Stage IV : qeustion suggestions

This topic has 42 replies, 7 voices, and was last updated 8 years, 9 months ago by jazztubs.

Post

- July 18, 2016 at 7:47 pm
- Quote
Patrick O.
Participant
Hello all. Just diagnosed with stage IV as of 7/13. Am seeing my OCL for the first time on 7/20. Just wondering what are a few of the most important things I need to ask him about.
I’ve been reading many of these posts and it has been a great source of info and hope.

Thanks
Pat

Viewing 11 reply threads

Replies

- - July 18, 2016 at 7:56 pm
  - Quote
  Mat
  Participant
  Pat, sorry to hear. The most important piece of advice is to make sure that you're with a melanoma specialist (not just a general onc), preferrably one at a top research institution. If you let folks know where you are, they can make suggestions.
  - July 18, 2016 at 8:32 pm
    
    Quote
    Patrick O.
    Participant
    
    Thanks Matt. I’m in the Milwaukee Wi. area. I’ve been referred to a Dr. Jonathan Treisman.
  - July 19, 2016 at 9:28 pm
    
    Quote
    casagrayson
    Participant
    
    My personal opinion is that this is not a good choice. He is a hematologist and general oncologist — a very good one, by all accounts, but not a specialist in melanoma. It would be worth traveling to get a treatment plan from a specialist.
  - July 19, 2016 at 9:28 pm
    
    Quote
    casagrayson
    Participant
    
    My personal opinion is that this is not a good choice. He is a hematologist and general oncologist — a very good one, by all accounts, but not a specialist in melanoma. It would be worth traveling to get a treatment plan from a specialist.
  - July 19, 2016 at 9:28 pm
    
    Quote
    casagrayson
    Participant
    
    My personal opinion is that this is not a good choice. He is a hematologist and general oncologist — a very good one, by all accounts, but not a specialist in melanoma. It would be worth traveling to get a treatment plan from a specialist.
  - July 20, 2016 at 12:27 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks for the responses. Appreciate them immensely. I’m finding it very hard to figure out who specializes in Melanoma. Thanks for the Madison lead.
    Is the Cancer center of america in Zion Illinois a good place?
    Is there a particular website I can check. I’m pretty computer illiterate,but realize I better get better quickly. Thanks again.
    Pat.
  - July 20, 2016 at 12:47 am
    
    Quote
    jennunicorn
    Participant
    
    I don't trust cancer treatment centers of america…
    
    Read this: http://www.reuters.com/article/us-usa-cancer-ctca-idUSBRE9250L820130306
    
    Plus, not sure if they have melanoma oncologists. You need a melanoma specialist at a big university/research hospital. They are the ones that know ALL info needed to properly diagnose and treat melanoma. They know the newest information and they know the side effects of these new immunotherapy drugs and how to treat them better than any general oncologist since they've been doing it the longest. Madison is probably the closest, being about an hour and a half away, that's not bad. A lot of people travel much farther in order to see a melanoma specialist.
  - July 20, 2016 at 1:19 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks Jenn! Will definitely check out Madison!
  - July 20, 2016 at 1:19 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks Jenn! Will definitely check out Madison!
  - July 20, 2016 at 1:19 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks Jenn! Will definitely check out Madison!
  - July 20, 2016 at 1:34 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks for that link also Jenn. Wow…so much for Zion..
  - July 20, 2016 at 1:34 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks for that link also Jenn. Wow…so much for Zion..
  - July 20, 2016 at 1:34 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks for that link also Jenn. Wow…so much for Zion..
  - July 20, 2016 at 12:47 am
    
    Quote
    jennunicorn
    Participant
    
    I don't trust cancer treatment centers of america…
    
    Read this: http://www.reuters.com/article/us-usa-cancer-ctca-idUSBRE9250L820130306
    
    Plus, not sure if they have melanoma oncologists. You need a melanoma specialist at a big university/research hospital. They are the ones that know ALL info needed to properly diagnose and treat melanoma. They know the newest information and they know the side effects of these new immunotherapy drugs and how to treat them better than any general oncologist since they've been doing it the longest. Madison is probably the closest, being about an hour and a half away, that's not bad. A lot of people travel much farther in order to see a melanoma specialist.
  - July 20, 2016 at 12:47 am
    
