› Forums › General Melanoma Community › going under the knife again.
- This topic has 15 replies, 4 voices, and was last updated 11 years, 2 months ago by
NYKaren.
- Post
-
- March 9, 2013 at 7:14 pm
I was diagnosed with nodular mel. on Feb 1. I had surgery on the 27th to remove my earlobe and SNB in my neck. Well one node came back positive and I have to get my neck completely cleaned out now. The only treatment I am authorized is interferon because the Army only approves that right now. I just want to know how others have reacted with this treatment. How sick were you. How successful were you. How many treatments were given. Since my Mel was on my ear it is kinda difficult to treat with conventional methods. Thanks for the info and this site for support.I was diagnosed with nodular mel. on Feb 1. I had surgery on the 27th to remove my earlobe and SNB in my neck. Well one node came back positive and I have to get my neck completely cleaned out now. The only treatment I am authorized is interferon because the Army only approves that right now. I just want to know how others have reacted with this treatment. How sick were you. How successful were you. How many treatments were given. Since my Mel was on my ear it is kinda difficult to treat with conventional methods. Thanks for the info and this site for support.
- Replies
-
-
- March 9, 2013 at 11:05 pm
I've never had a full lymph node dissection, so hopefully someone else will chime in on that. The one thing I DO know, is that people seem to do better, (in terms of avoiding lymphadema) the longer they leave their drains in.
As to interferon, TONS of people have done it, so you can find an amazing amount of info here about it. The protocol requires 4 weeks of high dose infusion, five days a week. Then they cut the dosage in half (it's still pretty high though) and you do 11 months of self injections, 3 times a week.
But..it often effects people differently. Many people have a terrible time with boot camp, that first 4 weeks of high dose infusion, and then breeze through the next 11 months. For others, it's the reverse. I was playing a gig at the end of my first week, and didn't even really feel sick until my last week, but was forced off by lung complications and exhaustion after 9 months of self injection.
There is NO WAY I could have worked my job during either part of interferon, and I had to quit driving after about 3 months because of slow reaction times and concentration problems. BUT.. Stan Nassano worked as a darned firefighter throughout his treatment. So there's a wide variety.
The first month can cause an assortment of side effects like chills, rigors, headaches, rashes and nausea. And dehydration is an issue for almost everyone. Drink tons of water, as much as you can get down, and maintain a regular, light exercise program..even walking, will help keep your energy levels up.
It's completely doable. When I did it, there was a 3 yr old girl, bella, who's dad wa son the board here, who did interferon. Everytime I got down in the dumps, I thought of bella.
Are you currently IN the army? or a veteran? Because.. you should also investigate clinical trials. Depending on where you live, you might be able to get into a clinical trial that covers your expenses. And.. you should ask your docs about Yervoy. Since it is also approved for treatment, the Army should approve it's use. Though… I'm not sure if it's approved for stage 3, or just stage 4. Have you had scans to determine that you do not have melanoma in other parts of your body? Because that step should be in there too. If your SNB was positive, there is certainly the possibility that there is further involvement.
Thank you for your service to our country. I'm sorry you are facing this challenge.
Good luck!
dian in spokane
-
- March 10, 2013 at 12:24 am
Mark, I second everything Dian said. She knows her stuff. But there are a few things I would like to add:
1. You do not necessarily HAVE to have a complete lymph node dissection. Just last week there was a very informative thread about whether and when to have a CLND. See: "CALND decision: discussed with surgeon…"
2. My brother is being treated by the VAMC in Tampa. Their policy was to do everything strictly according to the FDA approved protocols. That means that Zelboraf and Yervoy can only be used on Stage IV patients and you are Stage III. I don't know if the Army has the same policy, but they probably do.
3. However, the VA doctors were very supportive about my brother going to Moffitt Cancer Center in Tampa to consult about possible clinical trials. The clinical trials themselves are free and the VA was willing to do (or pay for) the various scans and diagnostic tests that Moffitt would need before enrolling a patient into a clinical trial. Since there are just starting to be clinical trials for Stage III melanoma, you might want to check into those.
4. Everyone, absolutely everyone, should at least get a second opinion about treatment options from a Melanoma Center of Excellence before deciding how to proceed with treatment. MD Anderson is one of the best in the country. So I suggest that you tell the Army that you want them to refer you to MD Anderson for a clinical trial. That way the Army will pay for the consult. Once you're at MD Anderson, you can discuss your case with one of their oncologists and get their input whether or not you end up choosing a clinical trial.
5. If at all possible, have your biopsy specimen tested for the BRAF mutation. You might or might not need it to qualify for a clinical trial now; you will most certainly need it if you ever (God forbid!) advance to Stage IV in the future.
