Metastatic stage 3b going to consult for clinical trials

This topic has 12 replies, 4 voices, and was last updated 11 years, 5 months ago by kpcollins31.

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- March 26, 2014 at 10:31 pm
- Quote
jyoakum
Participant
I have had two melanoma moles removed and lymph node axilliary dissection on the same side with one positive melanoma lymph node out of the 14 removed. I was satisfied with the "catch 'em and cut 'em" method but my oncologist wants me to look at clinical trials. Can anyone tell me of specific clinical trials they know of that have worked, what to avoid and any other specific advice? One of my big questions is: If my PET scan and brain MRI was clear, then the melanoma is microscopic at this point. How can we find something that can't be detected and when would we know when it was eradicated? I have no symptoms, just lots of scars and more to come (two more dysplastic coming off next week). Will the cure be worse than the disease? Is it worth it?

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- - March 27, 2014 at 1:11 am
  - Quote
  Marianne quinn
  Participant
  My husband just completed the 4 the infusion of the high dose ipi arm of the ipi vs interferon trial. Side effects were manageable. Benadryl for an itchy rash and watching his diet to avoid severe GI issues. There are lots of blood tests and scans. His labs have been normal. We had a big scare because something lit up in his liver. We were devastated thinking the melanoma grew during the treatment. He had a biopsy today and preliminary results are no melanoma. Maybe the ipi was killing some cells. Definitely consider a trial..i. Your melanoma is at high risk of coming back. If you are in a trial, you are watched extremely closely so that in itself is wort it. Good luck! You will feel better once you make a decision. He is stage3c
  - March 27, 2014 at 4:51 am
    
    Quote
    jogo
    Participant
    
    The trial you are writing about is E1609. My primary melanoma could not be located. My metastic melanoma was on/in my left parotid gland. I had radical (total) dissection of my left parotid and a modified radical dissection of the lymph nodes on the left side of my neck. The surgery went well. I was randomized into arm C, 3 mg ipi per Kg body mass. After 2 infusions, I had an irAE, immune related adverse event, which included ulcerative colitis and orthostatic hypotension. I was in the hospital for a total of 30 days, 5 days the first time and 24 days which started 2 weeks after my (first) discharge (from the hospital). I received excellent care in the hospital. During my second stay, I received 9 units of blood, 2 infusions of infleximab (Remicade) to deal with the ipi induced colitis, corticosteroids, and massive doses of prednisone. Even though my treatment was stopped after the second infusion, I am still in the trial being observed and receiving continued excellent care. The gastroenterologist, endocrinologist, and oncologist are working in concert. As result of an ACTH test, I am off the prednisone and corticosteroids. I'm still following a colitis diet. There have been side effects to the medications I was taking. but I'm managing. I was given the option of either no treatment, or interferon, or the clinical trial (which includes a 1/3 chance of receiving interferon). I was 71 when all this started and the no treatment option was very tempting. 25 years ago when there was no treatment available, my father died of metastic melanoma at 81. That is what pushed me to select the clinical trial. Despite my irAE, I am very glad I'm in the trial. For me and for my dad.
  - March 27, 2014 at 4:51 am
    
    Quote
    jogo
    Participant
    
    The trial you are writing about is E1609. My primary melanoma could not be located. My metastic melanoma was on/in my left parotid gland. I had radical (total) dissection of my left parotid and a modified radical dissection of the lymph nodes on the left side of my neck. The surgery went well. I was randomized into arm C, 3 mg ipi per Kg body mass. After 2 infusions, I had an irAE, immune related adverse event, which included ulcerative colitis and orthostatic hypotension. I was in the hospital for a total of 30 days, 5 days the first time and 24 days which started 2 weeks after my (first) discharge (from the hospital). I received excellent care in the hospital. During my second stay, I received 9 units of blood, 2 infusions of infleximab (Remicade) to deal with the ipi induced colitis, corticosteroids, and massive doses of prednisone. Even though my treatment was stopped after the second infusion, I am still in the trial being observed and receiving continued excellent care. The gastroenterologist, endocrinologist, and oncologist are working in concert. As result of an ACTH test, I am off the prednisone and corticosteroids. I'm still following a colitis diet. There have been side effects to the medications I was taking. but I'm managing. I was given the option of either no treatment, or interferon, or the clinical trial (which includes a 1/3 chance of receiving interferon). I was 71 when all this started and the no treatment option was very tempting. 25 years ago when there was no treatment available, my father died of metastic melanoma at 81. That is what pushed me to select the clinical trial. Despite my irAE, I am very glad I'm in the trial. For me and for my dad.
  - March 27, 2014 at 4:51 am
    