    Quote
    jennunicorn
    Participant
    
    I don't trust cancer treatment centers of america…
    
    Read this: http://www.reuters.com/article/us-usa-cancer-ctca-idUSBRE9250L820130306
    
    Plus, not sure if they have melanoma oncologists. You need a melanoma specialist at a big university/research hospital. They are the ones that know ALL info needed to properly diagnose and treat melanoma. They know the newest information and they know the side effects of these new immunotherapy drugs and how to treat them better than any general oncologist since they've been doing it the longest. Madison is probably the closest, being about an hour and a half away, that's not bad. A lot of people travel much farther in order to see a melanoma specialist.
  - July 20, 2016 at 12:27 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks for the responses. Appreciate them immensely. I’m finding it very hard to figure out who specializes in Melanoma. Thanks for the Madison lead.
    Is the Cancer center of america in Zion Illinois a good place?
    Is there a particular website I can check. I’m pretty computer illiterate,but realize I better get better quickly. Thanks again.
    Pat.
  - July 20, 2016 at 12:27 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks for the responses. Appreciate them immensely. I’m finding it very hard to figure out who specializes in Melanoma. Thanks for the Madison lead.
    Is the Cancer center of america in Zion Illinois a good place?
    Is there a particular website I can check. I’m pretty computer illiterate,but realize I better get better quickly. Thanks again.
    Pat.
  - July 18, 2016 at 8:32 pm
    
    Quote
    Patrick O.
    Participant
    
    Thanks Matt. I’m in the Milwaukee Wi. area. I’ve been referred to a Dr. Jonathan Treisman.
  - July 18, 2016 at 8:32 pm
    
    Quote
    Patrick O.
    Participant
    
    Thanks Matt. I’m in the Milwaukee Wi. area. I’ve been referred to a Dr. Jonathan Treisman.
  - July 30, 2016 at 4:13 pm
    
    Quote
    jazztubs
    Participant
    
    100% agree that a specialist is the way to go. My general Oncologist knew immediately that my diagnosis was way out of his league, and sent me around 5 hours north to one of the leading Melanoma docs on the West Coast, who specializes in IL-2 treatment. This saved my life, at least for now…
    
    Wishing you positive energy on the journey–it's life changing, but does not mean the end if you play your cards right. Melanoma sucks, and while this sounds odd, it's the best time to have a Melanoma diagnosis–20 years ago, it was a death sentence. Not so anymore.
  - July 30, 2016 at 4:13 pm
    
    Quote
    jazztubs
    Participant
    
    100% agree that a specialist is the way to go. My general Oncologist knew immediately that my diagnosis was way out of his league, and sent me around 5 hours north to one of the leading Melanoma docs on the West Coast, who specializes in IL-2 treatment. This saved my life, at least for now…
    
    Wishing you positive energy on the journey–it's life changing, but does not mean the end if you play your cards right. Melanoma sucks, and while this sounds odd, it's the best time to have a Melanoma diagnosis–20 years ago, it was a death sentence. Not so anymore.
  - July 30, 2016 at 4:13 pm
    
    Quote
    jazztubs
    Participant
    
    100% agree that a specialist is the way to go. My general Oncologist knew immediately that my diagnosis was way out of his league, and sent me around 5 hours north to one of the leading Melanoma docs on the West Coast, who specializes in IL-2 treatment. This saved my life, at least for now…
    
