› Forums › General Melanoma Community › Prognosis for stage 3a
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UBContributor.
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- January 7, 2017 at 11:36 pm
Hi all,
I was wondering if I could have a bit of input regarding my hubbys prognosis. I know that melanoma is v.unpredictable, and each and every person's journey is different. There are many factors involved. But we're at the point where we feel we need to know a tough idea of prognosis, accept and move on as much as you can with this beast hanging over you!
He had a 2.3, superficial spreading non ulcerated MM. His SLNB upstaged him to 3a after micrometastasis was found (one deposit in one sentinel node measuring 0.5mm in diameter). All nodes were removed from left groin and all came back clear.
his dermatologist does not provide a a rounded version of outlook but has painted a pretty dire perspective from the outset. To be honest we are probably more prone to a negative outlook 'prepare for the worst sort of attitude' I guess. Anyway I've been reading (can't seem to stop that!) and it seem he actually has quite a good progosis (possibly) given just one micrometastasis node, and non ulceration of primary. Hope it's ok to post this sort of question up?! Would really appreciate views x
- Replies
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- January 8, 2017 at 1:50 am
Hey AvaL,
im sorry to hear of your husband's diagnosis, it's certainly a scary and unsettling time for the both of you. Since 2011 treatment options have come a very long way for melanoma so his prognosis is better than it would have been 6 years ago and even then it always depends on the person as no two people with melanoma (or any cancer) are the same. I would say the very first thing to do if you haven't already is seek out a melanoma specialist, that is absolutely crucial and general oncologist or an oncologist with an interest in melanoma will not do. Don't let the dermatologist's dire perspective derail you, now is the time to be proactive and seek out treatment options with a melanoma specialist- you'll feel much better after you do. Current approved treatment options for his stage is yervoy, infereon or watch and wait. I'd ask about clinical trials because there is more being done for stage 3 as options are limited- once a patient progresses to stage 4 the treatment landscape is much broader. Do you know his BRAF status? That is something important to know.
As of now sounds like he is NED (no evidence of disease) and I hope he stays that way! this forum is a wonderful place to find support any learn a lot.
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- January 8, 2017 at 1:50 am
Hey AvaL,
im sorry to hear of your husband's diagnosis, it's certainly a scary and unsettling time for the both of you. Since 2011 treatment options have come a very long way for melanoma so his prognosis is better than it would have been 6 years ago and even then it always depends on the person as no two people with melanoma (or any cancer) are the same. I would say the very first thing to do if you haven't already is seek out a melanoma specialist, that is absolutely crucial and general oncologist or an oncologist with an interest in melanoma will not do. Don't let the dermatologist's dire perspective derail you, now is the time to be proactive and seek out treatment options with a melanoma specialist- you'll feel much better after you do. Current approved treatment options for his stage is yervoy, infereon or watch and wait. I'd ask about clinical trials because there is more being done for stage 3 as options are limited- once a patient progresses to stage 4 the treatment landscape is much broader. Do you know his BRAF status? That is something important to know.
As of now sounds like he is NED (no evidence of disease) and I hope he stays that way! this forum is a wonderful place to find support any learn a lot.
-
- January 8, 2017 at 1:50 am
Hey AvaL,
im sorry to hear of your husband's diagnosis, it's certainly a scary and unsettling time for the both of you. Since 2011 treatment options have come a very long way for melanoma so his prognosis is better than it would have been 6 years ago and even then it always depends on the person as no two people with melanoma (or any cancer) are the same. I would say the very first thing to do if you haven't already is seek out a melanoma specialist, that is absolutely crucial and general oncologist or an oncologist with an interest in melanoma will not do. Don't let the dermatologist's dire perspective derail you, now is the time to be proactive and seek out treatment options with a melanoma specialist- you'll feel much better after you do. Current approved treatment options for his stage is yervoy, infereon or watch and wait. I'd ask about clinical trials because there is more being done for stage 3 as options are limited- once a patient progresses to stage 4 the treatment landscape is much broader. Do you know his BRAF status? That is something important to know.
As of now sounds like he is NED (no evidence of disease) and I hope he stays that way! this forum is a wonderful place to find support any learn a lot.
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- January 8, 2017 at 2:30 am
Ava – I am also a 3A and have been NED for just over 2 years. The prognosis for all stages of melanoma have gotten much, much better than any of the currently published stats (which are quite scary for sure). The truth is that these new drugs are doing so well that they just haven't had enough time in the field to understand the long term stats.
