9th Update: 3rd Round plus Immunotherapy

June 18, 2018

I haven't updated on my dad in a while because little things keep changing all the time and there are so many ups and downs that all contradict each other, so it's hard to know what to say and when to say it before it all changes again. He just started his 3rd round of chemotherapy last Thursday making it a total of 13 treatment cycle sessions so far. It's still 3 different levels of chemicals for 3 weeks followed by a week off.

After much arguing with the insurance company, he started Keytruda immunotherapy and he's had 2 infusions, so far. He'll get an infusion every 3 weeks. It seems to be easier on him, so far, compared to the chemotherapy. It's only a couple hours in a chair versus chemotherapy which is about 28 hours overnight in the hospital bed.

Despite it now being standard care practices and the doctors prescribed treatment, our insurance company only wants to pay for either chemotherapy or immunotherapy, not both together as is the oncologist's orders. Thankfully the doctor and hospital worked out a deal with the pharmaceutical company because otherwise Keytruda costs $12,500 a dose and is given every 3 weeks would come out to around $250,000 a year just for that 1 single immunotherapy medication.

Speaking of arguing with our insurance company, we've been fighting with them about the right pain medication. We think his pain medication is too strong and that's messing with him making him not feel the best. Insurance is a pain in the butt. He started Fentanyl at the lowest dose 12.5 then a month later he upped it to the next highest dose 25. Now it's not working as much so he has to up it again, but the next highest dose the hospital pharmacy has is 50. 50 is way too strong and 25 isn't nearly strong enough. The doctor agrees that he should wear 1 25 and 1 12.5 patch to create an in-between dose. However, because it's a controlled substance insurance will only pay for 1 box of 10 patches a month. Which normally 10 patches are the perfect amount, exactly a months’ worth of pain medication. However, 10 patches at 25 is too low and 10 patches at 50 is too high. So, we need a box of 12.5 and a box of 25 to create the right dose. But that's 2x as many patches as insurance will cover. So, we're fighting with them trying to make them understand that 1 box of 50 is leaving him over medicated and that 2 boxes at the lower dose is the right amount and less medication altogether.

As much as we're annoyed by insurance we're thankful too. So far, only this year from January till May 2018 we spent with Blue Cross Blue Shield for dad $554,925.36. November and December 2017 only 2 months with UHC was $382,254.00. That's nearly a million dollars in 7 months! That's about $4,500 a day. $186 an hour.

Onto good news, he is able to eat better with much fewer choking incidents and a greater variety of food including some breads occasionally. His weight is up to 157lbs, which is the highest it's been in 6 months. His wedding band no longer falls off.

Not so good news, after finishing his 2nd round of chemotherapy he's starting to have side effects from the chemotherapy that he didn't have before.

He's more wiped out all the time and sleepier.

His tastes and sense of smell has changed.

His gums are bothering him.

His skin is drier.

His nails have a dark colored ban running across them.

He has discovered that he's nauseous half of the time. However, it doesn't present like normal nausea with an upset stomach, instead, it makes him feel dizzy, lightheaded, all around lousy. Thankfully his anti-nausea medications take care of it most of the time.

Certain weeks he still gets neuropathy anytime he's around anything cold.

This cold caused tingling has progressed into numbness in his fingers and toes most of the time, which is starting to impair some fine motor skills.

During the last couple of chemotherapy sessions, he has had tumor fevers.

The long-awaited CT/PET Scans results after 2 rounds of chemotherapy-

Good news: there is a visual metabolic improvement of his distal esophageal mass with a measurable decrease in size to 3x2.3x6.9cm from 3.7x2.3x8.1cm. The vertical extension of the tumor was shortened; the tumor shrunk from 7cm down to 3cm in length.

The SUV also went from 5 down to 4.3.

The posterior para-aortic lymph node is down to 1cm from 1.7, lateral para-aortic 1.7 vs 1.8, and the paraoesophageal is stable at 1.6cm.

Bad news is the new and worsening soft tissue lesions involving the axial skeleton: T2, right 2nd rib, left and right 5th rib affecting T5 extending into T6, T7, and T8, L2, left L5, and left sacrum which worsened with FDG having an SUV of 3.7 where all others were under 2.7.

Surgery:

Because of the location of the tumors in his bones being sandwiched between his spinal cord, aorta arch, and lung he had to meet with a spinal surgeon from interventional radiology who wants to do cryoablation next month.

1st they will use heat to do a nerve block procedure to measure how much area the tumor is affecting.

They can't radiate the parts that already have had radiation for fear of doing damage. When radiation is given it's done at full strength and can't really be repeated because of the surrounding organs and tissues.

Cryoablation is a process that uses extreme cold to destroy tissue. Cryoablation is performed using hollow needles (cryoprobes) through which cooled, thermally conductive, fluids are circulated. Cryoprobes are positioned adjacent to the target in such a way that the freezing process will destroy the diseased tissue. Once the probes are in place, the attached cryogenic freezing unit removes heat from ("cools") the tip of the probe and by extension from the surrounding tissues.

Ablation occurs in tissue that has been frozen by at least three mechanisms:

1. formation of ice crystals within cells thereby disrupting membranes, and interrupting cellular metabolism among other processes;

2. coagulation of blood thereby interrupting blood flow to the tissue, in turn, causing ischemia and cell death; and

3. induction of apoptosis, the so-called programmed cell death cascade.

Although sometimes applied in cryosurgery through laparoscopic or open surgical approaches, most often cryoablation is performed percutaneously (through the skin and into the target tissue containing the tumor) by a medical specialist, such as an interventional radiologist.

Cryoablation has been explored as an alternative to radiofrequency ablation in the treatment of moderate to severe pain in people with metastatic bone disease. The area of tissue destruction created by this technique can be monitored more effectively by CT than RFA, a potential advantage when treating tumors adjacent to critical structures.

A big continued thank you to Rohan and Sandy for all your medical help. A huge thank you to Uncle Bill and Aunt Marina for cheering up my dad. Your visits during his off weeks raise his spirits immensely. He has appreciated your fun bags of surprises! They improve his hospital stay. It's very sweet and silly of you. We love it!

Thank you to all friends and family for your love and support.