of the BRAF inhibitors later. I am not recommending a treatment approach, or even saying that this is what I would do in that situation. I was intrigued by their thinking, though, and thought I would share it with you.
As you consider your treatment options, don't forget clinical trials. Doctors who are big on immunotherapy are very interested in the anti-PD1 studies. This is an agent that works like ipi, but on a different target. And, a number of studies are being done combining a BRAF inhibitor with other drugs–either another inhibitor (MEK, PI3 Kinase, AKT, etc.) or some form of immunotherapy. A trial recently opened that combines Yervoy with Zelboraf (ipi plus BRAF), and they are currently enrolling patients at UCLA and Sloan-Kettering.
Please keep us posted on your decisions and progress.
Tim–MRF
-
- January 19, 2012 at 11:12 pm
Ali:
I am sorry for this news–what a 33rd birthday present!
You are right that you have some options, and the question comes down to which option to choose and when. These are very personal choices, as you know. I always advise people who are Stage IV to be sure they are being treated by a team that sees a lot of melanoma and is offering the latest options. Also, try to see an oncologist who is willing to refer you out to someone else if they have a better trial or treatment option. For example, IL-2 is only offered at certain locations, and some doctors won't refer their patients to those locations.
I would like to think a Stage IV patient could get into a center in less than 2 two weeks, but if it takes that long to get to the best person then it is probably worth the wait. Depending on where you live or your ability to travel, you may have other options as good as MD Anderson that could see you sooner.
Last spring i spoke to two different doctors who I regard highly about a Stage IV patient about your age. They thought IL-2 was a good first choice, even though neither of them offer it in their practice. This surprised me, but their thinking was this: She is young and healthy, and so is likely able to tolerate the procedure. She may get lucky and be in the 4% of people who have a complete response, or in the 14% who have some kind of response. If so, great. If not–or if she has a recurrence–she can do ipi or one of the BRAF inhibitors later. I am not recommending a treatment approach, or even saying that this is what I would do in that situation. I was intrigued by their thinking, though, and thought I would share it with you.
As you consider your treatment options, don't forget clinical trials. Doctors who are big on immunotherapy are very interested in the anti-PD1 studies. This is an agent that works like ipi, but on a different target. And, a number of studies are being done combining a BRAF inhibitor with other drugs–either another inhibitor (MEK, PI3 Kinase, AKT, etc.) or some form of immunotherapy. A trial recently opened that combines Yervoy with Zelboraf (ipi plus BRAF), and they are currently enrolling patients at UCLA and Sloan-Kettering.
Please keep us posted on your decisions and progress.
Tim–MRF
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- January 20, 2012 at 5:41 am
Thank you for the input Tim. The appointment with the oncologist today went well. He confirmed that there is no real data on which of IPI and IL2 is better to try first. He said he might suggest IPI first because of the easier toxicity. He also says the one good argument for IL2 first is that it is best when you are healthy, before the other drugs or cancer has weakened you. He refurred me to the oncologist that does IL2 in our cancer center (Huntsman in Salt Lake City). I have an appointment with him tomorrow afternoon. He is also up to date on other trials outside our state. I will for sure keep you posted.
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- January 20, 2012 at 5:41 am
Thank you for the input Tim. The appointment with the oncologist today went well. He confirmed that there is no real data on which of IPI and IL2 is better to try first. He said he might suggest IPI first because of the easier toxicity. He also says the one good argument for IL2 first is that it is best when you are healthy, before the other drugs or cancer has weakened you. He refurred me to the oncologist that does IL2 in our cancer center (Huntsman in Salt Lake City). I have an appointment with him tomorrow afternoon. He is also up to date on other trials outside our state. I will for sure keep you posted.
