› Forums › General Melanoma Community › Scalp recurrences
- This topic has 36 replies, 4 voices, and was last updated 8 years, 8 months ago by
KimW.
- Post
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- September 9, 2015 at 10:18 pm
Hi!
Hope this finds all having a good day. I'm looking for information or any positive news regarding scalp melanoma and in-transit recurrences.
My husband (age 66) was diagnosed with melanoma last November and had a 1.25 mm lesion on the top of his head. He had a WLE and SNB in December and the pathology report showed the sentinel nodes on both sides of his neck to be clear. At the surgery follow-up in January, the doctor noticed a new spot about 2 inches from the scar, which came back as an in-transit recurrence after a punch biopsy. (Clean edges). He has had two more of the same spots on both sides of his head, and they too were both in-transits with clean edges. All were very small but I've learned by reading that it doesn't matter.
I'm scared to death now and everything I read on the Internet is full of such grim outcomes. I was wondering if any of you have had recurrences or scalp melanoma and have had any positive experiences? My husband's PET scans and neck ultrasounds have been clean so far, but we go next Tuesday once again for scans and I'm really nervous since he's had 4 recurrences.
Thank you,
kim
- Replies
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- September 9, 2015 at 11:46 pm
Hi Kim,
My melanoma was on the back of my hand, but I have had numerous (I stopped counting) intransits (and 2 recurrences) and (so far) the treatment I'm currently on (Keytruda) has gotten rid of all of them. I'll have scans on Monday, but I've no reason to think that my evidence of disease status will change. At Stage 3C, this doesn't get any better!!
The internet is a scary place for melanoma information. But much of it is old. This is also true of survival statistics for melanoma. They're at least 5 years old. And the research and drug options are changing often. This is why it's so important to be working with a melanoma specialist.
Shalom,
Julie
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- September 9, 2015 at 11:46 pm
Hi Kim,
My melanoma was on the back of my hand, but I have had numerous (I stopped counting) intransits (and 2 recurrences) and (so far) the treatment I'm currently on (Keytruda) has gotten rid of all of them. I'll have scans on Monday, but I've no reason to think that my evidence of disease status will change. At Stage 3C, this doesn't get any better!!
The internet is a scary place for melanoma information. But much of it is old. This is also true of survival statistics for melanoma. They're at least 5 years old. And the research and drug options are changing often. This is why it's so important to be working with a melanoma specialist.
Shalom,
Julie
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- September 10, 2015 at 12:10 am
Hi Julie!
Thank you for your response and sharing your story. Sounds like you're very familiar with this disease, in-transits, and treatments. You're exactly right about the Internet and those statistics. And it seems I find so little information on head melanoma successes. His age (although I don't consider 66 old) seems to worsen those prognostic statistics. I'm trying really hard to learn about the treatments he may be offered and I do see where there are so many that have become available in the past few years.
He is being treated at MD Anderson and I feel very fortunate to have them looking at him. I just hate the feeling of "watching and waiting" and it seems so likely that these spots are moving downward toward his lymph node basins.
You are such an inspiration and I'm so happy to see your success! It helps me realize that not all stories are bad. I am going to try to be positive and strong through his journey.
Thanks again!
kim
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- September 10, 2015 at 12:10 am
Hi Julie!
Thank you for your response and sharing your story. Sounds like you're very familiar with this disease, in-transits, and treatments. You're exactly right about the Internet and those statistics. And it seems I find so little information on head melanoma successes. His age (although I don't consider 66 old) seems to worsen those prognostic statistics. I'm trying really hard to learn about the treatments he may be offered and I do see where there are so many that have become available in the past few years.
He is being treated at MD Anderson and I feel very fortunate to have them looking at him. I just hate the feeling of "watching and waiting" and it seems so likely that these spots are moving downward toward his lymph node basins.
You are such an inspiration and I'm so happy to see your success! It helps me realize that not all stories are bad. I am going to try to be positive and strong through his journey.
Thanks again!
kim
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- September 10, 2015 at 12:10 am
Hi Julie!
Thank you for your response and sharing your story. Sounds like you're very familiar with this disease, in-transits, and treatments. You're exactly right about the Internet and those statistics. And it seems I find so little information on head melanoma successes. His age (although I don't consider 66 old) seems to worsen those prognostic statistics. I'm trying really hard to learn about the treatments he may be offered and I do see where there are so many that have become available in the past few years.
He is being treated at MD Anderson and I feel very fortunate to have them looking at him. I just hate the feeling of "watching and waiting" and it seems so likely that these spots are moving downward toward his lymph node basins.