I think the one thing that EVERYBODY on this forum would deem the MOST critical thing is to find yourself a real melanoma specialist. One that sees melanoma patients every single day. If that means you have to drive…then do it for at least the important consults.
I did Interferon for a full year because it was the only approved game in town 2 years ago for Stage 3's ….today the world is very different. (and I would have made a different choice if I had just been diagnosed today)
Best wishes
Michel
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- January 8, 2017 at 9:05 am
Michel ! Very inetersting comment you made: I would have made a different choice if I had just been diagnosed today. Can you tell what you did then and what you would have done differently just few years later? I am still learing ( I was diagnozed 2 months ago, possibly IB, dermatologist just sent me home saying "live your happy life"…I am going to have PET sacnning and SLNB possibly next week)
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- January 8, 2017 at 9:05 am
Michel ! Very inetersting comment you made: I would have made a different choice if I had just been diagnosed today. Can you tell what you did then and what you would have done differently just few years later? I am still learing ( I was diagnozed 2 months ago, possibly IB, dermatologist just sent me home saying "live your happy life"…I am going to have PET sacnning and SLNB possibly next week)
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- January 8, 2017 at 3:05 pm
UB – what would I do now with 27 months behind me? Good question…
First of all, for a 3A there is a 1 in 3 chance of reoccurrence which often meant Stage 4. And the Stage 4 at that time was largely a death sentence measured in 5-8 months on average. So I opted for Interferon which had two measured benefits: a small (5-10% improvement in 5 year survivor statistics) AND more importantly a 6-12 month delay in the likelihood of reoccurrence. So was the pain of Interferon (essentially was given the flu 150 times in 2015) worth the pain….I guess we will never know for sure.
But as we know the world of Melanoma is very different with a much better landscape. What would I do now. Watch and wait was and would never be an option with me especially if I thought I had a chance of preventing going to Stage 4…which is still even today a very uncertain journey.
So no to Interferon. Maybe to IPI…but never the 10 unit dosage that was officially diagnosed. If I was to do IPI it would be the 3 unit dosage which is where most Stage 4 patients actually start. The main thought is that IPI has some very nasty and largely still not well understood side effects that don't always go away after completion of treatment.
But most likely I would look to some of the more interesting Stage 3 adjunctive trials that are going on. Most likely something like Keytruda which has demonstrated benefit in Stage 4 without the high risks of IPI. There are some other new and interesting things going on that I am not so well versed in that maybe others might be able to provide insight on.
Right now…I am living life to the fullest…doing my scans every 3 months and moving on. If my January 31st scan goes well….then I move on to doing scans every 6 months. AND I will also live with some positive vibes that my chances of reoccurrence at this point are now only 1 in 5…and if I make two more scans then closer to 1 in 10.
Get educated…watch and wait was not for me (as a Stage 3)…but it also requires a fair amount of research and choices to be made.
Best wishes
Michel
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- January 8, 2017 at 3:05 pm
UB – what would I do now with 27 months behind me? Good question…
First of all, for a 3A there is a 1 in 3 chance of reoccurrence which often meant Stage 4. And the Stage 4 at that time was largely a death sentence measured in 5-8 months on average. So I opted for Interferon which had two measured benefits: a small (5-10% improvement in 5 year survivor statistics) AND more importantly a 6-12 month delay in the likelihood of reoccurrence. So was the pain of Interferon (essentially was given the flu 150 times in 2015) worth the pain….I guess we will never know for sure.
But as we know the world of Melanoma is very different with a much better landscape. What would I do now. Watch and wait was and would never be an option with me especially if I thought I had a chance of preventing going to Stage 4…which is still even today a very uncertain journey.
So no to Interferon. Maybe to IPI…but never the 10 unit dosage that was officially diagnosed. If I was to do IPI it would be the 3 unit dosage which is where most Stage 4 patients actually start. The main thought is that IPI has some very nasty and largely still not well understood side effects that don't always go away after completion of treatment.
But most likely I would look to some of the more interesting Stage 3 adjunctive trials that are going on. Most likely something like Keytruda which has demonstrated benefit in Stage 4 without the high risks of IPI. There are some other new and interesting things going on that I am not so well versed in that maybe others might be able to provide insight on.
