The heart does go on and on..

Wow! Finally some good news in the ongoing battle against cancer, and lynch syndrome specific cancers. If you aren’t sure what lynch syndrome is you can review it here Lynch Syndrome and Keytruda

The FDA has fast tracked approval for the use of keytruda, the drug Mike was taking in the clinical trial that extended his life. They are approving it for DNA mismatch tumors that are prevalent in lynch patients, and for MSI-H tumors. They actually sighted the success of the clinical trial Mike was on in their press release.

This is amazing news for those who have tumors that may respond to this drug. As you may recall, Mike and I had to travel great distance for him to receive treatment. We spent thousands of dollars in medical bills, travel expenses, took time off of work etc just to get the opportunity for this drug to work. We put thousands of miles on our vehicles, blew a transmission on one, and spent hours and hours on the road.

We had to fight to get him into this trial, and it took a serious toll on him and both of us. If he were being diagnosed today, he would be able to receive this drug here at home, and wouldn’t have to deal with all the travel related ansgt again, stress of being a clinical trial patient, and just all that goes with being a pioneer on an experimental drug trial.

This drug will become part of the much needed standard course of treatment for these kinds of tumors, not just for lung cancer and melanoma.

Mike and others who participate in clinical trials pave the way for those after them, just as the pioneers before him paved the way for him. Some of the people on this trial had complete response to the drug, and Mike had an extra 18 months that he wouldn’t have had without it.

He went through so much pain and misery. One time early on in the clinical trial, he thought it wasn’t working, and we were at U of Pennsylvania then. When he found out that it was in fact working, he didn’t respond like someone who had been given a lifeline. He got angry, and I actually had to apologize to the Dr when i ran into him outside in the hall. He admitted later that he had actually been preparing himself for bad news, and was almost relieved to be able to give up. I remember a few times begging him for selfish reasons to keep fighting. I remember him actually telling me that he would not go through having a feeding tube again if and when the drug trial stopped working. He actually did get the feeding tube again, and it gave him a few extra weeks. We were told when i took him home 2 wks-2 mos and we got 2 mos and 1 day.

He kept fighting through all of the pain, and all of the misery. He will never know how much his participation in this trial has helped the people behind him on the line, but it gives those of us who loved him a lot of comfort in knowing that he continues to help others even in death.

When we finally got to the end of the line, and the many doctors told us that there was nothing else that could be done, he didn’t want to give up. He had drainage tubes, a feeding tube, pain, was unable to eat food and yet he still wanted to fight. His body was fatigued, the tumor was taking up all the space, and squeezing out his other organs.

I forget his voice sometimes now, can’t always remember his words, but his heart? I will never forget his courage and his heart.

That last day his blood pressure and pulse were barely discernable. In fact from about noon on that last day, the hospice nurse told us he would go anytime.

Yet, his heart beat on. When he actually died at about 3am, his heart was actually still beating for a few minutes after he took his last breath.

His heart beat on after death.

No surprise to us.


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