-
- January 20, 2012 at 5:41 am
Thank you for the input Tim. The appointment with the oncologist today went well. He confirmed that there is no real data on which of IPI and IL2 is better to try first. He said he might suggest IPI first because of the easier toxicity. He also says the one good argument for IL2 first is that it is best when you are healthy, before the other drugs or cancer has weakened you. He refurred me to the oncologist that does IL2 in our cancer center (Huntsman in Salt Lake City). I have an appointment with him tomorrow afternoon. He is also up to date on other trials outside our state. I will for sure keep you posted.
-
- January 20, 2012 at 8:21 pm
Ali,
I am so sorry to hear of your recent news and as many on this board can identify in many ways. My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist). I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur). Faced with many of the same choices/questions you have now. My treatment road, which has made sense so far has been:
I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program. Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening). I chose to get my TCells going before doing High Dose IL-2. That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them. If not, then by the time I finished IL2 – about a 3 month process including follow-up scans. My TCells would be ready. I had a very limited response, but no progression after IL2. So I enrolled in a trial that includes the TCells and ipi. I just finished the ipi and it hasn't been bad for me. I really liked not having to wait between treatments. Of course, this has been helped by where I live and access to the trial. I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy. If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify.
I wish you the very best during this most difficult time. I just started spending time on this board but plan to be a little more active. Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us. Please don't hesitate to email if I can help.
Troy
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- January 20, 2012 at 8:21 pm
Ali,
I am so sorry to hear of your recent news and as many on this board can identify in many ways. My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist). I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur). Faced with many of the same choices/questions you have now. My treatment road, which has made sense so far has been:
I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program. Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening). I chose to get my TCells going before doing High Dose IL-2. That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them. If not, then by the time I finished IL2 – about a 3 month process including follow-up scans. My TCells would be ready. I had a very limited response, but no progression after IL2. So I enrolled in a trial that includes the TCells and ipi. I just finished the ipi and it hasn't been bad for me. I really liked not having to wait between treatments. Of course, this has been helped by where I live and access to the trial. I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy. If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify.
I wish you the very best during this most difficult time. I just started spending time on this board but plan to be a little more active. Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us. Please don't hesitate to email if I can help.
Troy
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- January 21, 2012 at 4:30 am
You a giving me a little hope tonight. I spent the afternoon with the oncologist and my plan sounds a little similar. We are going to radiate a couple of the bone mets that are giving me pain next week, start IL2 the next, and in between round one and two go to NIH and have a couple of my subqs harvested so we can have that option started. I too feel good about doing something while we see if the cells grow. I feel encouraged you have had time to try both the IL2 and IPI, I hope it is the same for me. Good luck! I would love to hear your success story!
Ali
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- January 24, 2012 at 5:35 am
It sounds like you are in pretty good hands, I like your plan. Good luck with it all. As I’m sure you’ve been told high dose IL2 is pretty tough to say the very least. I’d be happy to pass on advice if you want it. For me, it was a great physical and mental challenge. It was equally hard on those who supported me and I am eternally grateful for the support I received. All the very best.
Troy -
- January 24, 2012 at 5:35 am
It sounds like you are in pretty good hands, I like your plan. Good luck with it all. As I’m sure you’ve been told high dose IL2 is pretty tough to say the very least. I’d be happy to pass on advice if you want it. For me, it was a great physical and mental challenge. It was equally hard on those who supported me and I am eternally grateful for the support I received. All the very best.
Troy -
- January 24, 2012 at 5:35 am
It sounds like you are in pretty good hands, I like your plan. Good luck with it all. As I’m sure you’ve been told high dose IL2 is pretty tough to say the very least. I’d be happy to pass on advice if you want it. For me, it was a great physical and mental challenge. It was equally hard on those who supported me and I am eternally grateful for the support I received. All the very best.
Troy -
- January 21, 2012 at 4:30 am
You a giving me a little hope tonight. I spent the afternoon with the oncologist and my plan sounds a little similar. We are going to radiate a couple of the bone mets that are giving me pain next week, start IL2 the next, and in between round one and two go to NIH and have a couple of my subqs harvested so we can have that option started. I too feel good about doing something while we see if the cells grow. I feel encouraged you have had time to try both the IL2 and IPI, I hope it is the same for me. Good luck! I would love to hear your success story!
