› Forums › General Melanoma Community › 2nd surgery on Friday , starting to feel anxious
- This topic has 27 replies, 7 voices, and was last updated 8 years, 10 months ago by
Maria C.
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- July 13, 2016 at 5:07 am
So I’m just a few days away from my second surgery in less than a month and a half . diagnosed stage 3 melanoma in two out of three lymph nodes cleared margins on the side of my temple .I’m starting to feel the anxiety losing sleep stressing out even with tons of support and a lot of faith that God will get me through this . the plan looks to dissect and extract the parotid salivary gland and remove lymph nodes in the upper neck area recovery time should be 2 weeks and after that seven weeks of radiation targeted on the neck and side of the head and then possible immune therapy treatment with two drugs .they suggested yervoy and interferon. any experience out there ? I’ve been reading the interferon is no good and doesn’t really do anything . or just anybody that would like to pray or encourage thank you so much for this website it’s been a huge help for me and my family God bless all of you
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- July 13, 2016 at 9:08 am
I am not stage 3 so can't answer your question about interferon, but I do very much understand the anxiety. It's perfectly normal to start feeling anxious, even though it doesn't help with anything. You are in my thoughts and prayers, friend.
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- July 13, 2016 at 9:11 am
I forgot to add one more thing…. most people here seem to suggest seeing a melanoma specialist asap – not just any old oncologist, a melanoma specialist. Is your doctor the absolute best/most specialist you can access? A stage 3 melanoma on the head/neck is pretty serious… I hope you are in the best possible hands?
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- July 13, 2016 at 9:11 am
I forgot to add one more thing…. most people here seem to suggest seeing a melanoma specialist asap – not just any old oncologist, a melanoma specialist. Is your doctor the absolute best/most specialist you can access? A stage 3 melanoma on the head/neck is pretty serious… I hope you are in the best possible hands?
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- July 13, 2016 at 9:11 am
I forgot to add one more thing…. most people here seem to suggest seeing a melanoma specialist asap – not just any old oncologist, a melanoma specialist. Is your doctor the absolute best/most specialist you can access? A stage 3 melanoma on the head/neck is pretty serious… I hope you are in the best possible hands?
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- July 13, 2016 at 10:29 am
Hello Mark.
I'm also stage 3 and recovering from my second surgery in a month. Going to have my drain removed tomorrow and have my first meeting with the oncologist to make a plan for starting on Yervoy.
Going into the first surgery, I figured they'd do the WLE, remove the sentinal node and I'd be done. Over. On my way to the rest of my life after this tiny blip in the road. It wasn't until I received those biopsy results that it became VERY real to me and that's when I started getting scared.
No matter how much support we get from our loved ones, we still tend to put a brave face on so as to not worry/upset them more. We use all the platitudes to convince them that we're going to be ok and that we're handling this well. The problem is, in the dark of night we, ourselves, are not wholly convinced of this.
A lot of people here will give you great advice, much better than I can as I'm still stumbling through this myself. What I can tell you is we do understand the stress and anxiety. It's ok to be scared, just try to not let it consume you. Give yourself permission to 'fall apart' once in a while – even if it's only on this forum. I promise, we'll understand.
I'll be keeping you in my thoughts,
Ann
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- July 13, 2016 at 10:29 am
Hello Mark.
I'm also stage 3 and recovering from my second surgery in a month. Going to have my drain removed tomorrow and have my first meeting with the oncologist to make a plan for starting on Yervoy.
Going into the first surgery, I figured they'd do the WLE, remove the sentinal node and I'd be done. Over. On my way to the rest of my life after this tiny blip in the road. It wasn't until I received those biopsy results that it became VERY real to me and that's when I started getting scared.
No matter how much support we get from our loved ones, we still tend to put a brave face on so as to not worry/upset them more. We use all the platitudes to convince them that we're going to be ok and that we're handling this well. The problem is, in the dark of night we, ourselves, are not wholly convinced of this.
A lot of people here will give you great advice, much better than I can as I'm still stumbling through this myself. What I can tell you is we do understand the stress and anxiety. It's ok to be scared, just try to not let it consume you. Give yourself permission to 'fall apart' once in a while – even if it's only on this forum. I promise, we'll understand.
I'll be keeping you in my thoughts,
Ann
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- July 13, 2016 at 10:29 am
Hello Mark.
I'm also stage 3 and recovering from my second surgery in a month. Going to have my drain removed tomorrow and have my first meeting with the oncologist to make a plan for starting on Yervoy.
