› Forums › General Melanoma Community › Life Is A Gamble
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Jim M..
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- August 23, 2010 at 12:03 am
My husband, Bob thought the song from The Gambler, from Kenny Rogers was appropriate after his doctor's visit on Friday so I will work with him on this one hard as it might be. Betting is all about percentages, so if you are a betting man/woman and the stakes are high it just might be an all or nothing bet for you if your life is involved. This is how it went down for Bob with the melanoma specialist in the Portland area on Friday.
Facts:
• Bob has melanoma stage 3, it's been 30 days after surgery
My husband, Bob thought the song from The Gambler, from Kenny Rogers was appropriate after his doctor's visit on Friday so I will work with him on this one hard as it might be. Betting is all about percentages, so if you are a betting man/woman and the stakes are high it just might be an all or nothing bet for you if your life is involved. This is how it went down for Bob with the melanoma specialist in the Portland area on Friday.
Facts:
• Bob has melanoma stage 3, it's been 30 days after surgery
• For most people with stage 3, this gives you odds of 50/50 of getting melanoma again of a more life threatening development within 5 years which turns into stage 4.
• Because of the size of Bob's tumor which was 2-3 inches, which was taken during surgery, his odds have now become 70-30 of getting melanoma again within 5 years and will threaten his life, stage 4.
• Treatment available for Bob:
1. Interferon: treatment for 1 year, makes you sick like flu, 5% works
2. Vaccine: made with protein from Bob's tumor, builds up his immunity so his body recognizes melanoma as an enemy and kills it. Clinical Trial, 2 people on, 1 person off, – NO GUARANTEE
3. Do nothing and wait
Reality Check:
The mean probability of death by car accident for United States residents is 1.49%. Source(s) 2005
Choices…
So, it was an emotional charged Friday when we met after work, talking about his doctor's appointment. It was hard seeing Bob realize his future in numbers for the first time in these many weeks. As much as I wanted to be there for that doctor's appointment when Bob told me that he had broken down for the first hearing about his uncertain future I knew reality had set in . Still trying to grasp the facts of this disease, the way it works against you fighting to take your life away and everything you have worked for this became no longer impersonal.
It was the first time I didn't know what to say to Bob. So far I have tried to be there for him and try to feel what he must be thinking and feeling but I guess there comes a time when a person has to walk that walk alone. It's a head on collision and I certainly was not ready for it so I know Bob was not either. So, is the glass half empty or is it half full? Which side of the door are we standing in? 70/30 Is this an all or nothing bet?
If you believe in religion you get a free pass and turn it over to a God to share your burden and let it be taken from your shoulders so you can forget about it.
But… in my heart and in my mind it's not that simple. This earth is powerful in its clutches and for those who remain here and we can't help but feel forsaken. Love I feel is a powerful gift and my only hope is that whatever time Bob and I have together our marriage stays strong and true during this trial and that our love brings a brighter light into who are for each other.
Here's my promise to you, Bob. I will try to not take you for granted after today, and to take time out and enjoy our lives in whatever way possible within our means. I am behind you100% and that you can count on. If you had to bet on anything in your life it would be that I love you with all my heart and soul. I will support you in whatever decision you make when it comes to your health care. It is your life we are talking about but it is your "Quality of Life" I am reminding you about too. Selfish as I might get at times I do want you with me but I also want you to be happy here.
Follow our family blog site:
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- August 23, 2010 at 1:02 am
Deb,
Perfect song. Melanoma is a crap shot. But, you and Bob both have to realize that he is not a statistic but real flesh and blood. You really have no idea no matter what you choose which side of the coin you will end up on. As horrible as this disease has been to me, I have also learned from it. Each day is sweeter, I've made friends I would have never met, and yes I've shed tears over friends I've lost.
After a few months acceptance does get a bit easier. I'm stage IV, had been NED for almost a year this time before my latest recurrance. I'm still planning on a future, we have recently moved over 5 hours from our last house.
By the way, I love your website and your wit will help you through these rough times!!
Linda
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- August 23, 2010 at 1:02 am
Deb,
Perfect song. Melanoma is a crap shot. But, you and Bob both have to realize that he is not a statistic but real flesh and blood. You really have no idea no matter what you choose which side of the coin you will end up on. As horrible as this disease has been to me, I have also learned from it. Each day is sweeter, I've made friends I would have never met, and yes I've shed tears over friends I've lost.
