› Forums › General Melanoma Community › Looking forward…..
- This topic has 18 replies, 6 voices, and was last updated 12 years, 5 months ago by
Charlie S.
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- September 11, 2012 at 4:52 pm
My husband (age 31) has Stage 3C Melanoma. (Clark Level IV, 1,4mm, no ulceration, 2 positive lymph nodes extremely large in size that were matted together with extracapsular extensions in one). He was diagnosed in late February 2011/early March. In early April he had a surgery to remove remaining lymph nodes in the area.
June-July 2011- 6 weeks of radiation to area
July 2011-2012- Interferon treatment
My husband (age 31) has Stage 3C Melanoma. (Clark Level IV, 1,4mm, no ulceration, 2 positive lymph nodes extremely large in size that were matted together with extracapsular extensions in one). He was diagnosed in late February 2011/early March. In early April he had a surgery to remove remaining lymph nodes in the area.
June-July 2011- 6 weeks of radiation to area
July 2011-2012- Interferon treatment
I have done so much research on whats to come, and the statistics are just heart breaking. I've been to almost every single appointment, so I'm pretty well informed with everything; however, I just feel like there is so much information I do not know.
I want to stay positive and think that treatment is behind us and the only thing to focus on now is follow-ups; however, I can't get the stats out of my head. We haven't had any discussions with doctors on the what ifs….
If it changes to Stage 4….
1) What are the treatment options- how long, effectivness, how does the side effects compare to the previous treatments
2) Less than 30% survival rate….what on earth do you have to do to be one of those few people that live a long healthy life?
3) Are there ways to get Life Insurance with such a late stage of Cancer?
I do not like the "wait and see" game… he recently had a PET Scan done, and we will have results next week…and the scan-xiety just doesn't go away. He doesn't want to think of the what ifs and worry…which I"m glad he is staying positive and upbeat, but it makes me scared to ask these questions to his doctors because I don't want him to think I"m not being positive about everything. I so much hope that everything will be fine from here on out, but the stats…tell me something else.
Is it possible to look forward for life to return to what use to be normal anytime in the future…or is this the new normal?
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- September 11, 2012 at 6:09 pm
Most people want a perfect ending but the reality of life is that we don’t know and can’t predict the beginning, middle, and end of this journey, I think I am quoting Gilda Radner. Anyway, dealing with cancer is going to fill you with worry, fear, anxiety, and sadness, that’s perfectly normal. ITS SCARY! But, you must try to put things in perspective and truly enjoy the days when your husband is feeling good, and positive. Create wonderful memories! Hopefully, you will have years to create special moments. What you are looking for, doesn’t exist, no one can tell you whether you husband will have to deal with the beast again next month or in two years, or if you are lucky maybe never again! There are so many treatments for stage 4 patients, too hard to comment, plus melanoma treatment and trials are changing constantly! Many, many stage 4 patients fight melanoma for a very long time. My husband has been stage 4 for 14 months now, and (fingers crossed) is doing well.Our young son, age 9, asked me the other day in the car, since Daddy is doing and feeling well, is there a chance he could get all better? I think about that question with tears now, because life can be so unfair sometimes. I don’t want my little guy to worry about his Dad’s health, I want him to build Legos, and watch Spiderman! But, I had to answer him with the truth, which is that Daddy has an aggressive form of cancer and the tumors can grow again, but for now Daddy is doing well and we enjoy all the good days and happy moments that we have as a family! So, my long answer is you need to create your own new normal, cancer is a harsh reality but it can go on the back burner and some days JOY can be front and center! TAKE CARE! Valerie (PHIL’s wife)
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- September 11, 2012 at 6:09 pm
