Collateral Damage: Good News

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11/9/2018 12:53am
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Replies: 5

I had my scan yesterday and finally met with my oncologist today. The report from the scan was very good news. There was nothing new in the scans and all existing tumors have shrunk or remained the same size, and the ones that haven’t shrunk may not be tumors. After discussing with my oncologist we decided to continue with Opdivo. The thinking is that the damage to the beta cells in my pancreas is already complete, and that any future damage to my endocrine system is treatable with hormones. Besides, the Opdivo train will probably continue rolling anyway even if we do stop treatment now. Basically, I’m trading a disease that is probably fatal for one that is treatable. 

I’m still in hospital trying to get my new friend diabetes under control, but I’m feeling better and hope to go home later today. A very stressful and tiring week, but overall things are looking very, very up. 


Linny - (11/9/2018 - 9:16am)

So happy to hear that Opdivo apparently kicked some serious butt with your melanoma. Sorry to hear about the diabetes, though. Ugh! But, as you pointed out, at least it's treatable. Since it was drug-induced, is there any chance that it can be reversed at any point? Just curious.

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

After speaking with the endocrinologists and my oncologist, they both believe that the damage is permanent and I will be insulin-dependent for the rest of my life. The caveat for this is that these type of immune-related adverse events are all both new and rare and that there has not been enough long-term follow-up of people once they go off treatment to see what happens down the road. I’m not holding out hope for this reversing, but you never know. 

Linny - (11/10/2018 - 9:33am)

Yes, this definitely is new territory for doctors. I'm sure they all will be keeping a close eye on you too, which is a good thing. 

But the main thing is that there is no more evidence of melanoma! Now there's a cause for celebration! Congrats again!!!!

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

lkb - (11/10/2018 - 7:49pm)

Hooray for the shrinking and stabilizing of tumors! I hope your new friend is here for a brief visit only and  I wonder if there are ways to at least change the odds and make the long stay less likely.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met.


Thanks for the good thoughts. I’m planning for a long visit, but who knows. I’m meeting on Monday with the folks at Joslin Diabetes Center to learn more about this diabetes. I also have some tests coming back that will tell me more about the nature of this diabetes. Everything is happening so fast that I almost forget I have cancer. Almost. 

Thanks again!

Thanks again!