› Forums › General Melanoma Community › another reccurance
- This topic has 30 replies, 5 voices, and was last updated 9 years, 10 months ago by
DianaD.
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- July 25, 2015 at 3:17 pm
Well after signing papers for a trial in chicago Wednesday i got home and for some reason was looking at my scar. As i looked closer i noticed a bunch of small tiny dots up and down my scar very small. I immediately freaked out and called the derm to biopsy them. Again the cancer is back. Not sure how we are going to approach this. I’m pretty positive there is just to many to resect and even if the surgeon can I’m not sure it is worth it. The spots keep coming back very fast. My last scan was june 16th and mri was june 10 and so far have been clear. I did have the deeper groin dissection on june 25 because of positive node biopsy seen on june 16 scan. I have had no radiation or treatment just surgery since my diagnosis in april. I have had doctors tell me radiation doesn’t work but the radiologist thinks it might. My question is anyone have experienced anything like this? As of right now the trial is out because i have to be ned. My onc. At home thinks maybe radiation then ipi. I am seeing surgeon monday and then Dr Luke in Chicago on tues to get his opinion. Limb perfusion will not work because its too high on groin. Does systemic treatment work on superficial legions? If I’m 3c unresectable should that open up pd-1 to me and would it be worth trying them as first line drug? Also wondering if braf drugs might work on this although i don’t want to use them this early. I’m going insane with this crap it just keeps coming. Any help is appreciated thanks.Jamie
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- July 25, 2015 at 9:31 pm
You keep getting curve ball after curve ball, Jamie, but don't lose heart. Take things one step at a time, though you must feel like an Olympic hurdler after some of the things you've had to manage (I remember your post about getting into the trial, with all the miscommunication about eligibility). My first question is whether you are seeing a melanoma specialist as many MRFers are quick to recommend. It sounds to me like you are, so you are really doing all you can with vigilance, ealy detection and management of that recurrence, and persistence getting into a trial while you are stage III. Hang on til you have your meetings next week, who knows maybe getting back to NED for the trial will be faster than you think. You are young, strong and have plenty to fight for (I also have young kids) so take heart and keep on keeping on. I think your persistence is a great strength that you have as well as your self-education/judgement around treatments. It may not go smoothly but I think you are focused on the long game and that's great. Recurrence is a hurdle, not a wall, and you will clear it somehow.
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- July 25, 2015 at 9:31 pm
You keep getting curve ball after curve ball, Jamie, but don't lose heart. Take things one step at a time, though you must feel like an Olympic hurdler after some of the things you've had to manage (I remember your post about getting into the trial, with all the miscommunication about eligibility). My first question is whether you are seeing a melanoma specialist as many MRFers are quick to recommend. It sounds to me like you are, so you are really doing all you can with vigilance, ealy detection and management of that recurrence, and persistence getting into a trial while you are stage III. Hang on til you have your meetings next week, who knows maybe getting back to NED for the trial will be faster than you think. You are young, strong and have plenty to fight for (I also have young kids) so take heart and keep on keeping on. I think your persistence is a great strength that you have as well as your self-education/judgement around treatments. It may not go smoothly but I think you are focused on the long game and that's great. Recurrence is a hurdle, not a wall, and you will clear it somehow.