Most people want a perfect ending but the reality of life is that we don’t know and can’t predict the beginning, middle, and end of this journey, I think I am quoting Gilda Radner. Anyway, dealing with cancer is going to fill you with worry, fear, anxiety, and sadness, that’s perfectly normal. ITS SCARY! But, you must try to put things in perspective and truly enjoy the days when your husband is feeling good, and positive. Create wonderful memories! Hopefully, you will have years to create special moments. What you are looking for, doesn’t exist, no one can tell you whether you husband will have to deal with the beast again next month or in two years, or if you are lucky maybe never again! There are so many treatments for stage 4 patients, too hard to comment, plus melanoma treatment and trials are changing constantly! Many, many stage 4 patients fight melanoma for a very long time. My husband has been stage 4 for 14 months now, and (fingers crossed) is doing well.Our young son, age 9, asked me the other day in the car, since Daddy is doing and feeling well, is there a chance he could get all better? I think about that question with tears now, because life can be so unfair sometimes. I don’t want my little guy to worry about his Dad’s health, I want him to build Legos, and watch Spiderman! But, I had to answer him with the truth, which is that Daddy has an aggressive form of cancer and the tumors can grow again, but for now Daddy is doing well and we enjoy all the good days and happy moments that we have as a family! So, my long answer is you need to create your own new normal, cancer is a harsh reality but it can go on the back burner and some days JOY can be front and center! TAKE CARE! Valerie (PHIL’s wife)
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- September 11, 2012 at 6:09 pm
Most people want a perfect ending but the reality of life is that we don’t know and can’t predict the beginning, middle, and end of this journey, I think I am quoting Gilda Radner. Anyway, dealing with cancer is going to fill you with worry, fear, anxiety, and sadness, that’s perfectly normal. ITS SCARY! But, you must try to put things in perspective and truly enjoy the days when your husband is feeling good, and positive. Create wonderful memories! Hopefully, you will have years to create special moments. What you are looking for, doesn’t exist, no one can tell you whether you husband will have to deal with the beast again next month or in two years, or if you are lucky maybe never again! There are so many treatments for stage 4 patients, too hard to comment, plus melanoma treatment and trials are changing constantly! Many, many stage 4 patients fight melanoma for a very long time. My husband has been stage 4 for 14 months now, and (fingers crossed) is doing well.Our young son, age 9, asked me the other day in the car, since Daddy is doing and feeling well, is there a chance he could get all better? I think about that question with tears now, because life can be so unfair sometimes. I don’t want my little guy to worry about his Dad’s health, I want him to build Legos, and watch Spiderman! But, I had to answer him with the truth, which is that Daddy has an aggressive form of cancer and the tumors can grow again, but for now Daddy is doing well and we enjoy all the good days and happy moments that we have as a family! So, my long answer is you need to create your own new normal, cancer is a harsh reality but it can go on the back burner and some days JOY can be front and center! TAKE CARE! Valerie (PHIL’s wife)
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- September 11, 2012 at 6:47 pm
I just got diagnosed stage 3C today myself and I am 38 with a wife and 3 young boys so I can understand what you are going through. This is scary and can take over your life if you let it. My advice is to live life as fully as you can – get out there and do things to make those great memories. None of us can predict the future and the statistics are sobering.
I am not going to try to address treatment options for stage 4 b/c there are many more experienced with that here. Relative to life insurance, my first recommendation is to see what is available through his employer or your employer. My employer has standard life insurance that costs no extra but then also offers supplemental life insurance at some small cost – up to 4X annual pay is available in my case without the need for pre-screening medical conditions.
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- September 11, 2012 at 6:47 pm
I just got diagnosed stage 3C today myself and I am 38 with a wife and 3 young boys so I can understand what you are going through. This is scary and can take over your life if you let it. My advice is to live life as fully as you can – get out there and do things to make those great memories. None of us can predict the future and the statistics are sobering.
I am not going to try to address treatment options for stage 4 b/c there are many more experienced with that here. Relative to life insurance, my first recommendation is to see what is available through his employer or your employer. My employer has standard life insurance that costs no extra but then also offers supplemental life insurance at some small cost – up to 4X annual pay is available in my case without the need for pre-screening medical conditions.
