› Forums › General Melanoma Community › Comfort
- This topic has 27 replies, 8 voices, and was last updated 10 years, 11 months ago by
Lori C.
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- May 21, 2013 at 2:42 pm
I come to this page daily looking to see how everyone is. Looking for new treatment ideas and to find comfort and friends. I havent been able to do that or find many friends so Im signing off. I pray for the few I have gotten to know and pray for miracles in your lives. May God bless you.To those that has been concerned Lynn has umdergone five gamma knife surgeries for 32 mets which are dead and dying. He has 7 new omes which means no clinical trial for us. He has umdergone, yervoy, zelobraf, abaraxene, and know temador which we all know to be pretty use. Hes very weak sleeps alot and im pretty sure when we go tomo they will put him on hospice. He says hes not given in and wamts to live but thetes just no treatments.
Belva loving wife to my warrior Lynn
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- May 21, 2013 at 3:09 pm
Belva, I am so sorry that you and Lynn are going thru this very difficult time. Many people read these posts and just because they don’t comment, doesn’t mean they don’t care or feel your pain at this time. Many lives are changed forever by melanoma and the one thing I have learned is that all the warriors and their caregivers who read this forum, can truly understand what we all go thru, it’s a very tough struggle. I wish they could offer your husband more treatment. Maybe the temodar can stabilize his brain mets and you can try anti PD1 trial. Maybe it’s time for hospice, and you just have to accept that his time is near, and they can make him comfort. I don’t know what the future holds, but I do know I pray every night for all those affected by melanoma, and I will hold Lynn in my prayers tonight, that he is comfortable, without pain, and feels peace! Take good care of yourself, we are here for you! God Bless, Valerie (Phil’s wife) -
- May 21, 2013 at 3:09 pm
Belva, I am so sorry that you and Lynn are going thru this very difficult time. Many people read these posts and just because they don’t comment, doesn’t mean they don’t care or feel your pain at this time. Many lives are changed forever by melanoma and the one thing I have learned is that all the warriors and their caregivers who read this forum, can truly understand what we all go thru, it’s a very tough struggle. I wish they could offer your husband more treatment. Maybe the temodar can stabilize his brain mets and you can try anti PD1 trial. Maybe it’s time for hospice, and you just have to accept that his time is near, and they can make him comfort. I don’t know what the future holds, but I do know I pray every night for all those affected by melanoma, and I will hold Lynn in my prayers tonight, that he is comfortable, without pain, and feels peace! Take good care of yourself, we are here for you! God Bless, Valerie (Phil’s wife) -
- May 21, 2013 at 3:09 pm
Belva, I am so sorry that you and Lynn are going thru this very difficult time. Many people read these posts and just because they don’t comment, doesn’t mean they don’t care or feel your pain at this time. Many lives are changed forever by melanoma and the one thing I have learned is that all the warriors and their caregivers who read this forum, can truly understand what we all go thru, it’s a very tough struggle. I wish they could offer your husband more treatment. Maybe the temodar can stabilize his brain mets and you can try anti PD1 trial. Maybe it’s time for hospice, and you just have to accept that his time is near, and they can make him comfort. I don’t know what the future holds, but I do know I pray every night for all those affected by melanoma, and I will hold Lynn in my prayers tonight, that he is comfortable, without pain, and feels peace! Take good care of yourself, we are here for you! God Bless, Valerie (Phil’s wife) -
- May 21, 2013 at 3:19 pm
Belva, I am so sorry you are going through this. I think sometimes people don't know what to say….At least that is what I have decided. I lost my Jim 2 years 5 1/2 months ago. It has been a terrible loss. And sometimes the people you think that will be there for you are not…..it is a hard blow when you are scared and hurting so bad. I would be happy to talk to your private via facebook or e-mail. You can find my profile under Sherron….It has Jim's story. And I become friends with people this way…It is more personal than the board and you know what you say, goes no further. My prayers are with you…Sending hugs and prayers.
Take Care,
Sherron, wife to Jim FOREVER
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- May 21, 2013 at 3:19 pm
Belva, I am so sorry you are going through this. I think sometimes people don't know what to say….At least that is what I have decided. I lost my Jim 2 years 5 1/2 months ago. It has been a terrible loss. And sometimes the people you think that will be there for you are not…..it is a hard blow when you are scared and hurting so bad. I would be happy to talk to your private via facebook or e-mail. You can find my profile under Sherron….It has Jim's story. And I become friends with people this way…It is more personal than the board and you know what you say, goes no further. My prayers are with you…Sending hugs and prayers.
Take Care,
Sherron, wife to Jim FOREVER
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- May 21, 2013 at 3:19 pm
Belva, I am so sorry you are going through this. I think sometimes people don't know what to say….At least that is what I have decided. I lost my Jim 2 years 5 1/2 months ago. It has been a terrible loss. And sometimes the people you think that will be there for you are not…..it is a hard blow when you are scared and hurting so bad. I would be happy to talk to your private via facebook or e-mail. You can find my profile under Sherron….It has Jim's story. And I become friends with people this way…It is more personal than the board and you know what you say, goes no further. My prayers are with you…Sending hugs and prayers.
