› Forums › General Melanoma Community › Anyone else 4.6 mm on scalp?
- This topic has 42 replies, 7 voices, and was last updated 9 years, 4 months ago by
_Paul_.
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- November 28, 2016 at 5:12 am
Hi everyone! I've been lurking on here for a couple of weeks and have learned so much from all of you! My Dad (age 62) was diagnosed with Melanoma on the back of his head (small bald spot). Initial biopsy showed 1.3 mm but he had a wle and sentinel biopsy done. The lymph nodes were all clear but the tumor was actually 4.6 mm! That put him at a Stage 2b. He is scheduled for a pet scan in a couple of days but I am curious if there is anyone else that had such a thick melanoma with no lymph node involvement? And a clear pet scan?
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- November 28, 2016 at 3:05 pm
Hello,
Sorry you have to be here but it is really one of the best sites with many knowledgeable group of people that offer their thoughts and what they have tried. Actually you are here at one of the better times as when my husband started this melanoma fight was Jan. 2008 and not much new in drugs to try.
My husband was 57 when he had his first melanoma. It was also on the back of his head which my husband had longer very dark hair and thick. His was 10.5 mm with no lymph node involvement and he started his journey at 3 A I believe. He had the WLE and SNB and they had to put a skin graft as they took a big grapefruit sized 10.5 cm cut on the back of his head but they did cinch it in he has a 3 inch in diameter graft. His scans came back clear. At this time he could only have interferon and he decided on the watch and wait.
If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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- November 28, 2016 at 5:13 pm
Thank you so much for the reply! This gives me encouragement as I thought with such a thick melanoma, my Dad's lymph nodes would show cancer and pet scan would light up for sure. I have actually read your husbands profile already since I have seen you respond to others on here. My Dad had WLE and SNB with skin graft from his arm also. I believe the Dr. said that if Dad's PET is clear, then watch and wait. If anything shows up, he suggested Ipi/Nivo combo.
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- November 28, 2016 at 5:13 pm
Thank you so much for the reply! This gives me encouragement as I thought with such a thick melanoma, my Dad's lymph nodes would show cancer and pet scan would light up for sure. I have actually read your husbands profile already since I have seen you respond to others on here. My Dad had WLE and SNB with skin graft from his arm also. I believe the Dr. said that if Dad's PET is clear, then watch and wait. If anything shows up, he suggested Ipi/Nivo combo.
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- November 28, 2016 at 5:13 pm
Thank you so much for the reply! This gives me encouragement as I thought with such a thick melanoma, my Dad's lymph nodes would show cancer and pet scan would light up for sure. I have actually read your husbands profile already since I have seen you respond to others on here. My Dad had WLE and SNB with skin graft from his arm also. I believe the Dr. said that if Dad's PET is clear, then watch and wait. If anything shows up, he suggested Ipi/Nivo combo.
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- November 28, 2016 at 10:14 pm
Will they tell my Dad anything tommorow at his PET scan? I know someone who has stomach cancer and they came out to his wife right away to tell her. I just don't want my Mom to be alone if that's possible.
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- November 28, 2016 at 10:14 pm
Will they tell my Dad anything tommorow at his PET scan? I know someone who has stomach cancer and they came out to his wife right away to tell her. I just don't want my Mom to be alone if that's possible.
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- November 28, 2016 at 11:23 pm
That would be very unusual. Some patients are lucky enough to have same day appointments with their oncologist to get the feedback from a scan. But, typically, it takes at least a day for the radiologist to go over the scan and send the results of their findings to the patient's oncologist. For myself, I schedule a visit with my oncologist 1-2 days after my scheduled scan date. The patient's oncologist should always be the one to give the results of a scan, good or bad, and is always good to have a family member with them to any and all appointments.
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- November 28, 2016 at 11:23 pm
That would be very unusual. Some patients are lucky enough to have same day appointments with their oncologist to get the feedback from a scan. But, typically, it takes at least a day for the radiologist to go over the scan and send the results of their findings to the patient's oncologist. For myself, I schedule a visit with my oncologist 1-2 days after my scheduled scan date. The patient's oncologist should always be the one to give the results of a scan, good or bad, and is always good to have a family member with them to any and all appointments.
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- November 29, 2016 at 3:32 am
Thank you!
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- November 29, 2016 at 3:32 am
Thank you!
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- November 29, 2016 at 3:32 am
Thank you!
