Battling CC since April

Chemo toxicities aside, gem/cis etc. may not be used until bilirubin level drops below 2. The rational is that higher bilirubin level indicates significant bile duct obstruction, therefore chemo will accumulate in the liver and cause liver toxicity, which defeats the purpose of using them in the first place. This is what makes CC so nasty and difficult to treat. If there is no bile duct obstruction, it will be just another type of liver tumor. So the first step for those inoperable patients to get their bilirubin level down. But it is never easy to achieve that goal even with stents or external drains as they commonly lead to infections. I believe a lot of patients die from sepsis before they even receive any anti-tumor treatment at all. On the other hand, tumor grows quickly while patients await their bilirubin to go down. And they develop abscesses and ascites. So, CC patients are under the combined threats of sepsis and tumor growth, let alone other complications such as cardiovascular events, metastasis, etc.  That’s why CC is called the King of all cancers, even worse than pancreatic cancer.

• This reply was modified 3 years ago by Missingmom.

I lost my mother to CC in June. Here is my advice based on my personal caregiving experiences, my knowledge about CC, as well as my professional background in the biomedical research.

1. Having liver abscesses is not a good sign, it’s an indicator that stent is not working, I bet her blood bilirubin level is still very high. You may not have a choice but putting in external drains via PTC. However, before you do that, make sure there is absolutely no surgical resection option on the table (see #5).

2. These external drains can be very effective relieving bile duct obstruction compared to stents. But it comes with very high cost: they are painful and drastically degrade quality of life for both patient and caregiver. Leaks are common and require almost daily wound dressing change, Drain bags need to be replaced weekly and internal tubing needs to be replaced once every 4-8 weeks via the same PTC procedure under anesthesia or heavy sedation. But the worst part, as you are already aware of, is the high risks of infections. My mom got sepsis 5 days after the initial PTC procedure that sent her to ICU. She survived in the ICU, but the infection weakened her condition so severely that she declined from that point forward with no chance to bounce back. That was one of my biggest regrets: I should have pushed the IR physician to  prescribe preventive antibiotics right after the initial PTC procedure. They never voluntarily prescribe them because of MRSA drug-resistant bacteria concerns. But these CC patients with stents and drains are at heightened risks of sepsis, when that happens, they will die from infection faster than cancer. So consider your mother immuno-compromised and demand Levofloxacin amd Metronidazole. I gave my mom daily low-dose Levofloxacin 250mg and if she has low fever, ramp up to 750mg to quell the fever. Any high fever is extremely dangerous and requires an ER visit to rule out sepsis. I learned my lesson the hard way. Since I put her on the daily Levofloxacin/Metronidazole regiment, my mother’s infection risks became under control.

3. Monitor CA19-9 biomarker on a weekly basis

4. Standard chemo (Gem/Cis, etc.) do not show good outcomes on CC, instead they harm patients more particularly those in poor conditions. If the liquid biopsy results show mutations that are suitable for immuno- or targeted therapies, definitely start them ASAP. If not, still ask for immuno- and targeted therapies, which generally have much lower toxicity then chemo. And they are probably the only treatment option left. I know in other countries immuno- or targeted therapies are offered to patients even if biopsy results provide no indicated mutations.

5. Resection is still the only way to potentially increase CC patients chance of survival beyond 2+ years. It’s crucial to discuss with the best surgeon at UCSF on the resectability of her tumor.

6. Watch out for her co-morbidities such as cardiovascular events. My mom had bradycardia and QT-prolongation due to the beta blockers they gave her. After I decided to pause all medications at that point, her heart conditions stabilized.

It’s a journey that is filled with agony and stress, but I never regret the hard time I spent with my mom, taking care of her because it was the last chance I could still talk to her and when she is gone, she is gone forever. I am missing her so much and when I look back, I can say I did all I could.

• This reply was modified 3 years, 1 month ago by Missingmom.