going for surgery

This topic has 63 replies, 9 voices, and was last updated 9 years, 4 months ago by jamieth29.

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- December 26, 2015 at 4:43 pm
- Quote
jamieth29
Participant
Just wanted to thank everyone here for the immense information and support everyone gives. After being on the braf drugs for about 4 months and using them for as a sort of neo adjuvant I’m going for surgery dec 30th at university of Chicago. I will have a resection of my leg where I’ve had many intransit spots but confined to about a 4 inch area. I am also laproscopic surgery to my iliac area to clear some lymph nodes out of that area. I had one external iliac node show up on pet and ct enlarged to 18mm. The drugs reduced it to 7mm and that was on my sept ct scan. The spots on my leg also disappeared. Hopefully pathology shows necrotic tissue. I’m nervous to say the least but also know i have to get through this and see what happens. The plan is to stop drugs after surgery and see if it comes back. I am going to look for some kind of trial. Not sure what yet but might be a vaccine trial. The last four months have been almost normal going back to my carpentry job and having 0 side effects from drugs. I’m really nervous about lymphedema but if i get it i will cross that bridge when i get there. Also nervous for the kids seeing me in the hospital again. I will be inpatient for a full week through new years so that sucks. Be kind of interesting to see how this approach works. Doctor says i will still be stage 3c after surgery and if all goes according to plan 3c ned so finding a trial will be a challenge. I do believe right now the drugs have rendered me ned. Anyway have a beer for me on new years. Hope everyone enjoyed Christmas. I’ll update with path results after i get motivated after this surgery. Doctors are saying 6-8 weeks till I’m fully recovered so I’m setting my sights on 5 weeks just cause i like proving something to myself. Take care everyone.
Jamie

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Replies

- - December 26, 2015 at 8:02 pm
  - Quote
  Bubbles
  Participant
  That's a tough road, Jamie…but so are you! Hope surgery goes well with the best results possible followed by a rapid recovery, leading to your best year ever. Celeste
- - December 26, 2015 at 8:02 pm
  - Quote
  Bubbles
  Participant
  That's a tough road, Jamie…but so are you! Hope surgery goes well with the best results possible followed by a rapid recovery, leading to your best year ever. Celeste
- - December 26, 2015 at 8:02 pm
  - Quote
  Bubbles
  Participant
  That's a tough road, Jamie…but so are you! Hope surgery goes well with the best results possible followed by a rapid recovery, leading to your best year ever. Celeste
  - December 27, 2015 at 3:55 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Celeste means a lot to me i appreciate the words.
  - December 27, 2015 at 3:55 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Celeste means a lot to me i appreciate the words.
  - December 27, 2015 at 3:55 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Celeste means a lot to me i appreciate the words.
- - December 27, 2015 at 5:42 am
  - Quote
  Jubes
  Participant
  Well done Jamie. I always fall asleep before midnight on new years anyway! I hope 2016 is a great year for you and you continue ned
  
  anne-Louise
- - December 27, 2015 at 5:42 am
  - Quote
  Jubes
  Participant
  Well done Jamie. I always fall asleep before midnight on new years anyway! I hope 2016 is a great year for you and you continue ned
  
  anne-Louise
- - December 27, 2015 at 5:42 am
  - Quote
  Jubes
  Participant
  Well done Jamie. I always fall asleep before midnight on new years anyway! I hope 2016 is a great year for you and you continue ned
  
  anne-Louise
  - December 27, 2015 at 3:56 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Ann-Louise
  - December 27, 2015 at 3:56 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Ann-Louise
  - December 27, 2015 at 3:56 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Ann-Louise
- - December 27, 2015 at 1:53 pm
  - Quote
  Linny
  Participant
  I hope all goes well with the surgery and that you remain a member of the NED club.
  
  Lymphedema will be a concern, so what I would do is seek out a physical therapist who can educate you on what to look out for and how to do some self massage for lymphatic drainage.
- - December 27, 2015 at 1:53 pm
  - Quote
  Linny
  Participant
  I hope all goes well with the surgery and that you remain a member of the NED club.
  
