› Forums › General Melanoma Community › Stage 4 milignant melanoma metastatic help
- This topic has 66 replies, 8 voices, and was last updated 9 years, 9 months ago by
jennunicorn.
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- May 22, 2016 at 12:51 pm
Hi,
last year my father had a cancerous mole removed from his back which was an aggressive stage in melanoma, however he was given the all clear weeks later and had to go for regular tests.
3 weeks ago my father was admitted to hospital with an infection under the armpit biopsys and scans were all inconclusive but turned out to be an insect bite which had grown an absess that was surgically
On the 20th may 2016, turned out the first biopsy which was taken 3 weeks ago cancer cells had started to form.
On the 21st of May 2016 it was believed by the medical staff that the cancer was stage 4 milignant melanoma which had formed under the skin which is quite rare according to the doctors and declared terminal. They couldent be sure how serious it was till further testing had begun ( we get the results Wednesday). They are telling me it is either a sensitive cancer which can be prolonged for a period of time with chemo or a very aggressive which no treatment will work against it. Either way the doctor has said they are looking weeks or months
The reason behind this post is to reach out to other people living with this nasty disease at a high stage and still continuing to live. is their any hope or shall I face facts that I haven't got much time left with my father?
Can this stage ever be cured even though it's classed as terminal?
We have a meeting with a melanoma specialist tommorow I was wondering if their are any treatments which I should mention to the specialist?
I will keep this post updated with how the meeting and results day go. We are all hoping for a miracle at the moment.
any replies will be greatly appreciated.
- Replies
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- May 22, 2016 at 1:48 pm
When I was first diagnosed I was thought to be stage 4. My specialist told me, "It is not curable, but it is treatable." The good news is that there are many more treatments available than thre were a few years ago.
The best thing you can do is meet with that melanoma specialist.
I am in the UK. Where are you?
I find this website useful It is very clear:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/advanced-melanoma
Hopefully one or more of the treatments mentioned will be suitable and vailable for your father.
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- May 22, 2016 at 1:48 pm
When I was first diagnosed I was thought to be stage 4. My specialist told me, "It is not curable, but it is treatable." The good news is that there are many more treatments available than thre were a few years ago.
The best thing you can do is meet with that melanoma specialist.
I am in the UK. Where are you?
I find this website useful It is very clear:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/advanced-melanoma
Hopefully one or more of the treatments mentioned will be suitable and vailable for your father.
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- May 22, 2016 at 1:48 pm
When I was first diagnosed I was thought to be stage 4. My specialist told me, "It is not curable, but it is treatable." The good news is that there are many more treatments available than thre were a few years ago.
The best thing you can do is meet with that melanoma specialist.
I am in the UK. Where are you?
I find this website useful It is very clear:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/advanced-melanoma
Hopefully one or more of the treatments mentioned will be suitable and vailable for your father.
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- May 22, 2016 at 1:53 pm
First off are you seeing a melanoma specialist, if not get one quickly.
Melanoma is very aggressive depending on the stage at which you start.
My husband started off in Jan. 2008 with a 10.5 mm tumor on the back of his head and a Stage 3A. Surgically removed and after 3 more surgeries he progressed to Stage IV with an unresectable tumor on his cervical spine up at the C1 C2 level. Upon further testing he had tumors in his liver and lungs as well and about 4 that were subcutaneous. In March 2011 he started a clinical trial for Ipi and GM-CSF. We watched the subcutaneous ones shrink away and as time went on he was deemed NED (no evidence of disease) in Oct. 2012. He has remained cancer free and that is over 3.5 years ago. If you would like to read more about his journey you can read his profile.
There are some great combo drugs out there of which he was NED before they came to be but you can read on here about some great drugs that seem to be working.
I still think a melanoma specialist is your best bet. Here is hoping you can find something that will help your father.
Judy (loving wife of Gene Stage IV and now NED)
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- May 22, 2016 at 1:53 pm
First off are you seeing a melanoma specialist, if not get one quickly.
Melanoma is very aggressive depending on the stage at which you start.