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- July 25, 2015 at 10:16 pm
Thanks stars,
I won’t give up but i have to admit I’m taking a mental beating right now. I am seeing Dr Jason Luke at university of Chicago and also had talks with Tom McFarland at UW Madison. one thing that drives me crazy is just how hard it is to talk to these big doctors. I wish my oncologist at home knew melanoma inside and out. He lets me text his personal cell and responds within 2 minutes almost always. When i text him about these spots he told to come right now so he could take a look. Sucks waiting and the feeling that this is on my leg is really hard for me to handle. like i said before i feel like a bomb. I need to get a plan i can get started on. -
- July 25, 2015 at 10:16 pm
Thanks stars,
I won’t give up but i have to admit I’m taking a mental beating right now. I am seeing Dr Jason Luke at university of Chicago and also had talks with Tom McFarland at UW Madison. one thing that drives me crazy is just how hard it is to talk to these big doctors. I wish my oncologist at home knew melanoma inside and out. He lets me text his personal cell and responds within 2 minutes almost always. When i text him about these spots he told to come right now so he could take a look. Sucks waiting and the feeling that this is on my leg is really hard for me to handle. like i said before i feel like a bomb. I need to get a plan i can get started on. -
- July 25, 2015 at 11:43 pm
Hi Jamie,
I'm sorry you are going through this. I am also 3C and seeing Dr Luke. My situation was a little different since I recurred in the lymph nodes. I wish I had advice but I did want to tell you that Dr. Luke has told me I can call his cell at any time. I just saw him two weeks ago and he stepped out of my appointment to speak with another patient. I have found his response time to be hours not minutes but that's not too bad. Take care
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- July 25, 2015 at 11:43 pm
Hi Jamie,
I'm sorry you are going through this. I am also 3C and seeing Dr Luke. My situation was a little different since I recurred in the lymph nodes. I wish I had advice but I did want to tell you that Dr. Luke has told me I can call his cell at any time. I just saw him two weeks ago and he stepped out of my appointment to speak with another patient. I have found his response time to be hours not minutes but that's not too bad. Take care
-
- July 25, 2015 at 11:43 pm
Hi Jamie,
I'm sorry you are going through this. I am also 3C and seeing Dr Luke. My situation was a little different since I recurred in the lymph nodes. I wish I had advice but I did want to tell you that Dr. Luke has told me I can call his cell at any time. I just saw him two weeks ago and he stepped out of my appointment to speak with another patient. I have found his response time to be hours not minutes but that's not too bad. Take care
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- July 26, 2015 at 12:13 am
I hear you, waiting for doctors, results etc is the worst. Time to make a list of strategies for waiting, because we all do alot of waiting as melanoma patients: this is what I did when I was waiting on pathology etc. My list was walking, cleaning, taking my kids on a great outing (icecream, the works), prayer, even making lists is better than doing nothing! Googling incessantly was one tactic (and still is) but it absolutely doesn't help much. I hear you on dr contact – I still haven't figured this one out. I live in a regional town, my skin cancer clinic is 1.5 hrs drive, I'm going to change up to a derm who is in the same building. I'm going to ask derm for a way of contacting him for urgent things – hopefully a mobile or email address. It's still a difficult thing for me to get to either of them, 3 hr round trip with lots of hassle around work and kids. I've spoken to my local / family GP who is 10 min up the road but didn't feel confident in him for some reason… it's good to know he's there for any immediate thing. Good luck, friend… remember to make that list and keep busy til those appointments.
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- July 26, 2015 at 12:13 am
I hear you, waiting for doctors, results etc is the worst. Time to make a list of strategies for waiting, because we all do alot of waiting as melanoma patients: this is what I did when I was waiting on pathology etc. My list was walking, cleaning, taking my kids on a great outing (icecream, the works), prayer, even making lists is better than doing nothing! Googling incessantly was one tactic (and still is) but it absolutely doesn't help much. I hear you on dr contact – I still haven't figured this one out. I live in a regional town, my skin cancer clinic is 1.5 hrs drive, I'm going to change up to a derm who is in the same building. I'm going to ask derm for a way of contacting him for urgent things – hopefully a mobile or email address. It's still a difficult thing for me to get to either of them, 3 hr round trip with lots of hassle around work and kids. I've spoken to my local / family GP who is 10 min up the road but didn't feel confident in him for some reason… it's good to know he's there for any immediate thing. Good luck, friend… remember to make that list and keep busy til those appointments.
-
- July 26, 2015 at 12:13 am
I hear you, waiting for doctors, results etc is the worst. Time to make a list of strategies for waiting, because we all do alot of waiting as melanoma patients: this is what I did when I was waiting on pathology etc. My list was walking, cleaning, taking my kids on a great outing (icecream, the works), prayer, even making lists is better than doing nothing! Googling incessantly was one tactic (and still is) but it absolutely doesn't help much. I hear you on dr contact – I still haven't figured this one out. I live in a regional town, my skin cancer clinic is 1.5 hrs drive, I'm going to change up to a derm who is in the same building. I'm going to ask derm for a way of contacting him for urgent things – hopefully a mobile or email address. It's still a difficult thing for me to get to either of them, 3 hr round trip with lots of hassle around work and kids. I've spoken to my local / family GP who is 10 min up the road but didn't feel confident in him for some reason… it's good to know he's there for any immediate thing. Good luck, friend… remember to make that list and keep busy til those appointments.
