› Forums › General Melanoma Community › New stage IV diagnosis, help!!
- This topic has 9 replies, 3 voices, and was last updated 11 years, 2 months ago by
qtkitycat.
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- February 1, 2013 at 9:30 pm
My fiance was just diagnosed with stage IV melanoma. He orginally had a large mole on his back removed 6/12 that was malignant. They did a cential node biopsy for 2 nodes at that time also. Everything came back cleared, no evidence of any remaining cancer.
My fiance was just diagnosed with stage IV melanoma. He orginally had a large mole on his back removed 6/12 that was malignant. They did a cential node biopsy for 2 nodes at that time also. Everything came back cleared, no evidence of any remaining cancer.
Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle. We are both devastated with this news. The outlook is grim. They are waiting for the Braf Mutation test to come back before they proceed with any treatment. Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.
There's got to be a better outcome. Any advice would be greatly appreciated.
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- February 8, 2013 at 3:44 pm
I am so sorry to hear that is happening to the person you love. Melanoma is a beast that attacks in so many different ways. Never lose hope as there are many success stories on here and many new drugs that are used to fight this beast and new drugs come along as well…
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- February 8, 2013 at 3:44 pm
I am so sorry to hear that is happening to the person you love. Melanoma is a beast that attacks in so many different ways. Never lose hope as there are many success stories on here and many new drugs that are used to fight this beast and new drugs come along as well…
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- February 8, 2013 at 3:44 pm
I am so sorry to hear that is happening to the person you love. Melanoma is a beast that attacks in so many different ways. Never lose hope as there are many success stories on here and many new drugs that are used to fight this beast and new drugs come along as well…
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- February 8, 2013 at 4:19 pm
Exactly the same thing happened to my brother– he had a lesion removed, was told "they got it all" and 7 months later melanoma was everywhere and the prognosis was grim. Total shock!! Panic! Confusion! Urgency! It's awful. However, with the newer treatments available and more coming in the clinical trial pipeline, the outlook is not nearly as grim as it was even 2 years ago.
Does your fiance have brain tumors? That makes a big difference in a treatment plan. And, while the BRAF test is very important, taking a BRAF inhibitor like Zelboraf would not be my first choice if your fiance is not about to die from one or more tumors. While he is still healthy, an immunomodulator like ipi or anti-PD1 or perhaps a clinical trial is possible. Those types of treatments take longer to work than does a chemical like Zelboraf, but their effects last longer than Zelboraf does.
You and your fiance are beginning a long and difficult journey. There is no getting around that. But there are many treatment options available now and lots of support and information on this forum. I suggest you also check out the webinars on the Melanoma Internation Foundation website. The more you know about melanoma and its various treatments, the better you can advocate for the best treatment for your fiance.
Keep posting and we will keep trying to help!
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- February 8, 2013 at 10:30 pm
Thank you for you kind replies, it is very much appreciated. It helps to not feel so alone, thank you.
He does not have brain tumors, he had a brain mri done and it came back clear..Yay good news.
Right now we are in limbo until the doctors decide which treatment they will do, and the waiting is very difficult. It seems with each day that passes it becomes a little more difficult to breathe. He gets winded easier. But I have hope that the correct treatment will start soon for him and be successful.
How is your brother doing? How long has he been going through treatment? Where did the melanoma metastis?
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- February 8, 2013 at 10:30 pm
Thank you for you kind replies, it is very much appreciated. It helps to not feel so alone, thank you.
He does not have brain tumors, he had a brain mri done and it came back clear..Yay good news.
Right now we are in limbo until the doctors decide which treatment they will do, and the waiting is very difficult. It seems with each day that passes it becomes a little more difficult to breathe. He gets winded easier. But I have hope that the correct treatment will start soon for him and be successful.
How is your brother doing? How long has he been going through treatment? Where did the melanoma metastis?
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- February 8, 2013 at 10:30 pm
Thank you for you kind replies, it is very much appreciated. It helps to not feel so alone, thank you.
He does not have brain tumors, he had a brain mri done and it came back clear..Yay good news.
Right now we are in limbo until the doctors decide which treatment they will do, and the waiting is very difficult. It seems with each day that passes it becomes a little more difficult to breathe. He gets winded easier. But I have hope that the correct treatment will start soon for him and be successful.
How is your brother doing? How long has he been going through treatment? Where did the melanoma metastis?
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- February 8, 2013 at 4:19 pm
Exactly the same thing happened to my brother– he had a lesion removed, was told "they got it all" and 7 months later melanoma was everywhere and the prognosis was grim. Total shock!! Panic! Confusion! Urgency! It's awful. However, with the newer treatments available and more coming in the clinical trial pipeline, the outlook is not nearly as grim as it was even 2 years ago.
Does your fiance have brain tumors? That makes a big difference in a treatment plan. And, while the BRAF test is very important, taking a BRAF inhibitor like Zelboraf would not be my first choice if your fiance is not about to die from one or more tumors. While he is still healthy, an immunomodulator like ipi or anti-PD1 or perhaps a clinical trial is possible. Those types of treatments take longer to work than does a chemical like Zelboraf, but their effects last longer than Zelboraf does.
You and your fiance are beginning a long and difficult journey. There is no getting around that. But there are many treatment options available now and lots of support and information on this forum. I suggest you also check out the webinars on the Melanoma Internation Foundation website. The more you know about melanoma and its various treatments, the better you can advocate for the best treatment for your fiance.
Keep posting and we will keep trying to help!
-
- February 8, 2013 at 4:19 pm
Exactly the same thing happened to my brother– he had a lesion removed, was told "they got it all" and 7 months later melanoma was everywhere and the prognosis was grim. Total shock!! Panic! Confusion! Urgency! It's awful. However, with the newer treatments available and more coming in the clinical trial pipeline, the outlook is not nearly as grim as it was even 2 years ago.
Does your fiance have brain tumors? That makes a big difference in a treatment plan. And, while the BRAF test is very important, taking a BRAF inhibitor like Zelboraf would not be my first choice if your fiance is not about to die from one or more tumors. While he is still healthy, an immunomodulator like ipi or anti-PD1 or perhaps a clinical trial is possible. Those types of treatments take longer to work than does a chemical like Zelboraf, but their effects last longer than Zelboraf does.
You and your fiance are beginning a long and difficult journey. There is no getting around that. But there are many treatment options available now and lots of support and information on this forum. I suggest you also check out the webinars on the Melanoma Internation Foundation website. The more you know about melanoma and its various treatments, the better you can advocate for the best treatment for your fiance.
Keep posting and we will keep trying to help!
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Tagged: cutaneous melanoma
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