After waiting and praying and waiting and waiting and being on Keytruda for 12 week, we were told that the tumor was smaller, so the Keytruda was working. WoooHooo! It has all been worth it! We know that we are not talking about a cure, but postponing it a few years would be nice. However, the very day that we get the good news Henry was so weak and his blood showed that he was anemic that we had to skip his 5th treatment and have a transfusion instead. So we skipped a treatment and got 2 units of blood. The transfusion quickly helped a little with his color and energy. An iron treatment each of the next two weeks was supposed to help too. However, he has felt worse every day since we found out that he is ‘getting better’. After a couple of weeks and some blood and iron, they say he is ready for treatment #5; even though he still can’t breathe or eat or walk more than 25 yard without sitting for a rest. Treatment always takes a lot out of him, and he seems to be going down fast.
There was a pulmonologist monthly check up scheduled right before his treatment and he was flummoxed as to why Henry wasn’t able to get a deep breath. So he scheduled some tests….and the day after the tests I took him to the ER because he couldn’t keep water down.
And now, after spending 4 days in the hospital, we find out that not only has the Keytruda stopped working but the tumors have spread to the peritoneum and maybe the other lung. So, with in 3 weeks we go from tumor shrinking 30% & Keytruda working to tumor growing/spreading & Keytruda not working. We are all a little numb and he thinks that this is the end. And no one at the hospital could tell us anything good. Oh did I mention that when I took him to the hospital that both his oncologist and pulmonologist were out of town; our family doctor, too.
Home on Friday and our appointment with the oncologist is not until Thursday. The waiting is unbearable. Meanwhile, he has trouble eating, his belly is so swollen that I think it is squeezing his stomach and lungs to the point of extreme discomfort. His stomach gurgles so loudly that you can hear it across the room and as soon as he eats anything he gets heartburn. So munching Tums, followed by a Nexium. He can’s stand long enough to do his morning toilet, so I bring his inhaler toothbrush, toothpaste, warm washcloth, dry hand towel, hairbrush, cup of water and a rinse bowl.
The turn-around time line:
Oct 14 — 12 week CT
Oct 15 — Oncologist says CT shows tumor shrinking by 30%, but you don’t look good and your bloodwork says you are anemic. So to hospital for 2 units of blood transfusion. He feels a little better, and has some color in his cheeks.
Oct 24 — 1st iron treatment
Oct 30 — Pulmonology appointment — Dr doesn’t know why he feels so bad and can’t breathe, so orders CT and echocardiogram for Nov 4
Oct 31 — 2nd iron treatment and 5th Keytruda infusion. He feels terrible all weekend and can’t breathe or clear mucus.
Nov 4 — Has the two tests and goes to breakfast afterwards. But by afternoon he can’t keep even water down.
Nov 5 — I insist on taking him to the ER. They do a CT of belly, an x-ray and a few other tests and then tell us that the cancer has spread and the Keytruda isn’t working any more.
Nov 14 — Oncology appointment