Newly Stage IV

Oh, Ann. So sorry that you advanced. I think I remember that you have already done ipi. If that is so, you still have many options. I put this primer of current melanoma treatment options together in 2017 and unfortunately, it has required little modification since – if you are interested, here’s a link: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
There are many additional drugs and therapies in trials should anything be needed beyond current standard treatments.

As to BRAF status. ~ Most of the time, tumors on progression are consistent with the original typing. However, melanoma is a bitch, so it can at times mutate and demonstrate different qualities in subsequent tumors. I would imagine the odds are that your most recent tumors are the same as the one you already had tested. However, I would certainly expect that your newly biopsied tumors would have a full pathologic examination re BRAF status, etc.

Again, so sorry that you have to face this. Still, I am certain you will gain a treatment plan with your onc in the coming days and march through it. Keep us posted and ask more questions as you have the need. Hang tough! I wish you my best. Celeste

Hi Ann,

I’m so glad Bubbles quickly replied, I knew she would give you all the options and the evidence regarding the tumor question, which is fascinating and I was curious about myself. I totally agree, would want full pathological examination/confirmation for mutational status of any tumors/mets, I have read about this and as Bubbles said it is not the norm but is possible. I’m so sorry as well that you progressed but there are many more options in your future for treatment including trials if needed, etc. I can’t add anything else, but wanted to say that thinking about you. Progression and graduation is so tough to hear but hoping only the best for you. Many hugs

Hi Ann, Sorry to hear you have joined the stage IV club. I unfortunately was inducted into the club last April. My wife and I did quite a bit of research and spoke with 3 Oncologist before selecting an Adjuvant Therapy treatment plan. The Oncologist were from Mayo Clinic, Moffitt Cancer Center, and Massachusetts General Hospital. Two of the 3 Doctors recommended a targeted adjuvant therapy plan with Dabrafenib (Tafinlar) and Trametinib (Mekinist) to combat the BRAF mutation V600E that had metastasized to my intestines. The other option was Keytruda which was recommended by the Oncologist from Mayo. I opted for the pill targeted therapy taking the Tafinlar and Mekinist daily for a year. Hoping that it will kill the melanoma cells that may be floating around in my system. It’s only been 5 months and I have experienced side effects but am able to function okay. I strongly recommend getting a second and possibly a third opinion if you can.
I have my 6 month battery of test mid October. Hoping for the best. I also hope the best for you and send all good thoughts your way. Stay strong!

Hi Ann, I am not sure how deep a dive you want to take with the information. If you are interested to add some other sources to what you have already been given, here are two sources that I like to follow. First one is a web site that gets pretty detailed but is really up to date and informative called research to practice and the second one is Onclive. The host of research to practice talks with different melanoma experts on different topics and he posts stuff after every big conference with information that the experts find important. You have to join, (free) but you have to fill out email and some background stuff, I usually pick patient or student when I join these type of oncology groups. I will give you a link to a talk on Pd-L1 status in melanoma that features Dr. Jason Luke explaining the role of pd-L1 in melanoma at the 13:00 min mark as well as 15:00 and 18:00 min mark he gets into detail about Pd-L1 and hot vs cold tumors and relationship to making treatment choices. http://www.researchtopractice.com/ImmunotherapyInterviews118/Video?playlistIndex=0#t=19m13s https://www.onclive.com/view/advances-in-the-treatment-of-malignant-melanoma?seriesVid=10