› Forums › General Melanoma Community › What do you think?
- This topic has 24 replies, 4 voices, and was last updated 12 years, 3 months ago by
atcchris.
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- January 24, 2012 at 8:08 pm
I know, I know, it's my decision and I gotta be good with it, but wondering what some fellow warriors think about the rationale.
I was initiall diagnosed in January 2009, lesion on my back.. can't remember the depth, but I know there was some concern that it was deep. It had progressed to the sentinal node, but no other of all the other nodes in the cluster.
I did interferon, one month high dose, then started on the rest of the year and made it for 5 more months but decided to stop it because the side effects were just so bad.
I know, I know, it's my decision and I gotta be good with it, but wondering what some fellow warriors think about the rationale.
I was initiall diagnosed in January 2009, lesion on my back.. can't remember the depth, but I know there was some concern that it was deep. It had progressed to the sentinal node, but no other of all the other nodes in the cluster.
I did interferon, one month high dose, then started on the rest of the year and made it for 5 more months but decided to stop it because the side effects were just so bad.
Scans every 3 months since then.. started with PET and MRI, then after a year, CT and MRI. All is well until June, when they saw a spot with the CT on my lung. Next scan, spot had grown, so a PET was done, and it wasn't particularly "hot", so 3 months later, another PET showed still not "hot", but had grown 3mm (doubled in size). Decided to do laproscopic surgery to remove it, and it turned out to be melanoma. No other evidence of disease at present.
Talked to my surgical oncologist, who said there were 3 options: watch and wait to see if something else popped up, see if it has the BRAF mutation and then take the pill (ZELBORAF), or take YERVOY. He said if it were him, he'd put in the port, do the YERVOY and be done with it and referred me to the medical oncologist who had administered the interferon. In talking with this doctor, he echoed my options, but added some information. He told me that, over time ZELBORAF lost its' effectiveness. In a case where there was no tumor load, a person could conceivably take it indefinitely and never know if it had done any good at all. YERVOY usually was done 4 times, but he had a 78 year old patient with significant tumor in his groin who respended quite well, and continues on a once every 3 month maintenance regimen.
While I was there, my medical oncologist called the surgical one and they talked about my case together, and both seemed comfortable with a plan to wait, watch and scan, and if something popped up, treat it with ZELBORAF initially to see if ZELBORAF could get rid of it.. If the tumor could be eliminated with ZELBORAF, fine and good, but if only stability was gained, if the tumor was operable, surgically remove it and continue on ZELBORAF until another tumor showed up.. otherwise, go on and try YERVOY.
This seems reasonable to me. On the other hand, there is the thought that there's less than 20% chance that I don't have anything else pop up, so maybe I should hit whatever's in there as hard as I can at the start in hopes of eradicating it all while it's just a few cells running around my bloodstream.
Just hard to know if I'd be using all those drugs and enduring the side effects for nothing or if the odds really are great that taking one of these new drugs would actually wipe out whatever melanoma cells I have.
Any thoughts? As I said, I'm leaning toward watch, wait and scan, knowing that the odds are I'll have new tumors, and I have no way of knowing where they might show up.
Thanks for your responses… and don't worry.. you're not likely to offend me by any of your thoughts on the subject. I'm in information absorbing mode.
Chris
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- January 24, 2012 at 8:30 pm
I guess my thinking is why mess with Zelboraf if it losses its effectiveness. Wait and keep that in your arsenal. There are many clinical trials out there with lots of hope.
Are they testing the tumor they took out to see if it has the BRAF mutation?
Why not do Yervoy? Why wait until something else pops up?
I'm not sure how old you are. My thoughts are to try something systemic to try and kick the butt of anything trying to get a stranglehold on you.
We did the wait and see with my husband when he was stage 2. That bought us 6 1/2 years. Hind sight being what it is….what if we had done something (i.e. interferon) systemic then? would he have melanoma again? Would it have held it off longer?
Eventually, melanoma survivors run out of places to cut the melanoma off of. When it returns, it is usually to a place where we can't get to it.
All told, it is your decision but I too am a firm believer in arming myself with knowledge. Unfortunately, with the beast melanoma, there is no clear cut answer which fits all patients. It truly is an individual cancer with individual treatment plans.