You are such an inspiration and I'm so happy to see your success! It helps me realize that not all stories are bad. I am going to try to be positive and strong through his journey.
Thanks again!
kim
-
- September 9, 2015 at 11:46 pm
Hi Kim,
My melanoma was on the back of my hand, but I have had numerous (I stopped counting) intransits (and 2 recurrences) and (so far) the treatment I'm currently on (Keytruda) has gotten rid of all of them. I'll have scans on Monday, but I've no reason to think that my evidence of disease status will change. At Stage 3C, this doesn't get any better!!
The internet is a scary place for melanoma information. But much of it is old. This is also true of survival statistics for melanoma. They're at least 5 years old. And the research and drug options are changing often. This is why it's so important to be working with a melanoma specialist.
Shalom,
Julie
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- September 10, 2015 at 5:29 am
I know that you're husband has had a PET scan, but has a MRI of the brain ever been done and was the PET scan recent?
My Mom had melanoma appear on her scalp. Once that was diagnosed she had CT and PET scans and a MRI of her brain. She was at Stage IV with brain mets and 6 tumors in her trunk and the tumors on her scalp. – The brain MRI was misread and we only found out later ,after a third opinion, that she had brain mets.
I honestly always recommend a second and third opinion on treatment now and make sure that any images are read. It's always good to feel that you've covered your bases. – And make sure that he see's a melanoma specialists.
Good luck.
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- September 10, 2015 at 5:29 am
I know that you're husband has had a PET scan, but has a MRI of the brain ever been done and was the PET scan recent?
My Mom had melanoma appear on her scalp. Once that was diagnosed she had CT and PET scans and a MRI of her brain. She was at Stage IV with brain mets and 6 tumors in her trunk and the tumors on her scalp. – The brain MRI was misread and we only found out later ,after a third opinion, that she had brain mets.
I honestly always recommend a second and third opinion on treatment now and make sure that any images are read. It's always good to feel that you've covered your bases. – And make sure that he see's a melanoma specialists.
Good luck.
-
- September 10, 2015 at 5:29 am
I know that you're husband has had a PET scan, but has a MRI of the brain ever been done and was the PET scan recent?
My Mom had melanoma appear on her scalp. Once that was diagnosed she had CT and PET scans and a MRI of her brain. She was at Stage IV with brain mets and 6 tumors in her trunk and the tumors on her scalp. – The brain MRI was misread and we only found out later ,after a third opinion, that she had brain mets.
I honestly always recommend a second and third opinion on treatment now and make sure that any images are read. It's always good to feel that you've covered your bases. – And make sure that he see's a melanoma specialists.
Good luck.
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- September 10, 2015 at 1:43 pm
Hello Kim,
My husband was 57 when he had his first go with melanoma in Jan. 2008 and it was on his scalp but much larger. His was 10.5 mm and he had a SNB and a WLE with a skin graft. His SNB came back neg. and they said the margins were clear it was about the size of a grapefruit that they cinched in to about 2.5 to 3 inches in diameter. He went many months and had another show up on his scalp and then another which was right on the surgery line of the second one and another skin graft. Next he had one on his neck at the collar bone area. Then another one showed up and was pressing on the cervical spine at the C1 C2 area and was unresectable as it would leave him a paraplegic. Scans showed in Oct. 2010 that along with the unresectable one he also had liver and lung involvement.
In March 2011 he began the clinical trial for Ipi and was getting 10 mg/kg IV and GMCSF daily self injections. He did the 4 doses in 12 weeks and his clinical trial had a maintenance phase where after that you would do an IV every 12 weeks and the whole time for 14 days self inject GMCSF with 7 days off and then back on for 14. You can read more in his profile.
Now for the good news in Oct. 2012 he became NED and has stayed that way ever since. He went off of the maintenance phase in Dec. 2013 and has remained NED.
Judy (loving wife of Gene Stage IV and now NED)
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- September 10, 2015 at 1:43 pm
Hello Kim,
My husband was 57 when he had his first go with melanoma in Jan. 2008 and it was on his scalp but much larger. His was 10.5 mm and he had a SNB and a WLE with a skin graft. His SNB came back neg. and they said the margins were clear it was about the size of a grapefruit that they cinched in to about 2.5 to 3 inches in diameter. He went many months and had another show up on his scalp and then another which was right on the surgery line of the second one and another skin graft. Next he had one on his neck at the collar bone area. Then another one showed up and was pressing on the cervical spine at the C1 C2 area and was unresectable as it would leave him a paraplegic. Scans showed in Oct. 2010 that along with the unresectable one he also had liver and lung involvement.