After a few months acceptance does get a bit easier. I'm stage IV, had been NED for almost a year this time before my latest recurrance. I'm still planning on a future, we have recently moved over 5 hours from our last house.
By the way, I love your website and your wit will help you through these rough times!!
Linda
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- August 23, 2010 at 3:33 am
Ihaley,
Thank you for your support. I picked this web site to join because there seemed to be a lot of caring people on board. My husband isn't sure just how to deal with all this information he is learning and I had to find a way to process all I was learning at the same time. There is such a thing as magic in numbers and I could feel it in this place.
Slowly I am exposing Bob to the people in here and their stories so he feels he is not alone. If nothing else most of you are walking in his shoes and that's a place where I can not be. If you read my stories on my family blog site they are personal, they are my side of things but I post them with his blessing. It's a way to share them with our family and friends without the telling over and over and that can get exhausting for anyone.
Bless you, Deb
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- August 23, 2010 at 3:33 am
Ihaley,
Thank you for your support. I picked this web site to join because there seemed to be a lot of caring people on board. My husband isn't sure just how to deal with all this information he is learning and I had to find a way to process all I was learning at the same time. There is such a thing as magic in numbers and I could feel it in this place.
Slowly I am exposing Bob to the people in here and their stories so he feels he is not alone. If nothing else most of you are walking in his shoes and that's a place where I can not be. If you read my stories on my family blog site they are personal, they are my side of things but I post them with his blessing. It's a way to share them with our family and friends without the telling over and over and that can get exhausting for anyone.
Bless you, Deb
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- August 23, 2010 at 4:29 am
Please consider using the "Off Topic" Forum for your needs that are other than medical. You might find some emotional support there, which is what you seem to need as much as medical information. The MPIP Board has been around for a fair length of time, and has been a great source of information and support for many. The Board LAO Hs attracted many relatives of patients – spouses, parents, sons, daughters and others. This community supports loved ones, as well as those of us who are the patients as well.
Yes, we all freak out when first diagnosed, but you should focus on what choices Bob and you have, not just the stats. Statistics will drive you (and your husband) crazy – as well as those of us who know them already. So stop with the numbers already, ok? My 2 cents – do not believe the statistics. You might think you have a 50/50 (or some other number) chance of something happening, but another view is that you either have a 0% or 100% chance (you can't get half of Stage IV, for example).
Live your life and encourge Bob to stay positive, focus on what you can do rather that what you cannot. Learn as much as you can – you will need to become more versed in the nuances of this disease. Some of the information and stats you have seen online elsewhere are helpful, some are not. IMHO this board is most helpful as a venue for patients helping other patients (including loved ones) with information based on ther own experience and research.
If you take the time to read through the posts for the past year or so, you will soon realize that there are many on here who have more issues than do you and Bob. Not to minimize your situation, but before you ask for empathy you might also consider the situations of those from whom you are asking help. Or maybe you are not asking for help, but just want to tell your story. Blogs help with that aspect, and apparently you are using that meduim as well. Again, "Off Topic" may be appropriate for non medical issues, which can very important for many of us as well.
Wishing you the best and be positive. I am Stage IV, with lung metastises, no primary identified, diagnosed 3/15/10.
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- August 23, 2010 at 2:40 pm
Who can use the bulletin board?
The bulletin board was created for patients, caregivers and others touched by melanoma. You are encouraged to voice your opinion, ask questions, and meet the network of people who are being proactive in their desire to find answers about this disease without going it alone.
This issue is direct from the board's web site…
I did not make up the percentages, Bob's doctor gave them to him last Friday and it is apparently what "we" have to work with. Yes, what we do with them is our choice and that is what my post is all about. I am trying to introduce my husband to this group through my postings and you just set me back.
Thank you for not supporting me on this site.
I don't expect you will read anymore of them.
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- August 23, 2010 at 3:53 pm
Deb
I am not a frequent poster to this board but read it daily. I loved your post. I am also a caregiver but it is my son, not my husband. He is also stage 3 but with a more aggressive form of melanoma than others (mucosal,oral). I know there are others on this board that have more serious issues to deal with but i have gotten nothing but support from everyone, even those who have a lot more serious issues.