Best wishes to you Chris whatever treatment you choose!
barb
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- January 24, 2012 at 8:30 pm
I guess my thinking is why mess with Zelboraf if it losses its effectiveness. Wait and keep that in your arsenal. There are many clinical trials out there with lots of hope.
Are they testing the tumor they took out to see if it has the BRAF mutation?
Why not do Yervoy? Why wait until something else pops up?
I'm not sure how old you are. My thoughts are to try something systemic to try and kick the butt of anything trying to get a stranglehold on you.
We did the wait and see with my husband when he was stage 2. That bought us 6 1/2 years. Hind sight being what it is….what if we had done something (i.e. interferon) systemic then? would he have melanoma again? Would it have held it off longer?
Eventually, melanoma survivors run out of places to cut the melanoma off of. When it returns, it is usually to a place where we can't get to it.
All told, it is your decision but I too am a firm believer in arming myself with knowledge. Unfortunately, with the beast melanoma, there is no clear cut answer which fits all patients. It truly is an individual cancer with individual treatment plans.
Best wishes to you Chris whatever treatment you choose!
barb
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- January 24, 2012 at 8:58 pm
Thanks Barb..
I'm 48.. The tumor did have the BRAF mutation. Good question as to "why not do YERVOY" (This is why I asked for thoughts because sometimes someone else can crystallize things in ways I haven't) I think the only reason is that I'm afraid it might be a waste of several things:
pain (I know, not that much.. but recovering from surgery to put in a port and take one out, or, if not doing the port, all the 16 or so vein sticks (at a minimum) plus whatever side effects (hearing lots of good things about how the side effects are so much less than interferon),
money (I do have insurance, but this stuff is wacky expensive! I know I probably need to get that stupid frugal mentality away from myself, but I hate the idea of using over $100000 worth of drugs when it might not even be doing anyhing. Of course, if it wiped out all the cancer cells in my blood, it would be a huge bargain!)
Anything else? Maybe nothing else possibly wasted?
I think if I thought taking YERVOY or ZELBORAF now would likely (greater than 50% chance) wipe out all the rest of the cancer cells in my bloodstream, I think I'd do it. But I don't know if that's a reasonable assumption I could make. If the odds of it wiping out all the cancer calls are about the same as they are of another recurrence with no treatment, then I think it's reasonable to wait.
I think the rest of what you said is what makes this disease so maddening.. we truly don't have answers as to what the "odds" are, and even when we do have clinical results, the individualized nature of things really makes it a throw at the dart board sometimes.
I know this.. if I had any clear evidence of the disease right now, I'd choose one of the treatments. So what does that say?
Anyhow, hope I don't come across as argumentative.. your observations made me think and that's what I was after.
Thanks again!
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- January 24, 2012 at 9:15 pm
Chris,
My husband is part of the clinical trial. He doesn't have a port. He receives infusions every 21 days. They do labs the morning of his infusion ( 1st poke) and then the IV for the infusion ( 2nd poke).
He has not had any side effects ( I abhor saying that, afraid it will change that!). He is working every day.
He is stage 3 this time.
In the 6 1/2 years he was NED he changed his lifestyle to include supplements. He sees a naturopath at our local hospital. We think that this helped delay recurrence. There was evidence of necrosis in the tumor they removed. That being said, diet alone, we feel, cannot be enough for him.
I have pushed for systemic treatment because I don't want any time taken from us by not doing anything. I want to be able to say that we did everything we could to battle the demon!
I feel that I am just as much a part of this as he is. It's not my body, but in a way it is. We are of one body since we became married. It is my fight as much as it is his. I love him and want to grow old with him.
With this dreaded cancer, odds certainly are not in anyone's favor. I feel like you have to take what you can get. We all know there is a 100% chance of death. When is the question.
barb
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- January 25, 2012 at 2:58 pm
Hi Chris –
Thought I'd weigh in with my story as well. Of course it comes down to what everyone is most comfortable with. Last Jan I had a CT scan done that showed 12+ small nodules in both of my lungs. I am being treated at Sloan. My doctor didn't want to wait to see what happen on the next 3 month scan. So he had me see a Thoracic surgeon to do a VAT's procedure and biopsy the spots. When speaking with that surgeon I remember my first appointment with him where he looked at me and said 'I highly doubt this is Melanoma'.