Right now…I am living life to the fullest…doing my scans every 3 months and moving on. If my January 31st scan goes well….then I move on to doing scans every 6 months. AND I will also live with some positive vibes that my chances of reoccurrence at this point are now only 1 in 5…and if I make two more scans then closer to 1 in 10.
Get educated…watch and wait was not for me (as a Stage 3)…but it also requires a fair amount of research and choices to be made.
Best wishes
Michel
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- January 8, 2017 at 3:05 pm
UB – what would I do now with 27 months behind me? Good question…
First of all, for a 3A there is a 1 in 3 chance of reoccurrence which often meant Stage 4. And the Stage 4 at that time was largely a death sentence measured in 5-8 months on average. So I opted for Interferon which had two measured benefits: a small (5-10% improvement in 5 year survivor statistics) AND more importantly a 6-12 month delay in the likelihood of reoccurrence. So was the pain of Interferon (essentially was given the flu 150 times in 2015) worth the pain….I guess we will never know for sure.
But as we know the world of Melanoma is very different with a much better landscape. What would I do now. Watch and wait was and would never be an option with me especially if I thought I had a chance of preventing going to Stage 4…which is still even today a very uncertain journey.
So no to Interferon. Maybe to IPI…but never the 10 unit dosage that was officially diagnosed. If I was to do IPI it would be the 3 unit dosage which is where most Stage 4 patients actually start. The main thought is that IPI has some very nasty and largely still not well understood side effects that don't always go away after completion of treatment.
But most likely I would look to some of the more interesting Stage 3 adjunctive trials that are going on. Most likely something like Keytruda which has demonstrated benefit in Stage 4 without the high risks of IPI. There are some other new and interesting things going on that I am not so well versed in that maybe others might be able to provide insight on.
Right now…I am living life to the fullest…doing my scans every 3 months and moving on. If my January 31st scan goes well….then I move on to doing scans every 6 months. AND I will also live with some positive vibes that my chances of reoccurrence at this point are now only 1 in 5…and if I make two more scans then closer to 1 in 10.
Get educated…watch and wait was not for me (as a Stage 3)…but it also requires a fair amount of research and choices to be made.
Best wishes
Michel
-
- January 8, 2017 at 9:05 am
Michel ! Very inetersting comment you made: I would have made a different choice if I had just been diagnosed today. Can you tell what you did then and what you would have done differently just few years later? I am still learing ( I was diagnozed 2 months ago, possibly IB, dermatologist just sent me home saying "live your happy life"…I am going to have PET sacnning and SLNB possibly next week)
-
- January 8, 2017 at 2:30 am
Ava – I am also a 3A and have been NED for just over 2 years. The prognosis for all stages of melanoma have gotten much, much better than any of the currently published stats (which are quite scary for sure). The truth is that these new drugs are doing so well that they just haven't had enough time in the field to understand the long term stats.
I think the one thing that EVERYBODY on this forum would deem the MOST critical thing is to find yourself a real melanoma specialist. One that sees melanoma patients every single day. If that means you have to drive…then do it for at least the important consults.
I did Interferon for a full year because it was the only approved game in town 2 years ago for Stage 3's ….today the world is very different. (and I would have made a different choice if I had just been diagnosed today)
Best wishes
Michel
-
- January 8, 2017 at 2:30 am
Ava – I am also a 3A and have been NED for just over 2 years. The prognosis for all stages of melanoma have gotten much, much better than any of the currently published stats (which are quite scary for sure). The truth is that these new drugs are doing so well that they just haven't had enough time in the field to understand the long term stats.
I think the one thing that EVERYBODY on this forum would deem the MOST critical thing is to find yourself a real melanoma specialist. One that sees melanoma patients every single day. If that means you have to drive…then do it for at least the important consults.
I did Interferon for a full year because it was the only approved game in town 2 years ago for Stage 3's ….today the world is very different. (and I would have made a different choice if I had just been diagnosed today)
Best wishes
Michel
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- January 8, 2017 at 4:19 am
I'm 3b and NED for 4 years. I did the wle, snb, and watch and fret. There are a ton of stage 3ers out there that are NED. Also, keep in mind most of the people on this forum are in the midst of a struggle so it is not an accurate representation of what is happening world wide. Good luck and remember the fear of melanoma progressing does no good. Listen to the melanoma specialists and don't read about prognosis info. You are either alive or dead and there is a 100% chance you will eventually die. It's not dying I'm talking about-it's living!