    Quote
    jogo
    Participant
    
    The trial you are writing about is E1609. My primary melanoma could not be located. My metastic melanoma was on/in my left parotid gland. I had radical (total) dissection of my left parotid and a modified radical dissection of the lymph nodes on the left side of my neck. The surgery went well. I was randomized into arm C, 3 mg ipi per Kg body mass. After 2 infusions, I had an irAE, immune related adverse event, which included ulcerative colitis and orthostatic hypotension. I was in the hospital for a total of 30 days, 5 days the first time and 24 days which started 2 weeks after my (first) discharge (from the hospital). I received excellent care in the hospital. During my second stay, I received 9 units of blood, 2 infusions of infleximab (Remicade) to deal with the ipi induced colitis, corticosteroids, and massive doses of prednisone. Even though my treatment was stopped after the second infusion, I am still in the trial being observed and receiving continued excellent care. The gastroenterologist, endocrinologist, and oncologist are working in concert. As result of an ACTH test, I am off the prednisone and corticosteroids. I'm still following a colitis diet. There have been side effects to the medications I was taking. but I'm managing. I was given the option of either no treatment, or interferon, or the clinical trial (which includes a 1/3 chance of receiving interferon). I was 71 when all this started and the no treatment option was very tempting. 25 years ago when there was no treatment available, my father died of metastic melanoma at 81. That is what pushed me to select the clinical trial. Despite my irAE, I am very glad I'm in the trial. For me and for my dad.
- - March 27, 2014 at 1:11 am
  - Quote
  Marianne quinn
  Participant
  My husband just completed the 4 the infusion of the high dose ipi arm of the ipi vs interferon trial. Side effects were manageable. Benadryl for an itchy rash and watching his diet to avoid severe GI issues. There are lots of blood tests and scans. His labs have been normal. We had a big scare because something lit up in his liver. We were devastated thinking the melanoma grew during the treatment. He had a biopsy today and preliminary results are no melanoma. Maybe the ipi was killing some cells. Definitely consider a trial..i. Your melanoma is at high risk of coming back. If you are in a trial, you are watched extremely closely so that in itself is wort it. Good luck! You will feel better once you make a decision. He is stage3c
- - March 27, 2014 at 1:11 am
  - Quote
  Marianne quinn
  Participant
  My husband just completed the 4 the infusion of the high dose ipi arm of the ipi vs interferon trial. Side effects were manageable. Benadryl for an itchy rash and watching his diet to avoid severe GI issues. There are lots of blood tests and scans. His labs have been normal. We had a big scare because something lit up in his liver. We were devastated thinking the melanoma grew during the treatment. He had a biopsy today and preliminary results are no melanoma. Maybe the ipi was killing some cells. Definitely consider a trial..i. Your melanoma is at high risk of coming back. If you are in a trial, you are watched extremely closely so that in itself is wort it. Good luck! You will feel better once you make a decision. He is stage3c
- - March 27, 2014 at 12:10 pm
  - Quote
  Linny
  Participant
  It sounds like you are Stage III and there are not many trials available for us, especially if it's not considered "advanced melanoma."
  
  However, I do know of two:
  
  There's one with a tramentinib and dabrafenib combo. It's a promising combo and it's nice that it's being offered to those of us who are Stage III: http://clinicaltrials.gov/ct2/show/NCT01682083
  
  Here's another one that tests Yervoy (Ipilimumab) against Interferon: http://clinicaltrials.gov/ct2/show/NCT01274338?term=ipilimumab+interferon+melanoma&rank=1
  
  If you qualify for a trial, it doesn't necessarily mean you'll get the drug. You may get a placebo, or in the case of the Yervoy/Interferon trial you may not get the drug you want. Also, trials vary by location. You may have to travel to participate in the trial of your choice.
  
  But what you WILL get is close scruitiny by doctors. And with melanoma you want that.
- - March 27, 2014 at 12:10 pm
  - Quote
  Linny
  Participant
  It sounds like you are Stage III and there are not many trials available for us, especially if it's not considered "advanced melanoma."
  