For me this board is for talking about medical issues as well as emotional concerns that touch as as melanoma patients and loved ones. Please continue to post..it helps me…
Becky
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- August 23, 2010 at 3:53 pm
Deb
I am not a frequent poster to this board but read it daily. I loved your post. I am also a caregiver but it is my son, not my husband. He is also stage 3 but with a more aggressive form of melanoma than others (mucosal,oral). I know there are others on this board that have more serious issues to deal with but i have gotten nothing but support from everyone, even those who have a lot more serious issues.
For me this board is for talking about medical issues as well as emotional concerns that touch as as melanoma patients and loved ones. Please continue to post..it helps me…
Becky
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- August 23, 2010 at 2:40 pm
Who can use the bulletin board?
The bulletin board was created for patients, caregivers and others touched by melanoma. You are encouraged to voice your opinion, ask questions, and meet the network of people who are being proactive in their desire to find answers about this disease without going it alone.
This issue is direct from the board's web site…
I did not make up the percentages, Bob's doctor gave them to him last Friday and it is apparently what "we" have to work with. Yes, what we do with them is our choice and that is what my post is all about. I am trying to introduce my husband to this group through my postings and you just set me back.
Thank you for not supporting me on this site.
I don't expect you will read anymore of them.
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- August 24, 2010 at 4:51 am
Umm..Jim.. I do believe everything she talked about was entirely on topic.
I mean, over on the OTBB, we talk about sweet 16 parties and imaginary superpowers and ..dogs, both hot dogs and labradoodles.
There is hardly a better place on the web to discuss the emotional fallout of a melanoma diagnosis than right here. And that emotional fallout occurs for patients of all stages, and all of their loved ones.
I can only imagine, that you yourself have been experiencing a bit of such fallout, which might go a little ways toward explaining your response.
But the off topic board is hardly the place to discuss how to cope with a diagnosis.
It's more like the place to go to discuss Jimmy Johnson being on the next season of Survivor..
~~dian
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- August 24, 2010 at 4:51 am
Umm..Jim.. I do believe everything she talked about was entirely on topic.
I mean, over on the OTBB, we talk about sweet 16 parties and imaginary superpowers and ..dogs, both hot dogs and labradoodles.
There is hardly a better place on the web to discuss the emotional fallout of a melanoma diagnosis than right here. And that emotional fallout occurs for patients of all stages, and all of their loved ones.
I can only imagine, that you yourself have been experiencing a bit of such fallout, which might go a little ways toward explaining your response.
But the off topic board is hardly the place to discuss how to cope with a diagnosis.
It's more like the place to go to discuss Jimmy Johnson being on the next season of Survivor..
~~dian
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- August 23, 2010 at 4:29 am
Please consider using the "Off Topic" Forum for your needs that are other than medical. You might find some emotional support there, which is what you seem to need as much as medical information. The MPIP Board has been around for a fair length of time, and has been a great source of information and support for many. The Board LAO Hs attracted many relatives of patients – spouses, parents, sons, daughters and others. This community supports loved ones, as well as those of us who are the patients as well.
Yes, we all freak out when first diagnosed, but you should focus on what choices Bob and you have, not just the stats. Statistics will drive you (and your husband) crazy – as well as those of us who know them already. So stop with the numbers already, ok? My 2 cents – do not believe the statistics. You might think you have a 50/50 (or some other number) chance of something happening, but another view is that you either have a 0% or 100% chance (you can't get half of Stage IV, for example).
Live your life and encourge Bob to stay positive, focus on what you can do rather that what you cannot. Learn as much as you can – you will need to become more versed in the nuances of this disease. Some of the information and stats you have seen online elsewhere are helpful, some are not. IMHO this board is most helpful as a venue for patients helping other patients (including loved ones) with information based on ther own experience and research.
If you take the time to read through the posts for the past year or so, you will soon realize that there are many on here who have more issues than do you and Bob. Not to minimize your situation, but before you ask for empathy you might also consider the situations of those from whom you are asking help. Or maybe you are not asking for help, but just want to tell your story. Blogs help with that aspect, and apparently you are using that meduim as well. Again, "Off Topic" may be appropriate for non medical issues, which can very important for many of us as well.
Wishing you the best and be positive. I am Stage IV, with lung metastises, no primary identified, diagnosed 3/15/10.
