› Forums › General Melanoma Community › trials?
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nickmac56.
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- September 6, 2011 at 5:39 pm
I have a question about trials–what are the big hospitals treating metastatc melanoma and what are the "big" trials that are going on right now. My husband has disease progression after yervoy working for a couple of weeks. His oncologist is sending him to Dr. Linnette at Siteman Cancer Center (st.
I have a question about trials–what are the big hospitals treating metastatc melanoma and what are the "big" trials that are going on right now. My husband has disease progression after yervoy working for a couple of weeks. His oncologist is sending him to Dr. Linnette at Siteman Cancer Center (st. louis–about 45 minutes from where we live). He's the closest specialist running trials right now. We're open to looking farther away, but are only willing to travel if there is really something promising going on–we have 3 young boys and since it seems at this point, my husband has a limited time left to spend with them, he doesn't want to spend it running all over the country–he wants to spend as much time as he can with our boys. We know there's Zelboraf–we're hoping to wait on that for awhile, since it only lasts for a limited amount of time and neither tumor he has now is in a place it will be fatal.
We've looked a bit into IL-2 and it sounds kind of promising. Will any oncologist do IL-2, or do you have to go to a specific center to get it?? Since we're in the process of switching doctors, we're not sure where to turn at this point.
Please help us out–my husband is only 38 and in good health (minus cancer:)).
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- September 6, 2011 at 8:38 pm
Siteman has a fairly robust melanoma program, and has a very solid researcher in ocular melanoma.
They have a few trials open, most of which focus on immunotherapy.
So, a bit of landscape (and forgive me if you already know this).
Most clinical trials for melanoma focus on engaging the immune system to attack the cancer (immunotherapy) or going into the tumor cell to shut it down (targeted therapy). Yervoy, IL-2, vaccine programs, TIL programs all belong to the immunotherapy category. They new melanoma drug, Zelboraf, belongs in the later category.
Ask any group of melanoma researchers about promising trials and you will get a wide array of answers. Some of this relates to an inherent bias of immunotherapy vs. targeted therapy. Some if it relates to what trials they have at their own institution. Most of it is about simple differences in opinion.
I suggest you get a couple of different opinions on the issue. Ultimately your husband and you will have to decide what is the best course for your situation. This is challenging, and scary, but unfortunately that is the state of melanoma treatment.
If you decide to go with IL-2 you will need to find a treatment center that administers this drug. It is not given by just any oncologist and require specialty care during treatment. You can find centers that offer it through this site: http://www.proleukin.com/patient/treating/index.jsp
You may want to hear what they say at Siteman and also find a place that does a lot of targeted therapy work. At the very least your husband should be tested for the BRAF mutation. This occurs in about half of people with cutaneous melanoma, if he has the mutation this opens the door to additional treatment options and clinilcal trials. Several cancer centers are doing work in the targeted therapy approach including Mass General (Harvard), Sloan Kettering. Researchers from these two institutions have been at the forefront of publications, but certainly they are not the only locations doing this work.
I am afraid this has been more confusing than helpful, but maybe you can glean a bit of information through this. You can try the MRF Clinical Trial Finder and that may be of some help. Look on the site for a banner that says "Are you getting all the facts" and that will link you to the proper place to get information. It is a lot simpler than clinicaltrials.gov.
Tim–MRF
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- September 6, 2011 at 8:38 pm
Siteman has a fairly robust melanoma program, and has a very solid researcher in ocular melanoma.
They have a few trials open, most of which focus on immunotherapy.
So, a bit of landscape (and forgive me if you already know this).
Most clinical trials for melanoma focus on engaging the immune system to attack the cancer (immunotherapy) or going into the tumor cell to shut it down (targeted therapy). Yervoy, IL-2, vaccine programs, TIL programs all belong to the immunotherapy category. They new melanoma drug, Zelboraf, belongs in the later category.
Ask any group of melanoma researchers about promising trials and you will get a wide array of answers. Some of this relates to an inherent bias of immunotherapy vs. targeted therapy. Some if it relates to what trials they have at their own institution. Most of it is about simple differences in opinion.
I suggest you get a couple of different opinions on the issue. Ultimately your husband and you will have to decide what is the best course for your situation. This is challenging, and scary, but unfortunately that is the state of melanoma treatment.