My husband started off in Jan. 2008 with a 10.5 mm tumor on the back of his head and a Stage 3A. Surgically removed and after 3 more surgeries he progressed to Stage IV with an unresectable tumor on his cervical spine up at the C1 C2 level. Upon further testing he had tumors in his liver and lungs as well and about 4 that were subcutaneous. In March 2011 he started a clinical trial for Ipi and GM-CSF. We watched the subcutaneous ones shrink away and as time went on he was deemed NED (no evidence of disease) in Oct. 2012. He has remained cancer free and that is over 3.5 years ago. If you would like to read more about his journey you can read his profile.
There are some great combo drugs out there of which he was NED before they came to be but you can read on here about some great drugs that seem to be working.
I still think a melanoma specialist is your best bet. Here is hoping you can find something that will help your father.
Judy (loving wife of Gene Stage IV and now NED)
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- May 22, 2016 at 1:53 pm
First off are you seeing a melanoma specialist, if not get one quickly.
Melanoma is very aggressive depending on the stage at which you start.
My husband started off in Jan. 2008 with a 10.5 mm tumor on the back of his head and a Stage 3A. Surgically removed and after 3 more surgeries he progressed to Stage IV with an unresectable tumor on his cervical spine up at the C1 C2 level. Upon further testing he had tumors in his liver and lungs as well and about 4 that were subcutaneous. In March 2011 he started a clinical trial for Ipi and GM-CSF. We watched the subcutaneous ones shrink away and as time went on he was deemed NED (no evidence of disease) in Oct. 2012. He has remained cancer free and that is over 3.5 years ago. If you would like to read more about his journey you can read his profile.
There are some great combo drugs out there of which he was NED before they came to be but you can read on here about some great drugs that seem to be working.
I still think a melanoma specialist is your best bet. Here is hoping you can find something that will help your father.
Judy (loving wife of Gene Stage IV and now NED)
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- May 22, 2016 at 1:58 pm
Sorry that you and your dad are dealing with this. There is much to take in regarding melanoma in a strange and sudden way. Seeing a melanoma specialist is critical. The short answer to your question is that while melanoma is a horrible and life threatening disease…many of us are doing well. I have had melanoma since 2003…Stage IV since 2010. There are many like me here. Here is a link to a post on this site that may help you better understand things and certainly get you more prepared for your upcoming visit….my response is the 11th (I think) and the additi9nal responses give you good info as well:
https://www.melanoma.org/comment/93508#comment-93508
I wish you and your dad well. Celeste (site name – Bubbles)
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- May 22, 2016 at 1:58 pm
Sorry that you and your dad are dealing with this. There is much to take in regarding melanoma in a strange and sudden way. Seeing a melanoma specialist is critical. The short answer to your question is that while melanoma is a horrible and life threatening disease…many of us are doing well. I have had melanoma since 2003…Stage IV since 2010. There are many like me here. Here is a link to a post on this site that may help you better understand things and certainly get you more prepared for your upcoming visit….my response is the 11th (I think) and the additi9nal responses give you good info as well:
https://www.melanoma.org/comment/93508#comment-93508
I wish you and your dad well. Celeste (site name – Bubbles)
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- May 22, 2016 at 1:58 pm
Sorry that you and your dad are dealing with this. There is much to take in regarding melanoma in a strange and sudden way. Seeing a melanoma specialist is critical. The short answer to your question is that while melanoma is a horrible and life threatening disease…many of us are doing well. I have had melanoma since 2003…Stage IV since 2010. There are many like me here. Here is a link to a post on this site that may help you better understand things and certainly get you more prepared for your upcoming visit….my response is the 11th (I think) and the additi9nal responses give you good info as well:
https://www.melanoma.org/comment/93508#comment-93508
I wish you and your dad well. Celeste (site name – Bubbles)
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- May 22, 2016 at 2:12 pm
I am sorry to hear your family is going through this. Stage 4 melanoma means the cancer has spread to organs in the body and is usually seen on CT or PET scans. It's not determined by a skin or lymph node biopsy.
