The waiting is the hardest part

As Mike posted in the last blog post the Keytruda has stopped working, and his tumor is growing again. It’s been a couple weeks of ups and downs, and I just didn’t feel like posting anything. Suddenly my emotional block is gone, and I have several blog posts swirling around in my head..

We went to Ohio State last week to meet with the Dr doing the clinical trial on biopsies. We are interested in this trial because it is the only way to get the genetic testing redone on Mikes tumor without us paying out of pocket. Mikes insurance company paid for the genetic testing in 2014, and they will not pay again. The clinical trial will pay for it. Mike has a biopsy scheduled next week, and it will take 3-4 weeks to get the results.

The hope is that there is a new mutation that is dominant, and will respond to one of the other immunotherapy drugs like the Keytruda did for 15 months. There are other immunotherapy drugs Ipilimumab, and Opdivo to name a few. Our doctor says depending on the mutations, one of these drugs may work in much the same way the keytruda did.

They are also looking for Fibroblast growth factor receptors (FGFR) which play key roles in tumor growth via activated signaling pathways in gastic cancers. This is above my pay grade, but in much the same way that keytruda acts as a PD-1 inhibitor, there are targeted therapies that go after the fgfr.

There are also the standard nasty chemos that Mike had in the past, as well as a few other chemos we havn’t tried because the side effects are fierce.

There is a 6 week wash out period between clinical trials, and Mike has made the decision as of right now to wait for the genetic testing results before starting any new treatment. If he does a chemo right now the 6 week period would have to restart once he stopped the chemo. We are going to try to hold off as long as his disease progression allows.

Mike has been doing ok considering what he is dealing with. He has taken what we hope is a short leave from work, so he can rest, and he says as long as he lays down, and takes the pain meds, he doesn’t feel as much pain. Unfortunately, he cannot lay down all the time, and the pain persists. The tumor may be pressing on a rib, or his lung we have no idea. His anatomy is much different than ours, due to the whipple procedure he had in 1999, and the mass weaves in and out of his organs. He has been having these tumor fevers, where his fever spikes up to 102 degrees, and we struggle to get it down, and keep it down. The doctor says that they are probably from the tumor, they come out of nowhere, and make him pretty miserable.

So.. we hope, and we wait.



  1. Anne and Mike,

    I’m thinking of you and sending lots of hugs from Seattle.

    Patti Means

  2. Continued prayers as you move through this journey

  3. Continued prayers as you move through this journey.

  4. And we all wait with you…I hope this new treatment will work. My thoughts and prayers are with you all!

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