Take Care,
Sherron, wife to Jim FOREVER
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- May 21, 2013 at 3:20 pm
Belva, I am so sorry you are going through this. I think sometimes people don't know what to say….At least that is what I have decided. I lost my Jim 2 years 5 1/2 months ago. It has been a terrible loss. And sometimes the people you think that will be there for you are not…..it is a hard blow when you are scared and hurting so bad. I would be happy to talk to your private via facebook or e-mail. You can find my profile under Sherron….It has Jim's story. And I become friends with people this way…It is more personal than the board and you know what you say, goes no further. My prayers are with you…Sending hugs and prayers.
Take Care,
Sherron, wife to Jim FOREVER
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- May 21, 2013 at 3:20 pm
Belva, I am so sorry you are going through this. I think sometimes people don't know what to say….At least that is what I have decided. I lost my Jim 2 years 5 1/2 months ago. It has been a terrible loss. And sometimes the people you think that will be there for you are not…..it is a hard blow when you are scared and hurting so bad. I would be happy to talk to your private via facebook or e-mail. You can find my profile under Sherron….It has Jim's story. And I become friends with people this way…It is more personal than the board and you know what you say, goes no further. My prayers are with you…Sending hugs and prayers.
Take Care,
Sherron, wife to Jim FOREVER
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- May 21, 2013 at 3:20 pm
Belva, I am so sorry you are going through this. I think sometimes people don't know what to say….At least that is what I have decided. I lost my Jim 2 years 5 1/2 months ago. It has been a terrible loss. And sometimes the people you think that will be there for you are not…..it is a hard blow when you are scared and hurting so bad. I would be happy to talk to your private via facebook or e-mail. You can find my profile under Sherron….It has Jim's story. And I become friends with people this way…It is more personal than the board and you know what you say, goes no further. My prayers are with you…Sending hugs and prayers.
Take Care,
Sherron, wife to Jim FOREVER
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- May 21, 2013 at 4:24 pm
We care. We really do. I have had Stage IV melanoma since 2009, and frankly, I think I am dealing some major psychological issues from going through so much. sometimes I don't respond like I should to others' needs. Sad, but true. Please stay on.
Terri
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- May 21, 2013 at 4:24 pm
We care. We really do. I have had Stage IV melanoma since 2009, and frankly, I think I am dealing some major psychological issues from going through so much. sometimes I don't respond like I should to others' needs. Sad, but true. Please stay on.
Terri
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- May 21, 2013 at 4:24 pm
We care. We really do. I have had Stage IV melanoma since 2009, and frankly, I think I am dealing some major psychological issues from going through so much. sometimes I don't respond like I should to others' needs. Sad, but true. Please stay on.
Terri
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- May 22, 2013 at 1:51 am
Belva – as always keeping you. Lynn, and the other warriors in my prayers. Many times people don't respond unless they have an answer to a question raised. I'm convinced that every post is read and gets a reaction – most of the time, though people just don't type it out. If only we could simply feel the caring coming from the group. Fen
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- May 22, 2013 at 1:51 am
Belva – as always keeping you. Lynn, and the other warriors in my prayers. Many times people don't respond unless they have an answer to a question raised. I'm convinced that every post is read and gets a reaction – most of the time, though people just don't type it out. If only we could simply feel the caring coming from the group. Fen
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- May 22, 2013 at 2:14 am
Belva, it is a very difficult time seeing someone you love go through this. I watched my father go through this too. People on this board do care about you, if you haven't received enough support from others on the board it will be more about circumstances than people not caring.
Unfortunately sleeping a lot is a sign that Lynn's body is shutting down and there are no words that can really comfort you other than to say that we are thinking of you. My dad had over 50 brain mets as well as numerous mets through his body. He also did not want to give up, so all I can say is as long as Lynn wants to fight, don't you give up . Some people need to fight till the end, that's how they cope with what's ahead. Try to stay strong..
Love Nahmi
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- May 22, 2013 at 2:14 am
Belva, it is a very difficult time seeing someone you love go through this. I watched my father go through this too. People on this board do care about you, if you haven't received enough support from others on the board it will be more about circumstances than people not caring.
Unfortunately sleeping a lot is a sign that Lynn's body is shutting down and there are no words that can really comfort you other than to say that we are thinking of you. My dad had over 50 brain mets as well as numerous mets through his body. He also did not want to give up, so all I can say is as long as Lynn wants to fight, don't you give up . Some people need to fight till the end, that's how they cope with what's ahead. Try to stay strong..
Love Nahmi
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- May 22, 2013 at 2:14 am
Belva, it is a very difficult time seeing someone you love go through this. I watched my father go through this too. People on this board do care about you, if you haven't received enough support from others on the board it will be more about circumstances than people not caring.
Unfortunately sleeping a lot is a sign that Lynn's body is shutting down and there are no words that can really comfort you other than to say that we are thinking of you. My dad had over 50 brain mets as well as numerous mets through his body. He also did not want to give up, so all I can say is as long as Lynn wants to fight, don't you give up . Some people need to fight till the end, that's how they cope with what's ahead. Try to stay strong..
