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CT Scan Results - What do you think?

nyisles's picture
nyisles
Posts: 30
Joined: Mar 2013

I know every three months I bother you all with my scan results and what you think my doc will say.  The reason is because you all have been right every time!  I would like to know your opinion to see what I am up against. 

For the few remaining spots, everything was the same as last month - unchanged - no growth except in one area.  The lower right lobe of lung (outside) increased in size from 9mm to 18mm.  There has been no spread, which I am very grateful for.

This is the 2nd scan in a row the lung nodule grew.  It was 4mm in March, 9mm in July, and 18 mm in October.

There has been no spread of the disease since July 2013 (which was prior to IL-2 treatment).

Is 18mm big enough for the doctor to order treatment or will it be another 3 month wait to see?  He mentioned that my next treatment would be Nivolaub but won't give it unless absolutely necessary.  He ruled out IL-2 again because he said Nivolaub works better without the side effects (plus already had 2 rounds/4 weeks of HDIL-2).  Also mentioned that if he did give HD-IL2 again that it would probably clear everything up, which is why he believes Nivolaub would do the same with no side effects or danger.

So what do you think in your expereinces?

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

According to the reported statistics, very, very few patients who have been given HD IL-2 therapy and then "failed" it have ever been able to "re-challenge" it (undergo HD IL-2 again) and get a lasting response.

The drug your doctor is referring to is called Nivolumab.  It is an anti-PD1 and yes, it does not have the severe side effects of HD IL-2.  The papers that report early results to clinical trials for Nivolumab report a 20% response rate.  But complete responders are only about 5-8% (so far).

If Nivolumab (or Pembrolizumab - another anti-PD1) are combined with Ipilumumab (an anti-CTLA4) the response rate goes up to about 48%.  However, there is a much greater potential for severe (auto-immune type) side effects when you add Ipilumumab to the mix.

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