Fever last night, new antibiotics today

Posted by Becky

As was more or less expected based on yesterday's bottom soreness and elevated heart rate, Leif spiked a fever last night. They added an antibiotic - Zosyn - based on its broad-spectrum coverage. The blood cultures they took yesterday indicate that they're dealing with gram-negative bacteria. Leif's bottom, where the surgery was, has been more sore and red today and yesterday. The Infectious Disease doctor we've been seeing, Dr. Aoyagi, came by and checked things out, and said that he thinks Leif's on the appropriate antibiotic. He'll be bringing an ID doctor who specializes in immunosuppressed patients by to see Leif, later this afternoon.

His temperature was back down to normal by this morning, but he was feeling pretty wrung out. He got a unit of platelets and one of blood, after which he felt enough better to get up, eat breakfast, and take a sitz bath. Then he lay down and listened to a book on tape until someone came to take him away for a chest xray. That's routine, to check for lung problems anytime he gets a fever.

He just came back from the chest xray, and is feeling energetic enough to investigate why he hasn't gotten a spinach frittata for breakfast yet during this stay (answer - he was on a low phosphorous diet last Frittatta Day). I promised him that if they didn't bring a frittata by Saturday, I'll make him one.

Not much to report

Posted by Becky

We had a good Christmas, though geographically circumscribed by the 4 walls of DHMC. My parents flew up from Texas, so we got to see them over the last few days. They had to leave a bit earlier than planned, switching to an earlier flight before an approaching snowtorm hits Boston. The hospital kitchen made a not-at-all-bad Christmas dinner for patients and their guests, so we had roast beef and pumpkin Bundt cake. More importantly, we talked with a good number of friends and family on the phone. On Christmas Day, Leif got a small refrigerator delivered to his room; the hospital has a few dorm-size fridges that are available to patients who request them. This should make our lives easier. No more scrambles to re-date-label the cheese and half-and-half before the nutrition team throws them away, and Leif can get a midnight yogurt snack without masking up to leave the room. We have a second set of Christmas dinners stashed in the new fridge, made by Prue's friends Richard and Pierre. Those are on the menu for tomorrow's lunch.

Leif's still holding up well; no fever or infection so far. This is Day 10 of this chemo round. He has another dose of Rituxan scheduled on Day 12. Typically on this regimen, patients' blood counts start coming up around Day 21. However, Leif's blood counts have not come up as quickly as the average patient's. All of which is to say, these are still early days for this chemo round, but so far, so good.

He did get a unit of blood this morning. Since his spleen soaks up the blood products they give him, rather than giving red blood cells based on his hemoglobin numbers, they're going to give them based on his symptoms. They will still give platelets based on his numbers. This morning he felt extra tired and had a slight headache, which the blood transfusion dispelled. So now he knows what symptoms to check for. His fatigue is increasing on a daily basis, which is to be expected. He took a decent walk just now, which is the best way he has found to combat the feelings of fatigue and general crappiness that accompany chemotherapy.

Done with chemo for a while

Posted by Becky

Leif's done with chemo until Day 12 (this is Day 6) when he gets one more dose of Rituxan.

This morning Leif found more precipitate in his etoposide line. He'd been checking it pretty compulsively since the snafu on Thursday. The line was clear when he checked it at 6am, but contained precipitate around 9am. The nurse stopped his drip and called the IV team, and the IV nurse tried changing the cap and flushing the line with no luck; the new PICC line, that he got Thursday afternoon, needed to come out. She kindly waited until they were able to get Leif his sedative, but it was still a stressful procedure for him. He doesn't need a new PICC for now; they can use his port, since he's done with his chemo regimen and is unlikely to need a large number of things infusing at once, like he has been getting. 

Since he'd gotten some extra etoposide from a new bag on Thursday before they decided it was OK to stop the infusion until his PICC was changed out, and there was a roughly equivalent amount left in the bag (his final bag) when they stopped it this morning, the doctor decided it was safe to call the entire dose done when the precipitate turned up.