In March 2011 he began the clinical trial for Ipi and was getting 10 mg/kg IV and GMCSF daily self injections. He did the 4 doses in 12 weeks and his clinical trial had a maintenance phase where after that you would do an IV every 12 weeks and the whole time for 14 days self inject GMCSF with 7 days off and then back on for 14. You can read more in his profile.
Now for the good news in Oct. 2012 he became NED and has stayed that way ever since. He went off of the maintenance phase in Dec. 2013 and has remained NED.
Judy (loving wife of Gene Stage IV and now NED)
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- September 10, 2015 at 3:00 pm
Patina,
Thank you for your response and I'm sorry that your mom is having to fight this beast. My husband had a brain MRI in February along with a PET scan. He had another PET scan and neck ultrasound in May. Those were clear. He is scheduled to have another PET scan and neck ultrasound/biopsy on Tuesday. It is so scary that your mom's tests were mis-read. I am very nervous about these next tests because of these frequent lesions that keep appearing on his head and neck. It seems they are getting them off (biopsy) early but that isn't slowing things down a bit.
How is your mom doing now? I'm trying to look ahead to the "when's and what if's" of a spread and stage 4 diagnosis – not because I'm a negative thinker, but just trying to be realistic and learn about what the next step might be.
is your mom having success with treatments? I hope so! It seems the treatment options are better today than they were a few years ago? Still, it's a beast!
Thanks again!
-
- September 10, 2015 at 3:00 pm
Patina,
Thank you for your response and I'm sorry that your mom is having to fight this beast. My husband had a brain MRI in February along with a PET scan. He had another PET scan and neck ultrasound in May. Those were clear. He is scheduled to have another PET scan and neck ultrasound/biopsy on Tuesday. It is so scary that your mom's tests were mis-read. I am very nervous about these next tests because of these frequent lesions that keep appearing on his head and neck. It seems they are getting them off (biopsy) early but that isn't slowing things down a bit.
How is your mom doing now? I'm trying to look ahead to the "when's and what if's" of a spread and stage 4 diagnosis – not because I'm a negative thinker, but just trying to be realistic and learn about what the next step might be.
is your mom having success with treatments? I hope so! It seems the treatment options are better today than they were a few years ago? Still, it's a beast!
Thanks again!
-
- September 10, 2015 at 5:50 pm
Hi Kim,
My Mom was diagnosed with Melanoma at the end of October in 2013. We found out how extensive it "was", Stage IV, n early November and found out that she also had brain mets later that month.
She had Gamma Knife Radiation on December 9 for 8 of 9 brain mets, started Yervoy on the 12th of December and had just an amazing reaction. 3 to 4 days after the infusion the tumors on her head started itching and tingling, by two week out the tumors on her head and the one on her neck were firmer and had started shrinking before the second infusion. We asked if they Yervoy was "working" but Dr. Wong (at USC) said he couldn't really say anything until after they got the results of the CT scans after the forth infusion. When we came back for the third infusion Dr. Wong was asking if we had taken any photos. Many of the tumors were gone, with just a blue coloring where they had been and the tumor on her neck, which was the size of a large bird egg, (she was being treated for a sinus infection and had cancer!) was gone.
Unfortunately she had a severe case of colitis, which delayed her infusion for a few months. But in the meantime CT scans were good and by the time she got the third infusion all the tumors on her head were gone with most blue coloring gone as well.
She did have 17 new brain mets treated in April of 2014 and everything went very well with the Gamma Knife Radiation treatment by Dr. Chang at USC. (She had been treated elsewhere for the first Gamma Knife Radiation treatment and the radiation oncologist and neuroncologist we had been sent to were terrible.) – We moved everything to USC and could not be in better hands.
The tumors in her trunk continued to shrink and all but one treated brain met has been stable from mid April of 2014 to June of 2015. She was diagnosed with a reoccurrence in June. She had a craniotomy in late June, everything went well. But was diagnosed with the first new brain met in August of this year and has been treated with gamma knife radiation again.
Because of the reoccurrence she planed on started on Keytruda for a year every 3 weeks. – Her first treatment was this week.
She is just as active, if not more so, since her original diagnosis. She has had no cognitive issues from having 26 brain mets treated and a craniotomy for a reoccurrence. We have been told tat because of her strong reaction to Yervoy that she should have just as good if not better results with Keytruda. So, we are hopeful that this treatment will be very beneficial for her.
