› Forums › General Melanoma Community › Decisions are so hard…
- This topic has 27 replies, 7 voices, and was last updated 7 years, 12 months ago by
Rita and Charles.
- Post
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- May 9, 2016 at 2:40 am
So new scan results, the BRAF/MEK combo is stil working – right tumor shrunk, no new organs affected, left lung mass showing in last PET scan not showing as significant on latest CT, lymph nodes affected still show uptake but no new change……So stable, stay the course. BUT, the last months in particular the Tafinlar/MEK has affected Charles even more – more nausea, more tatique, a terrible quality of life – always in pain. But stabel right?
I am going to take a leave from work, Charles is at home and sick each day, sick for the last 9 months….we need a break, a chance to grab a few happy months. So we spoke with oncologist, of course not happy at the thought of stopping treatment…..we tried to lower dose, but still Charles is sick from it…lost 11 more pounds from the end of March to our May appointment. We went to the islands in April, Charles so sick – he stopped meds after 3 days then spent 6 days enjoying family more.
So we return home, timing is weird as we have to move…….so dream of running away to the islands for 6 months….go off meds, do bucket list. But of course, no decison is easy…….without meds, will the melanoma monster explode, we come back and then go back to Braf/mek to shrink and then onto immunotherapy? Is 6 months of happiness worth the risk? We make a decision and then frighten ourselves it's the wrong one.
If we stay here, go right to immunotherapy……..no guarantee that will work, side effects, etc…..they grow and then we hope it kicks in.
I hate to bring this topic up as i see so many warriors, go from one thing to the next then the next….and we have only been at this a year. But we are exhausted……..do a few bucket lists knowing the costs may be great? or stay the course, just switch up the therapy……
Where we are going, treatment would not be available………we are sure, we are not sure…….are we insane? Will we look back 3 years from now and ask how could we have done this? or in 3 years, could he be worse, and we ask ourselves why in God's name didn't we grab a small window of time to just escape and be happy – then get back on the merry go round.
I don't expect any magic answer………..has anyone out there stopped, gotten off the merry go round, then jumped back on…
Confused, scared…..how do you ever know what the right choice is in this shell game of tumors and lymph nodes, just waiting to kill you.
Rita
- Replies
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- May 9, 2016 at 2:35 pm
Rita,
I understand your pain as I'm a caregiver to my husband as well. I don't care how long he has had melanoma, it takes a heavy toll on both of you. Both of you have the right to chose whatever treatment or no treatment to have. Quality of life is very important!!! Have you seen other melanoma specialists to see if there are other options that wouldn't make your husband so sick? Please know my thoughts and prayers are with both of you!!
Maureen
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- May 9, 2016 at 2:35 pm
Rita,
I understand your pain as I'm a caregiver to my husband as well. I don't care how long he has had melanoma, it takes a heavy toll on both of you. Both of you have the right to chose whatever treatment or no treatment to have. Quality of life is very important!!! Have you seen other melanoma specialists to see if there are other options that wouldn't make your husband so sick? Please know my thoughts and prayers are with both of you!!
Maureen
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- May 9, 2016 at 9:40 pm
Rita,
I understand your pain and frustration as I have been fighting the battle for 2 1/2 years. I very strongly agree with the suggestion to talk to melanoma specialists. The melanoma specialists who are deeply involved in research, and are praciticing at centers of excellence, are likely to make all the difference for you. There are several other treatments available now.
In Southern California, there is Dr. Ribas at UCLA and Dr. Hamid at the Angeles Clinic. Hopefully, your insurance would permit second opinions.
Although I live in Southern California, I eventually found the care I needed at Memorial Sloane Kettering and I am now NED.
I'm not sure if the forum permits it, but I would be glad to email or speak with you privately to answer questions or share the experience about making the transition to a center of excellence.
My thoughts and prayers are with you…..
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- May 9, 2016 at 9:40 pm
Rita,
I understand your pain and frustration as I have been fighting the battle for 2 1/2 years. I very strongly agree with the suggestion to talk to melanoma specialists. The melanoma specialists who are deeply involved in research, and are praciticing at centers of excellence, are likely to make all the difference for you. There are several other treatments available now.
In Southern California, there is Dr. Ribas at UCLA and Dr. Hamid at the Angeles Clinic. Hopefully, your insurance would permit second opinions.
Although I live in Southern California, I eventually found the care I needed at Memorial Sloane Kettering and I am now NED.
