The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.
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.
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.
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!
Viewing 1 reply thread
You must be logged in to reply to this topic.
About the MRF Patient Forum
The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.
The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.