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- November 28, 2016 at 11:23 pm
That would be very unusual. Some patients are lucky enough to have same day appointments with their oncologist to get the feedback from a scan. But, typically, it takes at least a day for the radiologist to go over the scan and send the results of their findings to the patient's oncologist. For myself, I schedule a visit with my oncologist 1-2 days after my scheduled scan date. The patient's oncologist should always be the one to give the results of a scan, good or bad, and is always good to have a family member with them to any and all appointments.
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- November 28, 2016 at 10:14 pm
Will they tell my Dad anything tommorow at his PET scan? I know someone who has stomach cancer and they came out to his wife right away to tell her. I just don't want my Mom to be alone if that's possible.
-
- November 28, 2016 at 3:05 pm
Hello,
Sorry you have to be here but it is really one of the best sites with many knowledgeable group of people that offer their thoughts and what they have tried. Actually you are here at one of the better times as when my husband started this melanoma fight was Jan. 2008 and not much new in drugs to try.
My husband was 57 when he had his first melanoma. It was also on the back of his head which my husband had longer very dark hair and thick. His was 10.5 mm with no lymph node involvement and he started his journey at 3 A I believe. He had the WLE and SNB and they had to put a skin graft as they took a big grapefruit sized 10.5 cm cut on the back of his head but they did cinch it in he has a 3 inch in diameter graft. His scans came back clear. At this time he could only have interferon and he decided on the watch and wait.
If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
-
- November 28, 2016 at 3:05 pm
Hello,
Sorry you have to be here but it is really one of the best sites with many knowledgeable group of people that offer their thoughts and what they have tried. Actually you are here at one of the better times as when my husband started this melanoma fight was Jan. 2008 and not much new in drugs to try.
My husband was 57 when he had his first melanoma. It was also on the back of his head which my husband had longer very dark hair and thick. His was 10.5 mm with no lymph node involvement and he started his journey at 3 A I believe. He had the WLE and SNB and they had to put a skin graft as they took a big grapefruit sized 10.5 cm cut on the back of his head but they did cinch it in he has a 3 inch in diameter graft. His scans came back clear. At this time he could only have interferon and he decided on the watch and wait.
If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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- November 28, 2016 at 3:09 pm
06/2015 I had a stage 2b on the back of my scalp, was over 2mm. No biopsy of lymph glands, PET scan was clear. This June I felt a lump in my shoulder/neck area. It turned out to be a 2 cm melanoma cyst. PET scan came back with 7 tumors in my lungs. The research I did in 2015 told me a stage 2b on the scalp will almost always spread elsewhere and was the worst place to get melanoma on the skin. I was not surprised when I felt the tumor in my neck as I had expected it to show up somewhere. I have been on nivo/ipi since july with really good results so far.
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- November 28, 2016 at 5:26 pm
Thank you for the reply! Wow, you went one year and PET went from clear to 7 tumors. I was really happy when they said that my Dad's lymph nodes were clear (they took out 4 all the way down his neck) but then they said that instead of 1.3 mm it was 4.6 mm! I've done enough research to know that this was a major setback. Fingers crossed tommorow as he will have his first PET scan. My Dad is also going to do Ipi/Nivo combo if needed. I also got him on a whole foods diet (no meat, dairy, sugar) and he's taking apricot kernals daily. Have you heard of doing this to improve odds of recurrance?
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- November 28, 2016 at 5:36 pm
There has been no proven natural way to prevent recurrance. Some of us have gone vegan, taken supplements, the works, and it still came back. Others stayed with their regular diet, didn't change anything, and they have stayed cancer free. Everyone is different. If he does need treatment, like Ipi/Nivo, just make sure to run any supplements and other natural things by his doctor to make sure they would be ok for him to take while on treatment. It doesn't hurt to try the natural route, just don't expect it to do much for cancer.
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- November 28, 2016 at 5:36 pm
There has been no proven natural way to prevent recurrance. Some of us have gone vegan, taken supplements, the works, and it still came back. Others stayed with their regular diet, didn't change anything, and they have stayed cancer free. Everyone is different. If he does need treatment, like Ipi/Nivo, just make sure to run any supplements and other natural things by his doctor to make sure they would be ok for him to take while on treatment. It doesn't hurt to try the natural route, just don't expect it to do much for cancer.
