› Forums › General Melanoma Community › Need Advice Please
- This topic has 15 replies, 5 voices, and was last updated 9 years, 6 months ago by
jvictoria.
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- December 4, 2015 at 3:51 am
Here's my story. Diagnosed with stage 3 melanoma in 2011. No treatments, just surgery. 2013, 1 met found in lung and surgically removed. No treatment. Being monitored via CT's, PET's. Recent PET showed activity – biopsy of small tumor confirmed melanoma. Believes other areas that 'lit up' on PET most likely means progression of disease. Doc wants to start trial, but reading the consent scares me to death.
Without biopsies of other areas that lit up, how do I trust that treatment or a clinical trial is the best route?
Could this small tumor be the only one in my body? Having a difficult time with this decision. 2 reoccurrences in 5 years…..how do I know that the trial will not cause progression of disease or make me sick (I feel good and have felt the same as I did before diagnosis and I don't want to do somethimg that may change that)
Any advice, information or support would be so much appreciated.
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- December 4, 2015 at 3:56 am
Since you've had one met found in the lung, I believe that makes you Stage IV now. Which means you have several approved treatments available, not just trials. Is there a reason you don't want to try one of the approved treatments first? (Yervoy, Opdivo, Keytruda, combo, etc.)
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- December 4, 2015 at 3:56 am
Since you've had one met found in the lung, I believe that makes you Stage IV now. Which means you have several approved treatments available, not just trials. Is there a reason you don't want to try one of the approved treatments first? (Yervoy, Opdivo, Keytruda, combo, etc.)
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- December 4, 2015 at 3:56 am
Since you've had one met found in the lung, I believe that makes you Stage IV now. Which means you have several approved treatments available, not just trials. Is there a reason you don't want to try one of the approved treatments first? (Yervoy, Opdivo, Keytruda, combo, etc.)
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- December 4, 2015 at 2:09 pm
I would go for one of the trials or an approved treatment.
This doesn’t just go away. You could wake up one day and it’s in your brain, spine, liver, etc… I had a mole removed (no treatment afterward since they got it all) year later I have it in 3 organs. Melanoma is no joke and I’m not saying that you aren’t taking it seriously but you need to be proactive and start treatment now….don’t wait. The side effects are different with everyone. I had a rash, fatigue, diarrhea, but I started on steroids and it was gone. I wouldn’t focus on the side effects instead prolonging your life. Waiting could be fatal if they haven’t explained it already. I was a completely healthy 40 yr old without any other issues when I was diagnosed with stage 4 metastic melanoma in my lungs, liver, and lymph nodes. No surgeries ever in my life. I lived a very healthy lifestyle. No smoking or drinking. Exercised regularly. Ate somewhat organic diet most of the time when possible.If it were me I would do a trial or approved treatment. No question. But I’m already dealing with side effects so my opinion is probably jaded.
I wish you the best and I know it’s a hard decision for you…
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- December 4, 2015 at 2:09 pm
I would go for one of the trials or an approved treatment.
This doesn’t just go away. You could wake up one day and it’s in your brain, spine, liver, etc… I had a mole removed (no treatment afterward since they got it all) year later I have it in 3 organs. Melanoma is no joke and I’m not saying that you aren’t taking it seriously but you need to be proactive and start treatment now….don’t wait. The side effects are different with everyone. I had a rash, fatigue, diarrhea, but I started on steroids and it was gone. I wouldn’t focus on the side effects instead prolonging your life. Waiting could be fatal if they haven’t explained it already. I was a completely healthy 40 yr old without any other issues when I was diagnosed with stage 4 metastic melanoma in my lungs, liver, and lymph nodes. No surgeries ever in my life. I lived a very healthy lifestyle. No smoking or drinking. Exercised regularly. Ate somewhat organic diet most of the time when possible.If it were me I would do a trial or approved treatment. No question. But I’m already dealing with side effects so my opinion is probably jaded.
I wish you the best and I know it’s a hard decision for you…
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- December 4, 2015 at 2:09 pm
I would go for one of the trials or an approved treatment.
This doesn’t just go away. You could wake up one day and it’s in your brain, spine, liver, etc… I had a mole removed (no treatment afterward since they got it all) year later I have it in 3 organs. Melanoma is no joke and I’m not saying that you aren’t taking it seriously but you need to be proactive and start treatment now….don’t wait. The side effects are different with everyone. I had a rash, fatigue, diarrhea, but I started on steroids and it was gone. I wouldn’t focus on the side effects instead prolonging your life. Waiting could be fatal if they haven’t explained it already. I was a completely healthy 40 yr old without any other issues when I was diagnosed with stage 4 metastic melanoma in my lungs, liver, and lymph nodes. No surgeries ever in my life. I lived a very healthy lifestyle. No smoking or drinking. Exercised regularly. Ate somewhat organic diet most of the time when possible.If it were me I would do a trial or approved treatment. No question. But I’m already dealing with side effects so my opinion is probably jaded.
I wish you the best and I know it’s a hard decision for you…
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- December 5, 2015 at 4:32 pm
I totally agree with the previous posts!!! Make sure you are with a specialist and go with an approved immune therapy if you can. I seem to be seeing very high success rates with reasonable/manageable side effects with these treatments. Melanoma can spread SO fast!! Be so careful! My 18 yr old son went from a few lymph nodes to spine, liver, lungs, bones etc in a few months. Keytruda is working for him!!
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- December 5, 2015 at 4:32 pm
I totally agree with the previous posts!!! Make sure you are with a specialist and go with an approved immune therapy if you can. I seem to be seeing very high success rates with reasonable/manageable side effects with these treatments. Melanoma can spread SO fast!! Be so careful! My 18 yr old son went from a few lymph nodes to spine, liver, lungs, bones etc in a few months. Keytruda is working for him!!
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- December 5, 2015 at 4:32 pm
I totally agree with the previous posts!!! Make sure you are with a specialist and go with an approved immune therapy if you can. I seem to be seeing very high success rates with reasonable/manageable side effects with these treatments. Melanoma can spread SO fast!! Be so careful! My 18 yr old son went from a few lymph nodes to spine, liver, lungs, bones etc in a few months. Keytruda is working for him!!
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- December 5, 2015 at 6:25 pm
What trial is it? Having done approved stuff first then denied getting in trials I'm usually for trials first if they are a good one.
Artie
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- December 5, 2015 at 6:25 pm
What trial is it? Having done approved stuff first then denied getting in trials I'm usually for trials first if they are a good one.
Artie
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- December 5, 2015 at 6:25 pm
What trial is it? Having done approved stuff first then denied getting in trials I'm usually for trials first if they are a good one.
Artie
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- December 10, 2015 at 5:14 pm
My 2 cents…
From what I understand about the approved drugs and trials, some can be targeted based on the melanoma gene mutation. I feel it's best to get with a very qualified melanoma oncologist to you the best advice on which approach to take.
By all means, get on something. Be brave… I was terrified and luckily I found a doctor that helped me understand the best treatment for me… answered all my questions and clearly explained the whys.
Good luck
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- December 10, 2015 at 5:14 pm
My 2 cents…
From what I understand about the approved drugs and trials, some can be targeted based on the melanoma gene mutation. I feel it's best to get with a very qualified melanoma oncologist to you the best advice on which approach to take.
By all means, get on something. Be brave… I was terrified and luckily I found a doctor that helped me understand the best treatment for me… answered all my questions and clearly explained the whys.
Good luck
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- December 10, 2015 at 5:14 pm
My 2 cents…
From what I understand about the approved drugs and trials, some can be targeted based on the melanoma gene mutation. I feel it's best to get with a very qualified melanoma oncologist to you the best advice on which approach to take.
By all means, get on something. Be brave… I was terrified and luckily I found a doctor that helped me understand the best treatment for me… answered all my questions and clearly explained the whys.
Good luck
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