Date: Fri, May 28, 2021 at 9:09 PM
TL:DR summary at the end. (TL:DR stands for Too Long:Did not read)
April 16th we walked around Green Lake, had lunch at a Tamale stand, got some groceries, stopped at our storage unit, and some how or another spent about 7 hours out and about. It was a great day.
A couple days later, Dave was slightly feverish for a couple hours. Next day repeat. It quickly became a pattern, the chills would come on rather suddenly around 10, with sweating, as his temperature climbed,, peaking about noon, and dropping by 2. The rest of the day his temperature would wander slightly, frequently slightly above normal, under 100 with additional sweating at night.
But then came a day – Wednesday, the 19th of May, about a month after the first chills, he was making a lasagna for supper and was out of breath. It was reminiscent of the pulmonary embolisms he’d had the previous year. Wanting some one to order a scan we went hunting for the doctor who had last updated his prescription for his blood thinner a year ago. Finally got the right phone number and called the office. We were told the doctor would be informed of what was going on but that he should go to the ER in the meantime.
Arrived at the ER at 12:10 on Thursday the 20th, 1 year 7 months 4 days after this whole leukemia saga came to a head. They took him back a few minutes later but told me to leave even the waiting room – until he passed a Covid test. He passed the test and they let me rejoin him.
They ran all the usual tests from EKG to Cat Scans to blood tests. WBC 77000, 94% immature blasts. Relapsed Leukemia. Most likely T-ALL, although there was a tiny possibility that it had morphed into something else. Not good news regardless. But, at least everything else came back good. Heart, lungs, liver, kidney, etc. all in good shape. Only those damn blasts plugging stuff up.
He had thrown up when he first arrived because he had not had a chance to eat anything and his stomach was objecting to the thyroid pill he had taken. Then he asked for water and they said no because he had thrown up, despite it being because he had not had anything to eat or drink!
Hours went by, no water. Finally allowed some slow sipping when his protests of thirst got loud enough. After which he was finally able to provide the urine sample they wanted. It was dark, of course, due to dehydration and therefor they wanted to give him intravenous fluid even though he was more than willing and able to get the needed fluid by drinking.
So we spent the afternoon in the ER and had supper there waiting for a bed to open up on the oncology floor just like the first time. They wanted to keep an eye on him overnight. They started him on Hydrea which kills white blood cells indiscriminately, causing neutropenia if it isn’t already present. They also gave him other stuff to help with clearing the ensuing debris.
Friday, Dr. Cassaday showed up and the deja vu continued. “There is a clinical trial that you qualify for but if you are interested you need to sign NOW.” The chemo had been needed to get the leukemia under control. But Dave and I had already agreed that during the last 7 months he had done much better on Alternative medicine than he would have on chemo, and they had said that when the T-ALL came back/relapsed they would only be able to try to keep him comfortable. So we had agreed to no more chemo if that were the recommendation.
Another study option was a surprise. And an interesting one to boot! One that is studying a prodrug – a treatment that targets a specific enzyme found in the leukemia cells (and unfortunately a few other places). By targeting that enzyme a lot of collateral damage could be avoided. This is a phase I trial, however, with plenty of unknowns. Pre-human studies looked promising and the expectation is that liver, kidney, small intestine, and colon would also be attacked but within tolerance. No expectation of neuropathy, oral mucositis, hair loss and other common side effects. Dave would be patient number 4 or 5 (or there about)! He is only the 2nd to be on this local study.
The study is to try to find that sweet spot of efficacy where the collateral damage is still tolerable. Since only the lowest dose has been tried and his will be one step up (if we understand correctly), it may be too low to work well enough. We must trust that the universe has arranged for him to be on the best dose. Waiting for a higher dose later in the trial while we cogitate the pros and cons of participating was not really an option. It would risk higher collateral damage, but more importantly the Hydrea is only a stop gap measure and his condition demanded a better, prompt response. The number of malignant cells doubles every 10 or 12 days so waiting would be dangerous, they were already too high.
These studies, we are told, are scarce as hen’s teeth, partly because the T-ALL is relatively uncommon. So what are the chances of twice being eligible for a trial exactly when needed? It actually struck me as being suspicious that it would happen. Dave signed with the understanding that we could back out at any time. Kind of like putting earnest money on property. No point in doing due diligence unless your offer is accepted. But as soon as the ink was dry on his signature the story seemed to change.
I had the impression that nothing would need to be done until Monday when they would do a bone marrow out patient test for data and then start the treatment possibly as early as Tuesday the 25th – the earliest they could get the prodrug. But with the signature, it was suddenly changed to staying in hospital for continued monitoring and more Hydrea. Being in hospital means constant activity, blood draws, vitals, rounds, etc. which all add up to sleep deprivation. It almost seemed to me that they were deliberately ensuring that due diligence would be next to impossible.