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- August 23, 2010 at 3:54 pm
Hi Deb and Bob
I fully support your postings and find them most appropriate for this discussion board. I find medical, non medical and pure emotional postings all helpful in the understanding of the disease. Please keep posting and do not look at this small bump in the road as a setback.
To Jim from Denver, I also enjoy your postings. Your reply to Deb just appeared to be a little harsh and I hope you did not mean it to be that way. Maybe I misunderstood the message. I have never used or read the "off topic" section myself. Just living life is time consuming and I do not want to add or overwhelm myself with info.
As it is, my wife is critical of me of the enormous amount of time spent in front of the computer.
I sincerely hope we can all move on and welcome all postings warmly.
thanks
miket or talian44
ps Bob, you have not been forgotten, best of luck and good health
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- August 23, 2010 at 3:54 pm
Hi Deb and Bob
I fully support your postings and find them most appropriate for this discussion board. I find medical, non medical and pure emotional postings all helpful in the understanding of the disease. Please keep posting and do not look at this small bump in the road as a setback.
To Jim from Denver, I also enjoy your postings. Your reply to Deb just appeared to be a little harsh and I hope you did not mean it to be that way. Maybe I misunderstood the message. I have never used or read the "off topic" section myself. Just living life is time consuming and I do not want to add or overwhelm myself with info.
As it is, my wife is critical of me of the enormous amount of time spent in front of the computer.
I sincerely hope we can all move on and welcome all postings warmly.
thanks
miket or talian44
ps Bob, you have not been forgotten, best of luck and good health
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- August 23, 2010 at 3:59 pm
Deb, thank you so much for posting about Bob! My hubby started out as Stage III in 1995 and went to Stage IV in 1999. He has only had surgeries and no additional treatments so far other than the check-ups. Hoping Bob stays Stage III forever and never hears from mel again. It is so hard dealing with melanoma and this board is the best place for finding those who KNOW exactly what you are going through. Hang in there girl.
molly
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- August 23, 2010 at 3:59 pm
Deb, thank you so much for posting about Bob! My hubby started out as Stage III in 1995 and went to Stage IV in 1999. He has only had surgeries and no additional treatments so far other than the check-ups. Hoping Bob stays Stage III forever and never hears from mel again. It is so hard dealing with melanoma and this board is the best place for finding those who KNOW exactly what you are going through. Hang in there girl.
molly
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- August 23, 2010 at 7:37 pm
Melanoma is not a death sentence. It is true that the statistics are not great. Everyone is different though, and there are many many people on this board who have even more advanced mel and are doing quite well. There are many here also who are not doing well, but they are fighting like hell and greatly inspire me.
We all have our own paths to take and they all involved very tough decisions. We understand what you are going through, and I hope that you will find encouragement here to fight your battle. Researchers are on the edge of many breakthrough treatments.
My husband really wanted to enroll in the vaccine trial that you mentioned, but he didn't test positive for the protein so he's pretty much left with no treatment options at this point. We have a 3 year old child and refuse for one minute to let this disease take any more from us than it already has. Every day is a gift. We live each day with joy and gratitude. Of course no one would ever choose to have cancer, but because of cancer we look at life through a different lens than most. It has brought us great friendships, blessings (yes, I said blessings) and taught us to live and love to the fullest.
Blessings & peace to you and Bob. May you both have the wisdom to make the best decisions for yourselves and find support both here and at home. Keep us updated.
Tracy
wife to Bill, stage IIIc
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- August 23, 2010 at 7:37 pm
Melanoma is not a death sentence. It is true that the statistics are not great. Everyone is different though, and there are many many people on this board who have even more advanced mel and are doing quite well. There are many here also who are not doing well, but they are fighting like hell and greatly inspire me.
We all have our own paths to take and they all involved very tough decisions. We understand what you are going through, and I hope that you will find encouragement here to fight your battle. Researchers are on the edge of many breakthrough treatments.
My husband really wanted to enroll in the vaccine trial that you mentioned, but he didn't test positive for the protein so he's pretty much left with no treatment options at this point. We have a 3 year old child and refuse for one minute to let this disease take any more from us than it already has. Every day is a gift. We live each day with joy and gratitude. Of course no one would ever choose to have cancer, but because of cancer we look at life through a different lens than most. It has brought us great friendships, blessings (yes, I said blessings) and taught us to live and love to the fullest.
