› Forums › General Melanoma Community › Sharing a story of hope after a 2014 stage 3 diagnosis
- This topic has 15 replies, 5 voices, and was last updated 9 years, 2 months ago by
DZnDef.
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- March 31, 2016 at 3:57 pm
In the beginning of 2014 I reached out to this board for help after my then vibrant and active 69 year old dad was diagnosed with stage 3 melanoma after having a nodular growth removed from his back. After a wide local excision and the removal of several infected lymph nodes from his arm pit, the melanoma returned just several inches away from where the original growth had been. We knew it was very aggressive.
At that point and after much research and consultation, my dad began seeing a melanoma specialist in Los Angeles. With a new aggressive growth on his back, his doctor had the green light to immediately start him on Yervoy. The results came quickly and the growth began to shrink after the second dose. Unfortunately, following the third dose my dad began to experience severe diarrhea. He was immediately taken off the Yervoy and started on a short course of antibiotics.
At this point, some decisions had to be made. His doctor was involved in clinical trials for anti-PD1 (still months away from FDA approval), but my dad was not eligible.You see, a couple of years before he had been diagnosed with stage 1 LLC (chronic lymphocytic leukemia) during a routine blood test as part of an annual physical. While he had no symptoms of this disease and was seemingly not impacted by it in any way, he was still disqualified from being a candidate for any melanoma clinical trials. It was also discovered that the LLC may have weakened his immune system just enough to allow the melanoma to develop.
Because the FDA was very close to approving anti-PD1 and because my dad was not eligible for clinical trials, his doctor was able to start him on the drug as part of a program that allowed those otherwise disqualified from clinical trials to still receive the medication. Almost immediately, the growth on his back (which had grown very large at this point) began to melt away and eventually disappeared completely.
Fast forward to present day. My dad has been receiving 3mg of anti-PD1 infusions – now Keytruda – every 3 weeks for almost 2 years. He just had his 6 months scans and he is still NED. This summer, his doctor feels comfortable taking him off the Keytruda. During his time on Keytruda, with the exception of a loss of his thyroid function (easily treated with one pill a day), he has had NO side effects from the drug. He continues to bike, play tennis, and carry on with the active life he had prior to the melanoma diagnosis. Remarkably, there is also no sign of his LLC on blood tests!
I'm sharing my story now because I want to give others hope that positive outcomes are very real and very possible. The advancements in melanoma treatment have been nothing short of miraculous and they just continue to get better and better. Educating yourself to what's out there and working with specialists in the field who are at the forefront of melanoma research is absolutely key. No one knows what the future holds, but this much is true – advanced melanoma is closer and closer to becoming a manageable chronic illness and, quite possibly, an eradicated one.
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- March 31, 2016 at 5:44 pm
Thank you so much for sharing this. I am scheduled to have a lymph node dissection on Monday April 4th because my melanoma came back in an inginual node. I am trying to be confident but it is hard
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- March 31, 2016 at 5:44 pm
Thank you so much for sharing this. I am scheduled to have a lymph node dissection on Monday April 4th because my melanoma came back in an inginual node. I am trying to be confident but it is hard
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- March 31, 2016 at 6:38 pm
I'm so sorry you are going through this. There is nothing easy about battling melanoma, but there are many reasons to be hopeful. My dad had 8 infected nodes and after having those removed systemic treatment was essential in mitigating any further spread. Information is power, so knowing what your options are for what comes next and having a specialist in your corner is key. There are so many success stories on this board. Stay focused on those and stay strong!
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- March 31, 2016 at 6:38 pm
I'm so sorry you are going through this. There is nothing easy about battling melanoma, but there are many reasons to be hopeful. My dad had 8 infected nodes and after having those removed systemic treatment was essential in mitigating any further spread. Information is power, so knowing what your options are for what comes next and having a specialist in your corner is key. There are so many success stories on this board. Stay focused on those and stay strong!
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- March 31, 2016 at 6:38 pm
I'm so sorry you are going through this. There is nothing easy about battling melanoma, but there are many reasons to be hopeful. My dad had 8 infected nodes and after having those removed systemic treatment was essential in mitigating any further spread. Information is power, so knowing what your options are for what comes next and having a specialist in your corner is key. There are so many success stories on this board. Stay focused on those and stay strong!
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- March 31, 2016 at 5:44 pm
Thank you so much for sharing this. I am scheduled to have a lymph node dissection on Monday April 4th because my melanoma came back in an inginual node. I am trying to be confident but it is hard
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- March 31, 2016 at 8:24 pm
Thank you so much for sharing this! My dad was diagnosed stage 3c with 4 affected nodes in December. He made it through 2 infusions of Yervoy but then had to stop due to raised liver enzymes.He feels fantastic now though and has an amazing attitude. Found out today he is BRAF positive so that was good news if we ever need to worry about further treatments. Hoping Surgery, radiation and Yervoy did the trick though.
Again, thank you for sharing your dad’s encouraging story!
Annie
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- March 31, 2016 at 8:24 pm
Thank you so much for sharing this! My dad was diagnosed stage 3c with 4 affected nodes in December. He made it through 2 infusions of Yervoy but then had to stop due to raised liver enzymes.He feels fantastic now though and has an amazing attitude. Found out today he is BRAF positive so that was good news if we ever need to worry about further treatments. Hoping Surgery, radiation and Yervoy did the trick though.
Again, thank you for sharing your dad’s encouraging story!
Annie
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- March 31, 2016 at 8:24 pm
Thank you so much for sharing this! My dad was diagnosed stage 3c with 4 affected nodes in December. He made it through 2 infusions of Yervoy but then had to stop due to raised liver enzymes.He feels fantastic now though and has an amazing attitude. Found out today he is BRAF positive so that was good news if we ever need to worry about further treatments. Hoping Surgery, radiation and Yervoy did the trick though.
Again, thank you for sharing your dad’s encouraging story!
Annie
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- March 31, 2016 at 8:44 pm
I wanted to add to your message of hope. My 27 year old daughter just received news that her latest scans are clear. This is 3 years NED after stage 3b diagnosis of nodular melanoma on her right neck. Yahoo! She had lymph node dissection and 3 courses of bio-chemotherapy after her diagnosis as that was all that was available at the time. So happy to see that there are more adjuvant treatments becoming possible for stage 3 melanoma.
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- March 31, 2016 at 8:44 pm
I wanted to add to your message of hope. My 27 year old daughter just received news that her latest scans are clear. This is 3 years NED after stage 3b diagnosis of nodular melanoma on her right neck. Yahoo! She had lymph node dissection and 3 courses of bio-chemotherapy after her diagnosis as that was all that was available at the time. So happy to see that there are more adjuvant treatments becoming possible for stage 3 melanoma.
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- March 31, 2016 at 8:44 pm
I wanted to add to your message of hope. My 27 year old daughter just received news that her latest scans are clear. This is 3 years NED after stage 3b diagnosis of nodular melanoma on her right neck. Yahoo! She had lymph node dissection and 3 courses of bio-chemotherapy after her diagnosis as that was all that was available at the time. So happy to see that there are more adjuvant treatments becoming possible for stage 3 melanoma.
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Tagged: cutaneous melanoma
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