› Forums › General Melanoma Community › Father-in-law just diagnosed with Stage IV Melanoma
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iversens.
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- February 25, 2013 at 9:38 pm
Hi,
I'm a new member and found this site while doing research on Melanoma. Two weeks ago my wife's father was diagnosed with Stage IV Melanoma. It's hitting the family hard since my wife's mother just passed away 8 months ago due to complications with diabetes. I'm trying to help by doing as much research as I can. Any suggestions or advice is much appreciated.
Here is some of the info I have on his status (I apologize if I'm too specific):
Hi,
I'm a new member and found this site while doing research on Melanoma. Two weeks ago my wife's father was diagnosed with Stage IV Melanoma. It's hitting the family hard since my wife's mother just passed away 8 months ago due to complications with diabetes. I'm trying to help by doing as much research as I can. Any suggestions or advice is much appreciated.
Here is some of the info I have on his status (I apologize if I'm too specific):
Approx 6 months ago my father-in-law found a lump in his upper arm/tricep. His GP misdiagnosed it as a fatty lump and sent him to physical therapy. The PT did hard tissue massage on the "lump" for several weeks as it kept growing and getting more painful.
Around 3 weeks ago his GP sent him to get a biopsy which is when we found out he had melanoma. He's Irish with a history of skin damage and multiple mole removals.
Two weeks ago he went through MRI, CT and PET scans. They showed the ~7cm x 6cm tumor in the arm, a 6cm x 5cm tumor in the liver and a couple very small possible tumors in the lungs. The brain MRI was clear.
He met with a surgeon to remove the tumor in his arm and a local oncologist and radiologist. The radiologist gave him the Stage IV diagnosis and said things look dire. Needless to say my wife and her dad were stunned.
Last Tuesday his surgeon successfully removed the tumor from his arm which has significantly reduced his pain. Good news! The surgeon showed us pictures of the tumor and it had grown to 14cm x 8cm in a week. Bad new.
He's recovering quickly from his surgery and should find out the results of the sentinel node biopsy tomorrow.
His oncologist has ordered a more specific CT scan of his liver and lungs this Wednesday to confirm the tumor. I'm afraid the oncologist isn't being clear enough about what this means. My father-in-law thinks he's all better. He has a follow up appt. next Monday to go over the results. I wish things would move faster.
The Dr. said if the tumor is confirmed the standard care is Yervoy. Does anyone have experience with this med?
Thanks in advance for any help.
Scott
- Replies
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- February 25, 2013 at 10:26 pm
First, is your FIL being seen by a MELANOMA oncologist? As everyone will tell you here, that's the best way to go. How old is your FIL? What type of shape is he in? Yervoy is a newer drug approved for melanoma a couple of years ago. You can do a search on this site for Yervoy, IPI or Ipilimumab — all the same thing and there are tons of postings here about that drug. The tumor that was removed should probably be tested for the BRAF mutation. There is a drug for that mutation but it is typically used when the tumor burden is high. It could be a backup plan for later. There is also IL-2 and clinical trials. Spend some time on this site and you'll find plenty of information. Drop by some evening and see if there is anyone in the chat room. There are often stage IV people there.
Unfortunately, I think there will be a wakeup call for you FIL. While surgery can be curative in some cases, stage IV melanoma most often requires more treatment than surgery alone. And many move from plan A to plan B if things continue to progress. So discuss ALL the options possible. Melanoma specialists will have access to more options and clinical trials and will be more current on what is possible.
Best wishes,
Janner
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- February 25, 2013 at 10:26 pm
First, is your FIL being seen by a MELANOMA oncologist? As everyone will tell you here, that's the best way to go. How old is your FIL? What type of shape is he in? Yervoy is a newer drug approved for melanoma a couple of years ago. You can do a search on this site for Yervoy, IPI or Ipilimumab — all the same thing and there are tons of postings here about that drug. The tumor that was removed should probably be tested for the BRAF mutation. There is a drug for that mutation but it is typically used when the tumor burden is high. It could be a backup plan for later. There is also IL-2 and clinical trials. Spend some time on this site and you'll find plenty of information. Drop by some evening and see if there is anyone in the chat room. There are often stage IV people there.
