Pelvic lymph node lit up

Posted By
Tracyyy
2/13/2018 4:30pm
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Replies: 4

Hi all,
My mum had positive lymph nodes in groin and had them removed on 12/12/2017. 6 of them were removed and 3 were positive for melanoma. She recovered from surgery and had PET/CT scan yesterday in order to plan further treatment. Today we got the results and one pelvic node lit up. It had quite high SUV uptake like 22. Trying to be positive and good thing is she is still stage 3 C. Before PET scan we were had a plan to go with local radiation and Nivo adjuvant but this node messed up our plans and I am getting overwhelmed. Tommorow we are going to see what our onc will suggest. I was hoping so much that the scan would be clear. Now I am trying to put myself together and be strong for my mum and help her go ahead with decisions. Thank you all for being there! Needed to share my feelings...

Bubbles - (2/13/2018 - 7:35pm)

I wish things had been clear...but your mom can still do this.  Nivo alone could still be a great plan.  Nivo with ipi might be a good option. Removing one more node might be smart.  Remember folks like me (Stage IV with lung and brain mets!!! SRS to brain, surg to lung.) remain NED after doing Nivo alone.  Started my trial in 2010, last dose in June of 2013....still NED.  Hang in there.  celeste

Tracyyy - (2/17/2018 - 11:10am)

Thanks for always being so supportive, Les!

I read your story each time I get overwhelmed and it gives me so much hope... Best wishes to you.

CindyJ - (2/14/2018 - 12:38am)

Hi Tracy, the same thing happened to my mom, and her SUV was 19+. However, our oncologist then staged her at 4 since the melanoma moved further up her lymph chain. This opened up more treatment options, though I think here in the US, Stage 3 allows for immunotherapy now.

I hope you can get to Israel and receive Keytruda or equivalent. My mom is in a genomic trial where they tested her pelvic lymph node for a mutation. She is CCND1 amplified and currently on a breast cancer drug, Ibrance, to stop and kill the melanoma. It’s working. I know how scared you are for her. There are so many new things to try if you can get to them. Thinking good thoughts for you both. Cindy

Tracyyy - (2/17/2018 - 11:08am)

Thank you Cindy,

We will definitely make the mutation testing after we get rid of this pelvic node. The issue with mutations is quite interesting as you have found a breast cancer drug working for you!  I will get anywhere on earth to get to proper treatment. Sending positive vibes to you and your mum.