10th Update: Round 4

August 12, 2018

There hadn't been much to update lately because Dad had a month off to recover from a bronchial infection plus his oncologist was on a 2-week vacation. I've lost track and don't know if he's finishing the 2nd half of his 3rd round or the 1st half of his 4th round depending on how they treated his month off. He was feeling much better during his month-long break and thankfully he did not feel his esophagus start to close up again like before.

Dad received his 1st nerve block on July 11th after being postponed 3x. Unfortunately, dad wasn't healthy enough to do his nerve block (epidural) as scheduled because he was coughing too much. When he finally had it, it made his ribs and area under his shoulder blade about twice as painful as it was before to about an 8/10 and that lasted about 2 weeks before being pain-free for about 2 weeks, and now going back down to the original pain level. With the 50 Fentanyl Patch on it was around a 2 or 3 and now it's around a 3 or 4 on a pain scale out of 10. He also tried to stop his 50 Fentanyl Patch, but only lasted about 2 days because the withdrawal symptoms were too much: anxious, antsy, couldn't sleep, couldn't sit still, etc.

Similarly, his chemo and immunotherapies where delayed a couple weeks in a row because his platelets and white blood cells were too low. He skipped what was supposed to be the 3rd cycle (15th chemotherapy and 3rd immunotherapy treatment) of his 3rd round and the halfway point and instead took a month long break and I guess restarted at the beginning of the 4th round. They gave him a Neupogen injection (2nd one since starting chemotherapy) which is a bone marrow stimulant. It can help the body make white blood cells. There isn't much they can do for have a low blood platelet count. They rescheduled everything and sent him back home. Days like those we wish we lived closer to UM Sylvester and that it wasn't an hour plus each way before being rejected.

He's been having pretty consistent, high fevers with his overnight treatments, so we're trying to figure out the cause. We're thinking it's the Oxaliplatin that he receives every other week. He gets Tylenol before the start of his treatment and again when his fever spikes, but his 1st week back he had a fever of 108° going through the night. When the nurses catch it, they usually pause his infusion until it's under control and then restart it. During that same 1st treatment back the high fever caused a big blister on his ear which was hard and eventually popped and crusted over. It's still not fully healed. He seems to have similar black spots on his ankle, chest, and forearm, but those turned out to be a rash from anemia.

The oncologist paused his immunotherapy (Keytruda) treatment, which he was getting once every 3 weeks, for about 2 months to see if it lessens his symptoms and fevers. Plus Keytruda can cause lung issues which is where we think his bronchitis came from. So it looks like it'll be 3 months without another dose.

He's still being given the bisphosphonates once a month for his bone metastasizes which work by inhibiting osteoclast activity.

Dad postponed his cryoablation surgery that was scheduled for August 8th after being previously rescheduled at least 2x before due to health reasons. This time we postponed it because we found out that the neurosurgeon was only doing it for pain management versus tumor removal. The surgeon was going to attempt to freeze a circle around the tumor which would kill about 80% of it, but leave the rest in his body. He'd have to have a different surgeon come in on a different surgery to actually chip away at the bone to remove the rest of the tumor that is growing next to his spinal cord, aortic arch, and lung. So in light of the new clarifications, we decided it was best to give another nerve block a try before attempting the cryoablation. Sometimes it takes 2 or 3 times for the nerve blocks to actually work. However, generally, you can only have 3 per year. So we're saving his last one if he really needs it after the cryoablation surgery. The goal is to stop the tumor growth on his bones, therefore removing the source of pain, allowing him to come off his Fentanyl Patch and making him less foggy. On the 8th, instead of cryoablation he had his 2nd nerve block and so far it seems to be working really well and he doesn't have any pain. He's going to try cutting back on his patch.

Despite have a good reaction Wednesday, he was rejected from chemotherapy Thursday and had to go back home without treatment again due to low blood count and the newest thing anemia. Both his kidneys are really hurting him. He's going to Coral Spring on Tuesday (8/14) for a Zometa, iron injection, and shot for blood white cells. Zometa is his usual once a month bisphosphonates. It works by slowing the breakdown of bone and keeping bones strong. It also helps to reduce the risk of broken bones.

His side effects symptoms reduced greatly while he was on his month break. The nail discoloration started growing out and the cold didn't bother him. The doctors said he hadn't seen anyone with their nails turning purple and discoloring like my dad's.

But when he started again his mouth really started to bother him. He was having trouble eating because his lips, mouth, tongue, gums, etc were all hurting and tingling. Similarly, he's losing his mucous lining in his nose, but apart from adding a humidifier, there isn't much to be done about the dryness and bleeding. However, for his mouth, he received a pink Magic Mouthwash that is helping wonderfully. From the 1st swish, he'd had relief. It's a solution used to treat mouth sores (oral mucositis) caused by some forms of chemotherapy and radiation therapy. Oral mucositis can be extremely painful and can result in an inability to eat, speak or swallow. Magic mouthwash usually contains these basic ingredients:

-An antibiotic to kill bacteria around the sore

-An antihistamine or local anesthetic to reduce pain and discomfort

-An antifungal to reduce fungal growth

-A corticosteroid to treat inflammation

-An antacid that helps ensure the other ingredients adequately coat the inside of your mouth

It's intended to be used every four to six hours and to be held in your mouth for one to two minutes before being spat out. It's recommended that you don't eat or drink for 30 minutes after using magic mouthwash so that the medicine has time to produce an effect.

In addition to that, he also received a prescription for Gabapentin. The medication worked well the 1st few days and stopped his tingling fingers and toes, his feet didn't feel as cold anymore, and he started getting normal feeling back in his hands and feet. Sadly, it's starting the ware off and we'll have to talk to the doctor about it. For once a side effect is working in his favor. In about 5% of patients it increases appetite and thankfully that's happening with him. Unfortunately, the increased appetite hasn't increased his weight gain, not even by a single pound. He's still around 145lbs. On the topic of eating and food, we discovered that using plastic utensils makes such a huge difference. Food still doesn't taste the same, but it's a big improvement. The metal was giving off a bad taste in his mouth. Anyway back to Gabapentin, it's used to control neuropathic pain which is widely recognized as a common consequence of cancer and can result from the administration of several common oncology drugs, in his case oxaliplatin. There is currently no approved therapy for the prevention or mitigation of chemotherapy-induced neuropathy. Patients with neuropathic pain may report symptoms of paresthesia, dysesthesias, allodynia, hyperalgesia, and hyperpathia. They may describe the pain as sharp, burning, tingling, prickly, or shooting. Treatment includes the use of anticonvulsants, antidepressants, opioids, and topical agents. In his case, Gabapentin is an anticonvulsant. Gabapentin and pregabalin have been used successfully in the treatment of cancer-related pain syndromes. Both can be used alone or in combination with morphine for effective pain relief. The combination of either agent with morphine can have opioid-sparing effects and a beneficial effect on daily activity, mood, sleep, and quality of life.

Chemo brain is real and it's been frustrating, sad, scary...any advice would be appreciated as always.

Jeez, rereading this makes it sound pretty dim, but it's not all so bad. Not all side effects happen all the time nor concurrent. He really only has bad days a few times a week. He's clear a few days a week too. His tastes are constantly changing, so what was bad is good and vice a versa. On the bright side, his mood seems to be better most days, but he's still fatigued. Since it's been more than 2 months since his last scan hopefully he'll get scanned asap and we can see how things are progressing internally.