› Forums › General Melanoma Community › What are the doctors telling us? Help?
- This topic has 27 replies, 7 voices, and was last updated 9 years, 2 months ago by
Kengeo3.
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- March 10, 2016 at 2:26 am
My Father was just diagnosed last week with Melanoma. As he lives several states away from me I haven’t been able to actually be at any of his appointments and I could really use some help understanding what I’m being told.The information I’ve been given thus far is that the site was 4.22 mm. They’very already found traces in the blood, lymphatic, and nervous systems, as well as being certain that it has moved to his abdomen.
Dad says he’ll have a PET scan next week. If it hasn’t moved beyond his abdomen they’ll perform a couple of surgeries, one to remove the tumor and another to rebuild his leg. If it has moved they will skip the surgery entirely and go straight to “heavy-duty trial drugs”.
I don’t really understand what a lot of this means and, more to the point, I don’t know what this means for my dad. The dermatologist has put him at at least Stage IIIC, possibly more based on whatever information the scan can provide us.
I also don’t know what I can do for him. I want to be there for him and help however I can, but since I live so far away I’m uncertain as to how to help him.
*sigh* All in all I’m feeling a little helpless here. Any help, advice, or information anyone can give me would be a big help.
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- March 10, 2016 at 2:38 am
Is your father seeing a melanoma specialist? First and foremost, that is THE most important thing he needs to do. A general oncologist just isn't going to have all the experiences with new drugs and treatment options. If he has sites both on his leg and abdomen, he is already stage IV. Surgery is fine but sometimes the new drugs make more sense. Seeing a specialist is extremely important in giving your Dad the best chances possible.
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- March 10, 2016 at 2:38 am
Is your father seeing a melanoma specialist? First and foremost, that is THE most important thing he needs to do. A general oncologist just isn't going to have all the experiences with new drugs and treatment options. If he has sites both on his leg and abdomen, he is already stage IV. Surgery is fine but sometimes the new drugs make more sense. Seeing a specialist is extremely important in giving your Dad the best chances possible.
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- March 10, 2016 at 3:11 am
A new diagnosis is tough on everyone. There's not a lot of advice we can give until the staging is complete. You need to know the extent of the disease before any real recommendations can be made. The last 5 years have seen major improvements in treatments for melanoma so while it is still a very tricky and unpredictable disease, there are more treatment options than ever before. Being seen at a large research institution or cancer center will give your father access to the most treatment options. Not sure where he is located but again, who and where you are seen can influence treatment options.
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- March 10, 2016 at 3:11 am
A new diagnosis is tough on everyone. There's not a lot of advice we can give until the staging is complete. You need to know the extent of the disease before any real recommendations can be made. The last 5 years have seen major improvements in treatments for melanoma so while it is still a very tricky and unpredictable disease, there are more treatment options than ever before. Being seen at a large research institution or cancer center will give your father access to the most treatment options. Not sure where he is located but again, who and where you are seen can influence treatment options.
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- March 10, 2016 at 3:11 am
A new diagnosis is tough on everyone. There's not a lot of advice we can give until the staging is complete. You need to know the extent of the disease before any real recommendations can be made. The last 5 years have seen major improvements in treatments for melanoma so while it is still a very tricky and unpredictable disease, there are more treatment options than ever before. Being seen at a large research institution or cancer center will give your father access to the most treatment options. Not sure where he is located but again, who and where you are seen can influence treatment options.
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- March 10, 2016 at 2:38 am
Is your father seeing a melanoma specialist? First and foremost, that is THE most important thing he needs to do. A general oncologist just isn't going to have all the experiences with new drugs and treatment options. If he has sites both on his leg and abdomen, he is already stage IV. Surgery is fine but sometimes the new drugs make more sense. Seeing a specialist is extremely important in giving your Dad the best chances possible.