Stage 3 melanoma means it's confined to the lymph nodes and has not traveled to other organs in the body. Since you made no mention of distant spread, it almost sounds like he might be Stage 3.
But, you need to take a deep breath and wait for Wednesday's results.
As far as treatments go, Stage 4 patients have a number of good options now: Opdivo, Keytruda, Yervoy, Zelboraf, etc. The options for Stage 3 are fewer, unfortunately, because it's not considered "advanced melanoma": Yervoy, Interferon.
Treatment options for advanced (Stage 4) melanoma have come a long way since 2010 and are continuing to evolve. There are people alive now because of these advances. Stage 4 is still very serious, but the survivor list is growing.
I'm glad to hear he is seeing a melanoma specialist!
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- May 22, 2016 at 2:12 pm
I am sorry to hear your family is going through this. Stage 4 melanoma means the cancer has spread to organs in the body and is usually seen on CT or PET scans. It's not determined by a skin or lymph node biopsy.
Stage 3 melanoma means it's confined to the lymph nodes and has not traveled to other organs in the body. Since you made no mention of distant spread, it almost sounds like he might be Stage 3.
But, you need to take a deep breath and wait for Wednesday's results.
As far as treatments go, Stage 4 patients have a number of good options now: Opdivo, Keytruda, Yervoy, Zelboraf, etc. The options for Stage 3 are fewer, unfortunately, because it's not considered "advanced melanoma": Yervoy, Interferon.
Treatment options for advanced (Stage 4) melanoma have come a long way since 2010 and are continuing to evolve. There are people alive now because of these advances. Stage 4 is still very serious, but the survivor list is growing.
I'm glad to hear he is seeing a melanoma specialist!
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- May 22, 2016 at 2:12 pm
I am sorry to hear your family is going through this. Stage 4 melanoma means the cancer has spread to organs in the body and is usually seen on CT or PET scans. It's not determined by a skin or lymph node biopsy.
Stage 3 melanoma means it's confined to the lymph nodes and has not traveled to other organs in the body. Since you made no mention of distant spread, it almost sounds like he might be Stage 3.
But, you need to take a deep breath and wait for Wednesday's results.
As far as treatments go, Stage 4 patients have a number of good options now: Opdivo, Keytruda, Yervoy, Zelboraf, etc. The options for Stage 3 are fewer, unfortunately, because it's not considered "advanced melanoma": Yervoy, Interferon.
Treatment options for advanced (Stage 4) melanoma have come a long way since 2010 and are continuing to evolve. There are people alive now because of these advances. Stage 4 is still very serious, but the survivor list is growing.
I'm glad to hear he is seeing a melanoma specialist!
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- May 22, 2016 at 5:24 pm
Thankyou for all your kind replies, from what the medical staff told me was it was metastatic milignant melanoma which I belive is stage 4, this was determined from how it was mutating in the labs from the biopsy taken 3 weeks ago and they said the way it's mutating and growing is stage 4 but the scans he had shows no cancer in the organs this is where my confusion has come from how can it be diagnosed stage 4 when it's not in the organs ?
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- May 22, 2016 at 6:20 pm
I also had the "triple M" diagnosis: "Metastatic Malignant Melanoma" and I am Stage 3. I believe the "metastatic" part refers to it having metastasized to a lymph node from somewhere on my skin. I say "somewhere" because my primary site is unknown.
I believe that the term, "Level 4" is used in the melanoma world to indicate the tumor's depth. Frequently in the early fog of diagnosis Levels and Stages are confused with each other. Learning that you or a loved one has cancer is a shock so it's easy to mix up the two.
I would make up a list of questions to ask the doctor on Wednesday. If the specialist does tell you it's Stage 4 melanoma, I would definitely ask him/her how that's possible when there's no evidence of it in the organs.
Here's some information on staging: http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/stages-of-melanoma
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- May 22, 2016 at 6:20 pm
I also had the "triple M" diagnosis: "Metastatic Malignant Melanoma" and I am Stage 3. I believe the "metastatic" part refers to it having metastasized to a lymph node from somewhere on my skin. I say "somewhere" because my primary site is unknown.