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- September 11, 2012 at 6:47 pm
I just got diagnosed stage 3C today myself and I am 38 with a wife and 3 young boys so I can understand what you are going through. This is scary and can take over your life if you let it. My advice is to live life as fully as you can – get out there and do things to make those great memories. None of us can predict the future and the statistics are sobering.
I am not going to try to address treatment options for stage 4 b/c there are many more experienced with that here. Relative to life insurance, my first recommendation is to see what is available through his employer or your employer. My employer has standard life insurance that costs no extra but then also offers supplemental life insurance at some small cost – up to 4X annual pay is available in my case without the need for pre-screening medical conditions.
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- September 11, 2012 at 11:10 pm
I was first diagnosed at stage III and just continued to get worse. Not in how I felt…I never felt bad but I ended up stage IV. Now I'm getting better. My tumors are shrinking. Now you would never hope to get "worse"; I'm just saying that it's not necessarily a death sentence. I never tried to get life insurance but there was a month between being on my wife's group health insurance and going on Medicare and I could not get a policy anywhere. They often only asked 3 questions, one of which was "have you ever been diagnosed with cancer." Dan
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- September 11, 2012 at 11:10 pm
I was first diagnosed at stage III and just continued to get worse. Not in how I felt…I never felt bad but I ended up stage IV. Now I'm getting better. My tumors are shrinking. Now you would never hope to get "worse"; I'm just saying that it's not necessarily a death sentence. I never tried to get life insurance but there was a month between being on my wife's group health insurance and going on Medicare and I could not get a policy anywhere. They often only asked 3 questions, one of which was "have you ever been diagnosed with cancer." Dan
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- September 11, 2012 at 11:10 pm
I was first diagnosed at stage III and just continued to get worse. Not in how I felt…I never felt bad but I ended up stage IV. Now I'm getting better. My tumors are shrinking. Now you would never hope to get "worse"; I'm just saying that it's not necessarily a death sentence. I never tried to get life insurance but there was a month between being on my wife's group health insurance and going on Medicare and I could not get a policy anywhere. They often only asked 3 questions, one of which was "have you ever been diagnosed with cancer." Dan
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- September 11, 2012 at 11:56 pm
Sometimes timing is EVERYTHING!
I am stage IIIC and NED (that's No Evidence of Disease) 11 years TODAY. When those twin towers were falling I was being wheeled into surgery at Univ. of Michigan. My circumstances are very similar to your husband. Mine was three nodes positive, one with extracapsular extensions going into a muscle in my back so the surgeon removed that as well as all the nodes. He said he just kept going "until he didn't see anymore black".
I also did interferon, got through 9 months of it and then sat and waited for the other shoe to fall, as they say. I can tell you that it gets better with time. It was also easier for me, I think, since the major melanoma center I go to will NOT do scans after stage III unless you have symptoms so there was no scanxiety to deal with. I know every single statistic on this by heart but I always felt I could be in the small number who does well. I was very lucky that my son found this site for me so I also saw many people doing well after a poor prognosis – even MANY going strong after stage IV. So, learn those stats and then KNOW that your husband isn't a number. I know how hard that it and I don't want to make it sound like I thought I was different than anyone else and would be luckier than most, it's just that when I saw that other people were doing well I realized that sometimes people CAN get well and it gave me hope.
Good luck to you and your husband. Try hard not to think of the what if's. One thing that helped me was someone saying "what if you live even another 5 years and you spend it all worrying" and I realized what a waste that would be. I hope you find hope in all the people here who are 3C and are fine years later.
DebbieH, stage IIIC, NED 11 years TODAY after inf and no scans
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- September 11, 2012 at 11:56 pm
Sometimes timing is EVERYTHING!