March 1st last year I went under for the VAT's procedure. They removed 2 small spots from my left lung. The first one they did a frozen test on and when I came too confirmed Melanoma in the lungs. The other spot also came back as Melanoma. I then started a panic mode of Nov 2010 I was clear and now in Mar 2011 had 12+ spots! My ability to wait and be patient was tested as we waited on a BRAF trial to open at Sloan. When it did finally open I was scanned again in April only to find that all the spots but 1 was gone! So we decided to wait. 6 weeks later I was scanned again and all the spots were gone! In this time also Ipi and BRAF were approved by the FDA. My doctor and I decided to continue a watch and watch. We were afraid if my body was keeping things away on it's own – we didn't want to introduce something to throw things off whack! In Nov my scans were still clean! I'm starting to get very anxious about my Feb scans since I had the flu really bad over the holidays and have swollen lymph node in my neck. But we'll add neck scans to Feb scans.
Best of luck. There is no real easy answer – just follow what you are confomtable with. If something appears – I'm sure my next plan will be to do Ipi first. I am BRAF + so that is an option and there are plenty of trial's out there too. I should add that to date I haven't done any drug treatments…
Cheers,
Erin
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- January 25, 2012 at 2:58 pm
Hi Chris –
Thought I'd weigh in with my story as well. Of course it comes down to what everyone is most comfortable with. Last Jan I had a CT scan done that showed 12+ small nodules in both of my lungs. I am being treated at Sloan. My doctor didn't want to wait to see what happen on the next 3 month scan. So he had me see a Thoracic surgeon to do a VAT's procedure and biopsy the spots. When speaking with that surgeon I remember my first appointment with him where he looked at me and said 'I highly doubt this is Melanoma'.
March 1st last year I went under for the VAT's procedure. They removed 2 small spots from my left lung. The first one they did a frozen test on and when I came too confirmed Melanoma in the lungs. The other spot also came back as Melanoma. I then started a panic mode of Nov 2010 I was clear and now in Mar 2011 had 12+ spots! My ability to wait and be patient was tested as we waited on a BRAF trial to open at Sloan. When it did finally open I was scanned again in April only to find that all the spots but 1 was gone! So we decided to wait. 6 weeks later I was scanned again and all the spots were gone! In this time also Ipi and BRAF were approved by the FDA. My doctor and I decided to continue a watch and watch. We were afraid if my body was keeping things away on it's own – we didn't want to introduce something to throw things off whack! In Nov my scans were still clean! I'm starting to get very anxious about my Feb scans since I had the flu really bad over the holidays and have swollen lymph node in my neck. But we'll add neck scans to Feb scans.
Best of luck. There is no real easy answer – just follow what you are confomtable with. If something appears – I'm sure my next plan will be to do Ipi first. I am BRAF + so that is an option and there are plenty of trial's out there too. I should add that to date I haven't done any drug treatments…
Cheers,
Erin
-
- January 25, 2012 at 2:58 pm
Hi Chris –
Thought I'd weigh in with my story as well. Of course it comes down to what everyone is most comfortable with. Last Jan I had a CT scan done that showed 12+ small nodules in both of my lungs. I am being treated at Sloan. My doctor didn't want to wait to see what happen on the next 3 month scan. So he had me see a Thoracic surgeon to do a VAT's procedure and biopsy the spots. When speaking with that surgeon I remember my first appointment with him where he looked at me and said 'I highly doubt this is Melanoma'.
March 1st last year I went under for the VAT's procedure. They removed 2 small spots from my left lung. The first one they did a frozen test on and when I came too confirmed Melanoma in the lungs. The other spot also came back as Melanoma. I then started a panic mode of Nov 2010 I was clear and now in Mar 2011 had 12+ spots! My ability to wait and be patient was tested as we waited on a BRAF trial to open at Sloan. When it did finally open I was scanned again in April only to find that all the spots but 1 was gone! So we decided to wait. 6 weeks later I was scanned again and all the spots were gone! In this time also Ipi and BRAF were approved by the FDA. My doctor and I decided to continue a watch and watch. We were afraid if my body was keeping things away on it's own – we didn't want to introduce something to throw things off whack! In Nov my scans were still clean! I'm starting to get very anxious about my Feb scans since I had the flu really bad over the holidays and have swollen lymph node in my neck. But we'll add neck scans to Feb scans.
