› Forums › General Melanoma Community › Help, treatment choices
- This topic has 18 replies, 3 voices, and was last updated 13 years, 2 months ago by
DeniseK.
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- November 13, 2012 at 9:14 pm
Hello All,
I’m meeting with my onc tomorrow to discuss treatment options. I have to wait a week or two for BRAF testing to come back but they want me to start something right away. I’ve been trying to do research on what my best options are but its been difficult since my laptop was stolen last week. Anyway I have 9 lung met and 4 sub qs. I know zelboraf souls be best if I’m BRAF positive but what would you suggest until then? What has worked for you? I know everyone is different but any input would be appreciated. Can you also include side effects you had?Thanks for your help 🙂
Denise
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- November 14, 2012 at 2:43 pm
Denise, I would ask about antiPD1 trials, the side effects seem minimal. You can always do Yervoy anytime since it’s FDA approved, so go with trials first when you have a clear brain MRI, that would be my strategy. You can discuss high dose IL2 with your doctor too. Really what works for you may not be what works for another. It’s scary to decide on treatment, I personally just pray that we make the right choices for my husband’s care since there are no guarantees. He is still in the fight almost 18 months from stage 4 diagnosis. WE investigate, we research, we will travel for treatment, whatever it takes to fight on. My best advice is be you own advocate and try to enjoy each day! Good luck with whatever treatment you do. Valerie (Phil’s wife) -
- November 14, 2012 at 2:43 pm
Denise, I would ask about antiPD1 trials, the side effects seem minimal. You can always do Yervoy anytime since it’s FDA approved, so go with trials first when you have a clear brain MRI, that would be my strategy. You can discuss high dose IL2 with your doctor too. Really what works for you may not be what works for another. It’s scary to decide on treatment, I personally just pray that we make the right choices for my husband’s care since there are no guarantees. He is still in the fight almost 18 months from stage 4 diagnosis. WE investigate, we research, we will travel for treatment, whatever it takes to fight on. My best advice is be you own advocate and try to enjoy each day! Good luck with whatever treatment you do. Valerie (Phil’s wife) -
- November 14, 2012 at 2:43 pm
Denise, I would ask about antiPD1 trials, the side effects seem minimal. You can always do Yervoy anytime since it’s FDA approved, so go with trials first when you have a clear brain MRI, that would be my strategy. You can discuss high dose IL2 with your doctor too. Really what works for you may not be what works for another. It’s scary to decide on treatment, I personally just pray that we make the right choices for my husband’s care since there are no guarantees. He is still in the fight almost 18 months from stage 4 diagnosis. WE investigate, we research, we will travel for treatment, whatever it takes to fight on. My best advice is be you own advocate and try to enjoy each day! Good luck with whatever treatment you do. Valerie (Phil’s wife) -
- November 14, 2012 at 4:33 pm
Hi, Denise-
Let me preface my comments by saying that I am NOT and doctor and I do NOT know the details of your case. So feel free to ignore anything I say.
I can't figure out whether your oncolgist is pushing you to start treatment immediately or whether you, personally, would feel reassured to be taking some active step RIGHT NOW. I can certainly understand if you're feeling unnerved and impatient–been there and done that. But as I recall, your original concern was about a subcutaneous bump. You were not having any symptoms like shortness of breath (from lung mets) or anemia (from internally bleeding tumors) or anything else. While certainly upsetting, having 9 lung mets and 4 sub qs is not immediately life-threatening unless, of couse, your oncologist says otherwise. My brother, for example, had a stroke. The stroke was due to a MM met in his brain that was bleeding. An MRI showed that he had 5 brain mets any or all of which could start bleeding at any moment. THAT was an emergency! But his lung, adrenal, and sub q mets were not considered an emergency.
My advice to you is to not start any treatment until you have the results of the BRAF test. That is REALLY important for determining the best treatment options for you. I also hope that you are going to an oncologist who specializes in melanoma. If not, you should at least consult with one before deciding on a treatment. And keep reading up about clinical trials (BRAF + MEK, Dabrafenib, anti-PD-1, GM-CSF, etc.). I know that reading those things can be difficult and frustrating, but you are your own best advocate. You are WORTH the effort!
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- November 14, 2012 at 4:33 pm
Hi, Denise-
Let me preface my comments by saying that I am NOT and doctor and I do NOT know the details of your case. So feel free to ignore anything I say.
I can't figure out whether your oncolgist is pushing you to start treatment immediately or whether you, personally, would feel reassured to be taking some active step RIGHT NOW. I can certainly understand if you're feeling unnerved and impatient–been there and done that. But as I recall, your original concern was about a subcutaneous bump. You were not having any symptoms like shortness of breath (from lung mets) or anemia (from internally bleeding tumors) or anything else. While certainly upsetting, having 9 lung mets and 4 sub qs is not immediately life-threatening unless, of couse, your oncologist says otherwise. My brother, for example, had a stroke. The stroke was due to a MM met in his brain that was bleeding. An MRI showed that he had 5 brain mets any or all of which could start bleeding at any moment. THAT was an emergency! But his lung, adrenal, and sub q mets were not considered an emergency.