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- January 8, 2017 at 4:19 am
I'm 3b and NED for 4 years. I did the wle, snb, and watch and fret. There are a ton of stage 3ers out there that are NED. Also, keep in mind most of the people on this forum are in the midst of a struggle so it is not an accurate representation of what is happening world wide. Good luck and remember the fear of melanoma progressing does no good. Listen to the melanoma specialists and don't read about prognosis info. You are either alive or dead and there is a 100% chance you will eventually die. It's not dying I'm talking about-it's living!
-
- January 8, 2017 at 4:19 am
I'm 3b and NED for 4 years. I did the wle, snb, and watch and fret. There are a ton of stage 3ers out there that are NED. Also, keep in mind most of the people on this forum are in the midst of a struggle so it is not an accurate representation of what is happening world wide. Good luck and remember the fear of melanoma progressing does no good. Listen to the melanoma specialists and don't read about prognosis info. You are either alive or dead and there is a 100% chance you will eventually die. It's not dying I'm talking about-it's living!
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- January 8, 2017 at 9:10 am
I truly believe the majority of people with MM never signup here and any other social media site as most Drs send them home saying "no treatment needed, just follow up with regular checks". And most of them indeed live normal life without recurrences. This is why we do not have many people in this site who would say they have been NED for long years.
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- January 8, 2017 at 9:10 am
I truly believe the majority of people with MM never signup here and any other social media site as most Drs send them home saying "no treatment needed, just follow up with regular checks". And most of them indeed live normal life without recurrences. This is why we do not have many people in this site who would say they have been NED for long years.
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- January 8, 2017 at 3:34 pm
My husband started his melanoma journey Jan. 2008 at a 3 B and did the watch and wait which in 2008 – 2011 was all you could do if you did not do interferon. He had the WLE and SNB and all came back clear. He had 3 more melanoma surgeries and in Oct. 2010 was staged 4 with an unresectable tumor on the C! C@ Cervical spine and tumors in the lungs and liver. He started a clinical trial in Mar. 2011 with Ipi (10mg/kg) and GM-CSF. He finished the initial 4 doses in 12 weeks and then went into maintenance doses of every 12 weeks. He became NED in July 2012 and has remained that. He didn't have a lot of the nasty side effects of Ipi (Yervoy) as not everyone does.
He was seeing a melanoma specialist through this journey which I believe is very important. The thing to remember not everyone reacts to everything the same. Many good treatments and combos have been invented. I believe it is great knowing he has lived 4.5 years NED. The doctor said it is a good chance he will die from something other than melanoma. It is true a lot of the people that have succeeded with treatment do not come here often as they are busy living life but many do check in from time to time and if nothing else post the Anniversary of giving Melanoma the boot.
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- January 8, 2017 at 3:34 pm
My husband started his melanoma journey Jan. 2008 at a 3 B and did the watch and wait which in 2008 – 2011 was all you could do if you did not do interferon. He had the WLE and SNB and all came back clear. He had 3 more melanoma surgeries and in Oct. 2010 was staged 4 with an unresectable tumor on the C! C@ Cervical spine and tumors in the lungs and liver. He started a clinical trial in Mar. 2011 with Ipi (10mg/kg) and GM-CSF. He finished the initial 4 doses in 12 weeks and then went into maintenance doses of every 12 weeks. He became NED in July 2012 and has remained that. He didn't have a lot of the nasty side effects of Ipi (Yervoy) as not everyone does.
He was seeing a melanoma specialist through this journey which I believe is very important. The thing to remember not everyone reacts to everything the same. Many good treatments and combos have been invented. I believe it is great knowing he has lived 4.5 years NED. The doctor said it is a good chance he will die from something other than melanoma. It is true a lot of the people that have succeeded with treatment do not come here often as they are busy living life but many do check in from time to time and if nothing else post the Anniversary of giving Melanoma the boot.
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- January 8, 2017 at 3:34 pm
My husband started his melanoma journey Jan. 2008 at a 3 B and did the watch and wait which in 2008 – 2011 was all you could do if you did not do interferon. He had the WLE and SNB and all came back clear. He had 3 more melanoma surgeries and in Oct. 2010 was staged 4 with an unresectable tumor on the C! C@ Cervical spine and tumors in the lungs and liver. He started a clinical trial in Mar. 2011 with Ipi (10mg/kg) and GM-CSF. He finished the initial 4 doses in 12 weeks and then went into maintenance doses of every 12 weeks. He became NED in July 2012 and has remained that. He didn't have a lot of the nasty side effects of Ipi (Yervoy) as not everyone does.