Blessings & peace to you and Bob. May you both have the wisdom to make the best decisions for yourselves and find support both here and at home. Keep us updated.
Tracy
wife to Bill, stage IIIc
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- August 24, 2010 at 3:00 pm
I would like to thank all of you who have responded to my postings, they are very much a support to Bob and I. I am humbled and overwhelmed. Yes, we are in shock. We can't help ourselves but be overwhelmed by road we find ourselves now traveling. Because we didn't choose it we are struggling to find the right signs for us to follow and everything is confusing even the terms and directives. Some of our fellow travelers are angry, some are hurt, some are sick and some are well as can be expected. Just call me a "Newby" and my husband and I will learn in time how to "wear" this badge of melanoma with a bit of hardness some seem to have…
I am a graphic designer and have a creative streak. If I write a bit creatively or with heart it is my nature, I can't help myself. Maybe someday I will be able to paint my feelings about Bob and melonma on canvas, then I will have mastered it on my terms. For now all my energy goes to learning all I can to help Bob about this subject and how we are going to live with the enemy.
Thank you again,
Deb
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- August 24, 2010 at 3:00 pm
I would like to thank all of you who have responded to my postings, they are very much a support to Bob and I. I am humbled and overwhelmed. Yes, we are in shock. We can't help ourselves but be overwhelmed by road we find ourselves now traveling. Because we didn't choose it we are struggling to find the right signs for us to follow and everything is confusing even the terms and directives. Some of our fellow travelers are angry, some are hurt, some are sick and some are well as can be expected. Just call me a "Newby" and my husband and I will learn in time how to "wear" this badge of melanoma with a bit of hardness some seem to have…
I am a graphic designer and have a creative streak. If I write a bit creatively or with heart it is my nature, I can't help myself. Maybe someday I will be able to paint my feelings about Bob and melonma on canvas, then I will have mastered it on my terms. For now all my energy goes to learning all I can to help Bob about this subject and how we are going to live with the enemy.
Thank you again,
Deb
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- August 24, 2010 at 3:48 pm
I would definitely choose the vaccine treatment, the interferon thing can be pretty miserable, and I definitely feel that combined with immunotherapy will help you much more than interferon. Interferon can extend time between recurrences, while a vaccine would more likely prime his immune system for the future, if a recurrence ever does occur. What stage 3 is he? if it is minor, then his particular melanoma obviously has low metastatic potential(with a primary 2-3 inches thick Statistics are from the past as well. When I was first diagnosed with a brain met, the stats were 3%that I would be here in 4 years. That was in 2006, and I have been NED for more than 2 years (I think). Either treatments have improved, or I am extremely lucky. Lucky for me, I have a wife with the same attitude as you, and I love her more and more every day.
God Bless and don't feel like handing things over to God is a bad thing. It was an enormous source of strength for me, and my wife. It takes more than just 2 people to beat melanoma, go to work,pay the bills, and keep a marriage together sometimes.
Enjoy each other and live for today. Hope for the best, and prepare for the worst.
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- August 24, 2010 at 3:48 pm
I would definitely choose the vaccine treatment, the interferon thing can be pretty miserable, and I definitely feel that combined with immunotherapy will help you much more than interferon. Interferon can extend time between recurrences, while a vaccine would more likely prime his immune system for the future, if a recurrence ever does occur. What stage 3 is he? if it is minor, then his particular melanoma obviously has low metastatic potential(with a primary 2-3 inches thick Statistics are from the past as well. When I was first diagnosed with a brain met, the stats were 3%that I would be here in 4 years. That was in 2006, and I have been NED for more than 2 years (I think). Either treatments have improved, or I am extremely lucky. Lucky for me, I have a wife with the same attitude as you, and I love her more and more every day.
God Bless and don't feel like handing things over to God is a bad thing. It was an enormous source of strength for me, and my wife. It takes more than just 2 people to beat melanoma, go to work,pay the bills, and keep a marriage together sometimes.
Enjoy each other and live for today. Hope for the best, and prepare for the worst.
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- August 25, 2010 at 4:12 am
Jag,
Thanks for responding, yes… hoping for the best and preparing for the worst seems like a good plan to me. We have much to consider as 3 daughters are watching and waiting right along with us.