My advice to you is to not start any treatment until you have the results of the BRAF test. That is REALLY important for determining the best treatment options for you. I also hope that you are going to an oncologist who specializes in melanoma. If not, you should at least consult with one before deciding on a treatment. And keep reading up about clinical trials (BRAF + MEK, Dabrafenib, anti-PD-1, GM-CSF, etc.). I know that reading those things can be difficult and frustrating, but you are your own best advocate. You are WORTH the effort!
-
- November 14, 2012 at 4:33 pm
Hi, Denise-
Let me preface my comments by saying that I am NOT and doctor and I do NOT know the details of your case. So feel free to ignore anything I say.
I can't figure out whether your oncolgist is pushing you to start treatment immediately or whether you, personally, would feel reassured to be taking some active step RIGHT NOW. I can certainly understand if you're feeling unnerved and impatient–been there and done that. But as I recall, your original concern was about a subcutaneous bump. You were not having any symptoms like shortness of breath (from lung mets) or anemia (from internally bleeding tumors) or anything else. While certainly upsetting, having 9 lung mets and 4 sub qs is not immediately life-threatening unless, of couse, your oncologist says otherwise. My brother, for example, had a stroke. The stroke was due to a MM met in his brain that was bleeding. An MRI showed that he had 5 brain mets any or all of which could start bleeding at any moment. THAT was an emergency! But his lung, adrenal, and sub q mets were not considered an emergency.
My advice to you is to not start any treatment until you have the results of the BRAF test. That is REALLY important for determining the best treatment options for you. I also hope that you are going to an oncologist who specializes in melanoma. If not, you should at least consult with one before deciding on a treatment. And keep reading up about clinical trials (BRAF + MEK, Dabrafenib, anti-PD-1, GM-CSF, etc.). I know that reading those things can be difficult and frustrating, but you are your own best advocate. You are WORTH the effort!
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- November 14, 2012 at 5:39 pm
Thank you Valerie and POW,
Btw POW, what is your name?
As of this moment I don’t have any symptoms that relate to mm. Maybe a little fatigued but other then that I would even argue the tests are wrong because I feel fine.
I’ve done some research with my phone and from what I’ve been reading it seems that my best bet is to wait until BRAF results are back. I asked my surgeon why they want me start something right away and he said, “it’ll make everyone feel better.” I asked about concerns around being excluded from trials in the future and he didn’t think it would be an issue. I’ll be asking my onc today about the severity of the issue and the push to get me started on something. I’ll also ask about his credentials in melanoma.
What I’m thinking is, I’m going to wait for BRAF results, get to San Francisco to see the specialists and discuss trials. I can’t see that waiting a little over a week until after thanksgiving will be that big of a deal. Now if he tells me its urgent then I will rethink my strategy. I have a bunch of family coming for the holiday and it would be nice to be able to enjoy it.
Thank you both for your help and I hope for the best for you!! -
- November 14, 2012 at 5:39 pm
Thank you Valerie and POW,
Btw POW, what is your name?
As of this moment I don’t have any symptoms that relate to mm. Maybe a little fatigued but other then that I would even argue the tests are wrong because I feel fine.
I’ve done some research with my phone and from what I’ve been reading it seems that my best bet is to wait until BRAF results are back. I asked my surgeon why they want me start something right away and he said, “it’ll make everyone feel better.” I asked about concerns around being excluded from trials in the future and he didn’t think it would be an issue. I’ll be asking my onc today about the severity of the issue and the push to get me started on something. I’ll also ask about his credentials in melanoma.
What I’m thinking is, I’m going to wait for BRAF results, get to San Francisco to see the specialists and discuss trials. I can’t see that waiting a little over a week until after thanksgiving will be that big of a deal. Now if he tells me its urgent then I will rethink my strategy. I have a bunch of family coming for the holiday and it would be nice to be able to enjoy it.
Thank you both for your help and I hope for the best for you!!-
- November 14, 2012 at 9:17 pm
Well the Dr. Said The same thing. We’re going to wait to find out about BRAF . He’s scheduling appt to go to San Franciso to discuss trials. So no treatment until we get these done. Its seriously a load off my mind for the next couple weeks. I’m going to enjoy Thanksgiving and worry about all this later. -
- November 14, 2012 at 9:17 pm
Well the Dr. Said The same thing. We’re going to wait to find out about BRAF . He’s scheduling appt to go to San Franciso to discuss trials. So no treatment until we get these done. Its seriously a load off my mind for the next couple weeks. I’m going to enjoy Thanksgiving and worry about all this later. -
- November 14, 2012 at 9:31 pm
Good for you, Denise! I'm so impressed that you had the courage to educate yourself about this crazy disease and its complex treatment options. And didn't it feel great to be able to sit with an oncologist to discuss your case and actually understand what he was talking about? You've come a long way, Baby!