He was seeing a melanoma specialist through this journey which I believe is very important. The thing to remember not everyone reacts to everything the same. Many good treatments and combos have been invented. I believe it is great knowing he has lived 4.5 years NED. The doctor said it is a good chance he will die from something other than melanoma. It is true a lot of the people that have succeeded with treatment do not come here often as they are busy living life but many do check in from time to time and if nothing else post the Anniversary of giving Melanoma the boot.
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- January 8, 2017 at 4:01 pm
No, it's not because their docs said you're fine and followup with regular checks. Ok, maybe for some. But tell me this, if you were 5 years NED, you are going to be out living your life. Why would you ever think you needed to visit a melanoma board? You've moved on. You are doing your checks with your doctor but you are otherwise melanoma free. Why would you need to spend your time on a melanoma board? (I ask myself this daily). You have no questions to ask and support isn't everybody's thing. People visit here when they have reasons to be here and that typically means newly diagnosed or actively fighting disease. There is no other reason to spend time here because frankly, it can be depressing.
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- January 8, 2017 at 4:01 pm
No, it's not because their docs said you're fine and followup with regular checks. Ok, maybe for some. But tell me this, if you were 5 years NED, you are going to be out living your life. Why would you ever think you needed to visit a melanoma board? You've moved on. You are doing your checks with your doctor but you are otherwise melanoma free. Why would you need to spend your time on a melanoma board? (I ask myself this daily). You have no questions to ask and support isn't everybody's thing. People visit here when they have reasons to be here and that typically means newly diagnosed or actively fighting disease. There is no other reason to spend time here because frankly, it can be depressing.
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- January 8, 2017 at 6:24 pm
True, absolutely true points, Jenner.
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- January 8, 2017 at 6:24 pm
True, absolutely true points, Jenner.
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- January 8, 2017 at 6:24 pm
True, absolutely true points, Jenner.
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- January 8, 2017 at 4:01 pm
No, it's not because their docs said you're fine and followup with regular checks. Ok, maybe for some. But tell me this, if you were 5 years NED, you are going to be out living your life. Why would you ever think you needed to visit a melanoma board? You've moved on. You are doing your checks with your doctor but you are otherwise melanoma free. Why would you need to spend your time on a melanoma board? (I ask myself this daily). You have no questions to ask and support isn't everybody's thing. People visit here when they have reasons to be here and that typically means newly diagnosed or actively fighting disease. There is no other reason to spend time here because frankly, it can be depressing.
-
- January 8, 2017 at 9:10 am
I truly believe the majority of people with MM never signup here and any other social media site as most Drs send them home saying "no treatment needed, just follow up with regular checks". And most of them indeed live normal life without recurrences. This is why we do not have many people in this site who would say they have been NED for long years.
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- January 8, 2017 at 8:40 pm
Wow – thank you all so much for taking the time to reply so thoughtfully.
we are in the UK and so my husbands options for adjuvant therapy are so limited. Which is such a shame. The national health service (NHS) don't offer any for stage 3. The only way to access such drugs is via clinical trials and then you face the 50/50 chance of getting on placebo arm. He was v.happy to go with a trial just for a chance but he has been told his sentinel lymph node tumour burden was too small (minimum cut of 1mm to be eligible).
It looks like he is stuck with the watch and wait approach only. With two young kids though he has to do something to up his chances so he's doing as much as he can to maintain a healthy immune system. It's just the damn anxiety that needs to be kept at bay as much as possible. You are all so right about needing to live. This is a mindset shift in going to have to practise!! X
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- January 8, 2017 at 8:40 pm
Wow – thank you all so much for taking the time to reply so thoughtfully.
we are in the UK and so my husbands options for adjuvant therapy are so limited. Which is such a shame. The national health service (NHS) don't offer any for stage 3. The only way to access such drugs is via clinical trials and then you face the 50/50 chance of getting on placebo arm. He was v.happy to go with a trial just for a chance but he has been told his sentinel lymph node tumour burden was too small (minimum cut of 1mm to be eligible).