The pharmacists said that the etoposide that precipitated was from the same manufacturing lot # as the doses Leif had received without problems for the previous 3 days. There is still no answer as to why this problem has cropped up. The pharmacy & nurses changed their procedures after Thurday, to mix the dose within an hour of starting to infuse it, so it won't sit for longer than 13 or 14 hours total (it's supposed to be stable for 24 hours); that was the case with this latest batch that precipitated. We were told that DHMC will probably infuse etoposide in 6-hour increments instead of 12-hour increments from now on, to prevent this from happening to other patients. Switching the infusion from a PICC line to an IV (which would obviate needing to remove an entire PICC in case of problems) was not an option, because etoposide is hard on the veins; it needs to go into a central line with a high volume of blood flow. And of course, they didn't want to risk gunking up Leif's port, which is more invasive to remove than a PICC.

After the PICC removal, Leif's mom, brother, and sister-in-law came in to visit him, after driving over from Maine last night. That was a nice way for him to relax and recover, seeing them one at a time since he's been getting fatigued easily. It was great to see them. He wasn't able to see much of his nephews since preschoolers are such active little germ vectors, but he at least got to say hi to them. Since he had company today, I spent a lot of the day out of the hospital doing a little shopping, eating good meals, and visiting my aunt. I'm staying at the apartment tonight, with a mystery book and a long winter's nap on the agenda.

Leif was looking good when I left. They've stopped the IV fluids, so the puffiness should start going down. The expectation is that his blood counts will continue to decrease from here on out, so they'll be giving him transfusions as necessary and monitoring him closely for infections. Nearly all patients on this regimen get infections because their neutrophil count goes to zero for so long that normally-benign microbes, already existing in their bodies, get out of hand. So the team will be watching Leif closely and treating whatever flares up. He's already on a lot of antibiotics, some prophylactic and others targeted toward the microbes that had been infecting his abscess. The surgery site continues to look okay; it's no longer oozing at all, and he is diligently taking sitz baths four times a day until the surgery team tells him it's okay to cut back.

A day full of argh, or all's well that ends well but some uneventful days would be nice

Posted by Becky

So far this round of chemo is going okay. Leif has nausea and loss of appetite, and needed a unit of blood today and yesterday. His neutrophil count is still good, thanks I suspect to last week's Neupogen shots.

Today an alert nurse started to disconnect one of Leif's IV lines at the end of a chemo dose, and saw that there were little crystals of white crud inside the line. She stopped the IV, didn't flush the line, and called in another nurse. They checked further, and there was some of the same stuff in the line he was getting blood through, too. Much discussion ensued, involving the IV team, hematologists, pharmacists, and nurses.

What they think happened is that one of his chemo drugs, etoposide, precipitated out of its solution. Etoposide has a tendency to do that at concentrations higher than 0.4 mg/mL, and Leif's doses are mixed at 0.395 mg/mL. The pharmacy follows the recommended protocols; the doses are supposed to be good for 24 hours, and they make 12-hour doses within the correct time window, but for some reason (manufacturing problem?) this batch precipitated under these conditions, sometime near the end of the dose. The nurses told us this issue hadn't been seen with etoposide at DHMC for quite a long time, but it isn't unheard of. This is a drug that he gets 24 hours a day for 4 days.

Anyway, the nurses had hung the next bag of etoposide on a different line in the meantime, because the initial reaction of the doctors was that it was important not to stop his chemo. They switched the blood transfusion to his trusty port, and ran the etoposide through a line on his PICC that had only been used for normal saline and didn't show any precipitate. Then the IV team weighed in, and expressed their concern that there could be more precipitate in the ~9 to 20 inches of the PICC that are inside Leif; so they stopped everything going through the PICC until it could be replaced. More conferencing. Finally his doctor came in and gave us the plan; once his blood transfusion was done, they would remove his PICC line and put in another one, then resume his chemo, fluids, etc. 

Fortunately the nurses did a good job giving him enough sedatives that he was OK through the process of putting the new line in. They had to put it in his left arm because he's had two in his right arm recently, and they need to give that side a rest. They didn't remove the old line, which they can do in his hospital room, for several more hours - the IV team was short-staffed today and very busy. As long as it was still in place, the idea of a PICC line in his vein that was full of crud was quite stressful for Leif; the sedatives were wearing off, he was experiencing extra nausea, and he had missed a couple of naps. Right about then, the awesome Mike Aaron called and distracted him for a while, which was the best medicine we could have asked for.