The absolutely best thing you can do now is exactly what you are planning to do– put this whole thing out of your head and focus on having a wonderful holiday and visit with your family. That's the secret to living with and hopefully overcoming melanoma. Do your research, make the best decision you can at the time, then forget about it and go about enjoying life. I think you're going to be one of the "winners"!
Pat (POW)
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- November 14, 2012 at 9:31 pm
Good for you, Denise! I'm so impressed that you had the courage to educate yourself about this crazy disease and its complex treatment options. And didn't it feel great to be able to sit with an oncologist to discuss your case and actually understand what he was talking about? You've come a long way, Baby!
The absolutely best thing you can do now is exactly what you are planning to do– put this whole thing out of your head and focus on having a wonderful holiday and visit with your family. That's the secret to living with and hopefully overcoming melanoma. Do your research, make the best decision you can at the time, then forget about it and go about enjoying life. I think you're going to be one of the "winners"!
Pat (POW)
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- November 19, 2012 at 7:57 am
Thanks Pat!! I can’t tell you how you’ve lifted my spirits. Not feeling very well today, my back and ribs are achy today, kind of think I over did it with house cleaning and shopping. I actually went and got one of those electric scooters at walmart and cruised around on that. Freaks me out that this crap is growing inside me. I don’t know how much longer I can put off treatment with this pain but I feel like I’m making the best choice. Have a great Thanksgiving!!!
*Big Hug*
Denise -
- November 19, 2012 at 7:57 am
Thanks Pat!! I can’t tell you how you’ve lifted my spirits. Not feeling very well today, my back and ribs are achy today, kind of think I over did it with house cleaning and shopping. I actually went and got one of those electric scooters at walmart and cruised around on that. Freaks me out that this crap is growing inside me. I don’t know how much longer I can put off treatment with this pain but I feel like I’m making the best choice. Have a great Thanksgiving!!!
*Big Hug*
Denise -
- November 19, 2012 at 7:57 am
Thanks Pat!! I can’t tell you how you’ve lifted my spirits. Not feeling very well today, my back and ribs are achy today, kind of think I over did it with house cleaning and shopping. I actually went and got one of those electric scooters at walmart and cruised around on that. Freaks me out that this crap is growing inside me. I don’t know how much longer I can put off treatment with this pain but I feel like I’m making the best choice. Have a great Thanksgiving!!!
*Big Hug*
Denise -
- November 14, 2012 at 9:31 pm
Good for you, Denise! I'm so impressed that you had the courage to educate yourself about this crazy disease and its complex treatment options. And didn't it feel great to be able to sit with an oncologist to discuss your case and actually understand what he was talking about? You've come a long way, Baby!
The absolutely best thing you can do now is exactly what you are planning to do– put this whole thing out of your head and focus on having a wonderful holiday and visit with your family. That's the secret to living with and hopefully overcoming melanoma. Do your research, make the best decision you can at the time, then forget about it and go about enjoying life. I think you're going to be one of the "winners"!
Pat (POW)
-
- November 14, 2012 at 9:17 pm
Well the Dr. Said The same thing. We’re going to wait to find out about BRAF . He’s scheduling appt to go to San Franciso to discuss trials. So no treatment until we get these done. Its seriously a load off my mind for the next couple weeks. I’m going to enjoy Thanksgiving and worry about all this later.
-
- November 14, 2012 at 5:39 pm
Thank you Valerie and POW,
Btw POW, what is your name?
As of this moment I don’t have any symptoms that relate to mm. Maybe a little fatigued but other then that I would even argue the tests are wrong because I feel fine.
I’ve done some research with my phone and from what I’ve been reading it seems that my best bet is to wait until BRAF results are back. I asked my surgeon why they want me start something right away and he said, “it’ll make everyone feel better.” I asked about concerns around being excluded from trials in the future and he didn’t think it would be an issue. I’ll be asking my onc today about the severity of the issue and the push to get me started on something. I’ll also ask about his credentials in melanoma.
What I’m thinking is, I’m going to wait for BRAF results, get to San Francisco to see the specialists and discuss trials. I can’t see that waiting a little over a week until after thanksgiving will be that big of a deal. Now if he tells me its urgent then I will rethink my strategy. I have a bunch of family coming for the holiday and it would be nice to be able to enjoy it.
Thank you both for your help and I hope for the best for you!!
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