Then putting in a Pic line was also scheduled for Monday. Schedule getting tight. Pressure, pressure despite assurances that we should not feel pressured! My daughter found a study using the same drug on liver cancer and spent hours getting an understanding of the medicaleze and pros and cons of the prodrug, thereby doing a huge amount of due diligence for us, and reported that it looked good. So we very gratefully relaxed and felt better.
We are not happy to be relying on Western Medicine again, with weekly visits to the clinic and the pic line needing to be constantly tended to, but we survived the last study and follow up treatments and this is expected to be easier. And given that last summer we were told that he would ‘probably not live past March or April 2021’, we are certainly glad to have yet another chance of beating this.
This study is specifically for those who either did not respond to original treatment or had relapsed. Not for those newly diagnosed nor for those in remission. Why, I have no idea.
So the weekend was just hydrea and related meds plus fluids and observation.
Monday was super busy, including calling Dave’s Septic Service to discuss his visit with the county officials at our Wye Lake property, to determine what would be allowed for well and septic locations and type. We had had every intention of being there, involved in the Q & A, but it took 3 weeks to get the appointment and they went and scheduled it for Tuesday the 25th. At the time the appointment was made (a week earlier on the 18th) we still thought we would get the fever under control and be able to go, and maybe I could be there even if Dave wasn’t up to it. We sure didn’t plan on being in the hospital starting chemo again while the officials were looking at the property. So talking with Dave about the situation was high priority for Monday.
We were also trying to get confirmation from the insurance company that not only was the study covered but also any ‘injuries’ caused by it. The paper work Dave had signed mentioned that some companies won’t cover such injuries and that we should ask. Easier said than done. Every number we called, every person we talked to for hours wanted to pass the buck claiming we needed more information for them to plug into their computer or that they were the wrong department. It was getting pretty frustrating. But eventually we did get the needed info and then the coverage statement. That was reassuring, as without it would mean giving them a potential blank check.
We had made several calls over the weekend which were unsurprisingly unproductive. But Monday should have been easier – it still took from 8AM till about 11. Three hours give or take a bit with not much time between calls. Isn’t our insurance system wonderful?
Next on the agenda was putting in the Pic Line which this time went in the left arm due to no good veins on the right. I was kicked out of the room for the procedure and when I came back I asked Dave if there had been any discussion about the skin irritation problem he had had before. No. But she hadn’t disappeared yet so I got her to come back and discuss his questions.
We explained that we wanted to be sure that the problem never started since the full 6 months (or however long it was) that he had the previous pic line, we had never gotten the skin to fully heal. She advised making sure that it was cleaned with saline solution before reapplying the clorohexadine antimicrobial and which dressing to use.
But when we passed on this advice to the nurse who would be doing the dressing change the next day, she went on and on and on about it being a different situation and there was no reason to be afraid of the skin getting irritated because it was very unlikely, but that when and if it did, they would deal with it! What part of being unable to fix it after the fact did she not get! We could see some redness at the edges already – the same place we had trouble before, but she insisted that was only pressure from the initial dressing that had to be tight to ensure there was no bleeding. "Not to worry". We shall see.
Once the pic line was in, it was lunch time and the bone marrow people were already waiting outside, but they were told to wait. So he had his veggie burger and finished right at noon which was when the procedure was scheduled for. But it was another 10 or 15 minutes before they were ready to start. They still had a whole lot of confirming exactly what was needed to do (how much in what vial for what purpose)– and explaining to a student what they were up to.
There were 4 of them. Andy (the Nurse Practitioner), the student, the lab technician, and a familiar face. Not positive what his role was but believe he was a teacher/supervisor helping Andy teach the student – Andy being experienced but possibly a tad rusty and benefiting from backup.
During the bone marrow aspiration they took 15cc’s of marrow for starting info and also for possible later studies not yet dreamed up. They went back and forth about whether they also needed a bit of bone for biopsy but decided against it.
Two o’clock they finished and 6 hours of non stop overlapping activity finally ended. We took a deep breath and then a nap. Then more phone calls trying to get access to his records for his outside doctor.
They talked about giving him platelets and whole blood due to dropping numbers but, again, decided not to. They also mentioned getting a blood products consent form signature since it would be needed at some point regardless.
That night he had fever and chills, very like the noon episodes of the past month except for the timing.
Tuesday was another busy day but not as much. It was the big day with the start of the new prodrug. Quite a bit of double checking that all numbers were appropriate. Then a shower with thorough antimicrobial cleansers. Followed by vitals. Then an EKG. The infusion itself only took 30 minutes. Another EKG. Frequent vitals at first then back to the 4 hour routine.