I'm not sure if the forum permits it, but I would be glad to email or speak with you privately to answer questions or share the experience about making the transition to a center of excellence.
My thoughts and prayers are with you…..
-
- May 9, 2016 at 9:40 pm
Rita,
I understand your pain and frustration as I have been fighting the battle for 2 1/2 years. I very strongly agree with the suggestion to talk to melanoma specialists. The melanoma specialists who are deeply involved in research, and are praciticing at centers of excellence, are likely to make all the difference for you. There are several other treatments available now.
In Southern California, there is Dr. Ribas at UCLA and Dr. Hamid at the Angeles Clinic. Hopefully, your insurance would permit second opinions.
Although I live in Southern California, I eventually found the care I needed at Memorial Sloane Kettering and I am now NED.
I'm not sure if the forum permits it, but I would be glad to email or speak with you privately to answer questions or share the experience about making the transition to a center of excellence.
My thoughts and prayers are with you…..
-
- May 9, 2016 at 2:35 pm
Rita,
I understand your pain as I'm a caregiver to my husband as well. I don't care how long he has had melanoma, it takes a heavy toll on both of you. Both of you have the right to chose whatever treatment or no treatment to have. Quality of life is very important!!! Have you seen other melanoma specialists to see if there are other options that wouldn't make your husband so sick? Please know my thoughts and prayers are with both of you!!
Maureen
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- May 9, 2016 at 11:37 pm
Everybody is different and I totally understand your pain.
Melanoma has been trying to kill me since 1987. I don't say that to be a smartass, but with an unknown primary at coming out of the box as Stage 3 at that time, it is true..
First, never "hate" bringing up your feeliings, thoughts, fears, confusion, wants, desires, questions and simply the aloneness that comes with advanced melanoma.
When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen.
The only right choice is the one that suits the individual. What I choose to do is not right for anybody else; nor is what you choose right for everyvbody else.
What is important is what is right for YOU.
All treatment decisions are deeply personal and deeply individual based upon circumstance.
You have to understand that melanoma is a most confounding disease because what treatment works for one seldom works for another; and as a result there really are no singular answers looking forward.
If it is absolutely an informed decision to stop treatment, then that is the right choice.
Even in hospice the patient is allowed to change thier mind and go back on treatment.
Without a long story, yes, I have went off treatment and back on in my next month 29 years of wrestling with melanoma.
There is no "normal" treatment for advanced melanoma. All of us, including you, have to find out own best way forward.
I wish you well in pursuit of that.
And I grant you that it is far from easy.
Cheers,
Charlie
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- May 10, 2016 at 3:53 pm
Wow, Charlie. Thanks for this. I'm especially refering to "the aloneness that comes with advanced melanoma." People are always telling me "you look and sound good". They have no idea of the constant turmoil we go through. I've been dealing with this now for 7 years (unknown primary; straight to Stage 3c). I even struggle, some days, with the fact that I'm "lucky" to still be around after 7 years…
Gwen
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- May 10, 2016 at 3:53 pm
Wow, Charlie. Thanks for this. I'm especially refering to "the aloneness that comes with advanced melanoma." People are always telling me "you look and sound good". They have no idea of the constant turmoil we go through. I've been dealing with this now for 7 years (unknown primary; straight to Stage 3c). I even struggle, some days, with the fact that I'm "lucky" to still be around after 7 years…
Gwen
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- May 10, 2016 at 3:53 pm
Wow, Charlie. Thanks for this. I'm especially refering to "the aloneness that comes with advanced melanoma." People are always telling me "you look and sound good". They have no idea of the constant turmoil we go through. I've been dealing with this now for 7 years (unknown primary; straight to Stage 3c). I even struggle, some days, with the fact that I'm "lucky" to still be around after 7 years…
Gwen
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- May 10, 2016 at 7:50 pm
Charlie,
I despise that melanoma has reared his ugly head at you again!!! The only good thing is all of us have your wisdom and excellent attitude !!! You're the number one kick ass warrior on here!!!! We hope you can get back to NED ASAP!!
Maureen
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- May 10, 2016 at 7:50 pm
Charlie,
I despise that melanoma has reared his ugly head at you again!!! The only good thing is all of us have your wisdom and excellent attitude !!! You're the number one kick ass warrior on here!!!! We hope you can get back to NED ASAP!!
