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.

Waiting and Wilting

June/July 2019

As we sit and wait for the results so that we can start a treatment, Henry begins to wilt. He retired 20 years ago but continued to go to the office everyday until this summer. Some days he doesn’t have enough energy to do that. The other day he had to get back in bed for 20 minutes after his shower, to catch his breath. His O2 sats stays above 92, but I think he deep breathe before he takes it.

He coughs large amounts of mucus. How much of the coughing and fatigue is related to the COPD? Doctors won’t say. He was given a long term inhaler and a rescue inhaler. WARNING: the long term inhaler is $450. He thinks they help a little.

Henry is not hungry. He has lost 20 pounds since January and I can’t get him to eat very much. I did bring home some Boosts and Ensures to try to up his calories and protein. He, of course, wouldn’t try one until the doctor suggested it. I had to be the one to ask about eating.

His decline has been so noticeable, I am very worried. The only positive is that he is very optimistic about getting some kind of treatment that may work.

The oncologist and no treatment yet, more tests first

June 14, 2019

Dr. H came very highly recommended. He was the hand picked replacement for head of oncology in the Clinic where Henry is being treated. One of our very best friends sees him for follow up to her breast cancer. I like him and trust him.

After a very brief introduction he gave us the news that knocked us off our feet: Stage 4 lung cancer, it has spread to his bones (rt hip) and there is a spot on his brain, NSCLC Adenocarcinoma, in operable and incurable but treatable. 9-12 months with no treatment. SHIT! no other way to say it… SHIT! SHIT! SHHIT! Add a few months with treatment. I think that we were both surprised. I had been scouring the internet for articles about NSCLC Adenocarcinoma and felt that it would be maybe stage 3. Shoot, he didn’t even have symptoms until a few months ago.

As we walk out of the doctor’s office and down the steps to the car he says, “Well, I guess we need to with your life into shape.” Worrying about me when he has just gotten this awful news. The sweetest man. The next day he wanted to go to his parents graves. But that is another post.

So, now what? Well, yes , more tests and 10 days for them to get back. These will tell us if there is a targeted treatment, immunotherapy treatment or if we go with traditional Chemo. Now our appointment was on Friday and he said 10 days and that if we had not heard from them by Monday a week, we should call his office and S would get us in the office for the results. I called on the appointed Monday and was told that the tests take at least 10 business days – 2 weeks. And the biopsied samples we not sent until the Monday after our appointment. Add one more week. WAIT WAIT WAIT

Tests still not back in another week, but will be on July 10th and we can see the doctor on the 11th, seven weeks after his annual pulmonology appointment. I keep hearing that the cancer doubles in 6 months echos in my head … we are 2 more months along and his cancer is 33% bigger … scary. Let’s get some medicine in him. I see him getting weaker, every day.

IN the mean time, he coughs more, the fluid builds up quicker and 6 weeks after his biopsy he had 2 liters drawn off, second Thoracentesis.

We both are in limbo. Can’t think about anything longterm. What do we do about the wedding? What do I do about a girls trip planned for Sep/Oct? When will we know something?

We tell people, well I text all our friends, because I don’t want to have to talk about it. He doesn’t want anyone to know that it is stage 4. He doesn’t want people to see him differently. I think he needs to hold onto the hope that a treatment plan provides.

The text: Just back from doctor.  Good news. Henry is a candidate for immunotherapy and the drug Keytruda. It encourages your own immune system to go into overdrive and for your T-cells to attack the cancer. It can actually cause the tumor to shrink. It is a 30 minute IV infusion once every three weeks with very few side effects. We will know in 12 weeks if it is working ( it will be). If not, we try something else. 

Web research reveals: Immunotherapy drug best for Henry’s type of cancer? Keytruda! It has just had big trials reported at a convention in Chicago. It will be the number one selling drug in the world by 2024 and is some kind of miracle drug. Praying that Henry has the PD-L1 marker!!!

First PET Scan and Brain MRI

June 12, 2019

For the patient: The scans were easy and cold. When you go for these, wear warm clothing, sweat clothes or similar to keep from having to strip, no metal.

For the driver: It takes 1 1/2 – 2 hours — bring a book, or in my case a Sudoku puzzle book. I ended up talking to Carol’s family, she was having scans for colon cancer. We compared short stories, comforted one another and each added the other to our prayer lists.

