› Forums › General Melanoma Community › Sometimes Things Just Don’t Alwyas Work Out
- This topic has 21 replies, 7 voices, and was last updated 11 years, 7 months ago by Charlie S.
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- May 14, 2013 at 2:30 am
Charlie-Glad I have you to remind me if that. You’re awesome!
Josh
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- May 16, 2013 at 12:04 am
That would be Mister A-Hole to you if you don't mind.
Rather than your knee jerk reaction, maybe it would be worth thinking that many times the first treatment option does not work out (as is often the case), the first trial option does not always work out (which is often the case) …………on and on and on.
The point is, with melanoma, things do NOT always work out as expected……….which is why each of us must keep pushing forward and trying. With melanoma, it is not a point of failure when any one approach does not work out; yet we must all keep working the problem……………even when things don't always work out.
Get it?
Cheers,
Charlie S
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- May 16, 2013 at 12:04 am
That would be Mister A-Hole to you if you don't mind.
Rather than your knee jerk reaction, maybe it would be worth thinking that many times the first treatment option does not work out (as is often the case), the first trial option does not always work out (which is often the case) …………on and on and on.
The point is, with melanoma, things do NOT always work out as expected……….which is why each of us must keep pushing forward and trying. With melanoma, it is not a point of failure when any one approach does not work out; yet we must all keep working the problem……………even when things don't always work out.
Get it?
Cheers,
Charlie S
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- May 16, 2013 at 12:04 am
That would be Mister A-Hole to you if you don't mind.
Rather than your knee jerk reaction, maybe it would be worth thinking that many times the first treatment option does not work out (as is often the case), the first trial option does not always work out (which is often the case) …………on and on and on.
The point is, with melanoma, things do NOT always work out as expected……….which is why each of us must keep pushing forward and trying. With melanoma, it is not a point of failure when any one approach does not work out; yet we must all keep working the problem……………even when things don't always work out.
Get it?
Cheers,
Charlie S
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- May 14, 2013 at 10:11 am
Since you have been around so long, let me ask you – if someone starts
with an extremely high tumor load (both lungs, liver, brain, abdomen, spine) can
he realistically expect to be one of the lucky ones? My husband has
the best attitude and I can tell you he really believes he will respond
to treatment and survive. I know this man and I know he isn't "putting
on a front" etc. He had WBR and 2 spine tumors zapped SRS, and is now
responding to Zelboraf (only 4 weeks, but nodes are shrinking and blood
work is improving). When and if stable, Doc is looking for Anti PD1 trial.
I his wife, who love him more than words can express, try to be hopeful
but am more of a realist. I know you will give it to me straight
Charlie, so any comments?? Thanks. He is 58 and was otherwise
the healthiest person I know.
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- May 14, 2013 at 12:04 pm
Vicki, I'm sure you know the answer to your question. Is it possible that your husband will survive long-term, maybe forever? Yes, of course. There are people who pull through against seemingly impossible odds. And with new treatments being developed all the time, the odds for all of us are slowly getting better. Your husband will definitely survive longer and have a better quality of life with today's treatments than he would have 2 or 3 years ago.
But the more important question is, "What will you do with the extra time you do get?"
When my brother was first diagnosed, he was already stage IV with widely disseminated tumors including brain mets. He was given 2-3 months to live and told to contact hospice. Boy! Was THAT a kick in the stomach! But with WBR, SRS, and Zelboraf he actually did quite well for many months. The problem (in my opinion) was that he put his life on "hold" until he was all cured. He did not attempt to work. He refused to go to his old social haunts or allow friends to come visit him because he didn't feel like summoning up the energy. He refused to eat right and exercise to keep his strength up and boost his immune system. He just waited for the pills to work. He just sat around the house watching television and waiting for the tumors to be gone and for him to get his old energy back. Then one day he learned that his melanoma had become resistant to Zelboraf and that was the beginning of the end.
So whether your husband responds for 6 months or 6 years, my advice would be to make the most of every day. Plan to take a nice vacation– if when the time comes to go on the vacation he is not feeling up to it, so be it. Cancel your plans and lose the money and don't regret it. But don't put off making vacation plans until he's "cured" or until after the next set of scans or until until he doesn't have to deal with uncomfortable side effects any more. Same with everything else– encourage him to get out and do everything and anything either of you wants to do. Don't wait. If he ends up being a long-term survivor, what a heck of a fun life you will have! And if he doesn't end up being a long-term survivor, you will have made the most of your time together and you will have no regrets on that score.
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- May 14, 2013 at 12:04 pm
Vicki, I'm sure you know the answer to your question. Is it possible that your husband will survive long-term, maybe forever? Yes, of course. There are people who pull through against seemingly impossible odds. And with new treatments being developed all the time, the odds for all of us are slowly getting better. Your husband will definitely survive longer and have a better quality of life with today's treatments than he would have 2 or 3 years ago.