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- March 10, 2016 at 3:22 am
My dad is a stage 3C. Just had his second infusion of Yervoy which is now approved for stage 3. It is an immunotherapy. Keytruda and up OpdiVo are a different type of immunotherapy used for stage 4. How can they be certain it has moved to his abdomen? A pet scan will reveal if it’s metastatic disease or not. The one piece of advice I can give you is to not look at the statistics. They are not accurate since so many new treatments have come out lately. I am somewhat new to this world of melanoma as well so I am sure some one else will have more advice for you. It is such a shock when you find this out, and so scary, especially when you have no idea what it is about. I am the kind of person who wants to research everything, maybe to a fault sometimes. But I do feel like I have more control over the situation knowing information about the disease and what is available to treat it. That being said, again, what you should not read is the statistics. There are lots of treatment options out there now, especially for stage 4. It is not an immidiate death sentence anymore. And improvements in treatments are continuing as we speak. Stay strong and positive. Your dad needs you to.Annie
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- March 10, 2016 at 3:22 am
My dad is a stage 3C. Just had his second infusion of Yervoy which is now approved for stage 3. It is an immunotherapy. Keytruda and up OpdiVo are a different type of immunotherapy used for stage 4. How can they be certain it has moved to his abdomen? A pet scan will reveal if it’s metastatic disease or not. The one piece of advice I can give you is to not look at the statistics. They are not accurate since so many new treatments have come out lately. I am somewhat new to this world of melanoma as well so I am sure some one else will have more advice for you. It is such a shock when you find this out, and so scary, especially when you have no idea what it is about. I am the kind of person who wants to research everything, maybe to a fault sometimes. But I do feel like I have more control over the situation knowing information about the disease and what is available to treat it. That being said, again, what you should not read is the statistics. There are lots of treatment options out there now, especially for stage 4. It is not an immidiate death sentence anymore. And improvements in treatments are continuing as we speak. Stay strong and positive. Your dad needs you to.Annie
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- March 10, 2016 at 3:22 am
My dad is a stage 3C. Just had his second infusion of Yervoy which is now approved for stage 3. It is an immunotherapy. Keytruda and up OpdiVo are a different type of immunotherapy used for stage 4. How can they be certain it has moved to his abdomen? A pet scan will reveal if it’s metastatic disease or not. The one piece of advice I can give you is to not look at the statistics. They are not accurate since so many new treatments have come out lately. I am somewhat new to this world of melanoma as well so I am sure some one else will have more advice for you. It is such a shock when you find this out, and so scary, especially when you have no idea what it is about. I am the kind of person who wants to research everything, maybe to a fault sometimes. But I do feel like I have more control over the situation knowing information about the disease and what is available to treat it. That being said, again, what you should not read is the statistics. There are lots of treatment options out there now, especially for stage 4. It is not an immidiate death sentence anymore. And improvements in treatments are continuing as we speak. Stay strong and positive. Your dad needs you to.Annie
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- March 10, 2016 at 4:16 am
I don't know how melanoma can be found in blood or nervous systems, as there are no blood tests or anything like that for melanoma. And there is no way to know if it has gone to distant organs or areas like his abdomen until he has his PET scan.
The surgery he will have (if he hasn't already) is Wide Local Excision which will take tissue and skin around the primary site to make sure all of the margins are clear of melanoma. At the same time they will probably perform a Sentinal Lymph Node Biopsy which will tell if it has gone into his nearsest lymph nodes. If he has not had surgery and scans yet, they can't know his final stage. If his lymph nodes nearest to his primary site are enlarged or swollen and can be felt from just examining him physically, then I can see why they'd say he's at least stage IIIC.
He absolutely should see a melanoma specialist, it is very important to have a specialized oncologist that will know more about this tricky cancer than a basic oncologist.
It's overwhelming, hopefully you'll get some good answers on here.
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- March 10, 2016 at 4:16 am
I don't know how melanoma can be found in blood or nervous systems, as there are no blood tests or anything like that for melanoma. And there is no way to know if it has gone to distant organs or areas like his abdomen until he has his PET scan.