The vaccine trial offered to Bob… is 2 people get the vaccine and 1 gets the placebo. The frustration is that it is a 2 year commitment – we can only hope he gets some kind of treatment. If nothing else he will be getting tested more than normal.
Can you tell me the difference between immunotherapy and interferon? I thought it was the same thing? Interleukin-2 would not be offered to Bob unless it went into an organ or so Bob's doctor told him, which if that happened it would place him into stage IV.
Bob holds a full time job, running a truck shop and does not think he can do his job if he uses interferon for a year feeling sick. Not knowing how the company will react to his health (yes they know) this is a new area of worry let alone treatment worries (if he uses interferon) and it effects with his job if you know what I mean.
For now?
Second opinion… and decisions to make.
Thanks again,
Deb
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- August 25, 2010 at 1:07 pm
Actually, interferon is immunotherapy, the immunotherapy I was thinking of is the type they use for stage IV patients. (biochemotherapy, interleukin 2, ipilimumab etc. As for the trial, I doubt they would make him commit for 2 years if he were to progress. That said, the whole placebo thing would make it less attractive to me. Is it the oncovex trial?
If not, this is the one I would choose.
http://www.clinicaltrials.gov/ct2/show/NCT00769704?term=melanoma+oncovex&rank=1
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- August 25, 2010 at 1:07 pm
Actually, interferon is immunotherapy, the immunotherapy I was thinking of is the type they use for stage IV patients. (biochemotherapy, interleukin 2, ipilimumab etc. As for the trial, I doubt they would make him commit for 2 years if he were to progress. That said, the whole placebo thing would make it less attractive to me. Is it the oncovex trial?
If not, this is the one I would choose.
http://www.clinicaltrials.gov/ct2/show/NCT00769704?term=melanoma+oncovex&rank=1
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- August 25, 2010 at 6:26 pm
Deb
We also had your situation and decision making!! My husband was diagnosed with melanoma in Feb. 2010 and is considered Stage III (although he had muscosal, which is considered very aggressive) and we had to decide on the wait and see approach or we were offered interferon. My husband went with interferon and did the high dose month with few problems (worked thru the entire month). He is just finishing up his third month of self-injections and is doing well. Some people handle interferon better than others and we know we have been lucky in this area. He is very tired and sleeps whenever he isn't working, playing with our kids, or cutting wood. He has generally been able to live a very normal life, with the fatique his new reality. The way we figured it, he can stop interferon anytime he feels that its too much for him to handle with his other priorities. So Far, so GOOD!! We just hope and pray his immune system is getting the needed boost.
The initial first few months after diagnosis are very difficult and the decision making is tough, just go with your heart and mind and don't let others push you and your husband in any direction that doesn't feel right for Bob. We pray for everyone fighting this disease and whatever course they take, we wish them well. Valerie (Phil's Wife)
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- August 25, 2010 at 6:26 pm
Deb
We also had your situation and decision making!! My husband was diagnosed with melanoma in Feb. 2010 and is considered Stage III (although he had muscosal, which is considered very aggressive) and we had to decide on the wait and see approach or we were offered interferon. My husband went with interferon and did the high dose month with few problems (worked thru the entire month). He is just finishing up his third month of self-injections and is doing well. Some people handle interferon better than others and we know we have been lucky in this area. He is very tired and sleeps whenever he isn't working, playing with our kids, or cutting wood. He has generally been able to live a very normal life, with the fatique his new reality. The way we figured it, he can stop interferon anytime he feels that its too much for him to handle with his other priorities. So Far, so GOOD!! We just hope and pray his immune system is getting the needed boost.
The initial first few months after diagnosis are very difficult and the decision making is tough, just go with your heart and mind and don't let others push you and your husband in any direction that doesn't feel right for Bob. We pray for everyone fighting this disease and whatever course they take, we wish them well. Valerie (Phil's Wife)
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- August 25, 2010 at 11:20 pm
Deb:
I need to apologize for my earlier post to you last week. The next day I realized I should have not said anything, but once in a while my emotions get the better of me with this damn disease. I was having a bad time of it that day, mostly with people who were jumping to conclusions about my situation. As for me, I have been having issues with some people who think I have zero chance and am going to not going to make it. So I reacted badly to the recitation of statistics – becuase I have to. I refuse to be a statistic, and I will fight this with all my energy. So I was all wound up and took it out on you, which was very unfair.