Maureen
-
- May 10, 2016 at 7:50 pm
Charlie,
I despise that melanoma has reared his ugly head at you again!!! The only good thing is all of us have your wisdom and excellent attitude !!! You're the number one kick ass warrior on here!!!! We hope you can get back to NED ASAP!!
Maureen
-
- May 9, 2016 at 11:37 pm
Everybody is different and I totally understand your pain.
Melanoma has been trying to kill me since 1987. I don't say that to be a smartass, but with an unknown primary at coming out of the box as Stage 3 at that time, it is true..
First, never "hate" bringing up your feeliings, thoughts, fears, confusion, wants, desires, questions and simply the aloneness that comes with advanced melanoma.
When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen.
The only right choice is the one that suits the individual. What I choose to do is not right for anybody else; nor is what you choose right for everyvbody else.
What is important is what is right for YOU.
All treatment decisions are deeply personal and deeply individual based upon circumstance.
You have to understand that melanoma is a most confounding disease because what treatment works for one seldom works for another; and as a result there really are no singular answers looking forward.
If it is absolutely an informed decision to stop treatment, then that is the right choice.
Even in hospice the patient is allowed to change thier mind and go back on treatment.
Without a long story, yes, I have went off treatment and back on in my next month 29 years of wrestling with melanoma.
There is no "normal" treatment for advanced melanoma. All of us, including you, have to find out own best way forward.
I wish you well in pursuit of that.
And I grant you that it is far from easy.
Cheers,
Charlie
-
- May 9, 2016 at 11:37 pm
Everybody is different and I totally understand your pain.
Melanoma has been trying to kill me since 1987. I don't say that to be a smartass, but with an unknown primary at coming out of the box as Stage 3 at that time, it is true..
First, never "hate" bringing up your feeliings, thoughts, fears, confusion, wants, desires, questions and simply the aloneness that comes with advanced melanoma.
When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen.
The only right choice is the one that suits the individual. What I choose to do is not right for anybody else; nor is what you choose right for everyvbody else.
What is important is what is right for YOU.
All treatment decisions are deeply personal and deeply individual based upon circumstance.
You have to understand that melanoma is a most confounding disease because what treatment works for one seldom works for another; and as a result there really are no singular answers looking forward.
If it is absolutely an informed decision to stop treatment, then that is the right choice.
Even in hospice the patient is allowed to change thier mind and go back on treatment.
Without a long story, yes, I have went off treatment and back on in my next month 29 years of wrestling with melanoma.
There is no "normal" treatment for advanced melanoma. All of us, including you, have to find out own best way forward.
I wish you well in pursuit of that.
And I grant you that it is far from easy.
Cheers,
Charlie
-
- May 10, 2016 at 2:43 am
Hi Rita,
I'm too much of a newbie to give any kind of relevant opinion so I just want to say that I feel for you and Charles and will be thinking special good thoughts for both of you!!
And I absolutely love this line from Charlie S.'s post – "When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen." I find that extremely empowering!!!!
Best thoughts and wishes always!!
Barb
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- May 10, 2016 at 2:43 am
Hi Rita,
I'm too much of a newbie to give any kind of relevant opinion so I just want to say that I feel for you and Charles and will be thinking special good thoughts for both of you!!
And I absolutely love this line from Charlie S.'s post – "When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen." I find that extremely empowering!!!!
Best thoughts and wishes always!!
Barb
-
- May 10, 2016 at 2:43 am
Hi Rita,
I'm too much of a newbie to give any kind of relevant opinion so I just want to say that I feel for you and Charles and will be thinking special good thoughts for both of you!!
And I absolutely love this line from Charlie S.'s post – "When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen." I find that extremely empowering!!!!
Best thoughts and wishes always!!
Barb
-
- May 10, 2016 at 2:43 am
Hi Rita,
I'm too much of a newbie to give any kind of relevant opinion so I just want to say that I feel for you and Charles and will be thinking special good thoughts for both of you!!
And I absolutely love this line from Charlie S.'s post – "When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen." I find that extremely empowering!!!!
Best thoughts and wishes always!!
Barb
-
- May 10, 2016 at 2:43 am
Hi Rita,
I'm too much of a newbie to give any kind of relevant opinion so I just want to say that I feel for you and Charles and will be thinking special good thoughts for both of you!!
And I absolutely love this line from Charlie S.'s post – "When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen." I find that extremely empowering!!!!
Best thoughts and wishes always!!