The surgery he will have (if he hasn't already) is Wide Local Excision which will take tissue and skin around the primary site to make sure all of the margins are clear of melanoma. At the same time they will probably perform a Sentinal Lymph Node Biopsy which will tell if it has gone into his nearsest lymph nodes. If he has not had surgery and scans yet, they can't know his final stage. If his lymph nodes nearest to his primary site are enlarged or swollen and can be felt from just examining him physically, then I can see why they'd say he's at least stage IIIC.
He absolutely should see a melanoma specialist, it is very important to have a specialized oncologist that will know more about this tricky cancer than a basic oncologist.
It's overwhelming, hopefully you'll get some good answers on here.
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- March 10, 2016 at 4:16 am
I don't know how melanoma can be found in blood or nervous systems, as there are no blood tests or anything like that for melanoma. And there is no way to know if it has gone to distant organs or areas like his abdomen until he has his PET scan.
The surgery he will have (if he hasn't already) is Wide Local Excision which will take tissue and skin around the primary site to make sure all of the margins are clear of melanoma. At the same time they will probably perform a Sentinal Lymph Node Biopsy which will tell if it has gone into his nearsest lymph nodes. If he has not had surgery and scans yet, they can't know his final stage. If his lymph nodes nearest to his primary site are enlarged or swollen and can be felt from just examining him physically, then I can see why they'd say he's at least stage IIIC.
He absolutely should see a melanoma specialist, it is very important to have a specialized oncologist that will know more about this tricky cancer than a basic oncologist.
It's overwhelming, hopefully you'll get some good answers on here.
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- March 10, 2016 at 7:31 am
It is good your father is having a PET scan. My doctors thought I was stage 4 based on my CT scan but I ended up being 'only' stage 3C. For me, some of the lumps on the CT scan turned out not ot be active and therefore not melanomas.
Only they have some of the cancer they can send it to the laboratory. They will do some tests on it. Knowing more about the cancer will help the doctors make better recommendations.
If the mealnoma has spread to many sites me will be stage 4. They will probably suggest one of the new immunotherapies
Although this is an British site is is very good and very clear:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/
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- March 10, 2016 at 7:31 am
It is good your father is having a PET scan. My doctors thought I was stage 4 based on my CT scan but I ended up being 'only' stage 3C. For me, some of the lumps on the CT scan turned out not ot be active and therefore not melanomas.
Only they have some of the cancer they can send it to the laboratory. They will do some tests on it. Knowing more about the cancer will help the doctors make better recommendations.
If the mealnoma has spread to many sites me will be stage 4. They will probably suggest one of the new immunotherapies
Although this is an British site is is very good and very clear:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/
-
- March 10, 2016 at 7:31 am
It is good your father is having a PET scan. My doctors thought I was stage 4 based on my CT scan but I ended up being 'only' stage 3C. For me, some of the lumps on the CT scan turned out not ot be active and therefore not melanomas.
Only they have some of the cancer they can send it to the laboratory. They will do some tests on it. Knowing more about the cancer will help the doctors make better recommendations.
If the mealnoma has spread to many sites me will be stage 4. They will probably suggest one of the new immunotherapies
Although this is an British site is is very good and very clear:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/
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- March 10, 2016 at 11:35 am
Ahapkido – sorry for your father's diagnosis. Melanoma is truly a scary diagnosis and needs to be treated appropriately. For Stage 4 patients the survival statistics that you will see published are very hard to see a postitive future.
BUT as mentioned by many others, the world of science for this disease have very much changed for the positive just in the past 12-24 months. If you are reading that 10% in five year number…it is probably closer to 40-50% but nobody knows for sure….but much, much better.
So as others have said it is absolutely critical that he engage with a melanoma specialists that is treating melanoma patients all day long every day of the weak. (don't just go to your local cancer specialist center, it needs to be a melanoma specialist doctor). Even with all of the excitement for these new treatments, the side affects can be huge if not manged appropriately.
The other key point of advice is for somebody to become his patient advocate. And that needs to be somebody that can read up on everything, come to places like this for help, battle the insurance companies, and is willing to challenge the medical system on just about everything (questions like "why not this?")
The current state of Melanoma treatment is more hope than dispare…but you/he has to be doing your fair share of work to be on the positive side of your father's future.