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- July 26, 2015 at 12:36 am
Thanks for the replies and stars your totally right i need to try to get back to a normal routine. I feel like I’m completely obsessed with reading about this shitty disease. I haven’t figured out a way to keep it blocked out yet… hopefully in time. -
- July 26, 2015 at 12:36 am
Thanks for the replies and stars your totally right i need to try to get back to a normal routine. I feel like I’m completely obsessed with reading about this shitty disease. I haven’t figured out a way to keep it blocked out yet… hopefully in time. -
- July 26, 2015 at 12:36 am
Thanks for the replies and stars your totally right i need to try to get back to a normal routine. I feel like I’m completely obsessed with reading about this shitty disease. I haven’t figured out a way to keep it blocked out yet… hopefully in time. -
- July 29, 2015 at 4:43 am
Jamie, I have had three breast surgeries at the University of Chicago (all benign), and I cannot speak highy enough of the medical center, its staff, its doctors and my particular surgeon, who has since left, but is still practicing in Chicago. Althoough I moved to Texas after my surgeries in Chicago, and I now live in Michigan, I continue to return to the Univeristy of Chicago for all major health issues. If it turns out that I have melanoma, I will go to the Univesity of Chicago for a second opinion, and, if I need surgery, I will likely return to the surgeon who operated on me three times at the University of Chicago. You could not be in better hands. Good luck.
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- July 29, 2015 at 4:43 am
Jamie, I have had three breast surgeries at the University of Chicago (all benign), and I cannot speak highy enough of the medical center, its staff, its doctors and my particular surgeon, who has since left, but is still practicing in Chicago. Althoough I moved to Texas after my surgeries in Chicago, and I now live in Michigan, I continue to return to the Univeristy of Chicago for all major health issues. If it turns out that I have melanoma, I will go to the Univesity of Chicago for a second opinion, and, if I need surgery, I will likely return to the surgeon who operated on me three times at the University of Chicago. You could not be in better hands. Good luck.
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- July 29, 2015 at 4:43 am
Jamie, I have had three breast surgeries at the University of Chicago (all benign), and I cannot speak highy enough of the medical center, its staff, its doctors and my particular surgeon, who has since left, but is still practicing in Chicago. Althoough I moved to Texas after my surgeries in Chicago, and I now live in Michigan, I continue to return to the Univeristy of Chicago for all major health issues. If it turns out that I have melanoma, I will go to the Univesity of Chicago for a second opinion, and, if I need surgery, I will likely return to the surgeon who operated on me three times at the University of Chicago. You could not be in better hands. Good luck.
-
- July 25, 2015 at 10:16 pm
Thanks stars,
I won’t give up but i have to admit I’m taking a mental beating right now. I am seeing Dr Jason Luke at university of Chicago and also had talks with Tom McFarland at UW Madison. one thing that drives me crazy is just how hard it is to talk to these big doctors. I wish my oncologist at home knew melanoma inside and out. He lets me text his personal cell and responds within 2 minutes almost always. When i text him about these spots he told to come right now so he could take a look. Sucks waiting and the feeling that this is on my leg is really hard for me to handle. like i said before i feel like a bomb. I need to get a plan i can get started on.
-
- July 25, 2015 at 9:31 pm
You keep getting curve ball after curve ball, Jamie, but don't lose heart. Take things one step at a time, though you must feel like an Olympic hurdler after some of the things you've had to manage (I remember your post about getting into the trial, with all the miscommunication about eligibility). My first question is whether you are seeing a melanoma specialist as many MRFers are quick to recommend. It sounds to me like you are, so you are really doing all you can with vigilance, ealy detection and management of that recurrence, and persistence getting into a trial while you are stage III. Hang on til you have your meetings next week, who knows maybe getting back to NED for the trial will be faster than you think. You are young, strong and have plenty to fight for (I also have young kids) so take heart and keep on keeping on. I think your persistence is a great strength that you have as well as your self-education/judgement around treatments. It may not go smoothly but I think you are focused on the long game and that's great. Recurrence is a hurdle, not a wall, and you will clear it somehow.
-
- July 26, 2015 at 12:58 am
I hear you Jamie. Hang in there! I've been experiencing something similar.
After the excision of the original tumor, and the lymph node biopsy, followed by a lymph node dissection, I was proclaimed disease free. Last summer I noticed three lumps under the skin around the original excision scar. My doctor ordered a new PET scan and I learned it was more melanoma. I went back under the knife last September, and, when the dressing came off, there were two new dark spots just above the area that had been excised in that surgery. My medical oncologist was perplexed that something could pop up that fast. My dermatologist agreed. He thought they were cysts, and I was thinking that maybe a cyst or something had absorbed some dye during the surgery. But no such luck. It was more melanoma.
I had another PET scan that revealed that one of the new spots was mildly "hot" and the others weren't. Probably because they were too small to light up on the scan. There was also a 7mm lesion in my right lung, that wasn't hot, again probably because of the size. I saw Dr. Sharfman at Johns Hopkins, who said that was probably "the real deal." So I started on Yervoy. I finished the four infusions in January.