  However, I do know of two:
  
  There's one with a tramentinib and dabrafenib combo. It's a promising combo and it's nice that it's being offered to those of us who are Stage III: http://clinicaltrials.gov/ct2/show/NCT01682083
  
  Here's another one that tests Yervoy (Ipilimumab) against Interferon: http://clinicaltrials.gov/ct2/show/NCT01274338?term=ipilimumab+interferon+melanoma&rank=1
  
  If you qualify for a trial, it doesn't necessarily mean you'll get the drug. You may get a placebo, or in the case of the Yervoy/Interferon trial you may not get the drug you want. Also, trials vary by location. You may have to travel to participate in the trial of your choice.
  
  But what you WILL get is close scruitiny by doctors. And with melanoma you want that.
- - March 27, 2014 at 12:10 pm
  - Quote
  Linny
  Participant
  It sounds like you are Stage III and there are not many trials available for us, especially if it's not considered "advanced melanoma."
  
  However, I do know of two:
  
  There's one with a tramentinib and dabrafenib combo. It's a promising combo and it's nice that it's being offered to those of us who are Stage III: http://clinicaltrials.gov/ct2/show/NCT01682083
  
  Here's another one that tests Yervoy (Ipilimumab) against Interferon: http://clinicaltrials.gov/ct2/show/NCT01274338?term=ipilimumab+interferon+melanoma&rank=1
  
  If you qualify for a trial, it doesn't necessarily mean you'll get the drug. You may get a placebo, or in the case of the Yervoy/Interferon trial you may not get the drug you want. Also, trials vary by location. You may have to travel to participate in the trial of your choice.
  
  But what you WILL get is close scruitiny by doctors. And with melanoma you want that.
- - March 27, 2014 at 12:46 pm
  - Quote
  kpcollins31
  Participant
  This is the same question I struggled with not too long ago… when I was stage 3C NED, there were only a few treatment options available. At the time, I felt great physically. I really did not want to get involved in some treatment that would tear me down physically… my thought was I would rather preserve my strength for the fight if/when I became stage 4, which I now am. Personally, I would have felt really defeated if I undertook some harsh treatment and progressed anyway (which seems fairly common). I was also afraid that some course of treatment at that time might rule out accessibility to better treatments down the road if they were needed.
  
  I am happy with the decision I made and even though I am now stage 4, I am NED. My plan is to let them carve me like a turkey if/when the disease returns. If I get to the point where it is unresectable, then I will take on the best treatment option available at that time. Until then, I will stay physically fit and enjoy life.
  
  Kevin
- - March 27, 2014 at 12:46 pm
  - Quote
  kpcollins31
  Participant
  This is the same question I struggled with not too long ago… when I was stage 3C NED, there were only a few treatment options available. At the time, I felt great physically. I really did not want to get involved in some treatment that would tear me down physically… my thought was I would rather preserve my strength for the fight if/when I became stage 4, which I now am. Personally, I would have felt really defeated if I undertook some harsh treatment and progressed anyway (which seems fairly common). I was also afraid that some course of treatment at that time might rule out accessibility to better treatments down the road if they were needed.
  
  I am happy with the decision I made and even though I am now stage 4, I am NED. My plan is to let them carve me like a turkey if/when the disease returns. If I get to the point where it is unresectable, then I will take on the best treatment option available at that time. Until then, I will stay physically fit and enjoy life.
  
  Kevin
- - March 27, 2014 at 12:46 pm
  - Quote
  kpcollins31
  Participant
  This is the same question I struggled with not too long ago… when I was stage 3C NED, there were only a few treatment options available. At the time, I felt great physically. I really did not want to get involved in some treatment that would tear me down physically… my thought was I would rather preserve my strength for the fight if/when I became stage 4, which I now am. Personally, I would have felt really defeated if I undertook some harsh treatment and progressed anyway (which seems fairly common). I was also afraid that some course of treatment at that time might rule out accessibility to better treatments down the road if they were needed.
  
  I am happy with the decision I made and even though I am now stage 4, I am NED. My plan is to let them carve me like a turkey if/when the disease returns. If I get to the point where it is unresectable, then I will take on the best treatment option available at that time. Until then, I will stay physically fit and enjoy life.
  
  Kevin