› Forums › General Melanoma Community › Please HELP! Stage 3 to Stage 4 in hilar node(lung). Trestment options below.
- This topic has 9 replies, 4 voices, and was last updated 6 years, 1 month ago by Mark_DC.
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- March 22, 2018 at 6:33 pm
I have been stage 3 for about 1 year, following removal of inguinal and pelvic nodes. Currently on Opdivo. Metastasis found this week in hilar (lung) node. Clear everywhere else. My MD Anderson oncologist has asked the thoracic team if this is operable. No answer yet. Another option she mentioned is radiation with continuation of Opdivo. Has anyone had a hilar node removed? Is it possible?Radiation to hilar node? Desperate for information about these
treatments, any successes, failures or advice. Please and thank you.
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- March 22, 2018 at 7:15 pm
Hey Michelle,
So sorry sweetie. Was really hoping the lesion wouldn't be melanoma. I know you are anxious to figure out what to do. I think both plans sound reasonable. I know someone who happened to be in my trial with me who had a similar node removed…hers was a "paratracheal lymph node that was pressing on the superior vena cava". Now this was back in the day! She had to fight to get surgeons to finally remove it…but it was successfully done and she was in the same arm of my trial that I was and is still trucking today. At any rate, I reached out to her and she is willing to discuss with you if you would like. If you want to reach her….email me through my MPIP contact and I have her permission to share her email address.
Hang in there. Fingers crossed for better news for you soon. Celeste
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- March 23, 2018 at 3:30 am
Celeste, I didn't read your reply until I wrote mine below. Based on what Dr. Sharfman told me and what my wife, an RN, said at the time, it didn't sound like surgery was possible in that area. I wonder if I had pressed that issue of surgery whether I would be home instead of sitting where I am now.
-Bill
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- March 23, 2018 at 3:43 am
Hey, Bill. I don't know, sweetie. Sadly, melanoma is a crap shoot!! However, surgery is something that I certainly think has saved many of us. But, it is not always an option. I obviously don't know if it is an option for Michelle. Had I been in either of your shoes I would have tried to find someone who would remove such a lesion. Though clearly sometimes that can be done and sometimes not. Michelle is in a different boat that I was and my trial mate was in several ways. For my fellow rattie and I…there were no FDA approved treatments available…as this was 2010 and before. And…given that fact….neither she nor I had had any systemic treatment when we entered our trial. Michelle has, as I understand it, already been treated with ipi/nivo. So….she is facing a fair number of hard choices.
I am holding both of you in my heart and keeping my fingers crossed for both of you. ~ c
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- March 23, 2018 at 3:26 am
Hi Michelle,
After over a year on Keytruda, and the complete resolution of three skin lesions and multiple nodules in one lung I wound up with cancer first in my hilar and subcarinal nodes. Nobody ever mentioned the possibility of surgery to me. Plan A from my local oncologist was radiation and more Keytruda. But throughout my journey I always have kept Dr. Sharfman at Johns Hopkins in my pocket, so I went to see him.
Like my local oncologist, Dr. Sharfman didn't offer surgery as a possibility to me. He also added that he didn't think radiation was my best option. He suggested that I apply for the anti-LAG-3 trial at Johns Hopkins. I went there for 6 months and received a combination of Opdivo and the experimental drug now called "relatlimab." Some people who have not had success with a PD-1 drug alone, or who like me stopped responding to it, have had some success on that trial. So that could be an option for you.
Unfortunately it didn't work for me, and after six months, and two consecutive scans showing progression, I was taken out of the trial. I write this to you tonight from my room at NIH, where tomorrow I begin the chemo regimen to start the TIL trial here.
I wish I could tell you that surgery is an option, but in my case at least it wasn't. See if there are any trials you would qualify for, and talk to your doctor about them. That might be your best option.
-Bill
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- March 23, 2018 at 1:11 pm
Bill and Celeste, thank you. My oncologist at MDAnderson initially said it would be very difficult to resect a hilar node, as did the pulmonologist who biopsied it this week. However, onc called me back yesterday andcsaud there us a thoracic surgeon there who says it should be “relatively easy” dincevthete are no other lesions. The surgeon is Dr. Antonoff. I know have some other medical issues creeping up so hoping all will still go as planned. Thru will harvest the tumor in case I need the treatment you are getting, Bill. I hope it is 100% successful for you. Thanks to you both. Hugs from Kentucky.-
- March 23, 2018 at 1:16 pm
Wow lots of typos in there. Sorry -
- March 24, 2018 at 3:15 am
Good luck to both of you. Michelle, great you did find a surgeon – if i face a similar problem then i should seek opinions on this board, in case surgery actually is possible. And Bill wish you a peaceful weekend at home, and then good luck on Monday!
best wishes Mark
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