Today, a New Cancer Drug

I'm back in chemo treatment. This afternoon, I started a 24-hour infusion of trabectedin (Yondelis), which my oncologist Dr T hasn't prescribed before. He's seen it in research trials, but I'm his first patient to try it. I think this is a last-ditch effort to save my life. 

 It's a take-home drug, the IV bag contained in a shoulder tote with a battery operated pump. Tubing connects it to my chest port. I go back tomorrow to have it removed. It was emotionally challenging going back into the treatment room. I had really hoped, had believed, that was all behind me. Left it back in 2015.

Background on the change to this drug: For almost 9 years I've worked in the ER of my local hospital, doing non-medical work. On Wednesday, Sept 14, one of our ER docs checked me out because I'd been having sharp pain lower right abdomen all day. Working in the ER gives me easy access to RNs and medical advice. :-) CT scans showed significant growth in both pelvic and chest tumors since the previous CT on Sept 6.

My oncologist, Dr T, was out in the boonies doing Cycle Oregon that week, which sounds like an amazing adventure, but was in touch with his office sometimes. His medical assistant Mary and Nurse Practitioner Jun spoke with me a couple of times to keep me updated. On Sept 9th Dr T had said he wanted to use the chemo drugs doxorubicin (Adriamycin) and ifosfamide (Ifex). Based on the new scans, I guess, Dr T had changed his mind and said he wanted to try a newer drug, trabectedin, which was approved by the FDA October 2015. It's been used previously in Europe, Russia, and South Korea on soft tissue sarcomas. 

I'd already started radiation on the 14th to reduce the size of a lung tumor close to my heart. I'd do five days, Wednesday through Friday then Monday and Tuesday. This time it's 3D conformal, concentrated radiation in precise locations, which can be used when a tumor is close to another organ.

They scheduled an office visit with Dr T yesterday, on Sept 21. My husband was with me and Dr T was blunt, as usual, which I had asked him to be from the start. I don't want sugar-coating. I need to know the truth, so I can make plans and cope with what is coming.

He told me the cancer was spreading so rapidly that if I didn't do any treatments, I would probably die within 6 months. That was stunning. I tried to absorb this - said the pharmacist at my ER had looked up the trabectedin in her Micromedex database and printed up some pages. He asked what she had said about it. I said she thought it looked very strong, but didn't see anything really awful about it. I said I would go along with it, if it would give me a chance.

Jun said they were trying to get it approved, through the OHSU pharmacy and also through my health insurance.

I asked Dr T if he would go along with the Oregon Death With Dignity Act, which lets terminally ill people received a lethal dose of medication to keep at home, to use if or when they wish. The law was enacted in 1997 and I am so glad I live in a state which gives residents this right. I don't know if Dr T said he would participate in that or would direct me to a doctor who would, but he wasn't opposed to it.

He also said I need to have a POLST filled out. The  Physician Orders for Life-Sustaining Treatment lets medical personnel know what treatment to provide if a patient is found in cardiac arrest or needs medical intervention in other cases. Some people call this a DNR order - "Do Not Resuscitate" - but the POLST offers other options too, for those who do want CPR, intubation, etc. The  paper is bright pink and usually placed on a patient's refrigerator. That's where the ambulance look for it. It can also be entered into the state database and accessed by medical personnel.

They gave me the POLST to take home and look at, and take it back to them for Dr T's signature if I want to use it. I'll fill it out, and hang it on my refrigerator, but I'm not sure what choices I'm going to make yet.

The POLST drove home the seriousness of my situation. I see these in the ER, they come in with the ambulance crew, the doctor looks at it and either says, "Ok, start treatment" and the nurses and techs spring into action, or "DNR - everyone wait" and they all back off a bit. 

I just never connected that pink paper with me before now.