There are many of us here who have been where you are now, both patients and loved ones and each of us has had to figure out their own way forward. Just about anything disease related goes on MPIP, and the early stage stuff is very difficult for many. Best wishes to you and Bob – you will get good information and support here from this amazing group of people who have helped me so much these last months – I owe them an apology too.
Jim in Denver
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- August 25, 2010 at 11:20 pm
Deb:
I need to apologize for my earlier post to you last week. The next day I realized I should have not said anything, but once in a while my emotions get the better of me with this damn disease. I was having a bad time of it that day, mostly with people who were jumping to conclusions about my situation. As for me, I have been having issues with some people who think I have zero chance and am going to not going to make it. So I reacted badly to the recitation of statistics – becuase I have to. I refuse to be a statistic, and I will fight this with all my energy. So I was all wound up and took it out on you, which was very unfair.
There are many of us here who have been where you are now, both patients and loved ones and each of us has had to figure out their own way forward. Just about anything disease related goes on MPIP, and the early stage stuff is very difficult for many. Best wishes to you and Bob – you will get good information and support here from this amazing group of people who have helped me so much these last months – I owe them an apology too.
Jim in Denver
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- August 26, 2010 at 1:48 am
Hi Jim
You are a gentleman.
As far as the people who think you have zero chance, I don't think they understand you too well.
You have many of the pre requisites for a survivor and a NEDder. You have energy and fire in your belly and you express yourself. Please take care of yourself and the best of luck.
miket or talian44
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- August 26, 2010 at 1:48 am
Hi Jim
You are a gentleman.
As far as the people who think you have zero chance, I don't think they understand you too well.
You have many of the pre requisites for a survivor and a NEDder. You have energy and fire in your belly and you express yourself. Please take care of yourself and the best of luck.
miket or talian44
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- August 26, 2010 at 5:01 am
Jim In Denver,
I would like to accept and thank you for your apology, I know it came from a carefully guarded place. From the response I am getting with this post I can only guess everyone has been hit with the same number game, so Bob and I aren't any different really, are we? We are just "babes" in this journey so I am glad you are not going to hold that against us. Yes, we are learning the hard way.
I certainly didn't mean to dash the hopes of the living here, or throw bumps in anyone's road traveling to wellness. Though I certainly saw the look of uncertainty in my husband's eyes last Friday after his meeting with his doctor, and I will apologize myself if I stirred up any feelings of fear in this discussion group. I am also trying to come to grips with the what if's – it's not easy to be objective when my world is collapsing.
The more I can learn about melanoma here in this group and in other groups that I have joined, the more ammunition I can fight with and give back to my husband. He may get tired of my nuisance but it's all I've got to fight back with.
Take care of yourself Jim In Denver,
Deb.
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- August 26, 2010 at 10:16 pm
Hi Deb,
Thanks for the nice words and positive sentiment. It must be tough to be the loved one, and I need to work harder to understand and apprecite where you are coming from. I try to reassure my wife, Jan, and I know she tries hard to keep up a positive facade to help me. I know that these last months have been very difficult for her, but she does not complain. She has been an incredible support, which helps me a lot. We have developed a newfound appreciation for everything we have in life, and try to live each day with gratitude (obviously that doen't happn every day though!). We have had our share of ups and downs over 17 years, but this situation has actually brought us closer together, I think. It has taken months for us to come around to a more positive place, and I hope that happens for you before very long. Feeling that you have a good treatment plan helps tremendously. I can tell that Bob is a very lucky guy to have you as his wife, and I want to wish both of you the strength and energy you will need. Please keep posting about how things are going for both of you.
Best Wishes,
Jim
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- August 26, 2010 at 10:16 pm
Hi Deb,
Thanks for the nice words and positive sentiment. It must be tough to be the loved one, and I need to work harder to understand and apprecite where you are coming from. I try to reassure my wife, Jan, and I know she tries hard to keep up a positive facade to help me. I know that these last months have been very difficult for her, but she does not complain. She has been an incredible support, which helps me a lot. We have developed a newfound appreciation for everything we have in life, and try to live each day with gratitude (obviously that doen't happn every day though!). We have had our share of ups and downs over 17 years, but this situation has actually brought us closer together, I think. It has taken months for us to come around to a more positive place, and I hope that happens for you before very long. Feeling that you have a good treatment plan helps tremendously. I can tell that Bob is a very lucky guy to have you as his wife, and I want to wish both of you the strength and energy you will need. Please keep posting about how things are going for both of you.