Love Nahmi
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- May 22, 2013 at 1:51 am
Belva – as always keeping you. Lynn, and the other warriors in my prayers. Many times people don't respond unless they have an answer to a question raised. I'm convinced that every post is read and gets a reaction – most of the time, though people just don't type it out. If only we could simply feel the caring coming from the group. Fen
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- May 22, 2013 at 2:15 am
Belva,
I take it that Lynn is a biker. I always liked that biker song Iron Horse.
The situation is as hard as it could be on both of you. It's so scary and frustrating seeing clinical trials that won't accept you. Worrying about whether insurance comparies will pay for Gamma Knife. I hear you saying what he says, that it seems that there's just no treatments, but he wants to keep fighting. He's fought and is fighting really hard.
Wishing you both the best.
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- May 22, 2013 at 2:15 am
Belva,
I take it that Lynn is a biker. I always liked that biker song Iron Horse.
The situation is as hard as it could be on both of you. It's so scary and frustrating seeing clinical trials that won't accept you. Worrying about whether insurance comparies will pay for Gamma Knife. I hear you saying what he says, that it seems that there's just no treatments, but he wants to keep fighting. He's fought and is fighting really hard.
Wishing you both the best.
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- May 22, 2013 at 2:15 am
Belva,
I take it that Lynn is a biker. I always liked that biker song Iron Horse.
The situation is as hard as it could be on both of you. It's so scary and frustrating seeing clinical trials that won't accept you. Worrying about whether insurance comparies will pay for Gamma Knife. I hear you saying what he says, that it seems that there's just no treatments, but he wants to keep fighting. He's fought and is fighting really hard.
Wishing you both the best.
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- May 22, 2013 at 12:08 pm
Bella, when Will was getting carbol/taxol, he responded at first. He did not have brain lesions but had terrible liver involvement, bone mets, spleen, and lung. I thought he was going to improve on the carbol/taxol and kept fighting to get him ipi (this was just before it was FDA approved), with no success, and no clinical trials would take him until he was better.
We kept fighting, as he wanted to fight. I wanted to fight. But the toxicity of the chemo and the compromised state of his liver were lethal. People here were as helpful as they could be. But I didn't want to hear the unspoken: there were limited options in some cases, and the outcome might not be what I hoped for. And maybe it was better for them not to say anything than say that, because I didn't have the energy to deal with it.
Will was only on hospice 12 hours. That's how long we waited to make that decision and for what it's worth, that was a right choice for us. He wanted to fight, we kept fighting and that was how he lived his life. I have read your posts and refrained from commenting because I don't know what can help you achieve the outcome you want. But I am thinking of you, and include you in my prayers (hope that is okay). I will always be willing to talk to you or anyone else going through this.
Lori, caregiver to Will
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- May 22, 2013 at 12:08 pm
Bella, when Will was getting carbol/taxol, he responded at first. He did not have brain lesions but had terrible liver involvement, bone mets, spleen, and lung. I thought he was going to improve on the carbol/taxol and kept fighting to get him ipi (this was just before it was FDA approved), with no success, and no clinical trials would take him until he was better.
We kept fighting, as he wanted to fight. I wanted to fight. But the toxicity of the chemo and the compromised state of his liver were lethal. People here were as helpful as they could be. But I didn't want to hear the unspoken: there were limited options in some cases, and the outcome might not be what I hoped for. And maybe it was better for them not to say anything than say that, because I didn't have the energy to deal with it.
Will was only on hospice 12 hours. That's how long we waited to make that decision and for what it's worth, that was a right choice for us. He wanted to fight, we kept fighting and that was how he lived his life. I have read your posts and refrained from commenting because I don't know what can help you achieve the outcome you want. But I am thinking of you, and include you in my prayers (hope that is okay). I will always be willing to talk to you or anyone else going through this.
Lori, caregiver to Will
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- May 22, 2013 at 12:08 pm
Bella, when Will was getting carbol/taxol, he responded at first. He did not have brain lesions but had terrible liver involvement, bone mets, spleen, and lung. I thought he was going to improve on the carbol/taxol and kept fighting to get him ipi (this was just before it was FDA approved), with no success, and no clinical trials would take him until he was better.
We kept fighting, as he wanted to fight. I wanted to fight. But the toxicity of the chemo and the compromised state of his liver were lethal. People here were as helpful as they could be. But I didn't want to hear the unspoken: there were limited options in some cases, and the outcome might not be what I hoped for. And maybe it was better for them not to say anything than say that, because I didn't have the energy to deal with it.
Will was only on hospice 12 hours. That's how long we waited to make that decision and for what it's worth, that was a right choice for us. He wanted to fight, we kept fighting and that was how he lived his life. I have read your posts and refrained from commenting because I don't know what can help you achieve the outcome you want. But I am thinking of you, and include you in my prayers (hope that is okay). I will always be willing to talk to you or anyone else going through this.
Lori, caregiver to Will
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