Unfortunately, I think there will be a wakeup call for you FIL. While surgery can be curative in some cases, stage IV melanoma most often requires more treatment than surgery alone. And many move from plan A to plan B if things continue to progress. So discuss ALL the options possible. Melanoma specialists will have access to more options and clinical trials and will be more current on what is possible.
Best wishes,
Janner
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- February 25, 2013 at 10:26 pm
First, is your FIL being seen by a MELANOMA oncologist? As everyone will tell you here, that's the best way to go. How old is your FIL? What type of shape is he in? Yervoy is a newer drug approved for melanoma a couple of years ago. You can do a search on this site for Yervoy, IPI or Ipilimumab — all the same thing and there are tons of postings here about that drug. The tumor that was removed should probably be tested for the BRAF mutation. There is a drug for that mutation but it is typically used when the tumor burden is high. It could be a backup plan for later. There is also IL-2 and clinical trials. Spend some time on this site and you'll find plenty of information. Drop by some evening and see if there is anyone in the chat room. There are often stage IV people there.
Unfortunately, I think there will be a wakeup call for you FIL. While surgery can be curative in some cases, stage IV melanoma most often requires more treatment than surgery alone. And many move from plan A to plan B if things continue to progress. So discuss ALL the options possible. Melanoma specialists will have access to more options and clinical trials and will be more current on what is possible.
Best wishes,
Janner
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- February 26, 2013 at 12:11 am
Thanks for your reply Janner.
No, I do not think his oncologist specializes in melanoma. After reading these posts we're already looking for one. He's in southern CA and I've read that UCLA is specializing in melanoma treatment. I think we'll check there.
He's 70 years old and in fair condition. He has type II diabetes, but he's been getting in much better health lately.
His oncologist said last week that he does not have the BRAF mutation.
Is it normal that his oncologist isn't being direct with him about the consequences of what they've found? The radiologist seemed surprised that he was the first Dr. to tell him he had Stage IV melanoma.
We're hoping for the best, but I fear the worst.
Thanks,
Scott
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- February 26, 2013 at 12:11 am
Thanks for your reply Janner.
No, I do not think his oncologist specializes in melanoma. After reading these posts we're already looking for one. He's in southern CA and I've read that UCLA is specializing in melanoma treatment. I think we'll check there.
He's 70 years old and in fair condition. He has type II diabetes, but he's been getting in much better health lately.
His oncologist said last week that he does not have the BRAF mutation.
Is it normal that his oncologist isn't being direct with him about the consequences of what they've found? The radiologist seemed surprised that he was the first Dr. to tell him he had Stage IV melanoma.
We're hoping for the best, but I fear the worst.
Thanks,
Scott
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- February 26, 2013 at 12:11 am
Thanks for your reply Janner.
No, I do not think his oncologist specializes in melanoma. After reading these posts we're already looking for one. He's in southern CA and I've read that UCLA is specializing in melanoma treatment. I think we'll check there.
He's 70 years old and in fair condition. He has type II diabetes, but he's been getting in much better health lately.
His oncologist said last week that he does not have the BRAF mutation.
Is it normal that his oncologist isn't being direct with him about the consequences of what they've found? The radiologist seemed surprised that he was the first Dr. to tell him he had Stage IV melanoma.
We're hoping for the best, but I fear the worst.
Thanks,
Scott
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- February 26, 2013 at 1:56 am
The oncologist should have been straight with him. This is not a death sentence but this is extremely serious. (My Dad is 88 with stage IV melanoma and doing no treatment – for him, things have been slow growing. He doesn't want to know his prognosis and the docs haven't really pushed it with him. But he has made it clear he values quality). Having diabetes may prevent you FIL from participating in clinical trials. When researching, you would need to check the exclusion criteria for that. Realistically, Yervoy is probably a reasonable starting place. I would, however, get a second opinion only to make sure that all bases are covered. You can always stay local if the 2nd opinion concurs.