I am stage IIIC and NED (that's No Evidence of Disease) 11 years TODAY. When those twin towers were falling I was being wheeled into surgery at Univ. of Michigan. My circumstances are very similar to your husband. Mine was three nodes positive, one with extracapsular extensions going into a muscle in my back so the surgeon removed that as well as all the nodes. He said he just kept going "until he didn't see anymore black".
I also did interferon, got through 9 months of it and then sat and waited for the other shoe to fall, as they say. I can tell you that it gets better with time. It was also easier for me, I think, since the major melanoma center I go to will NOT do scans after stage III unless you have symptoms so there was no scanxiety to deal with. I know every single statistic on this by heart but I always felt I could be in the small number who does well. I was very lucky that my son found this site for me so I also saw many people doing well after a poor prognosis – even MANY going strong after stage IV. So, learn those stats and then KNOW that your husband isn't a number. I know how hard that it and I don't want to make it sound like I thought I was different than anyone else and would be luckier than most, it's just that when I saw that other people were doing well I realized that sometimes people CAN get well and it gave me hope.
Good luck to you and your husband. Try hard not to think of the what if's. One thing that helped me was someone saying "what if you live even another 5 years and you spend it all worrying" and I realized what a waste that would be. I hope you find hope in all the people here who are 3C and are fine years later.
DebbieH, stage IIIC, NED 11 years TODAY after inf and no scans
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- September 11, 2012 at 11:56 pm
Sometimes timing is EVERYTHING!
I am stage IIIC and NED (that's No Evidence of Disease) 11 years TODAY. When those twin towers were falling I was being wheeled into surgery at Univ. of Michigan. My circumstances are very similar to your husband. Mine was three nodes positive, one with extracapsular extensions going into a muscle in my back so the surgeon removed that as well as all the nodes. He said he just kept going "until he didn't see anymore black".
I also did interferon, got through 9 months of it and then sat and waited for the other shoe to fall, as they say. I can tell you that it gets better with time. It was also easier for me, I think, since the major melanoma center I go to will NOT do scans after stage III unless you have symptoms so there was no scanxiety to deal with. I know every single statistic on this by heart but I always felt I could be in the small number who does well. I was very lucky that my son found this site for me so I also saw many people doing well after a poor prognosis – even MANY going strong after stage IV. So, learn those stats and then KNOW that your husband isn't a number. I know how hard that it and I don't want to make it sound like I thought I was different than anyone else and would be luckier than most, it's just that when I saw that other people were doing well I realized that sometimes people CAN get well and it gave me hope.
Good luck to you and your husband. Try hard not to think of the what if's. One thing that helped me was someone saying "what if you live even another 5 years and you spend it all worrying" and I realized what a waste that would be. I hope you find hope in all the people here who are 3C and are fine years later.
DebbieH, stage IIIC, NED 11 years TODAY after inf and no scans
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- September 12, 2012 at 2:54 am
Please read and listen to what DebbieH is saying Mrs. Anon, because she has been there and done that and is living proof…………………not some random abberation or statistic; she is alive and she had to do it the hard way, just like you are starting to see.
For whatever reason of fate, I was on this board when DebbieH was first diagnosed and have seen her and shared with her at times on this board, the moment by moment, day by day, week by week month by month and now year by year, agonize, learn, explore, adapt, cope, mature, embrace and accept as she has taken the wild ride on the cancer coaster.
But through all of that, she stands before you as not just a witness, but a testament.
Eleven years, you go DebbieH !
You would do well to listen to her Mrs. Anon………………..Debbie did not quite or fully believe 11 years ago it was possible either but she wanted to and as can you see, she did., One CAN move on………………….no, not easy, but it IS doable.
Cheers,
Charlie S
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- September 12, 2012 at 2:54 am
Please read and listen to what DebbieH is saying Mrs. Anon, because she has been there and done that and is living proof…………………not some random abberation or statistic; she is alive and she had to do it the hard way, just like you are starting to see.