I believe that the term, "Level 4" is used in the melanoma world to indicate the tumor's depth. Frequently in the early fog of diagnosis Levels and Stages are confused with each other. Learning that you or a loved one has cancer is a shock so it's easy to mix up the two.
I would make up a list of questions to ask the doctor on Wednesday. If the specialist does tell you it's Stage 4 melanoma, I would definitely ask him/her how that's possible when there's no evidence of it in the organs.
Here's some information on staging: http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/stages-of-melanoma
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- May 22, 2016 at 6:20 pm
I also had the "triple M" diagnosis: "Metastatic Malignant Melanoma" and I am Stage 3. I believe the "metastatic" part refers to it having metastasized to a lymph node from somewhere on my skin. I say "somewhere" because my primary site is unknown.
I believe that the term, "Level 4" is used in the melanoma world to indicate the tumor's depth. Frequently in the early fog of diagnosis Levels and Stages are confused with each other. Learning that you or a loved one has cancer is a shock so it's easy to mix up the two.
I would make up a list of questions to ask the doctor on Wednesday. If the specialist does tell you it's Stage 4 melanoma, I would definitely ask him/her how that's possible when there's no evidence of it in the organs.
Here's some information on staging: http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/stages-of-melanoma
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- May 22, 2016 at 5:24 pm
Thankyou for all your kind replies, from what the medical staff told me was it was metastatic milignant melanoma which I belive is stage 4, this was determined from how it was mutating in the labs from the biopsy taken 3 weeks ago and they said the way it's mutating and growing is stage 4 but the scans he had shows no cancer in the organs this is where my confusion has come from how can it be diagnosed stage 4 when it's not in the organs ?
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- May 22, 2016 at 5:24 pm
Thankyou for all your kind replies, from what the medical staff told me was it was metastatic milignant melanoma which I belive is stage 4, this was determined from how it was mutating in the labs from the biopsy taken 3 weeks ago and they said the way it's mutating and growing is stage 4 but the scans he had shows no cancer in the organs this is where my confusion has come from how can it be diagnosed stage 4 when it's not in the organs ?
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- May 22, 2016 at 6:12 pm
As noted by many here, the diagnosis is suspect. Without spread to distant parts of the body, as would be shown through CT/PET scan, it sounds more like a stage 3 diagnosis. This is why everyone is suggesting you be sure dad is treated by a melanoma specialist, preferably from a large, research-oriented institution. There are no guarantees in this ugly business but the conclusions of months to live, should be considered highly suspect. And yes, many of us full-blown stage 4 patients are still living, years, due to the advances in treatment options (that only a specialist will be aware of).
Gary
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- May 22, 2016 at 6:12 pm
As noted by many here, the diagnosis is suspect. Without spread to distant parts of the body, as would be shown through CT/PET scan, it sounds more like a stage 3 diagnosis. This is why everyone is suggesting you be sure dad is treated by a melanoma specialist, preferably from a large, research-oriented institution. There are no guarantees in this ugly business but the conclusions of months to live, should be considered highly suspect. And yes, many of us full-blown stage 4 patients are still living, years, due to the advances in treatment options (that only a specialist will be aware of).
Gary
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- May 22, 2016 at 6:12 pm
As noted by many here, the diagnosis is suspect. Without spread to distant parts of the body, as would be shown through CT/PET scan, it sounds more like a stage 3 diagnosis. This is why everyone is suggesting you be sure dad is treated by a melanoma specialist, preferably from a large, research-oriented institution. There are no guarantees in this ugly business but the conclusions of months to live, should be considered highly suspect. And yes, many of us full-blown stage 4 patients are still living, years, due to the advances in treatment options (that only a specialist will be aware of).
Gary
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- May 23, 2016 at 9:17 pm
UPDATE……
so today we met with the specialist, they are assuming it's stage three recent scan results show no cancer in any organs which is a good sign, what we first was an infection is actually paraneoplastic syndrome which is where the body's immune system throws an attack on the cancer cells resulting in a infection this is a really rare case the specialist has only seen 3 cases where the body does this.
