His blood counts were Whites: .95; Hemogloblin 10.8; Platelets 41,000; and ANCs .66
Liver counts: Total Bilirubin 5,8; Alkaline Phosphatase: 353; ALT: 129; and AST: 84; PT INR 1.1 These numbers weren't great, but tolerable at this point. The doctors were hoping that the Posaconazole would allow these numbers to go a bit lower, but by this day, there were trending up.
It took forever to be discharged of course. His nurse had to deaccess his port, and said she needed to use heparin, but I told her that his new Power Port, did not need heparin. So, apparently, she had to take an extraordinary amount of time to look it up, because I had to go get her an hour later, and she said that I was right, his port didn't need flushed with heparin.
The other delay, was waiting for his perscriptions from the pharmacy. The nurse had arranged for bedside delivery and someone did come by early in the afternoon telling us that the co-pay for the Posaconazole was going to be $70 and was that ok. We said yes, we didn't have a choice. She went off and didn't hear from anyone the rest of the day. After our nurse tried to call there, I decided I was going to pick them up myself so we could get out of there. I went to the main pharmacy and they didn't have the prescription there, it was at the Crile Pharmacy across the skyway. So, I had to walk over there. Luckily, a very nice lady in transportation was there with the golf cart and she offered to drive me over (yes, it is a long walk). When I got there, I realized that the prescription was only for 10 days, not 30 days! So, $70 for only a 10 day supply. The pharmacy had the scripts there and had no intention of getting them over to us, as far as I could tell.
When I got back, the nurse was ready to go over his discharge instructions and ordered a wheelchair to take him to the entrance for me to pick him up. By this time it was about 4:30 p.m. Needless to say, we hit Cleveland rush hour traffic and didn't make it home until about 8:30 p.m.
On Tuesday, October 27, Todd had a follow-up appointment with his local oncologist, at his request, so that we could "reconnect" even though all Todd really needed was blood work. It was a waste of time, the local oncologist still can't remember the name of the trial drug Todd is on, and asked us why were we there! Ugh...
Blood counts on Tuesday were mixed: Whites .7; Hemoglobin 11.3 (Never been this high since before transplant. Lack of fluids can make his blood concentration higher though). Platelets: 89,000.
We didn't get his CMP (Complete Metabolic panel) and had to request the results, but they said they wouldn't be able to get them and call us back until the following day, Wednesday. Ugh...
We went home and took a long nap, as we both were wiped out and happy to be sleeping in our bed.
Wednesday and Thursday, October 28 and 29, 2015, Todd was tired. I mean sleepy and not getting out of bed tired. I didn't understand this. His hemoglobin was so high! Then why was he so tired? I just chalked it up to fatigue. I was dragging, and I'm not sick!
I didn't hear from the local oncologist's office with the liver results, so I had to call and ask for the results via a voicemail. When I got home from doing my practicum at UD that afternoon, they had Still, something seemed "off." I texted his trial nurse with the results later:
Direct bilirubin was 6.4; Alkaline Phosphatase: 448; ALT 200; AST 107; So, these numbers were still going in the wrong direction and she asked if he was having any abdominal pain.
Until Friday, he had taken his AG221 and his Posaconazole every day along with his other medications, after getting the advice from his BMT doctor on Thursday. By Thursday night, he was having stomach pain about an hour after he ate. He was up pacing the floors, feeling like he did that night in the hospital when he was throwing up. His stomach finally settled down, but I was going to ask the doctors if they thought it might be a gall bladder attack.
Friday morning, we had to leave the house by 5:30 a.m. to get to his first appointment at the Cleveland Clinic by 9:00 a.m. First up, was the infectious disease doctors. After a thorough exam, they said they wanted to see his blood results for the day and then confer with his BMT doctor. In the meantime, they set up an appointment for a follow-up CT scan on November 18, 2015 to see if the pneumonia was gone or not. I asked about the stomach pain, and they said didn't think it was anything in his abdomen, especially not the gall bladder.
After that, we headed to treatment in the Taussig Cancer Center, were they drew his blood. one of the lab's machine was broken, so it took over 2 hours just to get the CBC results:
Whites were up a bit at .99; Hemoglobin had dropped to 9.5; and platelets had dropped to 50,000. ANCs and liver results were still not back by 2:00 p.m. when we headed upstairs to see his BMT doctor.
When we got upstairs, his trial nurse was there and his BMT doctor announced that they wanted to him discontinue taking BOTH his AG-221 trial drug, and the POSACONAZOLE. I was shocked! The liver numbers must have been bad. They finally had the results back:
Total bilirubin was 5.6, but the Alkaline Phosphatase was 558! AST 441! and the ALT 573!