Best of luck. There is no real easy answer – just follow what you are confomtable with. If something appears – I'm sure my next plan will be to do Ipi first. I am BRAF + so that is an option and there are plenty of trial's out there too. I should add that to date I haven't done any drug treatments…
Cheers,
Erin
-
- January 24, 2012 at 9:15 pm
Chris,
My husband is part of the clinical trial. He doesn't have a port. He receives infusions every 21 days. They do labs the morning of his infusion ( 1st poke) and then the IV for the infusion ( 2nd poke).
He has not had any side effects ( I abhor saying that, afraid it will change that!). He is working every day.
He is stage 3 this time.
In the 6 1/2 years he was NED he changed his lifestyle to include supplements. He sees a naturopath at our local hospital. We think that this helped delay recurrence. There was evidence of necrosis in the tumor they removed. That being said, diet alone, we feel, cannot be enough for him.
I have pushed for systemic treatment because I don't want any time taken from us by not doing anything. I want to be able to say that we did everything we could to battle the demon!
I feel that I am just as much a part of this as he is. It's not my body, but in a way it is. We are of one body since we became married. It is my fight as much as it is his. I love him and want to grow old with him.
With this dreaded cancer, odds certainly are not in anyone's favor. I feel like you have to take what you can get. We all know there is a 100% chance of death. When is the question.
barb
-
- January 24, 2012 at 9:15 pm
Chris,
My husband is part of the clinical trial. He doesn't have a port. He receives infusions every 21 days. They do labs the morning of his infusion ( 1st poke) and then the IV for the infusion ( 2nd poke).
He has not had any side effects ( I abhor saying that, afraid it will change that!). He is working every day.
He is stage 3 this time.
In the 6 1/2 years he was NED he changed his lifestyle to include supplements. He sees a naturopath at our local hospital. We think that this helped delay recurrence. There was evidence of necrosis in the tumor they removed. That being said, diet alone, we feel, cannot be enough for him.
I have pushed for systemic treatment because I don't want any time taken from us by not doing anything. I want to be able to say that we did everything we could to battle the demon!
I feel that I am just as much a part of this as he is. It's not my body, but in a way it is. We are of one body since we became married. It is my fight as much as it is his. I love him and want to grow old with him.
With this dreaded cancer, odds certainly are not in anyone's favor. I feel like you have to take what you can get. We all know there is a 100% chance of death. When is the question.
barb
-
- January 24, 2012 at 8:58 pm
Thanks Barb..
I'm 48.. The tumor did have the BRAF mutation. Good question as to "why not do YERVOY" (This is why I asked for thoughts because sometimes someone else can crystallize things in ways I haven't) I think the only reason is that I'm afraid it might be a waste of several things:
pain (I know, not that much.. but recovering from surgery to put in a port and take one out, or, if not doing the port, all the 16 or so vein sticks (at a minimum) plus whatever side effects (hearing lots of good things about how the side effects are so much less than interferon),
money (I do have insurance, but this stuff is wacky expensive! I know I probably need to get that stupid frugal mentality away from myself, but I hate the idea of using over $100000 worth of drugs when it might not even be doing anyhing. Of course, if it wiped out all the cancer cells in my blood, it would be a huge bargain!)
Anything else? Maybe nothing else possibly wasted?
I think if I thought taking YERVOY or ZELBORAF now would likely (greater than 50% chance) wipe out all the rest of the cancer cells in my bloodstream, I think I'd do it. But I don't know if that's a reasonable assumption I could make. If the odds of it wiping out all the cancer calls are about the same as they are of another recurrence with no treatment, then I think it's reasonable to wait.
I think the rest of what you said is what makes this disease so maddening.. we truly don't have answers as to what the "odds" are, and even when we do have clinical results, the individualized nature of things really makes it a throw at the dart board sometimes.
I know this.. if I had any clear evidence of the disease right now, I'd choose one of the treatments. So what does that say?
Anyhow, hope I don't come across as argumentative.. your observations made me think and that's what I was after.
Thanks again!
-
- January 24, 2012 at 8:58 pm
Thanks Barb..