Results next week.

Who do you tell? and What do you tell them?

June 2019

Henry didn’t want to tell anyone. Well that is just not realistic. We have 3 children and my parents and lots of friends that love him. If you don’t put out a tale people will speculate and that will always be worse. Henry really didn’t want to tell anyone but he didn’t mind me telling. As long as I told the story he dictated. That’s fair.

I have lung cancer. NSCLC Adenocarcinoma. It is not operable or curable, but treatable. I’m getting more tests and will know what the treatment is soon.

I called our son, here in town; our girls, in Colorado; and all of our best friends, local and away. I didn’t want them to hear it ‘on the street’. I told them to give him a call, when they wanted. That worked really well. He didn’t have to make the explanation and they could just chat about how unfair to get it again and in generalities about the cancer and treatments. He was very optimistic!

Now we wait for another 10 days. The waiting is so very very hard. I found that I couldn’t plan anything. I couldn’t think about the coming holidays or our daughter’s wedding in October. But I could hang my hat on the news to come on June 14th. Then we would make a plan and get on with kicking yet another cancer to the curb, we had successfully done it twice before. Once with lung cancer and then again with prostate cancer.

NSCLC Adenocarcinoma

June5, 2019

Dr. C. gave us the news. NSCLC — non-small cell lung cancer — ok, not great but better than small cell. Adenocarcinoma, same kind as before, but not a recurrence. This one is all new. Henry often says, “No one should have lung cancer twice.” I agree.

How long has he had it?

A mass this size has been growing for quite some time. The doctor said that cancer cells double in mass every 6 months, so it has been there a while. The edges are very fuzzy, not like before when it looked like Henry had inhaled a walnut. There was no x-ray last year, and the one from the year before, might have a little spot. He showed us the x-rays. The mass looks to me to be about the size of my fist and is located near his sternum in the right lung.

So, what do we do about it?

Because it is centrally located, it is not operable — too many vital pieces too close to make it safe. So we get more tests and will meet an oncologist in . . . you guessed it – in a week to 10 days.

Biopsies and fluid drain

May 29, 2019

A week of waiting and finally the day arrived for the biopsies. I procedure was fairly easy from a patients perspective and only takes about 45 minutes.

The doctor talked to us afterwards: he removed a little more than a liter of fluid from around his lungs; he took many scrapings of the mass; biopsied the lymph node and said that we would see him in a week for the results.

Really? A week. Henry pushed the doctor and he said, “If I had to guess, yes I would say that it is cancer. But let’s wait and see.” We trundled on home to wait another week. Henry’s cough is getting worse and because of the biopsies and irritation to the lining of his lungs, his mucus is very bloody now.

The waiting is the worst. We decided not to tell anyone what was going on because…. well we really didn’t know anything. I did take the time to start making a list of questions. I have found a pencil and notepad in my hand at the dr’s office to be very comforting. And the list comes in handy because when faced with difficult news my brain doesn’t always function at its best.

Bloody Mucus

May 28, 2019

Henry woke me up, sat on the side of my bed and said, “There is blood in my mucus.” I can’t tell you all the awful things that went through my mind. We had survived lung cancer 21 years ago and prostate cancer 5 years ago. What is happening now?

Cancer? Lung cancer? Again?

Henry had his Annual Pulmonology appointment on Wednesday. He had been treated for bronchitis for several months, . He has COPD. He had the upper left lobe of his lung removed in 1998, an encapsulated adenocarcinoma, and was pronounced cured. So, over the past few years, he had fallen into a routine with the PA:  breathing test, x-ray, “do you want an inhaler?”, we will see you next year.

This time when the PA came back in the room, she had the Pulmonologist with her. Henry had never met this doctor and was nervous about what this might mean.  The doctor said we see a mass on your x-ray and we want to do a CT Scan today. Henry walked over for the scan and then back to the doctor’s office.  “Well, there is a mass in your right lung, in the center of your chest and an inflamed lymph node in the center of your chest. I need to do a biopsy of both to see what we are dealing with.”

So, our first week of waiting began. Having had a very positive quick diagnosis and surgery 21 years ago (Henry had no symptoms, a spot showed up on an x-ray at an annual exam. 24 days later … surgery got it all and no further treatment necessary) I guess we were very naive about what this new bout with cancer was going to entail.