For whatever reason of fate, I was on this board when DebbieH was first diagnosed and have seen her and shared with her at times on this board, the moment by moment, day by day, week by week month by month and now year by year, agonize, learn, explore, adapt, cope, mature, embrace and accept as she has taken the wild ride on the cancer coaster.
But through all of that, she stands before you as not just a witness, but a testament.
Eleven years, you go DebbieH !
You would do well to listen to her Mrs. Anon………………..Debbie did not quite or fully believe 11 years ago it was possible either but she wanted to and as can you see, she did., One CAN move on………………….no, not easy, but it IS doable.
Cheers,
Charlie S
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- September 12, 2012 at 2:54 am
Please read and listen to what DebbieH is saying Mrs. Anon, because she has been there and done that and is living proof…………………not some random abberation or statistic; she is alive and she had to do it the hard way, just like you are starting to see.
For whatever reason of fate, I was on this board when DebbieH was first diagnosed and have seen her and shared with her at times on this board, the moment by moment, day by day, week by week month by month and now year by year, agonize, learn, explore, adapt, cope, mature, embrace and accept as she has taken the wild ride on the cancer coaster.
But through all of that, she stands before you as not just a witness, but a testament.
Eleven years, you go DebbieH !
You would do well to listen to her Mrs. Anon………………..Debbie did not quite or fully believe 11 years ago it was possible either but she wanted to and as can you see, she did., One CAN move on………………….no, not easy, but it IS doable.
Cheers,
Charlie S
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- September 12, 2012 at 1:33 am
Hello,
My husband started out at Stage IIIC as his first lesion was 10.5 mm deep and ulcerated and that was in Jan. 2008. In Oct. 2010 he progressed to Stage IV and we really were in a bad place mentally about this. Then in Mar. 2011 he started a clinical trial. We physically watched the mets that were on the skin shrink away and this made us realize he does have a great chance of making it. In late July we found out he is NED (no evidence of disease). If you want to read his full story visit his profile.
Keep your chin up and try not to think the worse. Positive thinking will help you cope a little better and besides once you make it to this board you have a whole new family wishing, hoping and praying for your family. Many offer special things they find to help and you discuss almost anything here as many of us have been in the same place your family is in right now.
Prayers are being sent to help you through this rough time.
Judy (loving wife of Gene)
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- September 12, 2012 at 1:33 am
Hello,
My husband started out at Stage IIIC as his first lesion was 10.5 mm deep and ulcerated and that was in Jan. 2008. In Oct. 2010 he progressed to Stage IV and we really were in a bad place mentally about this. Then in Mar. 2011 he started a clinical trial. We physically watched the mets that were on the skin shrink away and this made us realize he does have a great chance of making it. In late July we found out he is NED (no evidence of disease). If you want to read his full story visit his profile.
Keep your chin up and try not to think the worse. Positive thinking will help you cope a little better and besides once you make it to this board you have a whole new family wishing, hoping and praying for your family. Many offer special things they find to help and you discuss almost anything here as many of us have been in the same place your family is in right now.
Prayers are being sent to help you through this rough time.
Judy (loving wife of Gene)
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- September 12, 2012 at 1:33 am
Hello,
My husband started out at Stage IIIC as his first lesion was 10.5 mm deep and ulcerated and that was in Jan. 2008. In Oct. 2010 he progressed to Stage IV and we really were in a bad place mentally about this. Then in Mar. 2011 he started a clinical trial. We physically watched the mets that were on the skin shrink away and this made us realize he does have a great chance of making it. In late July we found out he is NED (no evidence of disease). If you want to read his full story visit his profile.
Keep your chin up and try not to think the worse. Positive thinking will help you cope a little better and besides once you make it to this board you have a whole new family wishing, hoping and praying for your family. Many offer special things they find to help and you discuss almost anything here as many of us have been in the same place your family is in right now.
Prayers are being sent to help you through this rough time.
Judy (loving wife of Gene)
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