› Forums › General Melanoma Community › Stage 4 melanoma
- This topic has 18 replies, 4 voices, and was last updated 9 years, 10 months ago by
BrianP.
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- June 24, 2014 at 6:40 pm
Just came back from an appointment with the local oncologist who administered my chemo (I am a patient at Sloan). He told me that melanoma can possibly be cured at stage 3 by chemo but if it hits stage 4 it is not considered curable. Since the recurrence rate is so high does that just mean that dying is the only option when the scans come back positive?
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- June 24, 2014 at 7:02 pm
No , dying is not the only option.
With the new treatments becoming available for melanoma, it lloks like disease management will change drastically for this cancer.
It is quite possible that they will be able to keep fighting this cancer back , perhaps even for a person's whole lifetime. Immunotherapy looks quite promising.
Also, even if you go by past statistics, a certain percentage of melanoma patients do not die and are still alive many years after diagnosis. If 15 percent of the people keep on living with melanoma, isnt it possible that you could be one of that group ?
Look forward and keep living.
And like my sister used to say ;
" Dont look back, they might be gaining on you ! "
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- June 24, 2014 at 7:02 pm
No , dying is not the only option.
With the new treatments becoming available for melanoma, it lloks like disease management will change drastically for this cancer.
It is quite possible that they will be able to keep fighting this cancer back , perhaps even for a person's whole lifetime. Immunotherapy looks quite promising.
Also, even if you go by past statistics, a certain percentage of melanoma patients do not die and are still alive many years after diagnosis. If 15 percent of the people keep on living with melanoma, isnt it possible that you could be one of that group ?
Look forward and keep living.
And like my sister used to say ;
" Dont look back, they might be gaining on you ! "
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- June 24, 2014 at 7:02 pm
No , dying is not the only option.
With the new treatments becoming available for melanoma, it lloks like disease management will change drastically for this cancer.
It is quite possible that they will be able to keep fighting this cancer back , perhaps even for a person's whole lifetime. Immunotherapy looks quite promising.
Also, even if you go by past statistics, a certain percentage of melanoma patients do not die and are still alive many years after diagnosis. If 15 percent of the people keep on living with melanoma, isnt it possible that you could be one of that group ?
Look forward and keep living.
And like my sister used to say ;
" Dont look back, they might be gaining on you ! "
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- June 25, 2014 at 12:32 am
Are you being treated by a melanoma specialist? Sloan is a wonderful facility but if you are not seeing a melanoma specialist I highly suggest you seek one out and get a second opinion. Some of the things in your post lead me to believe you are not under the care of a melanoma specialist. You stated you are stage III and I am assuming you are stage III unresectable since you are receiving chemo. Historically chemo does not have a great success rate with melanoma. I can see possibly using chemo or radiation in combination with another immunotherapy or targeted therapy but chemo on it's own would not be the recommendation of many if any melanoma experts. I really want to address your last question as well but I can't seem to find the right words now. I'll just say I'm stage IV and I don't consider dying my only option.
Brian
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- June 25, 2014 at 12:23 pm
I am stage III resected. The problem is that the diagnosis is mucosal melanoma with a wild type mutation – a rare cancer with a rare mutation.
The chemo I received was a combination of two older chemo drugs that had been part of a very small clinical trial in China where mucosal melanoma is more prevalent than here.
My biggest problem is that there is so much information available on melanoma – just not the kind I have. At one point my doctor suggested ipi and a week later research comes out that ipi is less than 7% effective on mucosal melanoma. I'm not a scientist, but I am numbers person, and 7 has a lot more in common with 0 than it does with 100.
I'm actually not as pessismistic and I was feeling yesterday. The doctor I saw yesterday is nice enough, but his practice is primarily administering infusions – I only went to him because Sloan was too far away to get that done in New York. I think is would be best for me to limit my doctors visits to sloan where people are actually excited abuot the future of cancer treatment.
Thank you for listening. All of us have bad days now and then.
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- June 25, 2014 at 12:23 pm
I am stage III resected. The problem is that the diagnosis is mucosal melanoma with a wild type mutation – a rare cancer with a rare mutation.
The chemo I received was a combination of two older chemo drugs that had been part of a very small clinical trial in China where mucosal melanoma is more prevalent than here.
My biggest problem is that there is so much information available on melanoma – just not the kind I have. At one point my doctor suggested ipi and a week later research comes out that ipi is less than 7% effective on mucosal melanoma. I'm not a scientist, but I am numbers person, and 7 has a lot more in common with 0 than it does with 100.
I'm actually not as pessismistic and I was feeling yesterday. The doctor I saw yesterday is nice enough, but his practice is primarily administering infusions – I only went to him because Sloan was too far away to get that done in New York. I think is would be best for me to limit my doctors visits to sloan where people are actually excited abuot the future of cancer treatment.
Thank you for listening. All of us have bad days now and then.
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- June 25, 2014 at 12:23 pm
I am stage III resected. The problem is that the diagnosis is mucosal melanoma with a wild type mutation – a rare cancer with a rare mutation.
The chemo I received was a combination of two older chemo drugs that had been part of a very small clinical trial in China where mucosal melanoma is more prevalent than here.
My biggest problem is that there is so much information available on melanoma – just not the kind I have. At one point my doctor suggested ipi and a week later research comes out that ipi is less than 7% effective on mucosal melanoma. I'm not a scientist, but I am numbers person, and 7 has a lot more in common with 0 than it does with 100.
I'm actually not as pessismistic and I was feeling yesterday. The doctor I saw yesterday is nice enough, but his practice is primarily administering infusions – I only went to him because Sloan was too far away to get that done in New York. I think is would be best for me to limit my doctors visits to sloan where people are actually excited abuot the future of cancer treatment.