Best wishes,
Janner
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- February 26, 2013 at 1:56 am
The oncologist should have been straight with him. This is not a death sentence but this is extremely serious. (My Dad is 88 with stage IV melanoma and doing no treatment – for him, things have been slow growing. He doesn't want to know his prognosis and the docs haven't really pushed it with him. But he has made it clear he values quality). Having diabetes may prevent you FIL from participating in clinical trials. When researching, you would need to check the exclusion criteria for that. Realistically, Yervoy is probably a reasonable starting place. I would, however, get a second opinion only to make sure that all bases are covered. You can always stay local if the 2nd opinion concurs.
Best wishes,
Janner
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- February 26, 2013 at 1:56 am
The oncologist should have been straight with him. This is not a death sentence but this is extremely serious. (My Dad is 88 with stage IV melanoma and doing no treatment – for him, things have been slow growing. He doesn't want to know his prognosis and the docs haven't really pushed it with him. But he has made it clear he values quality). Having diabetes may prevent you FIL from participating in clinical trials. When researching, you would need to check the exclusion criteria for that. Realistically, Yervoy is probably a reasonable starting place. I would, however, get a second opinion only to make sure that all bases are covered. You can always stay local if the 2nd opinion concurs.
Best wishes,
Janner
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- February 26, 2013 at 12:54 am
Thanks for your reply Janner.
No, I do not think his oncologist specializes in melanoma. After reading these posts we're already looking for one. He's in southern CA and I've read that UCLA is specializing in melanoma treatment. I think we'll check there.
He's 70 years old and in fair condition. He has type II diabetes, but he's been getting in much better health lately.
His oncologist said last week that he does not have the BRAF mutation.
Is it normal that his oncologist isn't being direct with him about the consequences of what they've found? The radiologist seemed surprised that he was the first Dr. to tell him he had Stage IV melanoma.
We're hoping for the best, but I fear the worst.
Thanks,
Scott
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- February 26, 2013 at 12:54 am
Thanks for your reply Janner.
No, I do not think his oncologist specializes in melanoma. After reading these posts we're already looking for one. He's in southern CA and I've read that UCLA is specializing in melanoma treatment. I think we'll check there.
He's 70 years old and in fair condition. He has type II diabetes, but he's been getting in much better health lately.
His oncologist said last week that he does not have the BRAF mutation.
Is it normal that his oncologist isn't being direct with him about the consequences of what they've found? The radiologist seemed surprised that he was the first Dr. to tell him he had Stage IV melanoma.
We're hoping for the best, but I fear the worst.
Thanks,
Scott
-
- February 26, 2013 at 12:54 am
Thanks for your reply Janner.
No, I do not think his oncologist specializes in melanoma. After reading these posts we're already looking for one. He's in southern CA and I've read that UCLA is specializing in melanoma treatment. I think we'll check there.
He's 70 years old and in fair condition. He has type II diabetes, but he's been getting in much better health lately.
His oncologist said last week that he does not have the BRAF mutation.
Is it normal that his oncologist isn't being direct with him about the consequences of what they've found? The radiologist seemed surprised that he was the first Dr. to tell him he had Stage IV melanoma.
We're hoping for the best, but I fear the worst.
Thanks,
Scott
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- February 26, 2013 at 4:06 am
Hello Scott,
I am sorry to hear about your Father-in-law. I agree with Janner that the best thing is a melanoma specialist.
As for the Yervoy (ipi or Ipilimumab) my husband started a clinical trial while this was not yet approved. He is younger but has had terrific results from this drug. You can read his profile and find out about his journey. He was stage IV with it in the lungs, liver and on the cervical sprine (unresectable). He was 59 when he started on it and every 12 weeks he has another infusion for 2 years now with little side effects.