We are currently waiting for Wednesday's results to see if my father is able to have bref treatment such as yervoy or zelborav if not it makes it a little more difficult and they are unsure of the next path
Would like to thank everyone who gave me advice on this group it made it easier to understand the specialist
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- May 23, 2016 at 9:17 pm
UPDATE……
so today we met with the specialist, they are assuming it's stage three recent scan results show no cancer in any organs which is a good sign, what we first was an infection is actually paraneoplastic syndrome which is where the body's immune system throws an attack on the cancer cells resulting in a infection this is a really rare case the specialist has only seen 3 cases where the body does this.
We are currently waiting for Wednesday's results to see if my father is able to have bref treatment such as yervoy or zelborav if not it makes it a little more difficult and they are unsure of the next path
Would like to thank everyone who gave me advice on this group it made it easier to understand the specialist
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- May 23, 2016 at 9:17 pm
UPDATE……
so today we met with the specialist, they are assuming it's stage three recent scan results show no cancer in any organs which is a good sign, what we first was an infection is actually paraneoplastic syndrome which is where the body's immune system throws an attack on the cancer cells resulting in a infection this is a really rare case the specialist has only seen 3 cases where the body does this.
We are currently waiting for Wednesday's results to see if my father is able to have bref treatment such as yervoy or zelborav if not it makes it a little more difficult and they are unsure of the next path
Would like to thank everyone who gave me advice on this group it made it easier to understand the specialist
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- May 23, 2016 at 9:34 pm
If he is stage 3, then Yervoy is currently the best FDA approved option. Don't need to have BRAF to get it. Also, there are trials happening for stage 3 testing the other great immunotherapy drugs for adjuvant treatments. Someone mentioned that Opdivo may become FDA approved for stage 3 in June, which isn't far off. There are certainly options, hope all works out well for him.
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- May 23, 2016 at 9:34 pm
If he is stage 3, then Yervoy is currently the best FDA approved option. Don't need to have BRAF to get it. Also, there are trials happening for stage 3 testing the other great immunotherapy drugs for adjuvant treatments. Someone mentioned that Opdivo may become FDA approved for stage 3 in June, which isn't far off. There are certainly options, hope all works out well for him.
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- May 23, 2016 at 9:34 pm
If he is stage 3, then Yervoy is currently the best FDA approved option. Don't need to have BRAF to get it. Also, there are trials happening for stage 3 testing the other great immunotherapy drugs for adjuvant treatments. Someone mentioned that Opdivo may become FDA approved for stage 3 in June, which isn't far off. There are certainly options, hope all works out well for him.
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- May 24, 2016 at 9:23 pm
Never heard of paraneoplastic syndrome, but it sounds like his body has a head start on fighting the melanoma. This is a good thing.
Not sure if Zelboraf is approved for Stage 3 patients yet. He may be able to get it through a clinical trial.
Yervoy is approved for Stage 3 patients. The dosage, however is higher than that used to treat Stage 4 patients. Go figure that one out…LOL. But it comes with some side effects, some of which can be pretty serious. His doctor will go over those with him.
Interferon is another drug that some doctors still use to treat melanoma and becoming "old school". It's efficacy is not great, considering the side effects you have to deal with. If you search this forum you will find all kinds of posts on it.
I was wondering how you made out today and am very happy to hear that he is not Stage 4.
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- May 24, 2016 at 9:23 pm
Never heard of paraneoplastic syndrome, but it sounds like his body has a head start on fighting the melanoma. This is a good thing.
Not sure if Zelboraf is approved for Stage 3 patients yet. He may be able to get it through a clinical trial.
Yervoy is approved for Stage 3 patients. The dosage, however is higher than that used to treat Stage 4 patients. Go figure that one out…LOL. But it comes with some side effects, some of which can be pretty serious. His doctor will go over those with him.
Interferon is another drug that some doctors still use to treat melanoma and becoming "old school". It's efficacy is not great, considering the side effects you have to deal with. If you search this forum you will find all kinds of posts on it.
I was wondering how you made out today and am very happy to hear that he is not Stage 4.
