› Forums › General Melanoma Community › Dad Diagnosed with Metastatic Melanoma 1 month ago….now it’s gone??
- This topic has 12 replies, 4 voices, and was last updated 8 years, 2 months ago by
MoiraM.
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- February 25, 2016 at 3:05 pm
Hello,
My name is Kayla and I am the daughter of nothing short of a true hero. He is 57 years old and the best dad/grandpa anyone could ask for. He was hospitalized Jan 22 with stroke symptoms, lossbof functionality in right leg and arm, wicked headache, confusion etc. It was determined that he had one large bleeding brain tumor and two small ones which were deeper but not bleeding. The large one was resected and the other two irradiated with gamma. He has since gained full function of his arm and leg. After many tests and scans the primary site was not located, nor was any additional mets or cancer anywhere else.
Originally, there was talk that we would immediately start immunotherapy after gamma. Just over a month later, after learning he was BRAF negative and "free of measurable disease" he would not be treated right now and would just be watched with scans every 8 weeks.
I am here because while my family rejoices I can't seem to find my happiness. I am incredibly grateful, and feel very blessed, lucky, whatever you want to call it that round one with this beast was so successful. But the waiting game is so hard for me. So for now, I will be lurking here, reading stories of long term survivors and long terms between recurrence, and feeling ungrateful for the existence of this awful disease.
I figured I would introduce myself if I will be reading your personal thoughts and stories. And please know that I do understand that some of you are fighting much harder battles right now and in no way mean to belittle that with my emotions of being unhappy during this happy time.
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- February 25, 2016 at 5:52 pm
Hi, Kayla. I'm so sorry that you have to be here. It is excellent news that your father is NED (no evidence of disease)! I am surprised that the doctors are not offering any systemic treatment at this time, although his BRAF-negative status probably influenced that decision. May I ask — is he being treated by a melanoma specialist at a major medical center?
There are many folks here who are much more versed in Stage 4 treatments than myself. I'm sure they will be along shortly to provide their opinions.
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- February 25, 2016 at 5:52 pm
Hi, Kayla. I'm so sorry that you have to be here. It is excellent news that your father is NED (no evidence of disease)! I am surprised that the doctors are not offering any systemic treatment at this time, although his BRAF-negative status probably influenced that decision. May I ask — is he being treated by a melanoma specialist at a major medical center?
There are many folks here who are much more versed in Stage 4 treatments than myself. I'm sure they will be along shortly to provide their opinions.
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- February 25, 2016 at 5:52 pm
Hi, Kayla. I'm so sorry that you have to be here. It is excellent news that your father is NED (no evidence of disease)! I am surprised that the doctors are not offering any systemic treatment at this time, although his BRAF-negative status probably influenced that decision. May I ask — is he being treated by a melanoma specialist at a major medical center?
There are many folks here who are much more versed in Stage 4 treatments than myself. I'm sure they will be along shortly to provide their opinions.
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- February 25, 2016 at 6:09 pm
Your emotions are completely valid. My loved one has been fighting cancer for 4 years, and I have gone through every emotion possible. I still have good days and bad days. There is no "right" way to feel. My suggestion is when you are having a good day, bask in all it's glory, and on a bad day allow yourself to truly feel. I bet you will feel better in the days that follow.
As another poster asked, is your father being seen by a melanoma specialist? At 57 years old, I would think they would want to treat him to reduce the chance of a recurrence. Because he is BRAF negative,I would think he would have access to immunotherapy drugs, which is shown to cross the blood/brain barrier.
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- February 26, 2016 at 4:29 am
Hello! Thank you for your response. He is being seen by a melanoma specialist, Dr. Monte Shaheen at the UNM Cancer Center. He indicated that the immunotherapies are not always effective in crossing the blood /brain barrier, so he wouldn't start any until he could measure if it were working or not. I was pretty surprised, but the way my family sees it is why put him through the side effects if he is healthy now, save the big meds for when he has active disease I guess. I wish I knew what was right! Or if there were cancer cells in there somewhere waiting to pounce. It seems that two months is too long between scans with such an aggressive disease, but maybe that's just me wanting to know.
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- February 26, 2016 at 8:59 am
HI Kayla. I understand that you want the doctors to check every tiny bit of your dad and eliminate every cancer cell. The truth is that the doctors cannot do that. You father's body is going to be fighting those cancer cells, maybe helped along by immunotherapy drugs in the future.
My doctor always says that melanoma is a very individual disease. No two patients are the same. I have come to understand that treatment isn't about 'right' and 'wrong' it is about the best choice for that patient at that time given the information available.
I am also on 'watch and waiit'. I have a scan every three months. The doctors are already checking your father more often than that. To be honest, scans are stressful and I do not think putting your father through even more frequent scans would do any good.
I am going to tell you about an experience I had about a year ago. I was has been admitted to hospital as an emergency and I was waiting to see a doctor. At the other side of the ward, separarted from my by two sets of what you call 'drapes' in the USA, was a female patient. I never saw her face.
She was surrounded by members of her family and they all talked a lot and quite loudly.
It soon became obvious that she was a cancer patient with stage 4 recurrent disease after being in remission for a number of years. I do not know which cancer she was suffering from. Anyway, one of her daughters was very stressed and utterly fixated on what agressive therapy her mother could have next so that she would 'get better'. That was all she could talk about. Despite being exhauted and in pain, her mother was being incredible patient and understanding but I wanted to get hold of the daughter, shake her and tell her 'this is about your mother, not you'.
I am sure you will not but please do not go down the path that daughter took. Accept the decisions you father takes with his doctors. Brighten his life with your company. If you are struggling with the situation, get help. Maybe part of that help is coming on here. It may be about finding a face-to-face support group.
Heartfelt best wishes for you and your family.
