Had CT guided biopsy on Friday

Posted By
NicholePhillips
8/20/2017 6:50pm
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Replies: 9

I was diagnosed in February 2015. I had a mole that kept growing on my right ankle. I had a wide excision, skin graft and sentinel node biopsy which came back positive. 2 weeks later I had 8 lymph nodes removed from my right groin area and only 1 was positive. I was stage 3b. It took about 2 months to heal and then I started a year of interferon. I was sick the whole year. I completed that in June 2016. Scans every 3 months. January 2017 scans were clear so now scans every 6 months. I had my scans a couple weeks ago and they found a large mass(6cm) in my right pelvic area believed to be lymph node related. August 18, 2017 I had a CT guided biopsy to confirm the melanoma is back. Now I wait. Has anyone experienced this and if so what treatment options were you given?

Sorry you are having worry about all this, Nicole.  Hopefully, your results will NOT prove to be melanoma.

If it should be, you certainly need to see a melanoma specialist.  Here are two replys to others on this forum in which I reviewed basic current standard of care/treatments for melanoma:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/just-yervoy-vs-nivolumab#comment-106860  

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/just-diagnosed-stageiv-left#comment-106495  

Hope this helps.  Celeste

Thank you so much. I go the Cleveland Clinic where they do specialize in Melanoma. It's def a roller coaster ride. 

Hi Nichole, this is similar to my mom's story. Though her melanoma was on the bottom of her right foot. She had removal and skin graft and all lymph nodes is right groin and lower right pelvic area removed. A year and half later, pelvic iliac node confirmed melanoma, and maybe a lung nodule (not tested).

They put her on Keytruda, but after eight short weeks said it wasn't working. She has tested positive for CCND1 amplified mutation. She was put in Genomic study and given Ibrance, (breast cancer drug) as her target therapy as it targets her mutation. We will know on Sep. 9th if working, but Onc told us another in study taking same for same mutation (although not melanoma cancer) is all clear now. So we have hope. So, if immunotheraphy doesn't work, you may have a mutation that can be treated.

Best Wishes!

Thank you for replying. It helps hearing other stories and treatments. I'm so anxious right now especially thinking of the treatments I may have to do. Did they recommend radiation? 

Yes, but we are holding off on radiation because her lymph node tumor is very near her iliac vein. Also holding off on Ipi/Nivo due to side effects. Her Onc is very excited about DNA studies and he's a co-investigator in the trial. He thinks it's the new best way to treat all cancer if immunotheraphies don't work. What a time for cancer research!

Cindy, if you don't mind me asking, what reason did the oncologist give for stopping so early with the Pd-1 drug?

Depends on when you ask me. I go back and forth between, because he really wanted her in his study (low tumor burden may equal good result and boost study) to he really believes Pembro wouldn't have done the trick and she has a great chance with early target (after Pembro boost). I know that sounds jaded, but who really knows. He does care for her though and said if it were his mom he'd do the target. I did have him convinced, with Celeste's charts, that we hadn't given it enough time, but by then he had me convinced to go the target route. He makes it sound like she'd only be on the target pill for six cycles...then maybe go back to Pembro, I'm hoping.

Reading that back, I realize I didn't specifically answer your question. After eight weeks on Pembro and first PET, the iliac tumor had grown slightly and a nodule in her lung that had always been there grew slightly. But after learning about pseudoprogression, who knows.

Hi Nichole, just to add some information to what has already been given on the topic of options available. You almost need to hire a research firm to sort through all of the options that are out there when it comes to clinical trials. Celeste gave you great links and hopefully if you do need treatment you will be a responder to Immunotherapy or targered drugs. The field is exploding right now with new combination of approved drugs like Nivo and Pembro being combined with all kinds of new combinations. I have two links for you to 2 of the leading hospitals for Melanoma in the U.S. to give you an idea of some of the stuff that is going on including clinical trials. Best Wishes!!! Ed https://www.mdanderson.org/research/departments-labs-institutes/departme...  and at the Angeles Clinic http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTria...