› Forums › General Melanoma Community › Stage 3C Nodular Melonoma Treatment Options..looking for some hope
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Jls377.
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- October 25, 2012 at 4:41 pm
I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery.
I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery. The surgeon said that he wanted to hold off on doing a neck dissection because he may need to go back in with several more surgeries to removed new tumors as they sprout up. They are suggesting a series of radiation for several months. Overall the doctors have been less that optimistic and seem to be taking the attitude that it is so aggressive that they need to treat as it evolves. This includes radiation and then regular ultrasounds/pet scans to catch any new tumors and then they would do additional surgeries. I am really looking to hear feedback on any successful treatments people have experienced. Also what ones to steer clear of. There is also a thermotheapy that has come up as an option. The doctors have told him that he is too far along in the staging to do many of the cancer trials or chemo. Any feedback would be so helpful! Positive stories would be uplifting!. I am open to hearing about any and all treatment options including more holistic approaches. Thank you for taking the time to hear our story.
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- October 25, 2012 at 6:19 pm
I am sorry to hear about your cousin. It is especially frustrating when you are misdiagnosed in the beginning.
In May 2009 I showed a lump on the bottom of my foot to my primary care physician. She treated it as a wart, freezing it 3 times in the next several months. The last time she froze it, in August 2009, I told her it was painful to walk. She sent me to a podiatrist for plantar faciitis. He said the lump was not a wart, but he didn't know what it was. By January 2010, it was so painful to walk I could barely go from one room to another. I insisted that the lump had to come off. Even then the podiatrist didn't think it was necessary, but he did it because I insisted. The pathology came back as nodular melanoma. I then had more of the foot removed and a sentinel node biopsy, which came back microscopically positive. So a third surgery followed to remove the lymph nodes in my left groin. This left me with a diagnosis of stage 3b.
My oncologist wasn't too excited about Interferon therapy. I did try one dose, but did not continue. The side effects were too extreme. If the doctor thought it was very important, I would have continued. Since he didn't think it was going to significantly improve my survival chances, I did not continue.
For the first two years I saw the oncologist and dermatologist every 3 months, CT scans every 6 months, annual breast exams, annual eye exams, dental exam every 6 monhs, podiatrist every 3 months (I got a new one). When I got to the 2 year mark, I started seeing the oncologist and dermatologist every 6 months.
Every time I find a lump I go to the dermatologist immediately. So far I have not had a recurrence. Sometimes they try to put me off, but I really don't care if they think I am a nut case. I want lumps looked at sooner rather than later and I am not afraid to be a little pushy about it. I would not have staged so high if they would have biopsied it in the first place, eight months earlier.
I know you're looking for treatment options, but I don't have anything to offer in that regard. I am just being vigilant. It is just part of my life now, and I am grateful that I am alive.
Best wishes to you and your cousin!
Cheri
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- October 25, 2012 at 6:19 pm
I am sorry to hear about your cousin. It is especially frustrating when you are misdiagnosed in the beginning.
In May 2009 I showed a lump on the bottom of my foot to my primary care physician. She treated it as a wart, freezing it 3 times in the next several months. The last time she froze it, in August 2009, I told her it was painful to walk. She sent me to a podiatrist for plantar faciitis. He said the lump was not a wart, but he didn't know what it was. By January 2010, it was so painful to walk I could barely go from one room to another. I insisted that the lump had to come off. Even then the podiatrist didn't think it was necessary, but he did it because I insisted. The pathology came back as nodular melanoma. I then had more of the foot removed and a sentinel node biopsy, which came back microscopically positive. So a third surgery followed to remove the lymph nodes in my left groin. This left me with a diagnosis of stage 3b.
My oncologist wasn't too excited about Interferon therapy. I did try one dose, but did not continue. The side effects were too extreme. If the doctor thought it was very important, I would have continued. Since he didn't think it was going to significantly improve my survival chances, I did not continue.