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- May 24, 2016 at 9:23 pm
Never heard of paraneoplastic syndrome, but it sounds like his body has a head start on fighting the melanoma. This is a good thing.
Not sure if Zelboraf is approved for Stage 3 patients yet. He may be able to get it through a clinical trial.
Yervoy is approved for Stage 3 patients. The dosage, however is higher than that used to treat Stage 4 patients. Go figure that one out…LOL. But it comes with some side effects, some of which can be pretty serious. His doctor will go over those with him.
Interferon is another drug that some doctors still use to treat melanoma and becoming "old school". It's efficacy is not great, considering the side effects you have to deal with. If you search this forum you will find all kinds of posts on it.
I was wondering how you made out today and am very happy to hear that he is not Stage 4.
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- May 24, 2016 at 9:26 pm
Just saw Jenn's note that mentioned Opdivo may be approved for Stage 3 patients. I would ask your father's doctor about that. This is something to keep an eye out for because it's been working awesome for Stage 4 patients. And, the side effects are tolerable.
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- May 24, 2016 at 9:26 pm
Just saw Jenn's note that mentioned Opdivo may be approved for Stage 3 patients. I would ask your father's doctor about that. This is something to keep an eye out for because it's been working awesome for Stage 4 patients. And, the side effects are tolerable.
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- May 24, 2016 at 9:26 pm
Just saw Jenn's note that mentioned Opdivo may be approved for Stage 3 patients. I would ask your father's doctor about that. This is something to keep an eye out for because it's been working awesome for Stage 4 patients. And, the side effects are tolerable.
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- May 27, 2016 at 5:47 pm
Got the results back today he is unfortunately BRAF negative.
they have given him 5 doses of radiotherapy in hope to shrink the cancer the specialist said its one of the most aggressive cases he has seen but for some reason he says that might make it weaker (no idea how that works)
the oncologist said he has months depending on how the radiotherapy reacts, if it works they are going to try him on a oral drug
I am just wondering if anyone is in a similar situation ?
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- May 27, 2016 at 7:43 pm
Connolly94, if the Oncologist you are seeing is not offering Immunotherapy treatment at this point I would be looking for a second opinion asap. The standard of care for stage 4 has become either Immunotherapy with the ipi/nivo combination having the most success or targeted therapy if you have the braf mutation. For an Oncologist not to be offering it at this point, stage 4 aggressive, is a head scratcher for me. Best wishes!!! Ed
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- May 27, 2016 at 10:45 pm
He has been diagnosed stage 3 it's not in any organs yet all scans were clear
he has not got the BRAF gene which means he can't have that treatment
but I'm certain I have see people on here offering treatment such as yurvoy which I belive is effective
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- May 27, 2016 at 10:58 pm
Connolly94, if you look at your first post you clearly stated that he is stage 4. Now you are saying he is stage 3 which is a whole different ball game. It is really hard to give you advice if you are not sure what stage he is!!!
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- May 28, 2016 at 9:37 am
The first post was what was believed by the medical staff if you read my posts further down it changes after meeting the specialist etc
scans this week declared all his organs clear but he is BRAF negative so that treatment cannot work so they gave him radiotherapy in hope to shrink the cancer and if it works try an oral drug
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- May 28, 2016 at 9:37 am
The first post was what was believed by the medical staff if you read my posts further down it changes after meeting the specialist etc
scans this week declared all his organs clear but he is BRAF negative so that treatment cannot work so they gave him radiotherapy in hope to shrink the cancer and if it works try an oral drug
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- May 28, 2016 at 11:30 am
Hi Connolly 94, I went back and read from the beginning of your post and I have a couple of questions? First where is you dad being treated? Second, is his Oncologist a general Oncologist or Melanoma expert? If they are saying that your dad is terminal at stage 3 then red flags would be waving and sirens would be sounding in my mind!!!! If you go to Celeste blog (bubbles on the forum) click on one of the links to her web site and spend a little time reading about all the new and exciting combination trials and treatments that are available such as T-vec combined with Immunotherapy and Ipi/Nivo combination etc. you will see that Melanoma doesn't have to be terminal, it can be controlled for many and may be even cured( Dr.Weber talking about 10 year survival data with Ipi patients) in the near future for a lot of us. Best wishes!!!! Ed
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- May 28, 2016 at 11:30 am
Hi Connolly 94, I went back and read from the beginning of your post and I have a couple of questions? First where is you dad being treated? Second, is his Oncologist a general Oncologist or Melanoma expert? If they are saying that your dad is terminal at stage 3 then red flags would be waving and sirens would be sounding in my mind!!!! If you go to Celeste blog (bubbles on the forum) click on one of the links to her web site and spend a little time reading about all the new and exciting combination trials and treatments that are available such as T-vec combined with Immunotherapy and Ipi/Nivo combination etc. you will see that Melanoma doesn't have to be terminal, it can be controlled for many and may be even cured( Dr.Weber talking about 10 year survival data with Ipi patients) in the near future for a lot of us. Best wishes!!!! Ed
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- May 28, 2016 at 3:30 pm
Thanks for the reply,
my dad is being treated at Sheffield hallamshire hospital and as far as I am aware their is a skin cancer specialist, a consultant surgeon, and a oncologist all together helping my dad.