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- September 10, 2015 at 5:50 pm
Hi Kim,
My Mom was diagnosed with Melanoma at the end of October in 2013. We found out how extensive it "was", Stage IV, n early November and found out that she also had brain mets later that month.
She had Gamma Knife Radiation on December 9 for 8 of 9 brain mets, started Yervoy on the 12th of December and had just an amazing reaction. 3 to 4 days after the infusion the tumors on her head started itching and tingling, by two week out the tumors on her head and the one on her neck were firmer and had started shrinking before the second infusion. We asked if they Yervoy was "working" but Dr. Wong (at USC) said he couldn't really say anything until after they got the results of the CT scans after the forth infusion. When we came back for the third infusion Dr. Wong was asking if we had taken any photos. Many of the tumors were gone, with just a blue coloring where they had been and the tumor on her neck, which was the size of a large bird egg, (she was being treated for a sinus infection and had cancer!) was gone.
Unfortunately she had a severe case of colitis, which delayed her infusion for a few months. But in the meantime CT scans were good and by the time she got the third infusion all the tumors on her head were gone with most blue coloring gone as well.
She did have 17 new brain mets treated in April of 2014 and everything went very well with the Gamma Knife Radiation treatment by Dr. Chang at USC. (She had been treated elsewhere for the first Gamma Knife Radiation treatment and the radiation oncologist and neuroncologist we had been sent to were terrible.) – We moved everything to USC and could not be in better hands.
The tumors in her trunk continued to shrink and all but one treated brain met has been stable from mid April of 2014 to June of 2015. She was diagnosed with a reoccurrence in June. She had a craniotomy in late June, everything went well. But was diagnosed with the first new brain met in August of this year and has been treated with gamma knife radiation again.
Because of the reoccurrence she planed on started on Keytruda for a year every 3 weeks. – Her first treatment was this week.
She is just as active, if not more so, since her original diagnosis. She has had no cognitive issues from having 26 brain mets treated and a craniotomy for a reoccurrence. We have been told tat because of her strong reaction to Yervoy that she should have just as good if not better results with Keytruda. So, we are hopeful that this treatment will be very beneficial for her.
-
- September 10, 2015 at 5:50 pm
Hi Kim,
My Mom was diagnosed with Melanoma at the end of October in 2013. We found out how extensive it "was", Stage IV, n early November and found out that she also had brain mets later that month.
She had Gamma Knife Radiation on December 9 for 8 of 9 brain mets, started Yervoy on the 12th of December and had just an amazing reaction. 3 to 4 days after the infusion the tumors on her head started itching and tingling, by two week out the tumors on her head and the one on her neck were firmer and had started shrinking before the second infusion. We asked if they Yervoy was "working" but Dr. Wong (at USC) said he couldn't really say anything until after they got the results of the CT scans after the forth infusion. When we came back for the third infusion Dr. Wong was asking if we had taken any photos. Many of the tumors were gone, with just a blue coloring where they had been and the tumor on her neck, which was the size of a large bird egg, (she was being treated for a sinus infection and had cancer!) was gone.
Unfortunately she had a severe case of colitis, which delayed her infusion for a few months. But in the meantime CT scans were good and by the time she got the third infusion all the tumors on her head were gone with most blue coloring gone as well.
She did have 17 new brain mets treated in April of 2014 and everything went very well with the Gamma Knife Radiation treatment by Dr. Chang at USC. (She had been treated elsewhere for the first Gamma Knife Radiation treatment and the radiation oncologist and neuroncologist we had been sent to were terrible.) – We moved everything to USC and could not be in better hands.
The tumors in her trunk continued to shrink and all but one treated brain met has been stable from mid April of 2014 to June of 2015. She was diagnosed with a reoccurrence in June. She had a craniotomy in late June, everything went well. But was diagnosed with the first new brain met in August of this year and has been treated with gamma knife radiation again.
Because of the reoccurrence she planed on started on Keytruda for a year every 3 weeks. – Her first treatment was this week.
She is just as active, if not more so, since her original diagnosis. She has had no cognitive issues from having 26 brain mets treated and a craniotomy for a reoccurrence. We have been told tat because of her strong reaction to Yervoy that she should have just as good if not better results with Keytruda. So, we are hopeful that this treatment will be very beneficial for her.