If you decide to go with IL-2 you will need to find a treatment center that administers this drug. It is not given by just any oncologist and require specialty care during treatment. You can find centers that offer it through this site: http://www.proleukin.com/patient/treating/index.jsp
You may want to hear what they say at Siteman and also find a place that does a lot of targeted therapy work. At the very least your husband should be tested for the BRAF mutation. This occurs in about half of people with cutaneous melanoma, if he has the mutation this opens the door to additional treatment options and clinilcal trials. Several cancer centers are doing work in the targeted therapy approach including Mass General (Harvard), Sloan Kettering. Researchers from these two institutions have been at the forefront of publications, but certainly they are not the only locations doing this work.
I am afraid this has been more confusing than helpful, but maybe you can glean a bit of information through this. You can try the MRF Clinical Trial Finder and that may be of some help. Look on the site for a banner that says "Are you getting all the facts" and that will link you to the proper place to get information. It is a lot simpler than clinicaltrials.gov.
Tim–MRF
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- September 6, 2011 at 8:49 pm
Thank you so much for this information–that actually really helps a lot to give us a foundation for what the trials are focusing on. I tried reading through some of them online and without a medical degree, I am so confused by all of this!
He is Braf positive, so we know that's an option, but at this point, he only has 2 small tumors and we think he has a bit of time to try a trial or two. We're hoping to save the zelboraf for later when his tumor load gets bigger, since it only works for a limited period of time.
I will definately look into the IL-2 link–we've read several places where the yervoy can get the immune system ready and the IL-2 will work better.
We have an appointment next week at Siteman to hopefully get some more information. I'm hoping the Dr. can be unbiased and help walk us through the most promising trials and not just push his trials (although staying close to home would make it so much easier on a logistic basis). I talked to a nurse at NIH about the ACT-TIL study. It sounds promising, but an awful treatment. We're also trying to juggle the needs of our 3 young children. I'm not sure how going to Washington DC for 3-4 weeks could work.
It's all so overwhelming! We're trying to weigh the practicality of the treatment and balance the quality of life vs. quantity. If he really only has months left, does he want to spend weeks inpatient out-of-state?? I don't know.
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- September 6, 2011 at 8:49 pm
Thank you so much for this information–that actually really helps a lot to give us a foundation for what the trials are focusing on. I tried reading through some of them online and without a medical degree, I am so confused by all of this!
He is Braf positive, so we know that's an option, but at this point, he only has 2 small tumors and we think he has a bit of time to try a trial or two. We're hoping to save the zelboraf for later when his tumor load gets bigger, since it only works for a limited period of time.
I will definately look into the IL-2 link–we've read several places where the yervoy can get the immune system ready and the IL-2 will work better.
We have an appointment next week at Siteman to hopefully get some more information. I'm hoping the Dr. can be unbiased and help walk us through the most promising trials and not just push his trials (although staying close to home would make it so much easier on a logistic basis). I talked to a nurse at NIH about the ACT-TIL study. It sounds promising, but an awful treatment. We're also trying to juggle the needs of our 3 young children. I'm not sure how going to Washington DC for 3-4 weeks could work.
It's all so overwhelming! We're trying to weigh the practicality of the treatment and balance the quality of life vs. quantity. If he really only has months left, does he want to spend weeks inpatient out-of-state?? I don't know.
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- September 7, 2011 at 1:48 am
I would just like to chime in here, and say a bit about the nature of melanoma. You mentioned that "neither tumor he has now is in a place it will be fatal". While this may or may not be the case, it is wise to be aware of the fact that melanoma is a very devious cancer.
Zelboraf may work well for some people, but I am concerned that your husband may have a large tumour burden that may negate its effects to some extent. Perhaps this is the main reason why Yervoy was ineffective?
Unfortuantely, melanoma doesn't always do what we expect. It has the tendency to become aggressive and unpredictable once the tumour burden reaches a certain point. The big problem is metastasis, and new tumours may form in different locations without much warning at all.
With our present state of knowledge, your husband could require treatment that could also be regarded as aggressive with significant side effects. Treatment with IL-2 alone, or in conjunction with TIL therapy are procedures that may seriously affect the patient for a short time. However, the good news is that a small number of people who endure these procedures can hope to achieve a durable remission of their disease.
Hope this helps.
Frank from Australia
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- September 7, 2011 at 1:48 am
I would just like to chime in here, and say a bit about the nature of melanoma. You mentioned that "neither tumor he has now is in a place it will be fatal". While this may or may not be the case, it is wise to be aware of the fact that melanoma is a very devious cancer.
Zelboraf may work well for some people, but I am concerned that your husband may have a large tumour burden that may negate its effects to some extent. Perhaps this is the main reason why Yervoy was ineffective?