Ali
-
- January 21, 2012 at 4:30 am
You a giving me a little hope tonight. I spent the afternoon with the oncologist and my plan sounds a little similar. We are going to radiate a couple of the bone mets that are giving me pain next week, start IL2 the next, and in between round one and two go to NIH and have a couple of my subqs harvested so we can have that option started. I too feel good about doing something while we see if the cells grow. I feel encouraged you have had time to try both the IL2 and IPI, I hope it is the same for me. Good luck! I would love to hear your success story!
Ali
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- January 20, 2012 at 8:21 pm
Ali,
I am so sorry to hear of your recent news and as many on this board can identify in many ways. My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist). I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur). Faced with many of the same choices/questions you have now. My treatment road, which has made sense so far has been:
I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program. Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening). I chose to get my TCells going before doing High Dose IL-2. That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them. If not, then by the time I finished IL2 – about a 3 month process including follow-up scans. My TCells would be ready. I had a very limited response, but no progression after IL2. So I enrolled in a trial that includes the TCells and ipi. I just finished the ipi and it hasn't been bad for me. I really liked not having to wait between treatments. Of course, this has been helped by where I live and access to the trial. I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy. If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify.
I wish you the very best during this most difficult time. I just started spending time on this board but plan to be a little more active. Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us. Please don't hesitate to email if I can help.
Troy
-
- February 1, 2012 at 10:47 pm
hi ali –
you have probably already made your decision by now but thought i would give my thoughts. my partner is 44, athletic, strong and was diagnosed stage 4 with inoperable spinal tumors. we went the zelboraf route. although for some the side effects can be rough, she (like many others) have found that below the suggested dose is doing a great job. 4 pills/2 x day is suggested but she is on 2 pills/2x day and the spinal tumors have shrunk and tumors in lung have shrunk giving her the ability to almost get off morphine and get back to a lot of her life. i have heard that IL2 is a VERY toxic and older treatment and if you test positive for BRAF then that is a good way to go. zelboraf has a high success rate and although it doesn't keep working, it can give you the time you need to think of your next line of attack. just my two cents. hope you're doing well.
sylvia
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- February 1, 2012 at 10:47 pm
hi ali –
you have probably already made your decision by now but thought i would give my thoughts. my partner is 44, athletic, strong and was diagnosed stage 4 with inoperable spinal tumors. we went the zelboraf route. although for some the side effects can be rough, she (like many others) have found that below the suggested dose is doing a great job. 4 pills/2 x day is suggested but she is on 2 pills/2x day and the spinal tumors have shrunk and tumors in lung have shrunk giving her the ability to almost get off morphine and get back to a lot of her life. i have heard that IL2 is a VERY toxic and older treatment and if you test positive for BRAF then that is a good way to go. zelboraf has a high success rate and although it doesn't keep working, it can give you the time you need to think of your next line of attack. just my two cents. hope you're doing well.
sylvia
-
- February 1, 2012 at 10:47 pm
hi ali –
you have probably already made your decision by now but thought i would give my thoughts. my partner is 44, athletic, strong and was diagnosed stage 4 with inoperable spinal tumors. we went the zelboraf route. although for some the side effects can be rough, she (like many others) have found that below the suggested dose is doing a great job. 4 pills/2 x day is suggested but she is on 2 pills/2x day and the spinal tumors have shrunk and tumors in lung have shrunk giving her the ability to almost get off morphine and get back to a lot of her life. i have heard that IL2 is a VERY toxic and older treatment and if you test positive for BRAF then that is a good way to go. zelboraf has a high success rate and although it doesn't keep working, it can give you the time you need to think of your next line of attack. just my two cents. hope you're doing well.
sylvia
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