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  • #21268
    rosa11
    Participant

    Hello everyone! I’ve been a long time reader but first time to post. I think you are all wonderful, corageous and knowledgeable people, and I’ve learned a lot just by reading all your stories. A little background on me, short version anyway. I was first diagnosed with melanoma in 2004. Mole on upper trunk just below left breast. Did WLE and removal of one lymph node under left axilla since mel was draining into that one. No presence of disease anywhere else, no other treatments done except wait and watch with yearly x-rays and blood work. November 2010, yearly x-ray showed nodule in left lung. Pet scan showed two nonhypermetabolic nodules in both lungs and nowhere else, 10mm in left lung and 5mm in right lung. Biopsy of left nodule showed melanoma. Feb 2011, did thoracotomy to remove left lung nodule. Horrible experience! Aug thru Oct 2011, did full treatment of Ipi. Handled it pretty well, no major side effects except skin rash and major itching. Unfortunately, Ipi did not seem to have worked as the nodule kept growing, it was now @ 8 mm. April 2012 did four rounds of radiation to right lung nodule, but the darn thing kept growing, it was now @ 10mm. I went to see Dr. Weber at Moffitt to try to enroll in a PD-1 trial. End of Aug 2012, when I went back to do all the scans necessary for the enrollment, went to his office to sign the consent and found out I was NED. He told me the scans did not show anything and the growth on right lung was now just a scar, therefore I was unable to participate since a measurable disease was needed. Dr. Weber told me he did not know how long this would have lasted, but just keep doing scans every 3-4 months and to contact him if anything new would appear. Dec 2012, repeated scans and this time they detected a tiny 3 mm nodule in left lung. I contacted Dr. Weber via email but he told me the growth was too small to even know it was real. He suggested to repeat scans in 8 weeks. April 2013, repeated scans this time showing: left lung nodule no longer identified but a new small 4mm nodule in right lung. My local oncologist said the growth is too small to do anything, the blood work looks good and to keep doing what I”ve been doing. Easier said than done! I just don’t like to wait and watch, it’s very stressful. I understand this is minor compare to what some of you are going thru, and I truly admire you, but I wonder if I should now try to join a PD-1 trial, like the one Catherine posted, MK3475/Lambrolizumab. I think they have openings in Jacksonville where I live, it’s probably at Mayo. I would really appreciated and thank you for any suggestions you may have. Sorry for the lengthy report. I truly with all the best to everyone!

    #60701
    Catherine Poole
    Keymaster

    Welcome to our forum. PD1 is a good choice and there are many trials right now. Look on the clinicaltrials.gov site. I know Miami, Ft. Lauderdale, Jacksonville, and Moffitt have them. I hope it works out for you..

    #60702
    EricW1
    Participant

    Hi Rosa,

    You are in the same boat as my wife. She has multiple sub centimeter mets so she has no measurable disease…she just finished her third dose of ipi…and if she progresses then we will do PD-1 if she is shown to have measurable disease…if she is stable then we will be back to the waiting game like yourself…hopefully the ipi will do the job…anyhow good luck and realize your not the only one in this situation…..

    #60703
    Mom2Becca
    Participant

    Wow, Rosa, I can see why you are stressed. That’s quite a roller coaster you’ve been on. I don’t have any advice (sorry) but glad to know you tolerated Yervoy well. My daughter is currently on Zelboraf but will be starting Yervoy in a few weeks. The side effects portion of the drug website is sure scary. I hope you’ll be able to get into a trial soon.

    #60704
    erinmay22
    Participant

    Rosa – I know how frustrating watch and wait can be. In Jan 2011 I had a dozen nodules on my lungs. A vats biopsy confirmed melanoma. I tried getting in the braf trial at the time and by then all the spots went away. So no measurable disease so not eligible for trials. I went 1 year and 2 months before having melanoma come back in my small intestine. I have since done zelboraf, ipi, and now in the anti-pd1 trial at Sloan. I think most trials require something at least 1cm and confirmed melanoma. That’s the tough thing with the small lung spots.

    Erin

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