Going into the first surgery, I figured they'd do the WLE, remove the sentinal node and I'd be done. Over. On my way to the rest of my life after this tiny blip in the road. It wasn't until I received those biopsy results that it became VERY real to me and that's when I started getting scared.
No matter how much support we get from our loved ones, we still tend to put a brave face on so as to not worry/upset them more. We use all the platitudes to convince them that we're going to be ok and that we're handling this well. The problem is, in the dark of night we, ourselves, are not wholly convinced of this.
A lot of people here will give you great advice, much better than I can as I'm still stumbling through this myself. What I can tell you is we do understand the stress and anxiety. It's ok to be scared, just try to not let it consume you. Give yourself permission to 'fall apart' once in a while – even if it's only on this forum. I promise, we'll understand.
I'll be keeping you in my thoughts,
Ann
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- July 13, 2016 at 2:08 pm
Hi Mark,
My husband was diagnosed last March after his mole on his temple started changing. After WLE's and SNB's and the same procedure you are having he wound up stage 3B with his parotid lymph node showing to have melanoma. A total of 29 lymph nodes were removed during the radical neck dissection and they were clear of any disease. His journey then included a year long clinical trial at Baylor to test Ipilumimab or Nivolumab in an adjuvant setting. What we know is that he received active medicine but what we don't know is which arm he was on. He had little to no symptoms from the immunotherapy drug. He completed the trial in June and is now being monitored and scanned every 3 months for this next year with additional monitoring in the years to come. This is a journey and whether anyone on this board likes it or not it's now very much a part of our lives and our story.
My advice is to work the plan. Lenny, who is also on this board, told me that once we had a plan that we would feel better and he was right. Find a melanoma specialist and if you are ever uncomfortable with your diagnosis or your action plan go find a second opinion. You are your own advocate and you know your body better than anyone. Stay diligent and I wish you all the best in your recovery. There is a lot of hope out there and the fight against melanoma is changing for the better. Even in the past year additional therapies have been offerred and people are seeing results that years ago were not thought possible. Also, statistics are a joke. Don't get on the internet and start scaring yourself to death. What you read is largely outdated and do not have the most recent therapies in the data. Good luck to you and a quick recovery from your surgery. Let us know how you are doing in the coming weeks.
~Kristi
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- July 13, 2016 at 2:08 pm
Hi Mark,
My husband was diagnosed last March after his mole on his temple started changing. After WLE's and SNB's and the same procedure you are having he wound up stage 3B with his parotid lymph node showing to have melanoma. A total of 29 lymph nodes were removed during the radical neck dissection and they were clear of any disease. His journey then included a year long clinical trial at Baylor to test Ipilumimab or Nivolumab in an adjuvant setting. What we know is that he received active medicine but what we don't know is which arm he was on. He had little to no symptoms from the immunotherapy drug. He completed the trial in June and is now being monitored and scanned every 3 months for this next year with additional monitoring in the years to come. This is a journey and whether anyone on this board likes it or not it's now very much a part of our lives and our story.
My advice is to work the plan. Lenny, who is also on this board, told me that once we had a plan that we would feel better and he was right. Find a melanoma specialist and if you are ever uncomfortable with your diagnosis or your action plan go find a second opinion. You are your own advocate and you know your body better than anyone. Stay diligent and I wish you all the best in your recovery. There is a lot of hope out there and the fight against melanoma is changing for the better. Even in the past year additional therapies have been offerred and people are seeing results that years ago were not thought possible. Also, statistics are a joke. Don't get on the internet and start scaring yourself to death. What you read is largely outdated and do not have the most recent therapies in the data. Good luck to you and a quick recovery from your surgery. Let us know how you are doing in the coming weeks.
~Kristi
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- July 13, 2016 at 2:08 pm
Hi Mark,
My husband was diagnosed last March after his mole on his temple started changing. After WLE's and SNB's and the same procedure you are having he wound up stage 3B with his parotid lymph node showing to have melanoma. A total of 29 lymph nodes were removed during the radical neck dissection and they were clear of any disease. His journey then included a year long clinical trial at Baylor to test Ipilumimab or Nivolumab in an adjuvant setting. What we know is that he received active medicine but what we don't know is which arm he was on. He had little to no symptoms from the immunotherapy drug. He completed the trial in June and is now being monitored and scanned every 3 months for this next year with additional monitoring in the years to come. This is a journey and whether anyone on this board likes it or not it's now very much a part of our lives and our story.