Best wishes
Michel
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- March 10, 2016 at 11:35 am
Ahapkido – sorry for your father's diagnosis. Melanoma is truly a scary diagnosis and needs to be treated appropriately. For Stage 4 patients the survival statistics that you will see published are very hard to see a postitive future.
BUT as mentioned by many others, the world of science for this disease have very much changed for the positive just in the past 12-24 months. If you are reading that 10% in five year number…it is probably closer to 40-50% but nobody knows for sure….but much, much better.
So as others have said it is absolutely critical that he engage with a melanoma specialists that is treating melanoma patients all day long every day of the weak. (don't just go to your local cancer specialist center, it needs to be a melanoma specialist doctor). Even with all of the excitement for these new treatments, the side affects can be huge if not manged appropriately.
The other key point of advice is for somebody to become his patient advocate. And that needs to be somebody that can read up on everything, come to places like this for help, battle the insurance companies, and is willing to challenge the medical system on just about everything (questions like "why not this?")
The current state of Melanoma treatment is more hope than dispare…but you/he has to be doing your fair share of work to be on the positive side of your father's future.
Best wishes
Michel
-
- March 10, 2016 at 11:35 am
Ahapkido – sorry for your father's diagnosis. Melanoma is truly a scary diagnosis and needs to be treated appropriately. For Stage 4 patients the survival statistics that you will see published are very hard to see a postitive future.
BUT as mentioned by many others, the world of science for this disease have very much changed for the positive just in the past 12-24 months. If you are reading that 10% in five year number…it is probably closer to 40-50% but nobody knows for sure….but much, much better.
So as others have said it is absolutely critical that he engage with a melanoma specialists that is treating melanoma patients all day long every day of the weak. (don't just go to your local cancer specialist center, it needs to be a melanoma specialist doctor). Even with all of the excitement for these new treatments, the side affects can be huge if not manged appropriately.
The other key point of advice is for somebody to become his patient advocate. And that needs to be somebody that can read up on everything, come to places like this for help, battle the insurance companies, and is willing to challenge the medical system on just about everything (questions like "why not this?")
The current state of Melanoma treatment is more hope than dispare…but you/he has to be doing your fair share of work to be on the positive side of your father's future.
Best wishes
Michel
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- March 11, 2016 at 2:31 am
I agree with what everyone has said. Positive Attitude is really important, so try to encourage your dad as much as possible, For stage 4, Opdivo or Keytruda are about 4 times as effective as Yervoy, in terms of the percentage of patients responding to treatment. The combination of Opdivo with Yervoy is about 5 to 6 times as effective. Any of these medicines, including Yervoy, can result in a long term survival, in many cases meaning that the person lives long enough that they won't die of melanoma. The side effects can be difficult, but are almost always treatable. He should definitely go to a specialist, preferably at a cancer center with a melanoma specialist.
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- March 11, 2016 at 2:31 am
I agree with what everyone has said. Positive Attitude is really important, so try to encourage your dad as much as possible, For stage 4, Opdivo or Keytruda are about 4 times as effective as Yervoy, in terms of the percentage of patients responding to treatment. The combination of Opdivo with Yervoy is about 5 to 6 times as effective. Any of these medicines, including Yervoy, can result in a long term survival, in many cases meaning that the person lives long enough that they won't die of melanoma. The side effects can be difficult, but are almost always treatable. He should definitely go to a specialist, preferably at a cancer center with a melanoma specialist.
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- March 11, 2016 at 2:31 am
I agree with what everyone has said. Positive Attitude is really important, so try to encourage your dad as much as possible, For stage 4, Opdivo or Keytruda are about 4 times as effective as Yervoy, in terms of the percentage of patients responding to treatment. The combination of Opdivo with Yervoy is about 5 to 6 times as effective. Any of these medicines, including Yervoy, can result in a long term survival, in many cases meaning that the person lives long enough that they won't die of melanoma. The side effects can be difficult, but are almost always treatable. He should definitely go to a specialist, preferably at a cancer center with a melanoma specialist.
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