Unfortuantely, melanoma doesn't always do what we expect. It has the tendency to become aggressive and unpredictable once the tumour burden reaches a certain point. The big problem is metastasis, and new tumours may form in different locations without much warning at all.
With our present state of knowledge, your husband could require treatment that could also be regarded as aggressive with significant side effects. Treatment with IL-2 alone, or in conjunction with TIL therapy are procedures that may seriously affect the patient for a short time. However, the good news is that a small number of people who endure these procedures can hope to achieve a durable remission of their disease.
Hope this helps.
Frank from Australia
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- September 7, 2011 at 12:06 pm
May I echo Frank's perspectives – you should not underestimate by any stretch the capacity of melanoma to spread rapidly and shut down your options, even if in its present state it seems realtively benign. That happened to my wife (small lung tumors and skin tumors – "nothing to worry about for present") and even though she is still alive, the quality of life has greatly diminished, to the regret of me and our boys. Yes, quality of life matters, but its not as simple a trade off as not doing treatment and getting good months with kids versus being away and undergoing treatment. Bucause melanoma often does't kill you right away once it's uncontrolled – it can go to the spine (as it has with my wife) and can take many months to complete its work while the victim is debilitated and in a lousy state.
Best to do as much as you can as early as you can. We should have been at the National Cancer Institure two months before we were scheduled to go, but before we could actually get there the disease struck with a vengence. IL-2 has the best and most durable track record out there. Whether you take it alone or in conjunction with a trial you shoud consider it most strongly. But get after it before the tumor burden prevents you from doing something or disqualifies you. I realize juggling three kids and treatment at an away site seems impossible – and yet if you don't you are virtually guaranteeing the melanoma will win. You just don't know how it will go about its business and that will be perhaps an even bigger burden than what you contemplate with treatment at an away location. I don't know extent of your support group but perhaps you can build one to get your husband to either a conventional IL-2 treatment facility or to the NIH.
Apologies if this seems too harsh or direct. I wish you nothing but strength and peace as you take on this unenviable burden of caregiver and supoorter of your husband while you have to raise your kids.
Nick
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- September 7, 2011 at 12:06 pm
May I echo Frank's perspectives – you should not underestimate by any stretch the capacity of melanoma to spread rapidly and shut down your options, even if in its present state it seems realtively benign. That happened to my wife (small lung tumors and skin tumors – "nothing to worry about for present") and even though she is still alive, the quality of life has greatly diminished, to the regret of me and our boys. Yes, quality of life matters, but its not as simple a trade off as not doing treatment and getting good months with kids versus being away and undergoing treatment. Bucause melanoma often does't kill you right away once it's uncontrolled – it can go to the spine (as it has with my wife) and can take many months to complete its work while the victim is debilitated and in a lousy state.
Best to do as much as you can as early as you can. We should have been at the National Cancer Institure two months before we were scheduled to go, but before we could actually get there the disease struck with a vengence. IL-2 has the best and most durable track record out there. Whether you take it alone or in conjunction with a trial you shoud consider it most strongly. But get after it before the tumor burden prevents you from doing something or disqualifies you. I realize juggling three kids and treatment at an away site seems impossible – and yet if you don't you are virtually guaranteeing the melanoma will win. You just don't know how it will go about its business and that will be perhaps an even bigger burden than what you contemplate with treatment at an away location. I don't know extent of your support group but perhaps you can build one to get your husband to either a conventional IL-2 treatment facility or to the NIH.
Apologies if this seems too harsh or direct. I wish you nothing but strength and peace as you take on this unenviable burden of caregiver and supoorter of your husband while you have to raise your kids.
Nick
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- September 7, 2011 at 2:18 am
I guess I will toss my 2 cents in too…wondering if the location will make it surgically resectable…less tumor burden the better immunotherapy can work…at least in my case it was. I had a (6.8 cent at its widest area) removed by a thoracotomy and then began Anti PD 1 and vaccine trial at Moffitt…I have been NED ( No Evidence of disease) since March 26, 2010.
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- September 7, 2011 at 2:18 am
I guess I will toss my 2 cents in too…wondering if the location will make it surgically resectable…less tumor burden the better immunotherapy can work…at least in my case it was. I had a (6.8 cent at its widest area) removed by a thoracotomy and then began Anti PD 1 and vaccine trial at Moffitt…I have been NED ( No Evidence of disease) since March 26, 2010.
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