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- February 26, 2016 at 8:59 am
HI Kayla. I understand that you want the doctors to check every tiny bit of your dad and eliminate every cancer cell. The truth is that the doctors cannot do that. You father's body is going to be fighting those cancer cells, maybe helped along by immunotherapy drugs in the future.
My doctor always says that melanoma is a very individual disease. No two patients are the same. I have come to understand that treatment isn't about 'right' and 'wrong' it is about the best choice for that patient at that time given the information available.
I am also on 'watch and waiit'. I have a scan every three months. The doctors are already checking your father more often than that. To be honest, scans are stressful and I do not think putting your father through even more frequent scans would do any good.
I am going to tell you about an experience I had about a year ago. I was has been admitted to hospital as an emergency and I was waiting to see a doctor. At the other side of the ward, separarted from my by two sets of what you call 'drapes' in the USA, was a female patient. I never saw her face.
She was surrounded by members of her family and they all talked a lot and quite loudly.
It soon became obvious that she was a cancer patient with stage 4 recurrent disease after being in remission for a number of years. I do not know which cancer she was suffering from. Anyway, one of her daughters was very stressed and utterly fixated on what agressive therapy her mother could have next so that she would 'get better'. That was all she could talk about. Despite being exhauted and in pain, her mother was being incredible patient and understanding but I wanted to get hold of the daughter, shake her and tell her 'this is about your mother, not you'.
I am sure you will not but please do not go down the path that daughter took. Accept the decisions you father takes with his doctors. Brighten his life with your company. If you are struggling with the situation, get help. Maybe part of that help is coming on here. It may be about finding a face-to-face support group.
Heartfelt best wishes for you and your family.
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- February 26, 2016 at 8:59 am
HI Kayla. I understand that you want the doctors to check every tiny bit of your dad and eliminate every cancer cell. The truth is that the doctors cannot do that. You father's body is going to be fighting those cancer cells, maybe helped along by immunotherapy drugs in the future.
My doctor always says that melanoma is a very individual disease. No two patients are the same. I have come to understand that treatment isn't about 'right' and 'wrong' it is about the best choice for that patient at that time given the information available.
I am also on 'watch and waiit'. I have a scan every three months. The doctors are already checking your father more often than that. To be honest, scans are stressful and I do not think putting your father through even more frequent scans would do any good.
I am going to tell you about an experience I had about a year ago. I was has been admitted to hospital as an emergency and I was waiting to see a doctor. At the other side of the ward, separarted from my by two sets of what you call 'drapes' in the USA, was a female patient. I never saw her face.
She was surrounded by members of her family and they all talked a lot and quite loudly.
It soon became obvious that she was a cancer patient with stage 4 recurrent disease after being in remission for a number of years. I do not know which cancer she was suffering from. Anyway, one of her daughters was very stressed and utterly fixated on what agressive therapy her mother could have next so that she would 'get better'. That was all she could talk about. Despite being exhauted and in pain, her mother was being incredible patient and understanding but I wanted to get hold of the daughter, shake her and tell her 'this is about your mother, not you'.
I am sure you will not but please do not go down the path that daughter took. Accept the decisions you father takes with his doctors. Brighten his life with your company. If you are struggling with the situation, get help. Maybe part of that help is coming on here. It may be about finding a face-to-face support group.
Heartfelt best wishes for you and your family.
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- February 26, 2016 at 4:29 am
Hello! Thank you for your response. He is being seen by a melanoma specialist, Dr. Monte Shaheen at the UNM Cancer Center. He indicated that the immunotherapies are not always effective in crossing the blood /brain barrier, so he wouldn't start any until he could measure if it were working or not. I was pretty surprised, but the way my family sees it is why put him through the side effects if he is healthy now, save the big meds for when he has active disease I guess. I wish I knew what was right! Or if there were cancer cells in there somewhere waiting to pounce. It seems that two months is too long between scans with such an aggressive disease, but maybe that's just me wanting to know.
-
- February 26, 2016 at 4:29 am
Hello! Thank you for your response. He is being seen by a melanoma specialist, Dr. Monte Shaheen at the UNM Cancer Center. He indicated that the immunotherapies are not always effective in crossing the blood /brain barrier, so he wouldn't start any until he could measure if it were working or not. I was pretty surprised, but the way my family sees it is why put him through the side effects if he is healthy now, save the big meds for when he has active disease I guess. I wish I knew what was right! Or if there were cancer cells in there somewhere waiting to pounce. It seems that two months is too long between scans with such an aggressive disease, but maybe that's just me wanting to know.
-
- February 25, 2016 at 6:09 pm
Your emotions are completely valid. My loved one has been fighting cancer for 4 years, and I have gone through every emotion possible. I still have good days and bad days. There is no "right" way to feel. My suggestion is when you are having a good day, bask in all it's glory, and on a bad day allow yourself to truly feel. I bet you will feel better in the days that follow.
As another poster asked, is your father being seen by a melanoma specialist? At 57 years old, I would think they would want to treat him to reduce the chance of a recurrence. Because he is BRAF negative,I would think he would have access to immunotherapy drugs, which is shown to cross the blood/brain barrier.
-
- February 25, 2016 at 6:09 pm
Your emotions are completely valid. My loved one has been fighting cancer for 4 years, and I have gone through every emotion possible. I still have good days and bad days. There is no "right" way to feel. My suggestion is when you are having a good day, bask in all it's glory, and on a bad day allow yourself to truly feel. I bet you will feel better in the days that follow.
As another poster asked, is your father being seen by a melanoma specialist? At 57 years old, I would think they would want to treat him to reduce the chance of a recurrence. Because he is BRAF negative,I would think he would have access to immunotherapy drugs, which is shown to cross the blood/brain barrier.
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