Thank you for listening. All of us have bad days now and then.
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- June 26, 2014 at 2:50 am
I admit I'm not as familiar about mucosal melanoma but after reading a little the treatment makes a lot more sense to me now. I remember seeing some conversations on MIF. Not sure if you check that forum or not but here's a thread I saw recently. Best of luck to you.
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34918&p=44127&hilit=mucosal#p44127
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- June 26, 2014 at 2:50 am
I admit I'm not as familiar about mucosal melanoma but after reading a little the treatment makes a lot more sense to me now. I remember seeing some conversations on MIF. Not sure if you check that forum or not but here's a thread I saw recently. Best of luck to you.
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34918&p=44127&hilit=mucosal#p44127
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- June 26, 2014 at 2:50 am
I admit I'm not as familiar about mucosal melanoma but after reading a little the treatment makes a lot more sense to me now. I remember seeing some conversations on MIF. Not sure if you check that forum or not but here's a thread I saw recently. Best of luck to you.
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34918&p=44127&hilit=mucosal#p44127
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- June 25, 2014 at 12:32 am
Are you being treated by a melanoma specialist? Sloan is a wonderful facility but if you are not seeing a melanoma specialist I highly suggest you seek one out and get a second opinion. Some of the things in your post lead me to believe you are not under the care of a melanoma specialist. You stated you are stage III and I am assuming you are stage III unresectable since you are receiving chemo. Historically chemo does not have a great success rate with melanoma. I can see possibly using chemo or radiation in combination with another immunotherapy or targeted therapy but chemo on it's own would not be the recommendation of many if any melanoma experts. I really want to address your last question as well but I can't seem to find the right words now. I'll just say I'm stage IV and I don't consider dying my only option.
Brian
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- June 25, 2014 at 12:32 am
Are you being treated by a melanoma specialist? Sloan is a wonderful facility but if you are not seeing a melanoma specialist I highly suggest you seek one out and get a second opinion. Some of the things in your post lead me to believe you are not under the care of a melanoma specialist. You stated you are stage III and I am assuming you are stage III unresectable since you are receiving chemo. Historically chemo does not have a great success rate with melanoma. I can see possibly using chemo or radiation in combination with another immunotherapy or targeted therapy but chemo on it's own would not be the recommendation of many if any melanoma experts. I really want to address your last question as well but I can't seem to find the right words now. I'll just say I'm stage IV and I don't consider dying my only option.
Brian
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- June 25, 2014 at 1:00 am
I agree with Brian see if you are seeing a melanoma specialist they are more apt to know the latest with this disease.
My husband was stage IV with an unresectable tumor pushing on the cervical spine at C1 and C2 along with several tumors in the lungs and the liver and before he was accepted into Ipi (Yervoy) he had 3 or 4 sub q's. He has been NED (no evidence of disease) for a little over 1 and 1/2 years now. You can read more in his profile if you wish.
A good positive mental attitude (PMA) helps along with friends and family prayers but I surely would not give up on life. When he started with Yervoy it was not approved yet and was the only new real thing that became available without a clinical trial later in the month that he started into a clinical trial.
Judy (loving wife of Gene Stage IV and now NED)
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- June 25, 2014 at 1:00 am
I agree with Brian see if you are seeing a melanoma specialist they are more apt to know the latest with this disease.
My husband was stage IV with an unresectable tumor pushing on the cervical spine at C1 and C2 along with several tumors in the lungs and the liver and before he was accepted into Ipi (Yervoy) he had 3 or 4 sub q's. He has been NED (no evidence of disease) for a little over 1 and 1/2 years now. You can read more in his profile if you wish.
A good positive mental attitude (PMA) helps along with friends and family prayers but I surely would not give up on life. When he started with Yervoy it was not approved yet and was the only new real thing that became available without a clinical trial later in the month that he started into a clinical trial.
Judy (loving wife of Gene Stage IV and now NED)
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- June 25, 2014 at 1:00 am
I agree with Brian see if you are seeing a melanoma specialist they are more apt to know the latest with this disease.
My husband was stage IV with an unresectable tumor pushing on the cervical spine at C1 and C2 along with several tumors in the lungs and the liver and before he was accepted into Ipi (Yervoy) he had 3 or 4 sub q's. He has been NED (no evidence of disease) for a little over 1 and 1/2 years now. You can read more in his profile if you wish.
A good positive mental attitude (PMA) helps along with friends and family prayers but I surely would not give up on life. When he started with Yervoy it was not approved yet and was the only new real thing that became available without a clinical trial later in the month that he started into a clinical trial.
Judy (loving wife of Gene Stage IV and now NED)
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- July 5, 2014 at 2:03 am
"Anonymous",
Not sure if you are still monitoring this post but I was curious if you are seeing Dr. Hodi at Dana Farber? I have heard he has quite a bit of muscal melanoma experience. I just found out today that my uncle has been diagnosed with muscal melanoma. Any knowlege or advise you have would be appreciated.
Brian
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- July 5, 2014 at 2:03 am
"Anonymous",
Not sure if you are still monitoring this post but I was curious if you are seeing Dr. Hodi at Dana Farber? I have heard he has quite a bit of muscal melanoma experience. I just found out today that my uncle has been diagnosed with muscal melanoma. Any knowlege or advise you have would be appreciated.
Brian
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- July 5, 2014 at 2:03 am
"Anonymous",
Not sure if you are still monitoring this post but I was curious if you are seeing Dr. Hodi at Dana Farber? I have heard he has quite a bit of muscal melanoma experience. I just found out today that my uncle has been diagnosed with muscal melanoma. Any knowlege or advise you have would be appreciated.
Brian
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