I hope this helps and don't give up because good positive mental attitude (PMA) can help alot. Also have plans B and plan C ready to go if plan A doesn't work.
Judy (loving wife to Gene Stage IV and now NED (no evidence of disease)
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- February 26, 2013 at 4:06 am
Hello Scott,
I am sorry to hear about your Father-in-law. I agree with Janner that the best thing is a melanoma specialist.
As for the Yervoy (ipi or Ipilimumab) my husband started a clinical trial while this was not yet approved. He is younger but has had terrific results from this drug. You can read his profile and find out about his journey. He was stage IV with it in the lungs, liver and on the cervical sprine (unresectable). He was 59 when he started on it and every 12 weeks he has another infusion for 2 years now with little side effects.
I hope this helps and don't give up because good positive mental attitude (PMA) can help alot. Also have plans B and plan C ready to go if plan A doesn't work.
Judy (loving wife to Gene Stage IV and now NED (no evidence of disease)
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- February 26, 2013 at 4:06 am
Hello Scott,
I am sorry to hear about your Father-in-law. I agree with Janner that the best thing is a melanoma specialist.
As for the Yervoy (ipi or Ipilimumab) my husband started a clinical trial while this was not yet approved. He is younger but has had terrific results from this drug. You can read his profile and find out about his journey. He was stage IV with it in the lungs, liver and on the cervical sprine (unresectable). He was 59 when he started on it and every 12 weeks he has another infusion for 2 years now with little side effects.
I hope this helps and don't give up because good positive mental attitude (PMA) can help alot. Also have plans B and plan C ready to go if plan A doesn't work.
Judy (loving wife to Gene Stage IV and now NED (no evidence of disease)
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- February 26, 2013 at 9:53 am
I'm a couple of years older than your FIL. I was blindsided by my Stage IV and had looks of pity from a number of physicians I consulted during the early weeks since they had been in the profession for a number of years and were used to the poor outcomes of most who had the disease some years back. I had a nephew, 29, for example, who was diagnosed in 1994 and died the following year. Yesterday I talked to a woman in a store whose husband had 7 months after diagnosis when he contracted it about 10 years ago. She was amazed to see how well I look and am doing and I told her about my treatment with Yervoy. She wished their had been more options for her husband. But there are. Stage IV is not a death sentence. If I could be of any help to your FIL as someone his own age who has gone through what he is going through, please feel free to contact me privately. I would be happy to email or talk to him on the phone.
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- February 26, 2013 at 9:53 am
I'm a couple of years older than your FIL. I was blindsided by my Stage IV and had looks of pity from a number of physicians I consulted during the early weeks since they had been in the profession for a number of years and were used to the poor outcomes of most who had the disease some years back. I had a nephew, 29, for example, who was diagnosed in 1994 and died the following year. Yesterday I talked to a woman in a store whose husband had 7 months after diagnosis when he contracted it about 10 years ago. She was amazed to see how well I look and am doing and I told her about my treatment with Yervoy. She wished their had been more options for her husband. But there are. Stage IV is not a death sentence. If I could be of any help to your FIL as someone his own age who has gone through what he is going through, please feel free to contact me privately. I would be happy to email or talk to him on the phone.
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- February 26, 2013 at 9:53 am
I'm a couple of years older than your FIL. I was blindsided by my Stage IV and had looks of pity from a number of physicians I consulted during the early weeks since they had been in the profession for a number of years and were used to the poor outcomes of most who had the disease some years back. I had a nephew, 29, for example, who was diagnosed in 1994 and died the following year. Yesterday I talked to a woman in a store whose husband had 7 months after diagnosis when he contracted it about 10 years ago. She was amazed to see how well I look and am doing and I told her about my treatment with Yervoy. She wished their had been more options for her husband. But there are. Stage IV is not a death sentence. If I could be of any help to your FIL as someone his own age who has gone through what he is going through, please feel free to contact me privately. I would be happy to email or talk to him on the phone.
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Tagged: cutaneous melanoma
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