My advice is to work the plan. Lenny, who is also on this board, told me that once we had a plan that we would feel better and he was right. Find a melanoma specialist and if you are ever uncomfortable with your diagnosis or your action plan go find a second opinion. You are your own advocate and you know your body better than anyone. Stay diligent and I wish you all the best in your recovery. There is a lot of hope out there and the fight against melanoma is changing for the better. Even in the past year additional therapies have been offerred and people are seeing results that years ago were not thought possible. Also, statistics are a joke. Don't get on the internet and start scaring yourself to death. What you read is largely outdated and do not have the most recent therapies in the data. Good luck to you and a quick recovery from your surgery. Let us know how you are doing in the coming weeks.
~Kristi
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- July 13, 2016 at 6:53 pm
Hi, I just thought I'd chime in as well. I was diagnosed stage 3b in july of 2013. I also had a clnd of my groin that year, which gave me lymphadema. I can remember being so, so scared as I was a mom to 4 young boys. I can remember doing as much research as I could and being even more scared with the statistics. My only option was Interferon or a trial of Ipi 3mg, 10mg or Interferon, which you are randomized for. I knew Interferon wasn't going to work for my family very well. I have been a stay at home mom for years( In laymans terms, I do everything at home). On the other hand, the potential side effects from Ipi were very frightening to me. I decided to do the Interferon as long as I could. I had an appt with the pik line team to get one put in and I had this overwhelming nervousness about it. The night before the appt. I found this website and started reading what amazing results some people were getting from Ipi. I showed them to my husband and we decided to try the trial. My onc. actually called on me and my husbands anniv. to tell me I was randomized to Ipi 3mg. So, so happy and relieved for some reason. Anyways, I finished all of the Ipi, including maintence doses without any real side effects besides itching. Totally doable. I have learned so much through this journey and try to keep up in case I become stage 4 someday. Melanoma is the most unpredictable kind of cancer there is. But with that said, they have come a long way in the last several years. These drugs are taking some stage 4 people with tumor burden and making them NED. That's amazing! One of the MOST important steps is to find a Melanoma Onc. and a Melanoma Surgeon. A regular Onc. will not do the trick here, you need expertise. Do whatever it takes to make sure you have a knowledgeable mel onc. I believe in the power of prayer as well. I have had little bumps and scares along the way and always had a lot of people praying for me. Over 3 years later, I'm still stage 3. I have a higher chance of getting another primary than I do for the first one to come back. This site is absolutley amazing. Read up on everyone's stories so you will become familiar with the drugs and which ones are working, which ones have worst side effects. We lost an amazingly kind and knowledgeable friend, Artie and people like him and Celeste have a wealth of knowledge always ready to share. I will pray for you and your family and just know, this isn't a death sentence anymore. There is hope. Believe it.
Rachel
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- July 13, 2016 at 6:53 pm
Hi, I just thought I'd chime in as well. I was diagnosed stage 3b in july of 2013. I also had a clnd of my groin that year, which gave me lymphadema. I can remember being so, so scared as I was a mom to 4 young boys. I can remember doing as much research as I could and being even more scared with the statistics. My only option was Interferon or a trial of Ipi 3mg, 10mg or Interferon, which you are randomized for. I knew Interferon wasn't going to work for my family very well. I have been a stay at home mom for years( In laymans terms, I do everything at home). On the other hand, the potential side effects from Ipi were very frightening to me. I decided to do the Interferon as long as I could. I had an appt with the pik line team to get one put in and I had this overwhelming nervousness about it. The night before the appt. I found this website and started reading what amazing results some people were getting from Ipi. I showed them to my husband and we decided to try the trial. My onc. actually called on me and my husbands anniv. to tell me I was randomized to Ipi 3mg. So, so happy and relieved for some reason. Anyways, I finished all of the Ipi, including maintence doses without any real side effects besides itching. Totally doable. I have learned so much through this journey and try to keep up in case I become stage 4 someday. Melanoma is the most unpredictable kind of cancer there is. But with that said, they have come a long way in the last several years. These drugs are taking some stage 4 people with tumor burden and making them NED. That's amazing! One of the MOST important steps is to find a Melanoma Onc. and a Melanoma Surgeon. A regular Onc. will not do the trick here, you need expertise. Do whatever it takes to make sure you have a knowledgeable mel onc. I believe in the power of prayer as well. I have had little bumps and scares along the way and always had a lot of people praying for me. Over 3 years later, I'm still stage 3. I have a higher chance of getting another primary than I do for the first one to come back. This site is absolutley amazing. Read up on everyone's stories so you will become familiar with the drugs and which ones are working, which ones have worst side effects. We lost an amazingly kind and knowledgeable friend, Artie and people like him and Celeste have a wealth of knowledge always ready to share. I will pray for you and your family and just know, this isn't a death sentence anymore. There is hope. Believe it.