While I didn't realize at the time how bad these numbers were, I would later find out that they were off the chart and severely dangerous! My first concern was fighting the pneumonia with NO anti-fungal drug. I asked the doctor: can't the fungal infection get worse? Her first response was that "they" or she still wasn't 100% convinced that it was a fungal pneumonia, but that she COULD be WRONG. (Shocked again). I brought up the most recent CT scans that showed nodules, which could be indicative of a fungal pneumonia, but again she said it isn't conclusive, but she could be wrong. This raised a red flag to me. So, what if it was fungal and they weren't going to treat it? He would start showing symptoms again? Yes, I could see this is what she meant; I had my answer. If he started running a fever again, or having lung problems, then it could be proof that it was fungal. Hadn't this already happened once while he was in the hospital? They took him off the anti-fungals, and that night he spiked a fever.
Then, we asked at what point could he start taking the AG221 again? What was the criteria they were going to use? They said at this point, his liver enzymes would all have to return to "baseline" numbers. I asked what, 1.5? And, the trial nurse, said no, the drug company wanted those numbers back to the levels they were before he started taking the drug! (Another shock). Going through my mind? Without the trial drug, it would only be a matter of time before his blood counts would decline, making him neutropenic and possibly needing transfusions again! After I brought this fear up to the doctor, she said she didn't think his numbers would decline that fast, but in my mind I remember that the first week he took the drug, it reversed his situation. Would a reversal of not taking his trial drug, make them decrease in a week?
This was not the news we had anticipated at all! It was determined that it would do no good to continue to check his counts via blood work in Dayton, since there really wouldn't be much they could do. Obviously, if he becomes symptomatic, can't get out bed, weak, bleeding, or other signs of low blood counts, I could run him into the Cancer Center/Local oncologist's office for blood work. I asked if the Cipro could cause any more elevation of his liver enzyme counts and the doctor said no.
Bottom line: Liver enzymes too high; no trial drug and no anti-fungal medications. Return for regular trial day, next Wednesday, November 4, 2015. He was already scheduled to go in for that day, since it would be Cycle 8, day 1, his last 10-hour day of blood draws on the trial. So, this protocol may not take place if it is determined when he gets his CBC pre-testing that his liver enzymes are still too high and he still won't be allowed to take the drug that day. If the numbers have come back down to baseline numbers, then they will proceed with giving him his dose of AG-221 that day, and then commence the 10 hour day of testing.
We didn't get home until about 8:30 p.m. It had been a 15 hour day of traveling and appointments. I drove both ways, up and back, so Todd could rest. Even though I was tired, something still seemed "off" to me about the appointments. The trial nurse was extremely quiet, and Todd didn't like me bringing up the symptoms of being sleepy, tired, and having the bad stomach ache the night before, but I felt there had to be some reason for this. So, I began searching for symptoms of elevated liver functions, and bam! There is was on several websites:
Symptoms of liver damage
Jaundice; severe fatigue; fever, abdominal pain; severe nausea and vomiting; bleeding that does not stop after a few minutes; and unusual swelling in feet or legs or weight gain of greater than 3 to 5 pounds in 1 week. This from http://cancer.unm.edu/cancer/cancer-info/cancer-treatment/side-effects-of-cancer-treatment/less-common-side-effects/organ-problems/liver-damage-hepatotoxicity/
From the National Library of Medicine: Severity Grading In Drug Induced Liver Injury (DILI):
Symptoms: fatigue, weakness, nausea, right upper quadrant pain, itching, skin rash, jaundice, anorexia, or weight loss. (paragraph 9).
Looking at these symptoms, it was clear, that Todd had many of them! Why didn't any of the doctors he saw tell us this! NO ONE said, yes, these are symptoms of liver damage! I have a feeling, no one wanted to tell us! It is hard to believe they didn't know, but I guess, I could be wrong.
The more I read, the angrier and more worried I became. It was looking like these liver enzyme numbers were indicators of some level of liver damage.
While the first chart on Severity Grading Chart is mainly for AIDS patients, the second half of the document and chart is for cancer patients on chemo drugs.
I was also researching his liver metabolism gene mutation. Apparently, this has not helped with his liver coping with the medications.
I'm just glad that they were mindful to watch out for high liver counts and now my apprehension of Todd going off the trial drug has dissipated. I know that keeping his liver from severe or permanent damage is more important right now.
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