Barb
-
- May 10, 2016 at 2:43 am
Hi Rita,
I'm too much of a newbie to give any kind of relevant opinion so I just want to say that I feel for you and Charles and will be thinking special good thoughts for both of you!!
And I absolutely love this line from Charlie S.'s post – "When cancer snufs emotion, fear and intelligence; it wins. Do not let that happen." I find that extremely empowering!!!!
Best thoughts and wishes always!!
Barb
-
- May 10, 2016 at 5:50 pm
Rita,
I completely understand the siren call of stopping treatment and attempting to enjoy life for a bit. I decided to answer that call myself by delaying conventional treatment entirely. But I only did so after I completely resigned myself to the very real possibility that in doing so, I might die before ever starting treatment. This disease is deadly. It can move quickly and its character can change at the drop of a hat. Stopping treatment is a huge risk. Having said that, treatment itself is not without risk. There is the risk of side effects and poor quality of life as well as the risk that the particular treatment may not work for you. Which, if it happens, can leave you feeling like you have wasted precious time. Yet for some, that same treatment works very well. My kingdom for a crystal ball! I think all of us would jump on a treatment immediately regardless of side-effects if we knew going in that it would work for us.
There is only one thing that is certain. We all will die. Whether from this disease or something else. Treatment may help adjust the timing, but not the inevitable end. For me, my fear of missing out on life is greater than my fear of death. I chose quality over quantity. I may change my mind tomorrow but that's where I am today.
Good luck to both of you.
Maggie
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- May 10, 2016 at 5:50 pm
Rita,
I completely understand the siren call of stopping treatment and attempting to enjoy life for a bit. I decided to answer that call myself by delaying conventional treatment entirely. But I only did so after I completely resigned myself to the very real possibility that in doing so, I might die before ever starting treatment. This disease is deadly. It can move quickly and its character can change at the drop of a hat. Stopping treatment is a huge risk. Having said that, treatment itself is not without risk. There is the risk of side effects and poor quality of life as well as the risk that the particular treatment may not work for you. Which, if it happens, can leave you feeling like you have wasted precious time. Yet for some, that same treatment works very well. My kingdom for a crystal ball! I think all of us would jump on a treatment immediately regardless of side-effects if we knew going in that it would work for us.
There is only one thing that is certain. We all will die. Whether from this disease or something else. Treatment may help adjust the timing, but not the inevitable end. For me, my fear of missing out on life is greater than my fear of death. I chose quality over quantity. I may change my mind tomorrow but that's where I am today.
Good luck to both of you.
Maggie
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- May 11, 2016 at 3:28 am
Thank you Maggie…….thank you to all. We wobble from day to day…….risk gamble, upside, happiness, still on the edge of trying to set the course…no decisons yet. Ying Yang…I agree, I'll give a kidney for a crystal ball.
Rita
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- May 11, 2016 at 3:28 am
Thank you Maggie…….thank you to all. We wobble from day to day…….risk gamble, upside, happiness, still on the edge of trying to set the course…no decisons yet. Ying Yang…I agree, I'll give a kidney for a crystal ball.
Rita
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- May 11, 2016 at 3:28 am
Thank you Maggie…….thank you to all. We wobble from day to day…….risk gamble, upside, happiness, still on the edge of trying to set the course…no decisons yet. Ying Yang…I agree, I'll give a kidney for a crystal ball.
Rita
-
- May 10, 2016 at 5:50 pm
Rita,
I completely understand the siren call of stopping treatment and attempting to enjoy life for a bit. I decided to answer that call myself by delaying conventional treatment entirely. But I only did so after I completely resigned myself to the very real possibility that in doing so, I might die before ever starting treatment. This disease is deadly. It can move quickly and its character can change at the drop of a hat. Stopping treatment is a huge risk. Having said that, treatment itself is not without risk. There is the risk of side effects and poor quality of life as well as the risk that the particular treatment may not work for you. Which, if it happens, can leave you feeling like you have wasted precious time. Yet for some, that same treatment works very well. My kingdom for a crystal ball! I think all of us would jump on a treatment immediately regardless of side-effects if we knew going in that it would work for us.
There is only one thing that is certain. We all will die. Whether from this disease or something else. Treatment may help adjust the timing, but not the inevitable end. For me, my fear of missing out on life is greater than my fear of death. I chose quality over quantity. I may change my mind tomorrow but that's where I am today.
Good luck to both of you.
Maggie
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