-
- September 10, 2015 at 6:19 pm
Oh my gosh! I was almost afraid to ask you how she was doing when I responded to your earlier post! I am so thrilled for her and for you, too! Although I'm sure the journey is no "cake walk" to go through for you all, it's great that she has been such a great responder! I'm amazed at all they have done regarding the tumors! The gamma knife radiation sounds very promising and it's incredible they can even do that. Is it done while being hospitalized or is it an outpatient procedure? How were the side affects? I'm not sure I know what the craniotomy is either? I'm sorry for this one new recurrence but after 26 successes, I bet the keytruda does the trick. It sounds like you all are being very vigilant and the doctors are staying a step ahead! I hope she responds quickly and very positively! The brain just sounds so scary- but I know it's a common place for melanoma to go. If you don't mind me asking, how old is your mom? I worry about my husband's age (66) and what all they will be recommending to try.
Thank you for sharing her ongoing story and I pray she continues to be active and responds well to Keytruda. Please stay in touch! This board is so very helpful and there is so much knowledge from others (like your mom) to share. I find other cases similar to my husband's, only to realize that the post was from 2011 and never been updated. That's either good in that they're out enjoying life or bad. 🙁
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- September 10, 2015 at 6:19 pm
Oh my gosh! I was almost afraid to ask you how she was doing when I responded to your earlier post! I am so thrilled for her and for you, too! Although I'm sure the journey is no "cake walk" to go through for you all, it's great that she has been such a great responder! I'm amazed at all they have done regarding the tumors! The gamma knife radiation sounds very promising and it's incredible they can even do that. Is it done while being hospitalized or is it an outpatient procedure? How were the side affects? I'm not sure I know what the craniotomy is either? I'm sorry for this one new recurrence but after 26 successes, I bet the keytruda does the trick. It sounds like you all are being very vigilant and the doctors are staying a step ahead! I hope she responds quickly and very positively! The brain just sounds so scary- but I know it's a common place for melanoma to go. If you don't mind me asking, how old is your mom? I worry about my husband's age (66) and what all they will be recommending to try.
Thank you for sharing her ongoing story and I pray she continues to be active and responds well to Keytruda. Please stay in touch! This board is so very helpful and there is so much knowledge from others (like your mom) to share. I find other cases similar to my husband's, only to realize that the post was from 2011 and never been updated. That's either good in that they're out enjoying life or bad. 🙁
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- September 11, 2015 at 8:05 pm
My Mom has said the only thing that would have killed her was the oral thrush she had, not the cancer.. Besides the colitis, that was the worst part of the treatment.
Gamma Knife Radiation is an outpatient procedure and besides being exhausted the only issue my Mom had was a stiff neck. Not real side effects for her. You do need to make sure that you take Keppra to prevent seizures and make sure that the DMV in your state does not require you to retake your DMV tests for recertification. Your insurance company may NOT cover any traffic accidents if you are not recertified to drive after a procedure like this.
My Mom was 77 when she was diagnosed and is now 79. She is not your typical 79 year old and is supper active…
Good luck with everything.
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- September 11, 2015 at 8:05 pm
My Mom has said the only thing that would have killed her was the oral thrush she had, not the cancer.. Besides the colitis, that was the worst part of the treatment.
Gamma Knife Radiation is an outpatient procedure and besides being exhausted the only issue my Mom had was a stiff neck. Not real side effects for her. You do need to make sure that you take Keppra to prevent seizures and make sure that the DMV in your state does not require you to retake your DMV tests for recertification. Your insurance company may NOT cover any traffic accidents if you are not recertified to drive after a procedure like this.
My Mom was 77 when she was diagnosed and is now 79. She is not your typical 79 year old and is supper active…
Good luck with everything.
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- September 13, 2015 at 5:38 pm
Patina,
Your mom sounds incredibly strong and healthy! Not that 77 is old, but I'm sure her active and youthful lifestyle is the reason she's done so well. Thank you for the good information and it's great to see such success!
I'm so nervous about the upcoming scans but also know that it is what it is. Just hoping I can be as strong as you all are throughout his journey. One day at a time…
Thank you again and please keep us posted on your mom's story! I find it so enlightening to see others who do well!
kim
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- September 13, 2015 at 5:38 pm
Patina,
Your mom sounds incredibly strong and healthy! Not that 77 is old, but I'm sure her active and youthful lifestyle is the reason she's done so well. Thank you for the good information and it's great to see such success!
I'm so nervous about the upcoming scans but also know that it is what it is. Just hoping I can be as strong as you all are throughout his journey. One day at a time…
Thank you again and please keep us posted on your mom's story! I find it so enlightening to see others who do well!
kim
-
- September 13, 2015 at 5:38 pm
Patina,
Your mom sounds incredibly strong and healthy! Not that 77 is old, but I'm sure her active and youthful lifestyle is the reason she's done so well. Thank you for the good information and it's great to see such success!
