Got the Results of my First PET
REGISTER
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.

Got the Results of my First PET

› Forums › General Melanoma Community › Got the Results of my First PET

  • Post
    • November 20, 2018 at 3:10 pm
    AMcReader
    Participant

    Ok, I got the results of my first PET scan and I’m afraid they are really bad with very high SUV uptake in my lung tumors (none anywhere else though!!!). Have people still had a response on immunotherapy when tumors had a high SUV uptake? I’m about to start the combo and I’m feeling like there is something more I should be doing or pursuing. Should I be pushing to have the nodule with the greatest uptake taken out? Any advice?? I’m getting so anxious…

    Here is the part of the path report, I’m worried about: 

    – Hypermetabolic mass noted within the right lower lobe of the lung with maximum SUV of 15.4. This abuts the pleura. Hypermetabolic right hilar mass with maximum SUV of 9.2. 

    I’d be really appreciative of anyone who can help me understand it and weigh in with thoughts and opinions.

     

Viewing 1 reply thread
  • Replies
      • November 20, 2018 at 5:57 pm
      Edwin
      Participant

      From my August 24, 2016 PET scan:

      "There is still some residual activity in the left 3rd rib posteriorly. SUV maximum of 5.3 versus 10.6 on the previous study."

      The previous study was my March 1, 2016 PET scan which showed melanoma in many bones.  I began the ipi nivo combo on April 1, 2016.   My bone cancer seems to be gone now. 

      So the ipi nivo combo might help, even after a high SUV in a PET scan.

        • November 20, 2018 at 6:55 pm
        AMcReader
        Participant

        Thank you so much for this response, Edwin. I’ve been on a roller coaster ride this past week and this report sent me tumbling into a sea of emotions. I am so relieved to read that you had a response to the combo! 

        • November 20, 2018 at 10:43 pm
        Edwin
        Participant

        For me ipi nivo combo side effects were much worse than those of pembro ( before the combo ) and nivo ( after the combo ).   With the combo I  had very bad diarrhea and lost too much weight.  My oncologist postponed my 2nd infusion of ipi and nivo until 9 weeks after my 1st one.  I needed to regain weight.  Be sure to contact your oncologist office promptly, if you have worrying side effects.

        • November 22, 2018 at 1:04 am
        AMcReader
        Participant

        That is really good to know. I will stock up with some things that will hopefully help me keep my weight in the right range. 

        Happy Thanksgiving!

      • November 21, 2018 at 6:05 pm
      GeoTony
      Participant

      Hi Amanda, your post got me thinking so I dug back through my notes and my initial PET had 3 SUV uptakes of 12.2 (lung) / 8.5 (sternum) / 5.4 (Liver), went through the ipi/nivo combo, managed 2 before skin rash and lung issues stopped treatment, however the bone tumours had resolved and I was then onto pendersone for 6 weeks, managed a third combo treatment, then moved to nivo maintenance, every 2 weeks for the last 18 months. My current prognosis is stable disease, in fact one of my lung tumours had dissappeared at my last scan, I still have lung / liver tumours, largest is @ 2.5cmx3cm, but I'm fit and healthy, clean bloodwork since the combo stopped. The combo was tough, but the result has been great, would like NED, but I'm happy with stable. Next PET scan is on the 5th Dec, 2yr follow up, this treatment ends in March next year, so I'm currently looking around for the next option to keep up the fight. You can do this

      Tony

        • November 22, 2018 at 1:02 am
        AMcReader
        Participant

        Hi Tony, Thank you so much for taking the time to dig back through your scans! It’s encouraging to hear from someone else who had a high SUV uptake and still had a response.

        I was able to talk to my oncologist today and she eased my mind a lot — she did not view my uptake as *that* high, she has patients with SUV uptake in the 40s.  It’s high but the rest of my body and brain are clear (which was not the case when I started this journey) so she believes that the Nivo alone is absolutely doing something and that the uptake likely includes both cancer and the immune system response. 

        Oh, what a journey this is!

        Random, but I remember you posting about personalized oncogenics a few weeks ago. Did anything ever come of that? I’m very curious about the whole thing.

        Take care and happy Thanksgiving!!!

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.

Popular Topics