Recurrence and worried.

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Recurrence and worried.

This topic has 2 replies, 3 voices, and was last updated 1 year, 7 months ago by Lucas.

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- March 20, 2023 at 10:44 pm
- Quote
Alydar77
Participant
After being off of nivo and ippi for 6 years I have a recurrence in my right lung. I was stage 4 with tumors in my liver, lungs and pancreas. I was BRAF positive and started Mekinist and Tafinlar. I stayed on this for 6 months until progression. Then I started nivo and ippi for 17 months. I had clear scans for 7 years until now.

Had a pet scan due to a kidney stone in early January. Followed up with a pet scan on February 4th. The only thing that lite up was a mass in my right lung. It had been there for 8 years but hasn’t lite up in 7 years. I had a needle biopsy march 2nd to confirm that my melanoma is back. Plan is to remove my right lower lobe.

I’m worried that due to all the time it is taking to get my tumor removed that it will spread to other places. Should I be worried??? Does anybody have any experience in a recurrence after this long? All of this is taking place at Vanderbilt. Any advice will be appreciated.
Thanks

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- - March 21, 2023 at 12:40 pm
  - Quote
  OnJnAnT
  Participant
  Hello!
  
  I don’t have experience with recurrence after such a long period post successful treatment, however I did have a right lung nodule that took a while to diagnose and treat (about 7 months?). I did end up getting on ipi/nivo, which ended up being successful for that nodule.
  
  I also can’t speak to the decision to remove your lower lobe, which may be recommended if your nodule is large – mine was always less than 2 cm, and grew very slowly, but I’d also talk to your oncologist about further systemic treatment to prevent further progression – maybe more immunotherapy which you had previously had success with. Also, getting a second opinion may be warranted if it seems that there is any question about whether to do surgery vs additional systemic/targeted therapies (immunotherapy, SRS, etc.). Hoping others can chime in to add their thoughts.
  
  Jeff
- - March 21, 2023 at 10:49 pm
  - Quote
  Lucas
  Participant
  I’ve read though I can’t post a link. Most recurrences after using these drugs(ipi /nivo)and having mainly a partial or complete response. That recurrences are generally isolated and treatable generally in the form of surgery. Sorry, I can’t post a link to a study, but I’ve read Soo many things over the years that this in particular is stored in my brain. Also a good reminder to not stop getting scans and staying proactive. Best of outcome!

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