  Lymphedema will be a concern, so what I would do is seek out a physical therapist who can educate you on what to look out for and how to do some self massage for lymphatic drainage.
- - December 27, 2015 at 1:53 pm
  - Quote
  Linny
  Participant
  I hope all goes well with the surgery and that you remain a member of the NED club.
  
  Lymphedema will be a concern, so what I would do is seek out a physical therapist who can educate you on what to look out for and how to do some self massage for lymphatic drainage.
  - December 27, 2015 at 3:56 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Linny.
  - December 27, 2015 at 3:56 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Linny.
  - December 27, 2015 at 3:56 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Linny.
  - December 27, 2015 at 4:15 pm
    
    Quote
    Linny
    Participant
    
    There's no guarantee that you'll get lymphedema nor is there a guarantee that you won't. It's best to stay ahead of the game.
    
    Forgot to mention that you will definitely need to get measured for a support garment in the event you travel anywhere by plane. Air travel can cause swelling in limbs and that's the last thing you need when you're at risk for lymphedema. In your case it sounds like it'll be socks/stockings. While you can get them in stores, it's best to get measured by a therapist to ensure that the compression level and size are correct for you.
    
    Hang in there! Things do get easier with time.
  - December 27, 2015 at 4:15 pm
    
    Quote
    Linny
    Participant
    
    There's no guarantee that you'll get lymphedema nor is there a guarantee that you won't. It's best to stay ahead of the game.
    
    Forgot to mention that you will definitely need to get measured for a support garment in the event you travel anywhere by plane. Air travel can cause swelling in limbs and that's the last thing you need when you're at risk for lymphedema. In your case it sounds like it'll be socks/stockings. While you can get them in stores, it's best to get measured by a therapist to ensure that the compression level and size are correct for you.
    
    Hang in there! Things do get easier with time.
  - December 27, 2015 at 4:15 pm
    
    Quote
    Linny
    Participant
    
    There's no guarantee that you'll get lymphedema nor is there a guarantee that you won't. It's best to stay ahead of the game.
    
    Forgot to mention that you will definitely need to get measured for a support garment in the event you travel anywhere by plane. Air travel can cause swelling in limbs and that's the last thing you need when you're at risk for lymphedema. In your case it sounds like it'll be socks/stockings. While you can get them in stores, it's best to get measured by a therapist to ensure that the compression level and size are correct for you.
    
    Hang in there! Things do get easier with time.
  - December 27, 2015 at 4:34 pm
    
    Quote
    jamieth29
    Participant
    
    Linny,
    I’ve had a superficial dissection already and have the compression socks already. I’m nervous about it because my leg has been through a lot already so not sure how much more it can take. Thanks for the advice i appreciate it.
  - December 27, 2015 at 4:34 pm
    
    Quote
    jamieth29
    Participant
    
    Linny,
    I’ve had a superficial dissection already and have the compression socks already. I’m nervous about it because my leg has been through a lot already so not sure how much more it can take. Thanks for the advice i appreciate it.
  - December 27, 2015 at 4:34 pm
    
    Quote
    jamieth29
    Participant
    
    Linny,
    I’ve had a superficial dissection already and have the compression socks already. I’m nervous about it because my leg has been through a lot already so not sure how much more it can take. Thanks for the advice i appreciate it.
- - December 27, 2015 at 4:08 pm
  - Quote
  gregor913
  Participant
  Good luck on the surgery. I’m recovering from my alnd still. I’m from chicago too. Is this your first clnd procedure. I start yervoy 10mg for adjuvant tomorrow. That might be an option since your 3c and I’m 3b. Greg
- - December 27, 2015 at 4:08 pm
  - Quote
  gregor913
  Participant
  Good luck on the surgery. I’m recovering from my alnd still. I’m from chicago too. Is this your first clnd procedure. I start yervoy 10mg for adjuvant tomorrow. That might be an option since your 3c and I’m 3b. Greg
- - December 27, 2015 at 4:08 pm
  - Quote
  gregor913
  Participant
  Good luck on the surgery. I’m recovering from my alnd still. I’m from chicago too. Is this your first clnd procedure. I start yervoy 10mg for adjuvant tomorrow. That might be an option since your 3c and I’m 3b. Greg
  - December 27, 2015 at 4:15 pm
    