-
- March 10, 2013 at 12:24 am
Mark, I second everything Dian said. She knows her stuff. But there are a few things I would like to add:
1. You do not necessarily HAVE to have a complete lymph node dissection. Just last week there was a very informative thread about whether and when to have a CLND. See: "CALND decision: discussed with surgeon…"
2. My brother is being treated by the VAMC in Tampa. Their policy was to do everything strictly according to the FDA approved protocols. That means that Zelboraf and Yervoy can only be used on Stage IV patients and you are Stage III. I don't know if the Army has the same policy, but they probably do.
3. However, the VA doctors were very supportive about my brother going to Moffitt Cancer Center in Tampa to consult about possible clinical trials. The clinical trials themselves are free and the VA was willing to do (or pay for) the various scans and diagnostic tests that Moffitt would need before enrolling a patient into a clinical trial. Since there are just starting to be clinical trials for Stage III melanoma, you might want to check into those.
4. Everyone, absolutely everyone, should at least get a second opinion about treatment options from a Melanoma Center of Excellence before deciding how to proceed with treatment. MD Anderson is one of the best in the country. So I suggest that you tell the Army that you want them to refer you to MD Anderson for a clinical trial. That way the Army will pay for the consult. Once you're at MD Anderson, you can discuss your case with one of their oncologists and get their input whether or not you end up choosing a clinical trial.
5. If at all possible, have your biopsy specimen tested for the BRAF mutation. You might or might not need it to qualify for a clinical trial now; you will most certainly need it if you ever (God forbid!) advance to Stage IV in the future.
-
- March 10, 2013 at 12:24 am
Mark, I second everything Dian said. She knows her stuff. But there are a few things I would like to add:
1. You do not necessarily HAVE to have a complete lymph node dissection. Just last week there was a very informative thread about whether and when to have a CLND. See: "CALND decision: discussed with surgeon…"
2. My brother is being treated by the VAMC in Tampa. Their policy was to do everything strictly according to the FDA approved protocols. That means that Zelboraf and Yervoy can only be used on Stage IV patients and you are Stage III. I don't know if the Army has the same policy, but they probably do.
3. However, the VA doctors were very supportive about my brother going to Moffitt Cancer Center in Tampa to consult about possible clinical trials. The clinical trials themselves are free and the VA was willing to do (or pay for) the various scans and diagnostic tests that Moffitt would need before enrolling a patient into a clinical trial. Since there are just starting to be clinical trials for Stage III melanoma, you might want to check into those.
4. Everyone, absolutely everyone, should at least get a second opinion about treatment options from a Melanoma Center of Excellence before deciding how to proceed with treatment. MD Anderson is one of the best in the country. So I suggest that you tell the Army that you want them to refer you to MD Anderson for a clinical trial. That way the Army will pay for the consult. Once you're at MD Anderson, you can discuss your case with one of their oncologists and get their input whether or not you end up choosing a clinical trial.
5. If at all possible, have your biopsy specimen tested for the BRAF mutation. You might or might not need it to qualify for a clinical trial now; you will most certainly need it if you ever (God forbid!) advance to Stage IV in the future.
-
- March 10, 2013 at 1:09 am
I am currently in the Army but have weeks left. I am being medically retired. I will have medical coverage for the rest of my life and also disability for other injuries during combat. I already asked for trials but BAMC in San Antonio doesn’t approve any right now. I am scheduled to do an MRI and pet scan on the 15th.and node removal on the 19 th. I am somewhat healthy but feeling run down lately. I am also on depression meds. I know the interferon affects people with depression severely. I will have a few people looking after me though.. thanks for your info. -
- March 10, 2013 at 1:44 am
Mark,
Your doctors should not be telling you definitively that you will be on interferon before you are scanned for any other spread and your tumor tested for the BRAF mutation. Even if you (hopefully) remain at Stage IIIC, if you are considered unresectable, then you would be eligible for Yervoy or Zelboraf without being in a clinical trial. Also, there are many oncs who will not prescribe interferon for someone with a history of depression. If you do a search here of interferon you will see that it is a controversial treatment.
Please keep us posted.
Karen -
- March 10, 2013 at 1:44 am
Mark,
Your doctors should not be telling you definitively that you will be on interferon before you are scanned for any other spread and your tumor tested for the BRAF mutation. Even if you (hopefully) remain at Stage IIIC, if you are considered unresectable, then you would be eligible for Yervoy or Zelboraf without being in a clinical trial. Also, there are many oncs who will not prescribe interferon for someone with a history of depression. If you do a search here of interferon you will see that it is a controversial treatment.
Please keep us posted.
Karen -
- March 10, 2013 at 1:44 am
Mark,
Your doctors should not be telling you definitively that you will be on interferon before you are scanned for any other spread and your tumor tested for the BRAF mutation. Even if you (hopefully) remain at Stage IIIC, if you are considered unresectable, then you would be eligible for Yervoy or Zelboraf without being in a clinical trial. Also, there are many oncs who will not prescribe interferon for someone with a history of depression. If you do a search here of interferon you will see that it is a controversial treatment.
Please keep us posted.