Best Wishes,
Jim
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- August 26, 2010 at 5:01 am
Jim In Denver,
I would like to accept and thank you for your apology, I know it came from a carefully guarded place. From the response I am getting with this post I can only guess everyone has been hit with the same number game, so Bob and I aren't any different really, are we? We are just "babes" in this journey so I am glad you are not going to hold that against us. Yes, we are learning the hard way.
I certainly didn't mean to dash the hopes of the living here, or throw bumps in anyone's road traveling to wellness. Though I certainly saw the look of uncertainty in my husband's eyes last Friday after his meeting with his doctor, and I will apologize myself if I stirred up any feelings of fear in this discussion group. I am also trying to come to grips with the what if's – it's not easy to be objective when my world is collapsing.
The more I can learn about melanoma here in this group and in other groups that I have joined, the more ammunition I can fight with and give back to my husband. He may get tired of my nuisance but it's all I've got to fight back with.
Take care of yourself Jim In Denver,
Deb.
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- August 25, 2010 at 4:12 am
Jag,
Thanks for responding, yes… hoping for the best and preparing for the worst seems like a good plan to me. We have much to consider as 3 daughters are watching and waiting right along with us.
The vaccine trial offered to Bob… is 2 people get the vaccine and 1 gets the placebo. The frustration is that it is a 2 year commitment – we can only hope he gets some kind of treatment. If nothing else he will be getting tested more than normal.
Can you tell me the difference between immunotherapy and interferon? I thought it was the same thing? Interleukin-2 would not be offered to Bob unless it went into an organ or so Bob's doctor told him, which if that happened it would place him into stage IV.
Bob holds a full time job, running a truck shop and does not think he can do his job if he uses interferon for a year feeling sick. Not knowing how the company will react to his health (yes they know) this is a new area of worry let alone treatment worries (if he uses interferon) and it effects with his job if you know what I mean.
For now?
Second opinion… and decisions to make.
Thanks again,
Deb
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- August 28, 2010 at 2:17 pm
Hi Deb,
A very heartfelt post. I'm stage 3C and was faced with interferon, Ipi or doing nothing. I chose Ipi but at the time my heart wrenched thinking what is the best choice.
I wanted to add to someone else's post that turning things over to God is a good and powerful thing to do. I don't believe in religion. I believe Jesus Christ is my Lord and Savior. I, as a Christian, never believe I get a free pass. This cancer journey an be just as difficult, lonely, ugly and whatever feelings that come to mind for everyone. I've been there. When I give things over to God I admit he's in control. I could never and would never want to forget about the cancer. It is part of my journey and I have grown from it. I also want to remain vigilant to fight cancer with the food I eat, exercise, etc. To forget about it would mean going backward in my life and do the same things which helped to give me cancer. God guides me in all of this.
I just wanted to give my perspective. I pray for your upcoming decisions, that Bob is a responder to treatment and for many wonderful years together.
God Bless,
Jim M.
Stage 3C
NED 2years 10 months
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- August 28, 2010 at 2:17 pm
Hi Deb,
A very heartfelt post. I'm stage 3C and was faced with interferon, Ipi or doing nothing. I chose Ipi but at the time my heart wrenched thinking what is the best choice.
I wanted to add to someone else's post that turning things over to God is a good and powerful thing to do. I don't believe in religion. I believe Jesus Christ is my Lord and Savior. I, as a Christian, never believe I get a free pass. This cancer journey an be just as difficult, lonely, ugly and whatever feelings that come to mind for everyone. I've been there. When I give things over to God I admit he's in control. I could never and would never want to forget about the cancer. It is part of my journey and I have grown from it. I also want to remain vigilant to fight cancer with the food I eat, exercise, etc. To forget about it would mean going backward in my life and do the same things which helped to give me cancer. God guides me in all of this.
I just wanted to give my perspective. I pray for your upcoming decisions, that Bob is a responder to treatment and for many wonderful years together.
God Bless,
Jim M.
Stage 3C
NED 2years 10 months
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