    Quote
    jamieth29
    Participant
    
    Hey Greg,
    Its not my first dissection. I have had a superficial groin dissection and a further iliac dissection that went after a couple nodes. Unfortunately i have been through this before. I may consider ipi…gonna see what path says i guess. I know i need to do something.
  - December 27, 2015 at 4:15 pm
    
    Quote
    jamieth29
    Participant
    
    Hey Greg,
    Its not my first dissection. I have had a superficial groin dissection and a further iliac dissection that went after a couple nodes. Unfortunately i have been through this before. I may consider ipi…gonna see what path says i guess. I know i need to do something.
  - December 27, 2015 at 4:15 pm
    
    Quote
    jamieth29
    Participant
    
    Hey Greg,
    Its not my first dissection. I have had a superficial groin dissection and a further iliac dissection that went after a couple nodes. Unfortunately i have been through this before. I may consider ipi…gonna see what path says i guess. I know i need to do something.
- - December 27, 2015 at 9:01 pm
  - Quote
  Gwenmorgan
  Participant
  I was recently in the hospital for 6 days just before Christmas – what helped with the children visiting me (7,9 &11) was a "love" box of activities for them to do with me to help decorate the hospital room – the new very busy patterned (relaxing coloring books from Michaels were $5ea, then colored pencils and little snacks for them. My husband let them run like mad first outside so that they were "settled" to watch tv or hang with me. My middle daughter brought her homework with her and read a book to me – that was the most peaceful time. We also played ipad music in the hospital room instead of the tv – made it feel more like our space. And the kids also brought a pizza one night and we all ate in the visiting area.
  
  Best wishes on the surgery!
- - December 27, 2015 at 9:01 pm
  - Quote
  Gwenmorgan
  Participant
  I was recently in the hospital for 6 days just before Christmas – what helped with the children visiting me (7,9 &11) was a "love" box of activities for them to do with me to help decorate the hospital room – the new very busy patterned (relaxing coloring books from Michaels were $5ea, then colored pencils and little snacks for them. My husband let them run like mad first outside so that they were "settled" to watch tv or hang with me. My middle daughter brought her homework with her and read a book to me – that was the most peaceful time. We also played ipad music in the hospital room instead of the tv – made it feel more like our space. And the kids also brought a pizza one night and we all ate in the visiting area.
  
  Best wishes on the surgery!
- - December 27, 2015 at 9:01 pm
  - Quote
  Gwenmorgan
  Participant
  I was recently in the hospital for 6 days just before Christmas – what helped with the children visiting me (7,9 &11) was a "love" box of activities for them to do with me to help decorate the hospital room – the new very busy patterned (relaxing coloring books from Michaels were $5ea, then colored pencils and little snacks for them. My husband let them run like mad first outside so that they were "settled" to watch tv or hang with me. My middle daughter brought her homework with her and read a book to me – that was the most peaceful time. We also played ipad music in the hospital room instead of the tv – made it feel more like our space. And the kids also brought a pizza one night and we all ate in the visiting area.
  
  Best wishes on the surgery!
  - December 27, 2015 at 9:40 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Gwenmorgan.
    There gonna stay in schomburg and the wife is taking them to lego land. It scares them when they see me in hospital and it about breaks me in 2
  - December 27, 2015 at 9:40 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Gwenmorgan.
    There gonna stay in schomburg and the wife is taking them to lego land. It scares them when they see me in hospital and it about breaks me in 2
  - December 27, 2015 at 9:40 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Gwenmorgan.
    There gonna stay in schomburg and the wife is taking them to lego land. It scares them when they see me in hospital and it about breaks me in 2
  - December 28, 2015 at 2:57 am
    
    Quote
    tschmith
    Participant
    
    Good luck and hoping for the best results possible!!!!!!!! Keeping you in my prayers. May 2016 be a wonderful year for you!
    