I'm so nervous about the upcoming scans but also know that it is what it is. Just hoping I can be as strong as you all are throughout his journey. One day at a time…
Thank you again and please keep us posted on your mom's story! I find it so enlightening to see others who do well!
kim
-
- September 11, 2015 at 8:05 pm
My Mom has said the only thing that would have killed her was the oral thrush she had, not the cancer.. Besides the colitis, that was the worst part of the treatment.
Gamma Knife Radiation is an outpatient procedure and besides being exhausted the only issue my Mom had was a stiff neck. Not real side effects for her. You do need to make sure that you take Keppra to prevent seizures and make sure that the DMV in your state does not require you to retake your DMV tests for recertification. Your insurance company may NOT cover any traffic accidents if you are not recertified to drive after a procedure like this.
My Mom was 77 when she was diagnosed and is now 79. She is not your typical 79 year old and is supper active…
Good luck with everything.
-
- September 10, 2015 at 6:19 pm
Oh my gosh! I was almost afraid to ask you how she was doing when I responded to your earlier post! I am so thrilled for her and for you, too! Although I'm sure the journey is no "cake walk" to go through for you all, it's great that she has been such a great responder! I'm amazed at all they have done regarding the tumors! The gamma knife radiation sounds very promising and it's incredible they can even do that. Is it done while being hospitalized or is it an outpatient procedure? How were the side affects? I'm not sure I know what the craniotomy is either? I'm sorry for this one new recurrence but after 26 successes, I bet the keytruda does the trick. It sounds like you all are being very vigilant and the doctors are staying a step ahead! I hope she responds quickly and very positively! The brain just sounds so scary- but I know it's a common place for melanoma to go. If you don't mind me asking, how old is your mom? I worry about my husband's age (66) and what all they will be recommending to try.
Thank you for sharing her ongoing story and I pray she continues to be active and responds well to Keytruda. Please stay in touch! This board is so very helpful and there is so much knowledge from others (like your mom) to share. I find other cases similar to my husband's, only to realize that the post was from 2011 and never been updated. That's either good in that they're out enjoying life or bad. 🙁
-
- September 10, 2015 at 3:00 pm
Patina,
Thank you for your response and I'm sorry that your mom is having to fight this beast. My husband had a brain MRI in February along with a PET scan. He had another PET scan and neck ultrasound in May. Those were clear. He is scheduled to have another PET scan and neck ultrasound/biopsy on Tuesday. It is so scary that your mom's tests were mis-read. I am very nervous about these next tests because of these frequent lesions that keep appearing on his head and neck. It seems they are getting them off (biopsy) early but that isn't slowing things down a bit.
How is your mom doing now? I'm trying to look ahead to the "when's and what if's" of a spread and stage 4 diagnosis – not because I'm a negative thinker, but just trying to be realistic and learn about what the next step might be.
is your mom having success with treatments? I hope so! It seems the treatment options are better today than they were a few years ago? Still, it's a beast!
Thanks again!
-
- September 10, 2015 at 3:27 pm
Wow, Judy!
Your story is very enlightening and such a positive reprieve! That is wonderful that he is and has remained NED!! 🙂
it sounds very similar although your husband's recurrences took longer to show up. I'm assuming so if he went from Jan 08 until Oct 2011. I'm so amazed at the journey you and so many others face with such strength. I am trying so hard to stay positive and hopeful and I always act that way in front of him;however, I'm a worried mess emotionally. I'm sure you have felt the same way at some point. My husband has had 4 new tiny spots removed and I noticed a new one (possibly 2) this past week. I have learned to spot the fast and early but I worry what is going on under the skin much more. The in-transit cells are obviously active and it's so hard to know their next move. That's the obvious problem with melanoma, huh? The doctors would love to be able to see them too! Hence, possible cure! (Wishful thinking!)Was your husband's original primary a cutaneous lesion or nodular and more under the skin? Ours was a dark spot- almost black that appeared. I'm not very educated yet on the different types or prognostic factors and am overwhelmed trying to learn about the different treatments. But, I'm reading and learning every day from the Internet and nice folks like you!
Once we get through next week and have scan results back, I'll know more and I'll try to think of people like your husband to remind me that people do defy the odds and there's always hope. Thank you for sharing your journey and I know Gene is so proud to have you as his wife and caretaker! I think seeing my husband trying so hard to brave, yet I can tell he's not sleeping well and knowing he's trying to protect me. He's the most selfless person on earth and seeing him go through this is the hardest thing ever. You know.