    Wishing you positive energy on the journey–it's life changing, but does not mean the end if you play your cards right. Melanoma sucks, and while this sounds odd, it's the best time to have a Melanoma diagnosis–20 years ago, it was a death sentence. Not so anymore.
- - July 18, 2016 at 7:56 pm
  - Quote
  Mat
  Participant
  Pat, sorry to hear. The most important piece of advice is to make sure that you're with a melanoma specialist (not just a general onc), preferrably one at a top research institution. If you let folks know where you are, they can make suggestions.
- - July 18, 2016 at 7:56 pm
  - Quote
  Mat
  Participant
  Pat, sorry to hear. The most important piece of advice is to make sure that you're with a melanoma specialist (not just a general onc), preferrably one at a top research institution. If you let folks know where you are, they can make suggestions.
- - July 19, 2016 at 8:22 pm
  - Quote
  mrhudgens
  Participant
  Read, read, read. Learn enough about what you've got so that much of what the doctor tells you will make sense. Otherwise, you're going to hear a lot but not be able to process much of it. Take someone with you to take notes. And good luck to you!
- - July 19, 2016 at 8:22 pm
  - Quote
  mrhudgens
  Participant
  Read, read, read. Learn enough about what you've got so that much of what the doctor tells you will make sense. Otherwise, you're going to hear a lot but not be able to process much of it. Take someone with you to take notes. And good luck to you!
- - July 19, 2016 at 8:22 pm
  - Quote
  mrhudgens
  Participant
  Read, read, read. Learn enough about what you've got so that much of what the doctor tells you will make sense. Otherwise, you're going to hear a lot but not be able to process much of it. Take someone with you to take notes. And good luck to you!
  - July 20, 2016 at 12:30 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks..I’ve been trying to learn. My wife is coming with me. Think we will be recording the visit so as not to forget anything.
  - July 20, 2016 at 12:30 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks..I’ve been trying to learn. My wife is coming with me. Think we will be recording the visit so as not to forget anything.
  - July 20, 2016 at 12:30 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks..I’ve been trying to learn. My wife is coming with me. Think we will be recording the visit so as not to forget anything.
  - July 20, 2016 at 1:16 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks..I’ve been trying to learn. My wife is coming with me. Think we will be recording the visit so as not to forget anything.
  - July 20, 2016 at 1:16 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks..I’ve been trying to learn. My wife is coming with me. Think we will be recording the visit so as not to forget anything.
  - July 20, 2016 at 1:16 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks..I’ve been trying to learn. My wife is coming with me. Think we will be recording the visit so as not to forget anything.
- - July 19, 2016 at 9:44 pm
  - Quote
  jennunicorn
  Participant
  http://www.uwhealth.org/locations/clinic_detail.jsp;jsessionid=A2CD78CB845399ABAA2AF16073544A6B.ehpjavare02_inst1?sublocationId=370
  
  Melanoma Clinic at UW Carbone Cancer Center in Madison is where you should go. You need a melanoma oncologist.
  - July 20, 2016 at 12:33 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks so much for the referral. Kinda lost at the moment…gotta get it figured out fast tho..
    Much love.
    Pat
  - July 20, 2016 at 12:33 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks so much for the referral. Kinda lost at the moment…gotta get it figured out fast tho..
    Much love.
    Pat
  - July 20, 2016 at 12:33 am
    
    Quote
    Patrick O.
    Participant
    
    Thanks so much for the referral. Kinda lost at the moment…gotta get it figured out fast tho..
    Much love.
    Pat
- - July 19, 2016 at 9:44 pm
  - Quote
  jennunicorn
  Participant
  http://www.uwhealth.org/locations/clinic_detail.jsp;jsessionid=A2CD78CB845399ABAA2AF16073544A6B.ehpjavare02_inst1?sublocationId=370
  
  Melanoma Clinic at UW Carbone Cancer Center in Madison is where you should go. You need a melanoma oncologist.
- - July 19, 2016 at 9:44 pm
  - Quote
  jennunicorn
  Participant
  http://www.uwhealth.org/locations/clinic_detail.jsp;jsessionid=A2CD78CB845399ABAA2AF16073544A6B.ehpjavare02_inst1?sublocationId=370
  
  Melanoma Clinic at UW Carbone Cancer Center in Madison is where you should go. You need a melanoma oncologist.
- - July 20, 2016 at 5:21 pm
  - Quote
  jvictoria
  Participant
  The drive to Chicago may be worth it… Dr. Luke and Dr. Gajewski at the Univeristy of Chicago are excellent melanoma specialist and both have a number of melanoma clinical trials that they work on.
- - July 20, 2016 at 5:21 pm
  - Quote
  jvictoria
  Participant
  The drive to Chicago may be worth it… Dr. Luke and Dr. Gajewski at the Univeristy of Chicago are excellent melanoma specialist and both have a number of melanoma clinical trials that they work on.
- - July 20, 2016 at 5:21 pm
  - Quote
  jvictoria
  Participant
  The drive to Chicago may be worth it… Dr. Luke and Dr. Gajewski at the Univeristy of Chicago are excellent melanoma specialist and both have a number of melanoma clinical trials that they work on.