    Terrie
  - December 28, 2015 at 2:57 am
    
    Quote
    tschmith
    Participant
    
    Good luck and hoping for the best results possible!!!!!!!! Keeping you in my prayers. May 2016 be a wonderful year for you!
    
    Terrie
  - December 28, 2015 at 2:57 am
    
    Quote
    tschmith
    Participant
    
    Good luck and hoping for the best results possible!!!!!!!! Keeping you in my prayers. May 2016 be a wonderful year for you!
    
    Terrie
  - December 28, 2015 at 2:57 am
    
    Quote
    tschmith
    Participant
    
    Good luck and hoping for the best results possible!!!!!!!! Keeping you in my prayers. May 2016 be a wonderful year for you!
    
    Terrie
  - December 28, 2015 at 2:57 am
    
    Quote
    tschmith
    Participant
    
    Good luck and hoping for the best results possible!!!!!!!! Keeping you in my prayers. May 2016 be a wonderful year for you!
    
    Terrie
  - December 28, 2015 at 2:57 am
    
    Quote
    tschmith
    Participant
    
    Good luck and hoping for the best results possible!!!!!!!! Keeping you in my prayers. May 2016 be a wonderful year for you!
    
    Terrie
  - December 28, 2015 at 2:49 pm
    
    Quote
    jamieth29
    Participant
    
    Thank you Terrie.
  - December 28, 2015 at 2:49 pm
    
    Quote
    jamieth29
    Participant
    
    Thank you Terrie.
  - December 28, 2015 at 2:49 pm
    
    Quote
    jamieth29
    Participant
    
    Thank you Terrie.
- - December 28, 2015 at 2:10 pm
  - Quote
  jenny22
  Participant
  Jamie-
  
  Wanted to wish you good luck on your upcoming surgery…and more importlantly good results, good path report, and good recovery!!!!
  
  Wil be thinking about you and sneding good thoughts for the best outcome!
  
  Adjuvant treaments still hard for NED 3B and 3C, even with IPI out there…..i am trying to find same, and not many options…..
  
  Best,
  
  jenny
- - December 28, 2015 at 2:10 pm
  - Quote
  jenny22
  Participant
  Jamie-
  
  Wanted to wish you good luck on your upcoming surgery…and more importlantly good results, good path report, and good recovery!!!!
  
  Wil be thinking about you and sneding good thoughts for the best outcome!
  
  Adjuvant treaments still hard for NED 3B and 3C, even with IPI out there…..i am trying to find same, and not many options…..
  
  Best,
  
  jenny
- - December 28, 2015 at 2:10 pm
  - Quote
  jenny22
  Participant
  Jamie-
  
  Wanted to wish you good luck on your upcoming surgery…and more importlantly good results, good path report, and good recovery!!!!
  
  Wil be thinking about you and sneding good thoughts for the best outcome!
  
  Adjuvant treaments still hard for NED 3B and 3C, even with IPI out there…..i am trying to find same, and not many options…..
  
  Best,
  
  jenny
  - December 28, 2015 at 2:53 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Jenny,
    I might look at a vaccine trial not sure yet. I would really like to try a pd-1 adjuvant trial but not much going for that right now. There is a placebo vs keytruda but I’m not willing to travel and get a iv with nothing in it. The only advantage would be scans and i van get those closer.
  - December 28, 2015 at 2:53 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Jenny,
    I might look at a vaccine trial not sure yet. I would really like to try a pd-1 adjuvant trial but not much going for that right now. There is a placebo vs keytruda but I’m not willing to travel and get a iv with nothing in it. The only advantage would be scans and i van get those closer.
  - December 28, 2015 at 2:53 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Jenny,
    I might look at a vaccine trial not sure yet. I would really like to try a pd-1 adjuvant trial but not much going for that right now. There is a placebo vs keytruda but I’m not willing to travel and get a iv with nothing in it. The only advantage would be scans and i van get those closer.
  - December 28, 2015 at 3:43 pm
    
    Quote
    jenny22
    Participant
    
    Hi Jamie-
    
    We sound like we are both in search of the same thing…though I had already done a vaccine trail…I was looking for PD-1 and only found same, with placebo, and not willing to travel for 50% risk of placebo…
    
    And as we've talked about before, no one wans to give me IPI right now based on the colitis i incurred after the vaccine.
    