Thank you so much!
Kim
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- September 10, 2015 at 3:27 pm
Wow, Judy!
Your story is very enlightening and such a positive reprieve! That is wonderful that he is and has remained NED!! 🙂
it sounds very similar although your husband's recurrences took longer to show up. I'm assuming so if he went from Jan 08 until Oct 2011. I'm so amazed at the journey you and so many others face with such strength. I am trying so hard to stay positive and hopeful and I always act that way in front of him;however, I'm a worried mess emotionally. I'm sure you have felt the same way at some point. My husband has had 4 new tiny spots removed and I noticed a new one (possibly 2) this past week. I have learned to spot the fast and early but I worry what is going on under the skin much more. The in-transit cells are obviously active and it's so hard to know their next move. That's the obvious problem with melanoma, huh? The doctors would love to be able to see them too! Hence, possible cure! (Wishful thinking!)Was your husband's original primary a cutaneous lesion or nodular and more under the skin? Ours was a dark spot- almost black that appeared. I'm not very educated yet on the different types or prognostic factors and am overwhelmed trying to learn about the different treatments. But, I'm reading and learning every day from the Internet and nice folks like you!
Once we get through next week and have scan results back, I'll know more and I'll try to think of people like your husband to remind me that people do defy the odds and there's always hope. Thank you for sharing your journey and I know Gene is so proud to have you as his wife and caretaker! I think seeing my husband trying so hard to brave, yet I can tell he's not sleeping well and knowing he's trying to protect me. He's the most selfless person on earth and seeing him go through this is the hardest thing ever. You know.
Thank you so much!
Kim
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- September 11, 2015 at 12:39 am
Hi Kim,
He had a mole that turned black and started raising. He had a pylar cyst at the same time and the derm thought this was also pylar but results came back melanoma.
After 4 surgeries is when the unresectable was found and it all happened in 2 years 10 months time.
When he had the unresectable diagnosed in Oct. and by Mar. when he started into the clinical trial he had 4 sub q's in the same area as the unresectable. We took pictures every three weeks and watched them shrink and disappear. It was amazing.
Yes life has really had its ups and downs since 2008 as he also had 5 retina detachment surgeries in 2009 and 10. Our daughter had cervical cancer in Feb. 2010. She was diagnosed last July 2014 with colon cancer and peritoneal cancer and passed on July 26th 2015. She leaves 4 children all teen agers but the oldest and he has Down Syndrome so yes we are beyond stressed and neither of us sleeps well.
Judy
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- September 11, 2015 at 12:39 am
Hi Kim,
He had a mole that turned black and started raising. He had a pylar cyst at the same time and the derm thought this was also pylar but results came back melanoma.
After 4 surgeries is when the unresectable was found and it all happened in 2 years 10 months time.
When he had the unresectable diagnosed in Oct. and by Mar. when he started into the clinical trial he had 4 sub q's in the same area as the unresectable. We took pictures every three weeks and watched them shrink and disappear. It was amazing.
Yes life has really had its ups and downs since 2008 as he also had 5 retina detachment surgeries in 2009 and 10. Our daughter had cervical cancer in Feb. 2010. She was diagnosed last July 2014 with colon cancer and peritoneal cancer and passed on July 26th 2015. She leaves 4 children all teen agers but the oldest and he has Down Syndrome so yes we are beyond stressed and neither of us sleeps well.
Judy
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- September 13, 2015 at 5:19 pm
Judy, I'm so very sorry about your daughter. My goodness, you've certainly had your share of heartache and stress and I find you just amazing because of your positive attitude. You are a true hero to be so uplifting to others and so caring! I will find strength thinking of you and your family and knowing that being positive is so important.
I'm still waiting on MD Anderson to send a confirmation that they did, in fact, move my hubby's scans up to this Tuesday. If not, our appointments are for next Tuesday the 22nd. Scanxiety is in full swing today but I'm praying for strength and comfort. Will keep you posted.
Thank you for your kindness!
Kim
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- September 13, 2015 at 5:19 pm
Judy, I'm so very sorry about your daughter. My goodness, you've certainly had your share of heartache and stress and I find you just amazing because of your positive attitude. You are a true hero to be so uplifting to others and so caring! I will find strength thinking of you and your family and knowing that being positive is so important.