But the more important question is, "What will you do with the extra time you do get?"
When my brother was first diagnosed, he was already stage IV with widely disseminated tumors including brain mets. He was given 2-3 months to live and told to contact hospice. Boy! Was THAT a kick in the stomach! But with WBR, SRS, and Zelboraf he actually did quite well for many months. The problem (in my opinion) was that he put his life on "hold" until he was all cured. He did not attempt to work. He refused to go to his old social haunts or allow friends to come visit him because he didn't feel like summoning up the energy. He refused to eat right and exercise to keep his strength up and boost his immune system. He just waited for the pills to work. He just sat around the house watching television and waiting for the tumors to be gone and for him to get his old energy back. Then one day he learned that his melanoma had become resistant to Zelboraf and that was the beginning of the end.
So whether your husband responds for 6 months or 6 years, my advice would be to make the most of every day. Plan to take a nice vacation– if when the time comes to go on the vacation he is not feeling up to it, so be it. Cancel your plans and lose the money and don't regret it. But don't put off making vacation plans until he's "cured" or until after the next set of scans or until until he doesn't have to deal with uncomfortable side effects any more. Same with everything else– encourage him to get out and do everything and anything either of you wants to do. Don't wait. If he ends up being a long-term survivor, what a heck of a fun life you will have! And if he doesn't end up being a long-term survivor, you will have made the most of your time together and you will have no regrets on that score.
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- May 14, 2013 at 12:04 pm
Vicki, I'm sure you know the answer to your question. Is it possible that your husband will survive long-term, maybe forever? Yes, of course. There are people who pull through against seemingly impossible odds. And with new treatments being developed all the time, the odds for all of us are slowly getting better. Your husband will definitely survive longer and have a better quality of life with today's treatments than he would have 2 or 3 years ago.
But the more important question is, "What will you do with the extra time you do get?"
When my brother was first diagnosed, he was already stage IV with widely disseminated tumors including brain mets. He was given 2-3 months to live and told to contact hospice. Boy! Was THAT a kick in the stomach! But with WBR, SRS, and Zelboraf he actually did quite well for many months. The problem (in my opinion) was that he put his life on "hold" until he was all cured. He did not attempt to work. He refused to go to his old social haunts or allow friends to come visit him because he didn't feel like summoning up the energy. He refused to eat right and exercise to keep his strength up and boost his immune system. He just waited for the pills to work. He just sat around the house watching television and waiting for the tumors to be gone and for him to get his old energy back. Then one day he learned that his melanoma had become resistant to Zelboraf and that was the beginning of the end.
So whether your husband responds for 6 months or 6 years, my advice would be to make the most of every day. Plan to take a nice vacation– if when the time comes to go on the vacation he is not feeling up to it, so be it. Cancel your plans and lose the money and don't regret it. But don't put off making vacation plans until he's "cured" or until after the next set of scans or until until he doesn't have to deal with uncomfortable side effects any more. Same with everything else– encourage him to get out and do everything and anything either of you wants to do. Don't wait. If he ends up being a long-term survivor, what a heck of a fun life you will have! And if he doesn't end up being a long-term survivor, you will have made the most of your time together and you will have no regrets on that score.
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- May 14, 2013 at 10:11 am
Since you have been around so long, let me ask you – if someone starts
with an extremely high tumor load (both lungs, liver, brain, abdomen, spine) can
he realistically expect to be one of the lucky ones? My husband has
the best attitude and I can tell you he really believes he will respond
to treatment and survive. I know this man and I know he isn't "putting
on a front" etc. He had WBR and 2 spine tumors zapped SRS, and is now
responding to Zelboraf (only 4 weeks, but nodes are shrinking and blood
work is improving). When and if stable, Doc is looking for Anti PD1 trial.
I his wife, who love him more than words can express, try to be hopeful
but am more of a realist. I know you will give it to me straight
Charlie, so any comments?? Thanks. He is 58 and was otherwise
the healthiest person I know.
-
- May 14, 2013 at 10:11 am
Since you have been around so long, let me ask you – if someone starts
with an extremely high tumor load (both lungs, liver, brain, abdomen, spine) can
he realistically expect to be one of the lucky ones? My husband has
the best attitude and I can tell you he really believes he will respond
to treatment and survive. I know this man and I know he isn't "putting
on a front" etc. He had WBR and 2 spine tumors zapped SRS, and is now
responding to Zelboraf (only 4 weeks, but nodes are shrinking and blood
work is improving). When and if stable, Doc is looking for Anti PD1 trial.
I his wife, who love him more than words can express, try to be hopeful
but am more of a realist. I know you will give it to me straight
Charlie, so any comments?? Thanks. He is 58 and was otherwise
the healthiest person I know.
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