Is it progression, necrosis or could it really be Opdivo working on brain mets?

Portal Forums Lung/Thoracic Cancer NSCLC Stage IV NSCLC Is it progression, necrosis or could it really be Opdivo working on brain mets?

This topic contains 2 replies, has 3 voices, and was last updated by Dr West Dr West 3 weeks, 2 days ago.

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November 24, 2017 at 1:48 pm  #1293557    

roselandmom

In October 2013 our 23 year old son with was diagnosed with stage 4 poorly differentiated Neuroendocrine Lung Carcinoma with mets everywhere – lung primary, liver, adrenals, kidneys, pancreas, bones and various other places – too many tumors to count. He had treatments of temodar, carboplatin & etoposide, affintor and WBRT for multiple brain mets. None of these treatments produced any reduction with small exception of WBRT. He dropped significant weight. Our Oncologist had no further options. Wonderful man that he is he did offer to go to BMS and apply for compassionate care as we go to a large cancer center in Virginia and they run numerous trials there. Little did we know our son would become a Super Responder. Now almost all of his tumors & mets are gone beginning at the 3rd to 4th infusion. He just finished his 59 infusion and has never had any side effects from the immunotherapy. He does have one Major issue – that being the brain mets. In January 2017 he had SRS to both his brain for mets and one spinal met. The spine is fine but in August he started experiencing numbness, weakness in limb and a droopy smile on left side. MRI revealed that the brain met of 7mm that was SRS was back, 2cm, very inflamed and causing his issues. Had brain surgery and we found out it was necrosis. they went back in the next morning and removed necrosis and did tell us no way to be able to remove all cells which we knew. In November a follow up MRI revealed worse inflammation, edema in the same cavity where necrosis was and 2 other mets showed up 6 and 7 mm also inflamed with edema and 5 other small mm ones. The irony is he has no symptoms at all and feels fantastic. ? Is it possible with the back to back brain surgeries within 27 hours that opdivo finally was able to successfully cross the BBB? We rescan next month and we are told it is necrosis, progression or the Nivolumab could have made it in substantial amount and is attacking every tumor it sees. Your opinion?

November 24, 2017 at 6:31 pm  #1293558    
catdander forum moderator
catdander forum moderator

Hi Roselandmom, What a wild and difficult ride your family has been on and how lucky you were to have found the nivo trial! I don’t know enough about this topic so I’m going to ask Dr West if he has anything to add.

To be clear we can’t give opinion specific to your son’s case. It’s just not possible for someone to have good insights into such a difficult case as your son’s without having all the info.

Hoping for the best for you son.
Janine

November 24, 2017 at 7:37 pm  #1293559    
Dr West
Dr West

I’m sorry that we can’t be particularly helpful here. In truth, Opdivo (nivolumab) is a relatively new treatment, and there is remarkably little actually known or described about what happens even routinely with treated or untreated brain mets in patients who are treated with immune checkpoint inhibitors. What is possible but less likely is essentially a complete unknown. In addition, these issues are probably more in the realm of neurosurgery expertise than medical oncology. I’m sorry to say that I don’t think we know enough to offer any insights.

Good luck to your son and your whole family.
-Dr. West

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