I'm still waiting on MD Anderson to send a confirmation that they did, in fact, move my hubby's scans up to this Tuesday. If not, our appointments are for next Tuesday the 22nd. Scanxiety is in full swing today but I'm praying for strength and comfort. Will keep you posted.
Thank you for your kindness!
Kim
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- September 13, 2015 at 5:19 pm
Judy, I'm so very sorry about your daughter. My goodness, you've certainly had your share of heartache and stress and I find you just amazing because of your positive attitude. You are a true hero to be so uplifting to others and so caring! I will find strength thinking of you and your family and knowing that being positive is so important.
I'm still waiting on MD Anderson to send a confirmation that they did, in fact, move my hubby's scans up to this Tuesday. If not, our appointments are for next Tuesday the 22nd. Scanxiety is in full swing today but I'm praying for strength and comfort. Will keep you posted.
Thank you for your kindness!
Kim
-
- September 11, 2015 at 12:39 am
Hi Kim,
He had a mole that turned black and started raising. He had a pylar cyst at the same time and the derm thought this was also pylar but results came back melanoma.
After 4 surgeries is when the unresectable was found and it all happened in 2 years 10 months time.
When he had the unresectable diagnosed in Oct. and by Mar. when he started into the clinical trial he had 4 sub q's in the same area as the unresectable. We took pictures every three weeks and watched them shrink and disappear. It was amazing.
Yes life has really had its ups and downs since 2008 as he also had 5 retina detachment surgeries in 2009 and 10. Our daughter had cervical cancer in Feb. 2010. She was diagnosed last July 2014 with colon cancer and peritoneal cancer and passed on July 26th 2015. She leaves 4 children all teen agers but the oldest and he has Down Syndrome so yes we are beyond stressed and neither of us sleeps well.
Judy
-
- September 10, 2015 at 3:27 pm
Wow, Judy!
Your story is very enlightening and such a positive reprieve! That is wonderful that he is and has remained NED!! 🙂
it sounds very similar although your husband's recurrences took longer to show up. I'm assuming so if he went from Jan 08 until Oct 2011. I'm so amazed at the journey you and so many others face with such strength. I am trying so hard to stay positive and hopeful and I always act that way in front of him;however, I'm a worried mess emotionally. I'm sure you have felt the same way at some point. My husband has had 4 new tiny spots removed and I noticed a new one (possibly 2) this past week. I have learned to spot the fast and early but I worry what is going on under the skin much more. The in-transit cells are obviously active and it's so hard to know their next move. That's the obvious problem with melanoma, huh? The doctors would love to be able to see them too! Hence, possible cure! (Wishful thinking!)Was your husband's original primary a cutaneous lesion or nodular and more under the skin? Ours was a dark spot- almost black that appeared. I'm not very educated yet on the different types or prognostic factors and am overwhelmed trying to learn about the different treatments. But, I'm reading and learning every day from the Internet and nice folks like you!
Once we get through next week and have scan results back, I'll know more and I'll try to think of people like your husband to remind me that people do defy the odds and there's always hope. Thank you for sharing your journey and I know Gene is so proud to have you as his wife and caretaker! I think seeing my husband trying so hard to brave, yet I can tell he's not sleeping well and knowing he's trying to protect me. He's the most selfless person on earth and seeing him go through this is the hardest thing ever. You know.
Thank you so much!
Kim
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- September 10, 2015 at 1:43 pm
Hello Kim,
My husband was 57 when he had his first go with melanoma in Jan. 2008 and it was on his scalp but much larger. His was 10.5 mm and he had a SNB and a WLE with a skin graft. His SNB came back neg. and they said the margins were clear it was about the size of a grapefruit that they cinched in to about 2.5 to 3 inches in diameter. He went many months and had another show up on his scalp and then another which was right on the surgery line of the second one and another skin graft. Next he had one on his neck at the collar bone area. Then another one showed up and was pressing on the cervical spine at the C1 C2 area and was unresectable as it would leave him a paraplegic. Scans showed in Oct. 2010 that along with the unresectable one he also had liver and lung involvement.
In March 2011 he began the clinical trial for Ipi and was getting 10 mg/kg IV and GMCSF daily self injections. He did the 4 doses in 12 weeks and his clinical trial had a maintenance phase where after that you would do an IV every 12 weeks and the whole time for 14 days self inject GMCSF with 7 days off and then back on for 14. You can read more in his profile.
Now for the good news in Oct. 2012 he became NED and has stayed that way ever since. He went off of the maintenance phase in Dec. 2013 and has remained NED.
Judy (loving wife of Gene Stage IV and now NED)
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