For the first two years I saw the oncologist and dermatologist every 3 months, CT scans every 6 months, annual breast exams, annual eye exams, dental exam every 6 monhs, podiatrist every 3 months (I got a new one). When I got to the 2 year mark, I started seeing the oncologist and dermatologist every 6 months.
Every time I find a lump I go to the dermatologist immediately. So far I have not had a recurrence. Sometimes they try to put me off, but I really don't care if they think I am a nut case. I want lumps looked at sooner rather than later and I am not afraid to be a little pushy about it. I would not have staged so high if they would have biopsied it in the first place, eight months earlier.
I know you're looking for treatment options, but I don't have anything to offer in that regard. I am just being vigilant. It is just part of my life now, and I am grateful that I am alive.
Best wishes to you and your cousin!
Cheri
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- October 25, 2012 at 6:19 pm
I am sorry to hear about your cousin. It is especially frustrating when you are misdiagnosed in the beginning.
In May 2009 I showed a lump on the bottom of my foot to my primary care physician. She treated it as a wart, freezing it 3 times in the next several months. The last time she froze it, in August 2009, I told her it was painful to walk. She sent me to a podiatrist for plantar faciitis. He said the lump was not a wart, but he didn't know what it was. By January 2010, it was so painful to walk I could barely go from one room to another. I insisted that the lump had to come off. Even then the podiatrist didn't think it was necessary, but he did it because I insisted. The pathology came back as nodular melanoma. I then had more of the foot removed and a sentinel node biopsy, which came back microscopically positive. So a third surgery followed to remove the lymph nodes in my left groin. This left me with a diagnosis of stage 3b.
My oncologist wasn't too excited about Interferon therapy. I did try one dose, but did not continue. The side effects were too extreme. If the doctor thought it was very important, I would have continued. Since he didn't think it was going to significantly improve my survival chances, I did not continue.
For the first two years I saw the oncologist and dermatologist every 3 months, CT scans every 6 months, annual breast exams, annual eye exams, dental exam every 6 monhs, podiatrist every 3 months (I got a new one). When I got to the 2 year mark, I started seeing the oncologist and dermatologist every 6 months.
Every time I find a lump I go to the dermatologist immediately. So far I have not had a recurrence. Sometimes they try to put me off, but I really don't care if they think I am a nut case. I want lumps looked at sooner rather than later and I am not afraid to be a little pushy about it. I would not have staged so high if they would have biopsied it in the first place, eight months earlier.
I know you're looking for treatment options, but I don't have anything to offer in that regard. I am just being vigilant. It is just part of my life now, and I am grateful that I am alive.
Best wishes to you and your cousin!
Cheri
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- October 25, 2012 at 6:47 pm
Hello. Mostly the same story as many you will read here. My husband had a mole on his chest & had it taken off..it was positive for melanoma. After surgery to remove tumor and lymph nodes he had one positive. His was also nodular melanoma. He is stage 3b due to ulceration. He then went into a trial for interferon/ipilumumab through Vanderbilt in Nashville,Tn and recieved the ipi. After 2 doses of that drug he got so sick they took him off the trial and about 3 months later he started the interferon. Interferon seems to be the only approved drug for stage 3 melanoma and has been for years. You will find many ppl that think interferon is a good idea and some that dont. It will not cure melanoma and if anything it will delay melanoma from coming back. My husband chose to do it because we thought even if you can delay it it could be worth that time for new drugs to get approved that he could take down the road if needed. It normally is a full year …1 month infusions and 11 month injections at home.My husand chose to do only the 1 month infusions. Due to that fact that he wanted to go back to work and live life. Every decion is very personal and each person is different. My husband as of this month is 1 year cancer free! Thank the Lord above. When he saw his melanoma specialist at the beginning of this journey we were told that 50% of people will never see this cancer againg after the tumor surgery and 50% will. Those of course are just percents but hopefully we all will never see this nasty cancer again as I have a friend who just lost her father to melanoma. His melanoma spread to his lungs after being cancer free for more than 10 years….so you never know. Good luck with helping your cousin find the right path for him
Mandi