Alarm bells went off yesterday when they told me he had months to live and only at stage 3 aswell, and so many people on here are alive and well at stage 3 and 4
i will take a look on the website thanks for the advice
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- May 28, 2016 at 3:30 pm
Thanks for the reply,
my dad is being treated at Sheffield hallamshire hospital and as far as I am aware their is a skin cancer specialist, a consultant surgeon, and a oncologist all together helping my dad.
Alarm bells went off yesterday when they told me he had months to live and only at stage 3 aswell, and so many people on here are alive and well at stage 3 and 4
i will take a look on the website thanks for the advice
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- May 28, 2016 at 7:35 pm
No one can be terminal at stage 3, just not possible.
Also, he does NOT have to be BRAF positive for the immunotherapy drugs to work, only a select few are for BRAF.
YERVOY (IPI) is the best stage 3 option and he should be offered that. DOES NOT have to be BRAF positive. Just want to clarify that. I would suggest second opinions with melanoma specialists… an oncologist who ONLY works with melanoma patients is what we mean. His doctors do NOT know what they're talking about if they're saying the terminal word at stage 3. Even if he was stage 4 I wouldn't feel comfortable with that doctor, as Ed mentioned, the new immunotherapy drugs out now are keeping even stage 4 folk alive a lot longer than what would have been possible ten years ago.
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- May 28, 2016 at 7:35 pm
No one can be terminal at stage 3, just not possible.
Also, he does NOT have to be BRAF positive for the immunotherapy drugs to work, only a select few are for BRAF.
YERVOY (IPI) is the best stage 3 option and he should be offered that. DOES NOT have to be BRAF positive. Just want to clarify that. I would suggest second opinions with melanoma specialists… an oncologist who ONLY works with melanoma patients is what we mean. His doctors do NOT know what they're talking about if they're saying the terminal word at stage 3. Even if he was stage 4 I wouldn't feel comfortable with that doctor, as Ed mentioned, the new immunotherapy drugs out now are keeping even stage 4 folk alive a lot longer than what would have been possible ten years ago.
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- May 28, 2016 at 7:35 pm
No one can be terminal at stage 3, just not possible.
Also, he does NOT have to be BRAF positive for the immunotherapy drugs to work, only a select few are for BRAF.
YERVOY (IPI) is the best stage 3 option and he should be offered that. DOES NOT have to be BRAF positive. Just want to clarify that. I would suggest second opinions with melanoma specialists… an oncologist who ONLY works with melanoma patients is what we mean. His doctors do NOT know what they're talking about if they're saying the terminal word at stage 3. Even if he was stage 4 I wouldn't feel comfortable with that doctor, as Ed mentioned, the new immunotherapy drugs out now are keeping even stage 4 folk alive a lot longer than what would have been possible ten years ago.
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- May 28, 2016 at 3:30 pm
Thanks for the reply,
my dad is being treated at Sheffield hallamshire hospital and as far as I am aware their is a skin cancer specialist, a consultant surgeon, and a oncologist all together helping my dad.