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- November 28, 2016 at 5:36 pm
There has been no proven natural way to prevent recurrance. Some of us have gone vegan, taken supplements, the works, and it still came back. Others stayed with their regular diet, didn't change anything, and they have stayed cancer free. Everyone is different. If he does need treatment, like Ipi/Nivo, just make sure to run any supplements and other natural things by his doctor to make sure they would be ok for him to take while on treatment. It doesn't hurt to try the natural route, just don't expect it to do much for cancer.
-
- November 28, 2016 at 5:26 pm
Thank you for the reply! Wow, you went one year and PET went from clear to 7 tumors. I was really happy when they said that my Dad's lymph nodes were clear (they took out 4 all the way down his neck) but then they said that instead of 1.3 mm it was 4.6 mm! I've done enough research to know that this was a major setback. Fingers crossed tommorow as he will have his first PET scan. My Dad is also going to do Ipi/Nivo combo if needed. I also got him on a whole foods diet (no meat, dairy, sugar) and he's taking apricot kernals daily. Have you heard of doing this to improve odds of recurrance?
-
- November 28, 2016 at 5:26 pm
Thank you for the reply! Wow, you went one year and PET went from clear to 7 tumors. I was really happy when they said that my Dad's lymph nodes were clear (they took out 4 all the way down his neck) but then they said that instead of 1.3 mm it was 4.6 mm! I've done enough research to know that this was a major setback. Fingers crossed tommorow as he will have his first PET scan. My Dad is also going to do Ipi/Nivo combo if needed. I also got him on a whole foods diet (no meat, dairy, sugar) and he's taking apricot kernals daily. Have you heard of doing this to improve odds of recurrance?
-
- November 28, 2016 at 3:09 pm
06/2015 I had a stage 2b on the back of my scalp, was over 2mm. No biopsy of lymph glands, PET scan was clear. This June I felt a lump in my shoulder/neck area. It turned out to be a 2 cm melanoma cyst. PET scan came back with 7 tumors in my lungs. The research I did in 2015 told me a stage 2b on the scalp will almost always spread elsewhere and was the worst place to get melanoma on the skin. I was not surprised when I felt the tumor in my neck as I had expected it to show up somewhere. I have been on nivo/ipi since july with really good results so far.
-
- November 28, 2016 at 3:09 pm
06/2015 I had a stage 2b on the back of my scalp, was over 2mm. No biopsy of lymph glands, PET scan was clear. This June I felt a lump in my shoulder/neck area. It turned out to be a 2 cm melanoma cyst. PET scan came back with 7 tumors in my lungs. The research I did in 2015 told me a stage 2b on the scalp will almost always spread elsewhere and was the worst place to get melanoma on the skin. I was not surprised when I felt the tumor in my neck as I had expected it to show up somewhere. I have been on nivo/ipi since july with really good results so far.
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- November 28, 2016 at 5:48 pm
Yeah, I had a 4.5mm tumor in lower lip. stage 2b back in 2009 and was node clear. Was disease free for over 4 years. Disease progressed to stage 4 with 1 node/bone/soft tissue mets. Many surgeries, Ippi/Nivo and Chemo. failed. Started Pembro in Jan. 2016 and became NED. in July with an almost immediate response. I had Desmoplastic/Neurotropoic Melanoma really rare and amelonotic color. Slow growing
Good luck to Pop's (clear scans)
Paul
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- November 28, 2016 at 5:48 pm
Yeah, I had a 4.5mm tumor in lower lip. stage 2b back in 2009 and was node clear. Was disease free for over 4 years. Disease progressed to stage 4 with 1 node/bone/soft tissue mets. Many surgeries, Ippi/Nivo and Chemo. failed. Started Pembro in Jan. 2016 and became NED. in July with an almost immediate response. I had Desmoplastic/Neurotropoic Melanoma really rare and amelonotic color. Slow growing
Good luck to Pop's (clear scans)
Paul
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- November 28, 2016 at 6:40 pm
My Dad's is also amelonotic! Thanks for your reply….it is encouraging to see so many go NED for years. I know this is something we will have to continually fight. He had bladder cancer 8 years ago, and melanoma on back five years ago (stage 1) so this is his third incidence. Thanks for the heads up on all your treatments….good to know what's out there and has success.