It looks like he is stuck with the watch and wait approach only. With two young kids though he has to do something to up his chances so he's doing as much as he can to maintain a healthy immune system. It's just the damn anxiety that needs to be kept at bay as much as possible. You are all so right about needing to live. This is a mindset shift in going to have to practise!! X
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- January 8, 2017 at 8:40 pm
Wow – thank you all so much for taking the time to reply so thoughtfully.
we are in the UK and so my husbands options for adjuvant therapy are so limited. Which is such a shame. The national health service (NHS) don't offer any for stage 3. The only way to access such drugs is via clinical trials and then you face the 50/50 chance of getting on placebo arm. He was v.happy to go with a trial just for a chance but he has been told his sentinel lymph node tumour burden was too small (minimum cut of 1mm to be eligible).
It looks like he is stuck with the watch and wait approach only. With two young kids though he has to do something to up his chances so he's doing as much as he can to maintain a healthy immune system. It's just the damn anxiety that needs to be kept at bay as much as possible. You are all so right about needing to live. This is a mindset shift in going to have to practise!! X
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- January 8, 2017 at 10:50 pm
I am currently stage 3A and have two very small children so I totally understand your stress! With that being said I chose to see a specialist at MD Anderson for a 2nd opion. My first oncoligist was not a melanoma specialist. I was told at MD that the risk of the yervoy compared to the possible benefit was not worth the risk of the damage that you could possibly have from the side affects of the drug. The approved dosage is the 10mg and can possibly have risky life changing side affect. We chose to do the scans and live life to the fullest. I also didn't have a large enough tumor burden to get on a trail. I will go back for my first set of scans Jan 18th. Yes I am very nervous and all this is still very new to me as I was diagnosed only 4 months ago. Each day will get easier and some days will still get you down and be very hard. Those are the days you grab your babies and take them out to play or do something special. So just know that even though the drug is avaliable in the US for 3A that doesn't mean that some of the top special would recommend it. I went in to my appt willing to try any drug that they would offer but after a lot of talk with the doctors we decided that watch and wait was that best think to do.
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- January 9, 2017 at 1:05 am
My situation is very similar to your husbands…2.0 mm superficial spreading melanoma on right calf, .9mm microscopic metastasis to local lymph nodes…I had 4 removed, just the one with the micro met…declined treatment and CLND as my oncologist felt with the small amount in one lymph node "I may never have to deal with melanoma again" her words, but then again we never know…that's why I always check in her 2 1/2 years later…to read, and give some hope to others…2 1/2 year ultrasound on Wednesday ….still NED …
wish your husband the best and stat positive
craig
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- January 9, 2017 at 7:39 pm
So nice to hear you are NED, buddy. Gives so much hope…
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- January 9, 2017 at 7:39 pm
So nice to hear you are NED, buddy. Gives so much hope…
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- January 9, 2017 at 7:39 pm
So nice to hear you are NED, buddy. Gives so much hope…
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- January 9, 2017 at 1:05 am
My situation is very similar to your husbands…2.0 mm superficial spreading melanoma on right calf, .9mm microscopic metastasis to local lymph nodes…I had 4 removed, just the one with the micro met…declined treatment and CLND as my oncologist felt with the small amount in one lymph node "I may never have to deal with melanoma again" her words, but then again we never know…that's why I always check in her 2 1/2 years later…to read, and give some hope to others…2 1/2 year ultrasound on Wednesday ….still NED …
wish your husband the best and stat positive
craig
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- January 9, 2017 at 1:05 am
My situation is very similar to your husbands…2.0 mm superficial spreading melanoma on right calf, .9mm microscopic metastasis to local lymph nodes…I had 4 removed, just the one with the micro met…declined treatment and CLND as my oncologist felt with the small amount in one lymph node "I may never have to deal with melanoma again" her words, but then again we never know…that's why I always check in her 2 1/2 years later…to read, and give some hope to others…2 1/2 year ultrasound on Wednesday ….still NED …
wish your husband the best and stat positive
craig
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- January 9, 2017 at 1:04 pm
Thanks so much for replying. My hubby was diagnosed initially in August, which I guess is very similar to the time you were. He only had his WLE excision and SLNB late Nov and groin dissection week and half ago. That is so interesting to hear you were advised watch and wait. That really helps put a different perspective on it for me. Seems I'm on a mission to make sure my hubby can have everything that may possibly help. But I need to keep in mind that there are good reasons sometimes why things aren't offered. I was told when we enquiries about trials that due to his low tumour burden in sentinel node he may never have to deal with this thing again, by a well regarded oncologist here specialising in melanoma – I keep that email and read and re-read! I will be keeping my fingers crossed for your scans on 18th and hope to raise a glass to you when you have beautiful clear results! X