    I am due to start radiation tomorrow……I am fully aware that is only beneficial for local control, but am going to do it after 4 different RAD ONC consults.
    
    PAVLICK still reccommending Leukine after radtiation, though I know there would be mixed opinions on that too…..
    
    Best of luck on your surgery, and lets see what we both do regaindg adjuvant treatments next!!!!!!!
    
    Hoping for a healthy and reccurrernce free 2016!
    
    Best,
    
    jenny
  - December 28, 2015 at 3:43 pm
    
    Quote
    jenny22
    Participant
    
    Hi Jamie-
    
    We sound like we are both in search of the same thing…though I had already done a vaccine trail…I was looking for PD-1 and only found same, with placebo, and not willing to travel for 50% risk of placebo…
    
    And as we've talked about before, no one wans to give me IPI right now based on the colitis i incurred after the vaccine.
    
    I am due to start radiation tomorrow……I am fully aware that is only beneficial for local control, but am going to do it after 4 different RAD ONC consults.
    
    PAVLICK still reccommending Leukine after radtiation, though I know there would be mixed opinions on that too…..
    
    Best of luck on your surgery, and lets see what we both do regaindg adjuvant treatments next!!!!!!!
    
    Hoping for a healthy and reccurrernce free 2016!
    
    Best,
    
    jenny
  - December 28, 2015 at 3:43 pm
    
    Quote
    jenny22
    Participant
    
    Hi Jamie-
    
    We sound like we are both in search of the same thing…though I had already done a vaccine trail…I was looking for PD-1 and only found same, with placebo, and not willing to travel for 50% risk of placebo…
    
    And as we've talked about before, no one wans to give me IPI right now based on the colitis i incurred after the vaccine.
    
    I am due to start radiation tomorrow……I am fully aware that is only beneficial for local control, but am going to do it after 4 different RAD ONC consults.
    
    PAVLICK still reccommending Leukine after radtiation, though I know there would be mixed opinions on that too…..
    
    Best of luck on your surgery, and lets see what we both do regaindg adjuvant treatments next!!!!!!!
    
    Hoping for a healthy and reccurrernce free 2016!
    
    Best,
    
    jenny
- - December 29, 2015 at 3:56 pm
  - Quote
  dfeng
  Participant
  best wishes.
- - December 29, 2015 at 3:56 pm
  - Quote
  dfeng
  Participant
  best wishes.
- - December 29, 2015 at 3:56 pm
  - Quote
  dfeng
  Participant
  best wishes.
- - January 9, 2016 at 8:31 pm
  - Quote
  jenny22
  Participant
  Hi Jamie-
  
  Wanted to check in and see how you are doing……how did your surgery go on the 30th.???
  
  Hope you are feeling ok..let us know how you are doing!
  
  Best,
  
  jenny
- - January 9, 2016 at 8:31 pm
  - Quote
  jenny22
  Participant
  Hi Jamie-
  
  Wanted to check in and see how you are doing……how did your surgery go on the 30th.???
  
  Hope you are feeling ok..let us know how you are doing!
  
  Best,
  
  jenny
- - January 9, 2016 at 8:31 pm
  - Quote
  jenny22
  Participant
  Hi Jamie-
  
  Wanted to check in and see how you are doing……how did your surgery go on the 30th.???
  
  Hope you are feeling ok..let us know how you are doing!
  
  Best,
  
  jenny
  - January 10, 2016 at 3:33 am
    
    Quote
    jamieth29
    Participant
    
    Hi Jenny just put a new update in…thank you for asking.
  - January 10, 2016 at 3:33 am
    
    Quote
    jamieth29
    Participant
    
    Hi Jenny just put a new update in…thank you for asking.
  - January 10, 2016 at 3:33 am
    
    Quote
    jamieth29
    Participant
    
    Hi Jenny just put a new update in…thank you for asking.