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- November 28, 2016 at 6:40 pm
My Dad's is also amelonotic! Thanks for your reply….it is encouraging to see so many go NED for years. I know this is something we will have to continually fight. He had bladder cancer 8 years ago, and melanoma on back five years ago (stage 1) so this is his third incidence. Thanks for the heads up on all your treatments….good to know what's out there and has success.
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- November 28, 2016 at 6:40 pm
My Dad's is also amelonotic! Thanks for your reply….it is encouraging to see so many go NED for years. I know this is something we will have to continually fight. He had bladder cancer 8 years ago, and melanoma on back five years ago (stage 1) so this is his third incidence. Thanks for the heads up on all your treatments….good to know what's out there and has success.
-
- November 28, 2016 at 5:48 pm
Yeah, I had a 4.5mm tumor in lower lip. stage 2b back in 2009 and was node clear. Was disease free for over 4 years. Disease progressed to stage 4 with 1 node/bone/soft tissue mets. Many surgeries, Ippi/Nivo and Chemo. failed. Started Pembro in Jan. 2016 and became NED. in July with an almost immediate response. I had Desmoplastic/Neurotropoic Melanoma really rare and amelonotic color. Slow growing
Good luck to Pop's (clear scans)
Paul
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- December 7, 2016 at 3:07 am
Yes. I had a similar experience. Diagnosed in July 2011 with Melanoma on the top of my head. Initial biopsy showed greater than 4mm and up to 5mm. Had a wle and sentinal biopsy done. The lymph nodes were clear and the tumor was close to 6mm. I was put at Stage 2. Continued observation. July of 2015, I noticed 2 spots on my back and 1 on my leg. Dermatologist found 2 more on my back. Biopsies confirmed that they were cancer. Now at Stage 4. Scans and MRI did not show anything interally. Decided to forego Yervoy or a Combo Trial until after 1st of year. January scan shows little change and decided to continue to observation while doing Holistic approach. New spot would show up every 3 months. Had 3 removed in June. Scan at end of July showed some changes in size of tumors. The day before my follow-up, I felt a "pea size" growth. Had surgery at end of October. Removed a "golf ball" size lymph plus a smaller one underneath it. Scan 2 weeks later show additional node "lighting up". Onc is sending me another onc in her office to discuss options. Also seeing a Naturalist. Looking to attack it from all sides.
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- December 7, 2016 at 3:07 am
Yes. I had a similar experience. Diagnosed in July 2011 with Melanoma on the top of my head. Initial biopsy showed greater than 4mm and up to 5mm. Had a wle and sentinal biopsy done. The lymph nodes were clear and the tumor was close to 6mm. I was put at Stage 2. Continued observation. July of 2015, I noticed 2 spots on my back and 1 on my leg. Dermatologist found 2 more on my back. Biopsies confirmed that they were cancer. Now at Stage 4. Scans and MRI did not show anything interally. Decided to forego Yervoy or a Combo Trial until after 1st of year. January scan shows little change and decided to continue to observation while doing Holistic approach. New spot would show up every 3 months. Had 3 removed in June. Scan at end of July showed some changes in size of tumors. The day before my follow-up, I felt a "pea size" growth. Had surgery at end of October. Removed a "golf ball" size lymph plus a smaller one underneath it. Scan 2 weeks later show additional node "lighting up". Onc is sending me another onc in her office to discuss options. Also seeing a Naturalist. Looking to attack it from all sides.
-
- December 7, 2016 at 3:07 am
Yes. I had a similar experience. Diagnosed in July 2011 with Melanoma on the top of my head. Initial biopsy showed greater than 4mm and up to 5mm. Had a wle and sentinal biopsy done. The lymph nodes were clear and the tumor was close to 6mm. I was put at Stage 2. Continued observation. July of 2015, I noticed 2 spots on my back and 1 on my leg. Dermatologist found 2 more on my back. Biopsies confirmed that they were cancer. Now at Stage 4. Scans and MRI did not show anything interally. Decided to forego Yervoy or a Combo Trial until after 1st of year. January scan shows little change and decided to continue to observation while doing Holistic approach. New spot would show up every 3 months. Had 3 removed in June. Scan at end of July showed some changes in size of tumors. The day before my follow-up, I felt a "pea size" growth. Had surgery at end of October. Removed a "golf ball" size lymph plus a smaller one underneath it. Scan 2 weeks later show additional node "lighting up". Onc is sending me another onc in her office to discuss options. Also seeing a Naturalist. Looking to attack it from all sides.
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