Rachel
-
- July 13, 2016 at 6:53 pm
Hi, I just thought I'd chime in as well. I was diagnosed stage 3b in july of 2013. I also had a clnd of my groin that year, which gave me lymphadema. I can remember being so, so scared as I was a mom to 4 young boys. I can remember doing as much research as I could and being even more scared with the statistics. My only option was Interferon or a trial of Ipi 3mg, 10mg or Interferon, which you are randomized for. I knew Interferon wasn't going to work for my family very well. I have been a stay at home mom for years( In laymans terms, I do everything at home). On the other hand, the potential side effects from Ipi were very frightening to me. I decided to do the Interferon as long as I could. I had an appt with the pik line team to get one put in and I had this overwhelming nervousness about it. The night before the appt. I found this website and started reading what amazing results some people were getting from Ipi. I showed them to my husband and we decided to try the trial. My onc. actually called on me and my husbands anniv. to tell me I was randomized to Ipi 3mg. So, so happy and relieved for some reason. Anyways, I finished all of the Ipi, including maintence doses without any real side effects besides itching. Totally doable. I have learned so much through this journey and try to keep up in case I become stage 4 someday. Melanoma is the most unpredictable kind of cancer there is. But with that said, they have come a long way in the last several years. These drugs are taking some stage 4 people with tumor burden and making them NED. That's amazing! One of the MOST important steps is to find a Melanoma Onc. and a Melanoma Surgeon. A regular Onc. will not do the trick here, you need expertise. Do whatever it takes to make sure you have a knowledgeable mel onc. I believe in the power of prayer as well. I have had little bumps and scares along the way and always had a lot of people praying for me. Over 3 years later, I'm still stage 3. I have a higher chance of getting another primary than I do for the first one to come back. This site is absolutley amazing. Read up on everyone's stories so you will become familiar with the drugs and which ones are working, which ones have worst side effects. We lost an amazingly kind and knowledgeable friend, Artie and people like him and Celeste have a wealth of knowledge always ready to share. I will pray for you and your family and just know, this isn't a death sentence anymore. There is hope. Believe it.
Rachel
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- July 15, 2016 at 9:37 pm
Hi Mark,
I'm going through a similar experience with the accompanying anxiety. In the hospital next week for my second brain surgery when I was just finally recovering from last month's and ready to go back to work. Sucked back "underwater" just like that. What's helping me deal with it are side effects (increasingly severe headaches) so my body is telling me I need to address asap and just let it go.
Nothing to be done but getting it done.
Hang in. Prayer, positive thoughts, persistent belief that you WILL get better – all help. As do the more practical, as others have mentioned here: 1) second, third opinions 2) educating yourself (through research, boards like this, second opinions) so you can feel secure in your treatment plan; and 3) making sure you are in the best of hands with the most experienced melanoma specialist your insurance can afford.
Wishing you another successful surgery next week, and I'll be thinking of you when we're both in the hospital in a few days!
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- July 15, 2016 at 9:37 pm
Hi Mark,
I'm going through a similar experience with the accompanying anxiety. In the hospital next week for my second brain surgery when I was just finally recovering from last month's and ready to go back to work. Sucked back "underwater" just like that. What's helping me deal with it are side effects (increasingly severe headaches) so my body is telling me I need to address asap and just let it go.
Nothing to be done but getting it done.
Hang in. Prayer, positive thoughts, persistent belief that you WILL get better – all help. As do the more practical, as others have mentioned here: 1) second, third opinions 2) educating yourself (through research, boards like this, second opinions) so you can feel secure in your treatment plan; and 3) making sure you are in the best of hands with the most experienced melanoma specialist your insurance can afford.
Wishing you another successful surgery next week, and I'll be thinking of you when we're both in the hospital in a few days!
-
- July 15, 2016 at 9:37 pm
Hi Mark,
I'm going through a similar experience with the accompanying anxiety. In the hospital next week for my second brain surgery when I was just finally recovering from last month's and ready to go back to work. Sucked back "underwater" just like that. What's helping me deal with it are side effects (increasingly severe headaches) so my body is telling me I need to address asap and just let it go.
Nothing to be done but getting it done.
Hang in. Prayer, positive thoughts, persistent belief that you WILL get better – all help. As do the more practical, as others have mentioned here: 1) second, third opinions 2) educating yourself (through research, boards like this, second opinions) so you can feel secure in your treatment plan; and 3) making sure you are in the best of hands with the most experienced melanoma specialist your insurance can afford.
Wishing you another successful surgery next week, and I'll be thinking of you when we're both in the hospital in a few days!
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