The doctor let us know that she doesn't think the precipitate is going to hurt him. Also, pausing the chemo for 6-8 hours is not going to be a problem. It will just run that much longer at the end of his dosing period. Only if they had to pause it for a couple of days would the effectiveness of the chemo be reduced.

Another new, fun thing Leif is discovering, as of Tuesday, is life as a diabetic. The dexamethasone steroid that they give him with his cytarabine chemo can trigger diabetes. They test his blood sugar 4 times a day, and give him insulin when necessary. Because, you know, the guy didn't have enough needles in his life.

His phosphorous levels are also high, which is caused by the lymphoma cells dying off quickly and creating a lot of crud for his kidneys to clear out of his bloodstream at once. He's been getting medication to protect his kidneys from this process (called tumor lysis) including a phosphorous binder, rasburicase (a synthetic enzyme that breaks down uric acid), allopurinol (which prevents uric acid formation), and calcium supplements, since in trying to get rid of the excess phosphorus, the body uses up a lot of calcium. They also give him lots and lots of IV fluids, and a diuretic to help flush them all out. The fluids make him look a bit puffy, but he doesn't have severe edema (swelling) in his legs like he's had in hospital visits past. He's once again wearing a sequential compression device (SCD), that inflates and deflates a pair of fancy white tyvek leg warmers.

A tall nurse helped me replace the ticking clock with our silent analog clock from home. Leif is finally getting some sleep, with music playing in his headphones. It's pretty quiet in here with only the heating pad (for his back), SCD, and a single IV pump running. His neighbors remain quiet, too, although they've changed out on either side.

Admitted to a not-pink room at DHMC

Posted by Becky
Leif's been admitted to a room at DHMC and is scheduled to start his chemotherapy at 9pm. It's 10pm now, and the pharmacy hasn't sent it up yet, so we're clearly on hospital time. So far, his nurses and aides are all ones he's had before, which is nice. They like how he looks with facial hair. (Me too.)

His phone # is 603-650-2108. You can call between about 8am to 7pm; if he's asleep or occupied, he won't answer.

His first appointment was to get cleared by the surgeon for chemo. Ordinarily they'd want to wait longer, but we're trying to balance healing with Leif's need to get back on chemotherapy, and Leif appears to be healing up well. Then we met with Dr. Meehan. Leif's spleen has enlarged from where it was earlier in his recovery from this chemo round, and that plus the suppressed blood count implies that the lymphoma is still pretty active. He briefly considered putting Leif on a different chemo regimen, but after doing some calculations, decided to stick with the same one as last time after all. The plan is still to go straight to transplant from this chemo round; whether a full or mini transplant will depend on how Leif tolerates this chemo. Dr. Meehan is concerned about the toxicities involved with a full transplant. However, that's a decision for another day.

His heart test and pulmonary test fell within acceptable parameters for transplant. There is some work the dentist would like to do (one deep cavity, wisdom teeth removal) but that is a lower priority/risk than the lymphoma or the former abscess site.

Then it was out to the infusion center to get a blood draw. Once the labs came back, they tanked him up with some platelets so they could put a PICC line in. The transplant coordinator walked us to the department to get the PICC line; since Leif hadn't officially been admitted yet and therefore was operating as an outpatient, there was no friendly aide to wheel him off to the correct location. I'm glad she helped, because we had to go to three different places before we found the right one. Also because of the outpatient issue, the PICC line staff hadn't received the orders to give Leif a sedative first due to his needle phobia. Having one of these put in is particularly stressful for him, since it's a long needle that goes in quite a ways, and part of his phobia is anxiety that a needle will break off underneath his skin (he knows that's not rational ... thus the term phobia). Anyway, that was a stressful experience, and he got lots of apologies and a slug of Ativan afterwards. By this time it was about 5pm; we went back to the infusion suite to wait until his room was ready, and then got moved in.

