Plot Twist
Entry 1 8:41 p.m.
Jenny went alone to pick up her Chinese medicine this morning. I didn't go with her, as I was working. She then took her meds to Murray's, who is now brewing Jenny's tea for her. The smell pervades the house, and Jenny can't stand the smell and worries it bothers us. I think, also, this started because it was getting hard for Jenny to brew it herself, and allowed her more opportunity to see el pinché.
At VM, I parked in the parking garage, very close to an exit to avoid a long walk. She took no more than 20 or 30 steps and doubled over in exhaustion. I waited for her to recover, and we slowly crossed the street to the entrance, with me offering my arm for balance. I grabbed a wheelchair to transport her through the COVID checkpoint and up to oncology. She stood up at the elevator, aware that as soon as we got off we would be near the receptionists desk, and she would have little to walk.
The scale at the doctor's office says she weighs 149.7 lbs., a 3 lb. variance from our scale at home. Neither is a great weight. Her oxygen sats were 98 resting when first checked.
When the doctor came in I asked about the tumor causing stenosis of the renal vein. Dr. P said that if it continues, it could cause ascites--fluid buildup in the abdomen. I told him about Jenny's vomiting--now 5 days in a row and 7 out of the last 8 days. He suggested because the tumor is pushing into the duodenum it could be causing the vomiting. I then told him that Jenny has been so weak she can't really do much. I told him about getting the wheelchair. He was surprised, startled even. He suggested she have her ox saturation level checked again, both resting and then after walking a bit. She did both, and her oxygen sats were well within normal status. Interestingly, despite the walk around the unit, she didn't double over. Not sure why. He didn't circle back and follow up to see if there might be another reason for this, but did say before the sat test that a blood clot could cause this, but the C/T scan showed no evidence of thrombosis. I am worried.
NEXT STEPS
The doctor offered 3 options for treatment of the cancer going forward. Well, two really. The first is to try the GTX chemotherapy. It went through trials ending in 2008--before there were any breakthroughs in cancer treatment. It involves taking chemo pills several days plus an infusion once a week. Here is what the research paper on the study found:
The overall response rate of all 35 patients treated with GTX (from 0.5 cycles onward) was 29% (CR/PR) by WHO criteria, and 31% had a minor response or stable disease (MR, SD). At the metastatic sites for the 35 patients, there were 9% complete (CR) and 31% partial (PR) responses (total 40%). For the 31 patients who had their primary tumor (4 patients had a prior Whipple resection), there were 13% CR and 19% PR for a response rate of 32% at the primary tumor site. Overall median progression free survival of responders was 6.3 months (95% C.I. 4.4-10.4 months) and median survival was 11.2 months (95% C.I. 8.1-15.1 months). Survival after initiation of GTX at 12, 18, 24 and 30 months was 43, 29, 20, and 11%, respectively.
So, it could do something, fingers crossed. I must say, given Jenny's discussion about stopping chemotherapy the last few days, that she agreed to do this immediately, rather than think about it for a day or two took me (only) somewhat by surprise.
I remember my mom had requested no extreme measures should they be needed, and specifically no intubation. When the time came for the decision to intubate or not intubate, she chose intubation. I think most of us, when faced with death or some additional measure that may work, would choose the additional measure. In fact, I predicted Jenny would opt for chemotherapy in an earlier post, but I really did think this time she might contemplate for a bit which treatment to try before deciding.
The second option is undergoing a trial at Seattle Cancer Care Alliance for what is called a (CAR) T cell trial. Chimeric antigen receptor (CAR) T cell therapy is an approach that uses your own immune cells to fight cancer and has shown great promise in treating some types of blood cancers, and is now being experimented with in PDAC. It takes two or three months to be screened to determine eligibility, and Jenny is interested, but would begin the GTX therapy as well. If it takes 3 months to get in, she will have gone through this course of treatment by then.
The third option was therapy based on her genetics. But her genetic profile did not yield any markers suited for genetic therapy. I should note, even if it had, such treatment only works on 1-2% of those who receive treatment for pancreatic cancer.
Finally, the doctor informed us that there is a trial coming to VM next month, but that he can't talk about the study--information embargo until the study is announced. So, we will find out more about that next month.
Jenny asked the doctor what would happen if she were to stop treatment now--noting she has no intention to do so. She asked how long she would live. The doctor said he would tell her what he tells all patients who ask this, saying she would likely have 3 months to live after that, but that "only God knows when she will die." This was welcome news to me, because as far as the oncologist is concerned, she isn't going to die right now, something I have been worried about, given her current debilitating problems. It's why I have urged her to have her living wake sooner rather than later, and why I have been dreading Christmas.
Thus, my frustration that the doctor did no follow up on her weakness. I am worried about what is causing this lack of energy. I'm glad her oxygen sats are fine, I am relieved, frankly. Same goes for the C/T scan that doesn't indicate a clot. But, her quality of life has been severely impacted. I want to know what is causing this. I hate to see her suffer. I don't want her to die needlessly because something was overlooked. I don't want her to suffer needlessly if there is something that can fix this.
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