As of my last scan, in May, the Yervoy seems to have held anything that was going on inside in check. The lung lesion had not changed over the past 2 scans, although this time, the scan was a CT instead of a PET, and it picked up two more very small spots in that same lung. Nobody is sure whether they were actually there before or not, but both my surgeon and my medical oncologist think that they probably were, and were much too small to show up on the PET.
The spots on my skin seem to have grown to a size, and stopped growing, which I take as indication that the Yervoy is helping. But new spots keep showing up. They're small, but they keep popping up. Those two that were there after surgery have now been joined by 5 more.
So I started on Keytruda last Thursday. We'll see how things go. Dr. Sharfman said that if the things on my skin are the only thing going on after a while, then it would make sense to go ahead and have them cut out.
Good luck to you, my friend!
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- July 26, 2015 at 12:58 am
I hear you Jamie. Hang in there! I've been experiencing something similar.
After the excision of the original tumor, and the lymph node biopsy, followed by a lymph node dissection, I was proclaimed disease free. Last summer I noticed three lumps under the skin around the original excision scar. My doctor ordered a new PET scan and I learned it was more melanoma. I went back under the knife last September, and, when the dressing came off, there were two new dark spots just above the area that had been excised in that surgery. My medical oncologist was perplexed that something could pop up that fast. My dermatologist agreed. He thought they were cysts, and I was thinking that maybe a cyst or something had absorbed some dye during the surgery. But no such luck. It was more melanoma.
I had another PET scan that revealed that one of the new spots was mildly "hot" and the others weren't. Probably because they were too small to light up on the scan. There was also a 7mm lesion in my right lung, that wasn't hot, again probably because of the size. I saw Dr. Sharfman at Johns Hopkins, who said that was probably "the real deal." So I started on Yervoy. I finished the four infusions in January.
As of my last scan, in May, the Yervoy seems to have held anything that was going on inside in check. The lung lesion had not changed over the past 2 scans, although this time, the scan was a CT instead of a PET, and it picked up two more very small spots in that same lung. Nobody is sure whether they were actually there before or not, but both my surgeon and my medical oncologist think that they probably were, and were much too small to show up on the PET.
The spots on my skin seem to have grown to a size, and stopped growing, which I take as indication that the Yervoy is helping. But new spots keep showing up. They're small, but they keep popping up. Those two that were there after surgery have now been joined by 5 more.
So I started on Keytruda last Thursday. We'll see how things go. Dr. Sharfman said that if the things on my skin are the only thing going on after a while, then it would make sense to go ahead and have them cut out.
Good luck to you, my friend!
-
- July 26, 2015 at 12:58 am
I hear you Jamie. Hang in there! I've been experiencing something similar.
After the excision of the original tumor, and the lymph node biopsy, followed by a lymph node dissection, I was proclaimed disease free. Last summer I noticed three lumps under the skin around the original excision scar. My doctor ordered a new PET scan and I learned it was more melanoma. I went back under the knife last September, and, when the dressing came off, there were two new dark spots just above the area that had been excised in that surgery. My medical oncologist was perplexed that something could pop up that fast. My dermatologist agreed. He thought they were cysts, and I was thinking that maybe a cyst or something had absorbed some dye during the surgery. But no such luck. It was more melanoma.
I had another PET scan that revealed that one of the new spots was mildly "hot" and the others weren't. Probably because they were too small to light up on the scan. There was also a 7mm lesion in my right lung, that wasn't hot, again probably because of the size. I saw Dr. Sharfman at Johns Hopkins, who said that was probably "the real deal." So I started on Yervoy. I finished the four infusions in January.
As of my last scan, in May, the Yervoy seems to have held anything that was going on inside in check. The lung lesion had not changed over the past 2 scans, although this time, the scan was a CT instead of a PET, and it picked up two more very small spots in that same lung. Nobody is sure whether they were actually there before or not, but both my surgeon and my medical oncologist think that they probably were, and were much too small to show up on the PET.
The spots on my skin seem to have grown to a size, and stopped growing, which I take as indication that the Yervoy is helping. But new spots keep showing up. They're small, but they keep popping up. Those two that were there after surgery have now been joined by 5 more.
So I started on Keytruda last Thursday. We'll see how things go. Dr. Sharfman said that if the things on my skin are the only thing going on after a while, then it would make sense to go ahead and have them cut out.
Good luck to you, my friend!
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