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Update on John

penitent
Posts: 79
Joined: Jun 2016

From 12/28:

On 12/23 he had a new set of CT scans and then met with his ONC on Christmas Eve.  After six or so infusions of Opdivo the news wasn't what we had hoped for.  There are new lymph node mets in the paratracheal area and in the mid-chest near the aorta.  Apparently this is a fairly common met site for RCC.  Also the lung mets are still there but I'm not sure whether they were larger or not in size or number.

So Opdivo is off the table as well...and the oncology team is looking at genetic matching for possible trials for 'plan C'.  Everything is kind of up in the air right now until the tests come back.  Not the Christmas present they were looking for.

FURTHER UPDATE as of yesterday 1/3/17:

They met with the onc's partner who is a researcher and he has questions as to whether the Opdivo wasn't given a long enough try to see if it will do any more 'heavy lifting' before giving up on it, so John may be going back on to infusions every other week again.  After scans in 8 weeks they'll re-evaluate.  I guess it would be an understatement to stay that this "ain't an exact science".

Penitent

mrou50
Posts: 389
Joined: Mar 2013

Sorry about the difficult news. I tried Opdivo about a year ago when it was first approved the first 12 weeks did not work for me either, my ONC did some research and learned that some times it takes up to six months for Opdivo to work.  Unfortunately it neer worked for me but that does not mean it won't for your husband it just may take another cycle.  Good luck and I will be thinking of you.

Mark

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Whatever treatment you get. Have they tried radiation on the lung mets?

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

So sorry about the news...not only is it difficult to figure out the treatment, but the waiting to see what happens must be difficult as well. But there has been a lot of success with members here. Amazing improvements happen often!

Sending thoughts and prayers your way!

Hugs

Jojo

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

So sorry for this trial and error.. and now waiting. Its so hard on you & your hubby in the human condition.

Keep us informed. We'll be here for you for the long run.

Hugs, Jan

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