Feedback/Input sought for stage 4 treatment next steps

Posted By
JAE
4/15/2018 4:57pm
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JAE
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Replies: 4

Hi All -- my 40 yr old husband was diagnosed with Stage 4 Melanoma shortly after undergoing emergency surgery to remove a large brain tumor last May. He does posess the Wild type, genetic mutation that allows for BRAF. Subsequent IPI/NIVO immunotherapy (now just NIVO), brain and spinal radiation, BRAF, and an intestinal surgery has helped to end tumor growth and eradicate many tumors.

Of current concern are a large lung tumor and liver tumor that have increased slightly in size and show same to higher "darkness" in scans. His liver tumor was biopsied this past week and we'll get results/discuss next steps this coming week. It's likely that their surgical removal will be considered or recommended. We of course want the least invasive yet highly effective option, which is why I write today. I'm interested to know of others who may have been at a similar point willing to share, or provide any input.

He's being treated at Kellogg Center in Chicago suburbs. Many thanks in advance,

Jennifer

Hi Jennifer,

Sorry you are dealing with this.  A few random thoughts.  I wouldn't assume that surgical removal would be their first line recommendation.  Although surgery is definitely beneficial and used for stage 4 patients my oncologist prefers systemic treatment first. With that said I've had a liver resection (after being held stable with keytruda for months) and it's not nearly as bad as it sounds.  Has he tried Braf meds? 

Also, I would recommend getting another opinion at U of C.  I liked northwestern but a second opinion is always a good idea.  I know Dr. Luke has a trial where he's injecting into the tumor and giving nivo in combo.  I've had a liver tumor off and on for over two years and he's always been able to give me options but fortunately I've been stable on Taf/mek for about a year.  

You will be in my thoughts.

Caitlin

 

Hi Jennifer,

Sorry you are dealing with this.  A few random thoughts.  I wouldn't assume that surgical removal would be their first line recommendation.  Although surgery is definitely beneficial and used for stage 4 patients my oncologist prefers systemic treatment first. With that said I've had a liver resection (after being held stable with keytruda for months) and it's not nearly as bad as it sounds.  Has he tried Braf meds? 

Also, I would recommend getting another opinion at U of C.  I liked northwestern but a second opinion is always a good idea.  I know Dr. Luke has a trial where he's injecting into the tumor and giving nivo in combo.  I've had a liver tumor off and on for over two years and he's always been able to give me options but fortunately I've been stable on Taf/mek for about a year.  

You will be in my thoughts.

Caitlin

 

One more thing.. I misread Kellogg Cancer Center as Northwestern not NorthShore.  You need to run to one of the teaching hospitals.  I'm partial to U of C as I said, but even Northwestern or Rush.  There's no reason in Chicago to be at NorthShore.  Sorry if that's blunt, and to be fair it sounds like they are doing things by protocol, but they just can't compare.

It is hard for me to say at this point.  Obviously the biopsy report will be very important.  Pseudoprogression is real.  Sometimes things that look like tumors on scans can be residual debris and dead cells that are simply accumulating as the body tries to resorb the tissue.  However, progression is real as well.  Surgery can be a very good choice.  Some folks who do very well on immunotherapy for some time, go on to develop a tumor and have it surgically removed with no further treatment and close observation.  I believe that was the case with "jubes" on this forum.  Additionally, surgery can be good when combined with additional treatment since we know that when folks have the lowest possible tumor burden, they do better.  As it seems your husband has already experienced, radiation WITH immunotherapy reaps greater benefit than either alone...so additional radiation to the affected area might be an option.  Finally, there are trials available looking at a variety of combo's.  Work is ongoing on IDO inhibitors (though unfortunately the trial with Keytruda and epacadostat - an IDO inhibitor was recently stopped...but other IDO inhibitors are still in process), ERK inhibitors, vaccines (though I fear we are not there yet), new anti-PD-1 and anti-PD-L1 drugs, anti-LAG-3, CD47 blockers, HDAC inhibitors, and more.  

I hope that helps and I wish you and your husband my best.  Celeste