POG Results and Friends

Once again, there is always some good with the not-so-good.  Radiation has been tough on Ben but it seems like he may have made it over the hump where the pain may just be starting to ease off and the radiation having some positive effect.  He continues to be treated right through this week and into next week.  Ten treatments in total.  On a few of the days, our dear friend Whitney was working in Radiation so she administered Ben’s pain medication and helped him through.  Thank you, Whitney.


On another positive note, this guy came to town to spend a few days with Ben:


That is Jeff.  (Yes, he is hidden behind the emoticons so that his face isn’t out there for all to see.  I chose the most suitable emoticons.  lol)  All the way down from the Great White North.  I was feeling generous and gave him some leftover juice.  He was super excited. Hahaha



Although I know he loved the juice (haha), I think he was a bit happier that we were able to hit up the Noodle Box while he was here.  He says that was the real reason he came to town, but I don’t believe him….



Yesterday we met with Dr K.  As usual we brought along an entourage …

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Without beating around the bush,  the bottom line is that the POG trial unfortunately did not yield any useful results for Ben. That is obviously extremely disappointing and we had a good cry over that, but it is important not to lose hope and it is time to re focus.  We are now in the process of trying to get Ben into a trial in Toronto or get him access to a drug here called Nivolumab.   Nivolumab is a newish drug and it is a PD-1 inhibitor.  A recent study showed that 100% of collecting duct tumours express PD-1 and according to the oncologist, the drug is associated with an excellent chance of response.

The issue with Nivolumab is that it is currently only covered for malignant melanoma, and it is not yet covered for Collecting Duct Carcinoma. Apparently it costs somewhere in the area of $200K / year.  US Dollars.  Ouch.  Having said that, the first step will be to just get ahold of it and try it for a couple of months to see if it does anything, and then worry about the rest later. The emails have been flying this morning and many attempts are being made to get this drug covered for Ben.

The upside of being enrolled in the Toronto trial as opposed to taking the Nivolumab would be that the drugs in that trial would be covered, although we would have incur the costs of flights / accommodation etc.  I don’t know what that will look like yet so I won’t speculate.

We will take whichever option comes first.  I don’t have enough information about the drugs being used in the Toronto trial, so I can’t really speak to why they would be good.  (I was told, but I can’t remember).  I do know that it was clear that we need to just take whatever comes first.

And so we wait….

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Hug your families.  xo

4 thoughts on “POG Results and Friends

  1. Hooray for less pain! And the POG results are only preliminary right now, so we won’t write that off yet. Things should start moving pretty quickly now…

    Liked by 2 people

  2. Sounds like you have a couple of great options for treatment. That is such good news and great news that the radiation is making a difference! Happy, happy!!!

    Liked by 1 person

  3. I like the pictures of Ben with his headphones on. He looks peaceful and happily immersed in his music. I’m glad it’s such an excellent escape for him. And I’m thrilled there may be some relief from the pain. Thank goodness!

    Liked by 1 person

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