Tuesday night, fever and chills again – again 24 hours apart. Wednesday morning, they talked about giving him antibiotics – I think it was because he said there was slight burning on urination. We expressed puzzlement. We had inquired about antibiotics when he was first admitted in case the fever was due to infection. But they had insisted that there was no infection. Now, with the same symptoms, they were suddenly concerned. They seemed unaware that nothing had really changed. Seemed to think these were new symptoms that justified antibiotics even though the identical symptoms earlier had not. So which approach was correct? Antibiotics or none? After clarifying the history it was decided to check again for infection and hold off on antibiotics pending results since they were unlikely to have changed.
Wednesday he was feeling better than he had in several weeks and feeling optimistic. White cell count was down – I forget how much. Still getting Hydrea and Pregnisone, and stuff to help the kidneys deal with all the dead blasts. Numbers inconsistent but generally moving in the right direction. The nurses are constantly lecturing him about being careful because his BP is too low for their comfort, but it has only rarely been low for him and he is well aware of the need for caution.
That night, some 35(?) hours post infusion (in the wee hours of Thursday) , he was too chilled to go to the toilet for his half hourly pee and settled for the hated urinal. He asked how much volume there was and as I was checking the level I realized that the color looked really strange. It took me a moment to realize that it was due to blood in the urine. Probably would not have noticed if he had used the toilet as usual. We had gone through this during the D EPOCH trial but it was far enough back that I was not on the lookout for it.
Reported it to the nurse and she sent a sample to the labs and got an order for platelets but that had to wait until they could get a signature on the consent form. A form they had talked about getting signed at least twice before but had not gotten around to. Not exactly on top of preparations for eventualities. At least the blood settled the question of why there had been a burning sensation while peeing. Also that night he had a slight headache that didn’t last, but a bit scary given the blood and history of subdural hematoma!
Thursday morning they said they wanted to give him antibiotics to be sure no sepsis got established. That sometimes, with cancer patients, they never find the source of fever but it can still lead to trouble! Why didn’t they say that before? Why did they object to antibiotics when he first came in?
I’m confused, but acknowledge that it is very complicated and there is no way I can be brought up to speed on all the different factors.
It is now 1 week since he went it to the ER. I probably should not be surprised at how similar this is to the last time. In spite of that, we are hopeful that the side effects will be minor and fewer.
I did not get this out on Thursday because I wanted Dave’s input and he was too tired to give it.
So, to continue, Thursday afternoon he had another bout of chills, fever, and sweats. More severe than previous bouts. Violent, exhausting shaking. Higher fever. Drenching sweat. But once it was finally over and he had some sleep he was feeling better. We took a shower and he climbed into a nice fresh bed. The first bag of platelets was not quite finished when it was aborted due to this latest onset of chills and spiking fever – which could indicate a reaction to the blood product. The partial bag was enough for his platelets to climb from 18k to 35k – but then they dropped back down again to 20 something. Perhaps used up to stop the urinary bleeding (and possibly other unknown bleeds), but it could have been something else. So it was decided to give another bag of platelets.
Having rested up, it was time for the additional platelets. They ordered them. They gave him some Tylenol to hopefully forestall a fever but the fever started climbing an hour later anyway. Rather than start the bag and have to abort it, we waited for the Tylenol to kick in. If we waited too long, however, the Tylenol could wear off before the infusion was completed. Picked a starting time by guess and by golly. The fever climbed. The platelets dripped. Made it. The fever climb did not exceed the magic 1 degree Celsius number. The fever was expected to go up as usual regardless of the platelets but since it could mask additional trouble from the platelets, the protocol is to still abandon them. He had a third bout of chills, fever, and sweats that day. This had already gotten old a long time ago.
Friday was a repeat performance with trying to figure out the best time to give the blood that was needed due to low hemoglobin. He had recovered from the most recent bout and it was decided it was an opportune time to do so. The blood arrived with an unusable label and had to be sent back with a STAT replacement request. But the STAT didn’t happen. And when it did arrive, the chills were starting up yet again. So the blood was sent back to the displeasure of both the blood bank and the nurse.
Waited a few hours for the cycle’s fever to break and then reordered the blood even before the sweating ended and the temperature returned to normal. By the time it actually arrived, the temperature was indeed back to normal. So that timing worked out well.
The most recent report said that the white blood cell count had dropped from a high of 77k to 1.79k – with zero being the goal. Most numbers were where they expected or wanted them or trending towards them. The biggest problem is the darn fevers – 3 per day now. They are exhausting and miserable and we don’t know why they are occurring. Nevertheless we are optimistic.
Surprisingly similar to October 2019, Dave is in the hospital with relapsed T-ALL leukemia. He is again in a clinical trial for a new drug – this time something they are calling a prodrug. It is supposed to ONLY attack cells with a particular enzyme found in abundance in the leukemia cells – but also found in some other places. So still not a panacea but far more targeted than other chemos. He has already had his first dose and if it does its job will continue getting them for up to a year. One of the reasons he qualifies for this trial is that he is otherwise in great shape with all organs healthy – we believe due to the alternative treatment we chose instead of maintainance chemo.