I'm 48.. The tumor did have the BRAF mutation. Good question as to "why not do YERVOY" (This is why I asked for thoughts because sometimes someone else can crystallize things in ways I haven't) I think the only reason is that I'm afraid it might be a waste of several things:
pain (I know, not that much.. but recovering from surgery to put in a port and take one out, or, if not doing the port, all the 16 or so vein sticks (at a minimum) plus whatever side effects (hearing lots of good things about how the side effects are so much less than interferon),
money (I do have insurance, but this stuff is wacky expensive! I know I probably need to get that stupid frugal mentality away from myself, but I hate the idea of using over $100000 worth of drugs when it might not even be doing anyhing. Of course, if it wiped out all the cancer cells in my blood, it would be a huge bargain!)
Anything else? Maybe nothing else possibly wasted?
I think if I thought taking YERVOY or ZELBORAF now would likely (greater than 50% chance) wipe out all the rest of the cancer cells in my bloodstream, I think I'd do it. But I don't know if that's a reasonable assumption I could make. If the odds of it wiping out all the cancer calls are about the same as they are of another recurrence with no treatment, then I think it's reasonable to wait.
I think the rest of what you said is what makes this disease so maddening.. we truly don't have answers as to what the "odds" are, and even when we do have clinical results, the individualized nature of things really makes it a throw at the dart board sometimes.
I know this.. if I had any clear evidence of the disease right now, I'd choose one of the treatments. So what does that say?
Anyhow, hope I don't come across as argumentative.. your observations made me think and that's what I was after.
Thanks again!
-
- January 24, 2012 at 8:30 pm
I guess my thinking is why mess with Zelboraf if it losses its effectiveness. Wait and keep that in your arsenal. There are many clinical trials out there with lots of hope.
Are they testing the tumor they took out to see if it has the BRAF mutation?
Why not do Yervoy? Why wait until something else pops up?
I'm not sure how old you are. My thoughts are to try something systemic to try and kick the butt of anything trying to get a stranglehold on you.
We did the wait and see with my husband when he was stage 2. That bought us 6 1/2 years. Hind sight being what it is….what if we had done something (i.e. interferon) systemic then? would he have melanoma again? Would it have held it off longer?
Eventually, melanoma survivors run out of places to cut the melanoma off of. When it returns, it is usually to a place where we can't get to it.
All told, it is your decision but I too am a firm believer in arming myself with knowledge. Unfortunately, with the beast melanoma, there is no clear cut answer which fits all patients. It truly is an individual cancer with individual treatment plans.
Best wishes to you Chris whatever treatment you choose!
barb
-
- January 26, 2012 at 12:11 pm
Chris, PET scans are usually not good at detecting very small melanoma lesions and this would explain why the spot wasn't really "hot".
Regarding treatment options for new mets, I would say that researchers are now confirming that Zelboraf has a problem with the duration of its effectiveness. I feel that the best treatments available at the moment include Yervoy (ipi), IL-2 (interleukin-2), TIL treatment (adoptive cell therapy), or an anti PD-1 (MDX-1106) clinical trial. Some early results of anti PD-1 trials appear to be very promising from what I have read.
The concept of watch, wait and scan is ok providing one is vigilant and proactive.
Hope this helps
Frank from Australia
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- January 26, 2012 at 12:11 pm
Chris, PET scans are usually not good at detecting very small melanoma lesions and this would explain why the spot wasn't really "hot".
Regarding treatment options for new mets, I would say that researchers are now confirming that Zelboraf has a problem with the duration of its effectiveness. I feel that the best treatments available at the moment include Yervoy (ipi), IL-2 (interleukin-2), TIL treatment (adoptive cell therapy), or an anti PD-1 (MDX-1106) clinical trial. Some early results of anti PD-1 trials appear to be very promising from what I have read.
The concept of watch, wait and scan is ok providing one is vigilant and proactive.
Hope this helps
Frank from Australia
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- January 26, 2012 at 12:11 pm
Chris, PET scans are usually not good at detecting very small melanoma lesions and this would explain why the spot wasn't really "hot".
Regarding treatment options for new mets, I would say that researchers are now confirming that Zelboraf has a problem with the duration of its effectiveness. I feel that the best treatments available at the moment include Yervoy (ipi), IL-2 (interleukin-2), TIL treatment (adoptive cell therapy), or an anti PD-1 (MDX-1106) clinical trial. Some early results of anti PD-1 trials appear to be very promising from what I have read.
The concept of watch, wait and scan is ok providing one is vigilant and proactive.
Hope this helps
Frank from Australia
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