Karen -
- March 10, 2013 at 1:09 am
I am currently in the Army but have weeks left. I am being medically retired. I will have medical coverage for the rest of my life and also disability for other injuries during combat. I already asked for trials but BAMC in San Antonio doesn’t approve any right now. I am scheduled to do an MRI and pet scan on the 15th.and node removal on the 19 th. I am somewhat healthy but feeling run down lately. I am also on depression meds. I know the interferon affects people with depression severely. I will have a few people looking after me though.. thanks for your info. -
- March 10, 2013 at 1:09 am
I am currently in the Army but have weeks left. I am being medically retired. I will have medical coverage for the rest of my life and also disability for other injuries during combat. I already asked for trials but BAMC in San Antonio doesn’t approve any right now. I am scheduled to do an MRI and pet scan on the 15th.and node removal on the 19 th. I am somewhat healthy but feeling run down lately. I am also on depression meds. I know the interferon affects people with depression severely. I will have a few people looking after me though.. thanks for your info.
-
- March 9, 2013 at 11:05 pm
I've never had a full lymph node dissection, so hopefully someone else will chime in on that. The one thing I DO know, is that people seem to do better, (in terms of avoiding lymphadema) the longer they leave their drains in.
As to interferon, TONS of people have done it, so you can find an amazing amount of info here about it. The protocol requires 4 weeks of high dose infusion, five days a week. Then they cut the dosage in half (it's still pretty high though) and you do 11 months of self injections, 3 times a week.
But..it often effects people differently. Many people have a terrible time with boot camp, that first 4 weeks of high dose infusion, and then breeze through the next 11 months. For others, it's the reverse. I was playing a gig at the end of my first week, and didn't even really feel sick until my last week, but was forced off by lung complications and exhaustion after 9 months of self injection.
There is NO WAY I could have worked my job during either part of interferon, and I had to quit driving after about 3 months because of slow reaction times and concentration problems. BUT.. Stan Nassano worked as a darned firefighter throughout his treatment. So there's a wide variety.
The first month can cause an assortment of side effects like chills, rigors, headaches, rashes and nausea. And dehydration is an issue for almost everyone. Drink tons of water, as much as you can get down, and maintain a regular, light exercise program..even walking, will help keep your energy levels up.
It's completely doable. When I did it, there was a 3 yr old girl, bella, who's dad wa son the board here, who did interferon. Everytime I got down in the dumps, I thought of bella.
Are you currently IN the army? or a veteran? Because.. you should also investigate clinical trials. Depending on where you live, you might be able to get into a clinical trial that covers your expenses. And.. you should ask your docs about Yervoy. Since it is also approved for treatment, the Army should approve it's use. Though… I'm not sure if it's approved for stage 3, or just stage 4. Have you had scans to determine that you do not have melanoma in other parts of your body? Because that step should be in there too. If your SNB was positive, there is certainly the possibility that there is further involvement.
Thank you for your service to our country. I'm sorry you are facing this challenge.
Good luck!
dian in spokane
-
- March 9, 2013 at 11:05 pm
I've never had a full lymph node dissection, so hopefully someone else will chime in on that. The one thing I DO know, is that people seem to do better, (in terms of avoiding lymphadema) the longer they leave their drains in.
As to interferon, TONS of people have done it, so you can find an amazing amount of info here about it. The protocol requires 4 weeks of high dose infusion, five days a week. Then they cut the dosage in half (it's still pretty high though) and you do 11 months of self injections, 3 times a week.
But..it often effects people differently. Many people have a terrible time with boot camp, that first 4 weeks of high dose infusion, and then breeze through the next 11 months. For others, it's the reverse. I was playing a gig at the end of my first week, and didn't even really feel sick until my last week, but was forced off by lung complications and exhaustion after 9 months of self injection.
There is NO WAY I could have worked my job during either part of interferon, and I had to quit driving after about 3 months because of slow reaction times and concentration problems. BUT.. Stan Nassano worked as a darned firefighter throughout his treatment. So there's a wide variety.
The first month can cause an assortment of side effects like chills, rigors, headaches, rashes and nausea. And dehydration is an issue for almost everyone. Drink tons of water, as much as you can get down, and maintain a regular, light exercise program..even walking, will help keep your energy levels up.
It's completely doable. When I did it, there was a 3 yr old girl, bella, who's dad wa son the board here, who did interferon. Everytime I got down in the dumps, I thought of bella.
Are you currently IN the army? or a veteran? Because.. you should also investigate clinical trials. Depending on where you live, you might be able to get into a clinical trial that covers your expenses. And.. you should ask your docs about Yervoy. Since it is also approved for treatment, the Army should approve it's use. Though… I'm not sure if it's approved for stage 3, or just stage 4. Have you had scans to determine that you do not have melanoma in other parts of your body? Because that step should be in there too. If your SNB was positive, there is certainly the possibility that there is further involvement.
Thank you for your service to our country. I'm sorry you are facing this challenge.
Good luck!
dian in spokane
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.