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- January 9, 2017 at 1:06 pm
Thank you cavsnut. It is so great to hear positive stories and for you to take the time to post. It must be hard coming back to forums like this sometimes when you are past the initial diagnosis and getting on with life. To hear tour story really helps though x
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- January 9, 2017 at 1:06 pm
Thank you cavsnut. It is so great to hear positive stories and for you to take the time to post. It must be hard coming back to forums like this sometimes when you are past the initial diagnosis and getting on with life. To hear tour story really helps though x
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- January 9, 2017 at 1:06 pm
Thank you cavsnut. It is so great to hear positive stories and for you to take the time to post. It must be hard coming back to forums like this sometimes when you are past the initial diagnosis and getting on with life. To hear tour story really helps though x
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- January 9, 2017 at 1:04 pm
Thanks so much for replying. My hubby was diagnosed initially in August, which I guess is very similar to the time you were. He only had his WLE excision and SLNB late Nov and groin dissection week and half ago. That is so interesting to hear you were advised watch and wait. That really helps put a different perspective on it for me. Seems I'm on a mission to make sure my hubby can have everything that may possibly help. But I need to keep in mind that there are good reasons sometimes why things aren't offered. I was told when we enquiries about trials that due to his low tumour burden in sentinel node he may never have to deal with this thing again, by a well regarded oncologist here specialising in melanoma – I keep that email and read and re-read! I will be keeping my fingers crossed for your scans on 18th and hope to raise a glass to you when you have beautiful clear results! X
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- January 9, 2017 at 1:04 pm
Thanks so much for replying. My hubby was diagnosed initially in August, which I guess is very similar to the time you were. He only had his WLE excision and SLNB late Nov and groin dissection week and half ago. That is so interesting to hear you were advised watch and wait. That really helps put a different perspective on it for me. Seems I'm on a mission to make sure my hubby can have everything that may possibly help. But I need to keep in mind that there are good reasons sometimes why things aren't offered. I was told when we enquiries about trials that due to his low tumour burden in sentinel node he may never have to deal with this thing again, by a well regarded oncologist here specialising in melanoma – I keep that email and read and re-read! I will be keeping my fingers crossed for your scans on 18th and hope to raise a glass to you when you have beautiful clear results! X
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- January 8, 2017 at 10:50 pm
I am currently stage 3A and have two very small children so I totally understand your stress! With that being said I chose to see a specialist at MD Anderson for a 2nd opion. My first oncoligist was not a melanoma specialist. I was told at MD that the risk of the yervoy compared to the possible benefit was not worth the risk of the damage that you could possibly have from the side affects of the drug. The approved dosage is the 10mg and can possibly have risky life changing side affect. We chose to do the scans and live life to the fullest. I also didn't have a large enough tumor burden to get on a trail. I will go back for my first set of scans Jan 18th. Yes I am very nervous and all this is still very new to me as I was diagnosed only 4 months ago. Each day will get easier and some days will still get you down and be very hard. Those are the days you grab your babies and take them out to play or do something special. So just know that even though the drug is avaliable in the US for 3A that doesn't mean that some of the top special would recommend it. I went in to my appt willing to try any drug that they would offer but after a lot of talk with the doctors we decided that watch and wait was that best think to do.
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- January 8, 2017 at 10:50 pm
I am currently stage 3A and have two very small children so I totally understand your stress! With that being said I chose to see a specialist at MD Anderson for a 2nd opion. My first oncoligist was not a melanoma specialist. I was told at MD that the risk of the yervoy compared to the possible benefit was not worth the risk of the damage that you could possibly have from the side affects of the drug. The approved dosage is the 10mg and can possibly have risky life changing side affect. We chose to do the scans and live life to the fullest. I also didn't have a large enough tumor burden to get on a trail. I will go back for my first set of scans Jan 18th. Yes I am very nervous and all this is still very new to me as I was diagnosed only 4 months ago. Each day will get easier and some days will still get you down and be very hard. Those are the days you grab your babies and take them out to play or do something special. So just know that even though the drug is avaliable in the US for 3A that doesn't mean that some of the top special would recommend it. I went in to my appt willing to try any drug that they would offer but after a lot of talk with the doctors we decided that watch and wait was that best think to do.
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