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- October 25, 2012 at 6:47 pm
Hello. Mostly the same story as many you will read here. My husband had a mole on his chest & had it taken off..it was positive for melanoma. After surgery to remove tumor and lymph nodes he had one positive. His was also nodular melanoma. He is stage 3b due to ulceration. He then went into a trial for interferon/ipilumumab through Vanderbilt in Nashville,Tn and recieved the ipi. After 2 doses of that drug he got so sick they took him off the trial and about 3 months later he started the interferon. Interferon seems to be the only approved drug for stage 3 melanoma and has been for years. You will find many ppl that think interferon is a good idea and some that dont. It will not cure melanoma and if anything it will delay melanoma from coming back. My husband chose to do it because we thought even if you can delay it it could be worth that time for new drugs to get approved that he could take down the road if needed. It normally is a full year …1 month infusions and 11 month injections at home.My husand chose to do only the 1 month infusions. Due to that fact that he wanted to go back to work and live life. Every decion is very personal and each person is different. My husband as of this month is 1 year cancer free! Thank the Lord above. When he saw his melanoma specialist at the beginning of this journey we were told that 50% of people will never see this cancer againg after the tumor surgery and 50% will. Those of course are just percents but hopefully we all will never see this nasty cancer again as I have a friend who just lost her father to melanoma. His melanoma spread to his lungs after being cancer free for more than 10 years….so you never know. Good luck with helping your cousin find the right path for him
Mandi
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- October 25, 2012 at 6:47 pm
Hello. Mostly the same story as many you will read here. My husband had a mole on his chest & had it taken off..it was positive for melanoma. After surgery to remove tumor and lymph nodes he had one positive. His was also nodular melanoma. He is stage 3b due to ulceration. He then went into a trial for interferon/ipilumumab through Vanderbilt in Nashville,Tn and recieved the ipi. After 2 doses of that drug he got so sick they took him off the trial and about 3 months later he started the interferon. Interferon seems to be the only approved drug for stage 3 melanoma and has been for years. You will find many ppl that think interferon is a good idea and some that dont. It will not cure melanoma and if anything it will delay melanoma from coming back. My husband chose to do it because we thought even if you can delay it it could be worth that time for new drugs to get approved that he could take down the road if needed. It normally is a full year …1 month infusions and 11 month injections at home.My husand chose to do only the 1 month infusions. Due to that fact that he wanted to go back to work and live life. Every decion is very personal and each person is different. My husband as of this month is 1 year cancer free! Thank the Lord above. When he saw his melanoma specialist at the beginning of this journey we were told that 50% of people will never see this cancer againg after the tumor surgery and 50% will. Those of course are just percents but hopefully we all will never see this nasty cancer again as I have a friend who just lost her father to melanoma. His melanoma spread to his lungs after being cancer free for more than 10 years….so you never know. Good luck with helping your cousin find the right path for him
Mandi
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- November 20, 2012 at 4:26 am
Thank you both so very much for responding to my post. He just went through a neck dissection surgery in which they removed 5 more nodules and the surrounding lymph nodes. They want him to start radiation in a few weeks since the cancer is progressing so aggressively. Please let me know if you have any additional advice or guidance. Thanks again.
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- November 20, 2012 at 4:26 am
Thank you both so very much for responding to my post. He just went through a neck dissection surgery in which they removed 5 more nodules and the surrounding lymph nodes. They want him to start radiation in a few weeks since the cancer is progressing so aggressively. Please let me know if you have any additional advice or guidance. Thanks again.
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- November 20, 2012 at 4:26 am
Thank you both so very much for responding to my post. He just went through a neck dissection surgery in which they removed 5 more nodules and the surrounding lymph nodes. They want him to start radiation in a few weeks since the cancer is progressing so aggressively. Please let me know if you have any additional advice or guidance. Thanks again.
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Tagged: cutaneous melanoma
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