Tag: keytruda

“I’m afraid I may never see anything but these 4 walls and the tv, ever again.”

The first 12 weeks of Keytruda treatment is so very frustrating. You must take the treatment every week, deal with the side effects, drain fluid out of your lungs, try to work up the enthusiasm to consumers enough calories to keep from blowing away, sit alone or with a spouse for hours, days and weeks on end, cough and cough and wait. Your power of concentration is depleted along with your appetite. Your energy level plummets, taking a shower requires a nap afterwards and walking across the room requires a sit down. Someone must fix your meals, drive you to appointments, keep track of your appointments and important treatment details. It becomes hard t see the light at the end of the tunnel.

The longer you sit, the weaker you get; but, you cannot make yourself do anything. 12 more days until we get the news that the treatment is working and we can begin to plan for real.

The gift of telling his friends for him

Telling his/our friends is a small gift I can give him. It frees him from the minutia of his health story, and they can just talk about fishing, friends and politics. The friends are so glad that I called them. They are worried, but I can answer their questions about treatments, how often, how long, prognosis, side-effects…..so that when he talks to them they can just visit, tell stories and reminisce .

For the most part I stick to the party line “Incurable, inoperable, treatable”, immunotherapy… but with his 2 very best lifetime friend, (our closest couple friends) I spilled the whole story. I thought they should know how little time he might have and how serious it is, because the sweetened up texts that he dictated in the beginning sounded too positive. They too have been grateful to know and have been so kind and have made efforts to see him more. I don’t know that he really appreciates the effort or even recognizes it. He is so focused on trying to feel better.

I called a very dear, relatively new friend (15 years), younger (30 years younger), in Oregon a few nights ago. He told me that he had been afraid to answer the phone. Henry usually calls him; I text and send a Christmas Card. He was afraid something more serious had happened, he was relieved that it was just cancer and not a funeral. He was down on himself for not communicating more frequently, but that isn’t fair. We all get busy on our hamster wheels of life and get distracted by the little things. This friend called the next day and they had a great visit!

I went to the Colorado Rocky Mountains to visit our girls and tell them about their dad and while I was there he asked me to call on all of our friends and tell them what was going on with him. YUK! Not something I really wanted to do and it is far more difficult in person. But, I did it and several of them have called and will check in periodically. He really likes to hear from them.

One of them will go home to Texas at the end of the summer, has been sending photos of her grandson on an amazing 400 mile fishing trip along the Texas coast. Henry enjoyed watching that trip on his phone and talking about fishing trips he has taken.

Driving through a friend’s sunflower patch, drinking a glass of wine on a patio, walking around the new Law School, visiting with a friend who brings a milk shake, a short drive in the country the farm, it’s only 30-60 minutes, but is gets him out and in contact with his friends. He has always cherished his friendships and I think he needs them now. He can only manage it 1-2 times a week. So, when someone asks what they can do, I say call him every other week, stop by for a 15 minute visit (call him first), think of a short driving activity or see if he wants to go to breakfast or lunch. He may not go with you but keep asking.

I am always on the look out for anything I can do to make this journey easier for him. I think this is a big one.

We have a treatment: Keytruda

July 11

PD-L1 is above 50% so he qualifies for KEYTRUDA!

He is also BRAF positive, so if the Keytruda doesn’t work he can try the targeted therapy for BRAF.

Keytruda is administered 30 minutes every three week for as long as the answer to both of these questions is YES. 1. Are you tolerating the treatment? Do you feel ok? and 2. Is the spread stopped or slowed? There will be a CT Scan at 6 and 12 weeks. The first may actually show some inflammation, the second should show a reduction in tumor size.

First infusion, Thursday July 18th. There was a thyroid test first, then the infusion. It was a non event. We went out to lunch afterwards and he ate half a hamburger. He tries to have wine with lunch and dinner, but rarely finishes it and it just doesn’t taste good. The first 3-4 days he hardly notices that he has had a treatment. He eats a little and goes to the office and out to breakfast occasionally with friends.

At day 3 he is very tired and doesn’t know what is wrong, but feels odd.

About day 7-8, Henry became really tired and listless. He was a little nauseated in the mornings. He had some confusion and a little short term memory issues. He has been taking a couple of Advil every day for general malaise. One day he said that everything tasted really salty, complains about everything being salty.

The last two weeks before his next treatment he was tired and hardly ate anything. He would force himself to eat some Cream of Wheat in the morning, a couple of Boosts and Ensures during the day and tea or broth at night. He also had his chest drained again. They took 2 L/5lbs out of his chest. When they do that the lung takes a little while to re-inflate but he really can breathe so much better.