Hello everyone!
I first want to say "Thank you!" to everyone who replied to my first post in December. The encouragement and stories really helped! I'm not much of a "poster" but check out the site every other day or so. My onc is always amazed at the facts and information I come in with at my appts. It's thanks to all of you.
Just to recap:
DX in May 2016 with stage 1b to lower right leg
Found enlarged lymph node in groin, positve for melanoma, and had CLND in July 2017…stage 3
Routine 6 month CT found enlarged external iliac node, positive for melanoma, ordered PET and found 10 small mets in liver, and uptick of activity near my CLND site…stage 4
Started Opdivo only due to history of colitis on Jan. 3rd. Have had 7 infusions with only slight nausea
Now for the good news. Had my first PET this week since stage 4 dx, and met with Onc the same day to go over results. She hadn't looked at them yet when we met, so I was pretty nervous. She could tell and just told me these are the first scans and the only "bad" results would be if there are any new mets that had popped up in kidney, lungs, or any other organs. She said she would be happy with no change, or even if things only grew by a little. She opened the report, and her first words were, "Oh my!" The first line of the report was "Overall treatment response". She then went line by line. The lymph node went from 3.2×2.2 to 2.1×1.6 with the SUV going from 15.2 to 2.1! The site near my CLND SUV went from 5.5 to 2.1! Now for the liver: "Interval resolution of prior hypermetabolic lesions from last PET". I asked her what that meant and she said the radiologist could find no mets at all in the liver!! She did a side by side comparison from Dec. with the current PET, and went slide by slide through both and I could see the little glowing spots in Dec. and NOTHING in the liver this time. We were ecstatic!! She said this was by far the best results we could have hoped for.
I am continuing my Opdivo every two weeks and will have another PET or CT in 3 months. I know this is just step 1 in a long journey, but I had to post and let others know there is good news and reasons to be hopeful with these new therapies.
Thank you all for your input, stories, and knowlegde of this subject. It has helped me more than you all wil ever know. I wish you all success with this fight and continued hope for the future.
Steve
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