Alarm bells went off yesterday when they told me he had months to live and only at stage 3 aswell, and so many people on here are alive and well at stage 3 and 4
i will take a look on the website thanks for the advice
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- May 28, 2016 at 11:30 am
Hi Connolly 94, I went back and read from the beginning of your post and I have a couple of questions? First where is you dad being treated? Second, is his Oncologist a general Oncologist or Melanoma expert? If they are saying that your dad is terminal at stage 3 then red flags would be waving and sirens would be sounding in my mind!!!! If you go to Celeste blog (bubbles on the forum) click on one of the links to her web site and spend a little time reading about all the new and exciting combination trials and treatments that are available such as T-vec combined with Immunotherapy and Ipi/Nivo combination etc. you will see that Melanoma doesn't have to be terminal, it can be controlled for many and may be even cured( Dr.Weber talking about 10 year survival data with Ipi patients) in the near future for a lot of us. Best wishes!!!! Ed
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- May 28, 2016 at 9:37 am
The first post was what was believed by the medical staff if you read my posts further down it changes after meeting the specialist etc
scans this week declared all his organs clear but he is BRAF negative so that treatment cannot work so they gave him radiotherapy in hope to shrink the cancer and if it works try an oral drug
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- May 27, 2016 at 10:58 pm
Connolly94, if you look at your first post you clearly stated that he is stage 4. Now you are saying he is stage 3 which is a whole different ball game. It is really hard to give you advice if you are not sure what stage he is!!!
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- May 27, 2016 at 10:58 pm
Connolly94, if you look at your first post you clearly stated that he is stage 4. Now you are saying he is stage 3 which is a whole different ball game. It is really hard to give you advice if you are not sure what stage he is!!!
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- May 27, 2016 at 10:45 pm
He has been diagnosed stage 3 it's not in any organs yet all scans were clear
he has not got the BRAF gene which means he can't have that treatment
but I'm certain I have see people on here offering treatment such as yurvoy which I belive is effective
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- May 27, 2016 at 10:45 pm
He has been diagnosed stage 3 it's not in any organs yet all scans were clear
he has not got the BRAF gene which means he can't have that treatment
but I'm certain I have see people on here offering treatment such as yurvoy which I belive is effective
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- May 27, 2016 at 7:43 pm
Connolly94, if the Oncologist you are seeing is not offering Immunotherapy treatment at this point I would be looking for a second opinion asap. The standard of care for stage 4 has become either Immunotherapy with the ipi/nivo combination having the most success or targeted therapy if you have the braf mutation. For an Oncologist not to be offering it at this point, stage 4 aggressive, is a head scratcher for me. Best wishes!!! Ed
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- May 27, 2016 at 7:43 pm
Connolly94, if the Oncologist you are seeing is not offering Immunotherapy treatment at this point I would be looking for a second opinion asap. The standard of care for stage 4 has become either Immunotherapy with the ipi/nivo combination having the most success or targeted therapy if you have the braf mutation. For an Oncologist not to be offering it at this point, stage 4 aggressive, is a head scratcher for me. Best wishes!!! Ed
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- May 27, 2016 at 5:47 pm
Got the results back today he is unfortunately BRAF negative.
they have given him 5 doses of radiotherapy in hope to shrink the cancer the specialist said its one of the most aggressive cases he has seen but for some reason he says that might make it weaker (no idea how that works)
the oncologist said he has months depending on how the radiotherapy reacts, if it works they are going to try him on a oral drug
I am just wondering if anyone is in a similar situation ?
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- May 27, 2016 at 5:47 pm
Got the results back today he is unfortunately BRAF negative.
they have given him 5 doses of radiotherapy in hope to shrink the cancer the specialist said its one of the most aggressive cases he has seen but for some reason he says that might make it weaker (no idea how that works)
the oncologist said he has months depending on how the radiotherapy reacts, if it works they are going to try him on a oral drug
I am just wondering if anyone is in a similar situation ?
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Tagged: cutaneous melanoma
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