Update: September 22, 2016
Change of plans on the chemo. Started trabectedin (brand name Yondelis) today. It's a 24-hour infusion, so I have a little tote bag with the IV bag, a battery powered pump, and tubing that connects to my chest port. I go back to the infusion clinic tomorrow to have it removed.
This is a high toxicity drug. The chemo RN warned me about what could happen if it were to somehow escape from my veins into surrounding tissues. She said any unusual pain near the port, any sign of leaking or trauma, to get to the ER fast and show them the trabectedin info sheet. She said I needed to be careful while moving around - if the tubing got twisted or tugged too much, it could pull out from my port.
I freaked myself out leaving the clinic parking lot. I had the tote bag in the passenger seat with the tubing snaking to my port, and I must have been trying to adjust my seatbelt or something, because suddenly the tubing snapped free of some snag and I thought, "What happened? What happened?" while frantically checking for any problem. Everything seemed ok - I think the tubing had been stuck onto my seatbelt somehow.
The infusion bag holds 504 mL total volume - 3 mg of it is the trabectedin, 444 mL is NaCl, a regular IV saline solution.
So the usual chemo drug side effects warnings - nausea, vomiting, fatigue, constipation, low white blood cell count, low platelets - along with anemia, increased liver enzymes, neutropenia, and some others. I'm always slightly anemic, and my CBC today showed me at 9.9 Hgb (range is 12.0-16.0) so already out of range.
This infusion is only every 21 days, which is nice. One day, every 3 weeks. I'm not sure if I have to go in for blood tests in between, or if I'll be given a Neulasta injector as I was last chemo regimen to build up my white blood cells.
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.
Based on this, I guess, my oncologist Dr T. 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. He 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. I had an office appointment scheduled 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 didn't want sugar-coating. I needed to know the truth, so I could make plans and cope with what was 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.
Update: September 11, 2016
I'll be going back into chemotherapy, and the oncologist warned that this round of drugs will be much harder for me to tolerate. Ifex, generic name ifosfamide, and Adriamycin, generic name doxorubicin. Links below.
Info is from Chemocare.com , a website with extensive info about chemotherapy medicines and their side effects. They're partners with Cleveland Clinic, among other cancer organizations, and the contributors all seem to be academically or medically based.
2015 September - December
The chemotherapy in 2015 involved three drugs, two of them anti-cancer and one to build up white blood cells in the bone marrow, to prevent infection.
The chemo drugs were Gemzar, generic name gemcitabine, and Taxotere, generic name docetaxel. Links to info on these drugs:
The other one was called Neulasta, generic name pegfilgrastim. Link to that one:
I had the on-body injector, which was attached to me at the chemo clinic. It automatically delivered the medicine dose the next day. When the dose was done, I pulled off the injector and put it into my sharps container.
My chemotherapy was six cycles, each cycle a three-week sequence which went like this:
- Week 1: Gemzar only
- Week 2: Gemzar, Taxotere, and Neulasta
- Week 3: Resting week, no chemo
I've been warned of the possible side effects. I'm going to keep track of what I experience. See my Side Effects page here. I have to remember, though, that some of this might not be related to chemotherapy at all, but just general aches, pains, malaise, and fatigue from everyday life.
- Chemo Day 1, Thursday, Sept 3, 2015. Drug was Gemzar, administered through arm IV since central port wasn't working properly. Saturday, some trembling for a few hours and fatigue. Sunday, both forearms ache, bone ache. Controlled with ibuprofen.
Updated September 22, 2016
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