His room is peach colored, not pink, which is a relief. It seems to be in a relatively peaceful location, with quiet neighbors, near where he was before. Fortunately I think Leif is designated to always get private rooms, due to the expectation that he will soon be neutropenic (low white blood cell counts). The clock ticks loudly, though; I need to bring in our silent clock from home since ticking clocks make it difficult for Leif to sleep or concentrate.

I'll be staying here with Leif tonight; they brought in a cot for me, and we got all the furniture rearranged to suit our preferences. There was a nice snowstorm last night, and the drive into the hospital was quite pretty.

Doctor visits this week

Posted by Becky

So today is a week of waiting while Leif heals up from Friday's surgery. The plan is to have the surgeon check the site on Monday morning, and if he gives the OK, admit Leif immediatly afterward and start chemo that afternoon. He'll be getting the same high Ara-C, Etoposide, and Rituxan regimen as last time. It's stressful to wait a week since he needs to get back on chemo pronto, but the surgeon was adamant about giving him time to heal at least until next Monday.

At yesterday's clinic visit, Leif's blood counts were down. This could be due to infection (although there are no other signs of that), the antibiotics he's taking, or the disease. They'll do another bone marrow biopsy next Tuesday after he's in the hospital. If they did a biopsy now, the results wouldn't be back by Monday anyway, so they will not hold off on chemo. In the meantime, he got some platelets today to help with clotting at his surgical site.

The other thing going on this week is getting as much of the pre-transplant workup done as possible, since we're not expecting any free time between this round of chemo and the transplant. This morning Leif got a dental exam and a pulmonary function test, both of which look okay, and got some paperwork out of the way. Tomorrow he's getting an ECG and chest Xray. He's also been getting Neupogen shots, to keep his neutrophil count up to prevent infection at the surgical site while it heals.

Our expectation is that Leif will be admitted to the hospital on Monday for chemo and recovery from that, which will take about six weeks, and then immediately begin the transplant process, which will take at least another four weeks.

Done with surgery, went well

Posted by Becky

Leif is out of surgery. I haven't seen him yet, but I spoke to the surgeon. Once he got a good look at what was going on, the plan changed. The possible fissure was not a fissure after all. Instead, the surgeon found a small "zit" type gland/opening, with a fistula (tunnel) going to the former abscess incision site. Rather than put in a Seton drain, he decided to cut the fistula to the outside of Leif's skin, and make a small cut in the muscle that was creating the tighness. He spoke with Dr. Meehan from the operating roomm, and feels that this is a better solution to get Leif ready for the bone marrow transplant. This is a "definitinve" treatment, not a stop-gap measure. Once it has healed, it should not need any further treatment.

This surgery will need at least a week to heal before Leif can get chemo; we'll see this doctor again Monday morning (he's coming in from vacation to see Leif) and again the Monday afterwards. In the meantime, lots of antibiotics and sitz baths to keep the incision clean and healing. The incision did not bleed excessively; Leif didn't need any platelets during the procedure. His platelets are low, but I guess the ones he has are champs.

New surgery today

Posted by Becky
Yesterday's ultrasound did not identify any pus buildup or fistulas in the area of Leif's butt that's been infected. However, the surgeon did see an anal fissure, and he strongly suspects that it has formed a fistula, which is an open tube going away from the fissure toward the former abscess site. This combination is a serious infection risk when Leif gets more chemo.

There isn't time before Leif needs chemotherapy to do the surgery that would allow the fissure to heal up. The colorectal surgeon and transplant specialist discussed the options last night, have decided that the best course of action is to put in a Seton drain. This is a small, soft tube that will loop through the fistula and out of the body. Think of a hoop earring, in a very unglamorous location.

So, today the doctor is putting that in. The surgery is scheduled for about 3:00 today; Leif's in the patient prep room now. We have no word on how long this will delay Leif's next chemo treatment, although he can't wait for long.

Since Leif had to fast today prior to anaesthesia, he stayed up rather late last night eating all the healthy leftovers in the fridge before the midnight deadline, in order to keep his weight and energy levels up. Then he slept for most of this morning. Although the surgery and risk of infection are stressful, to say the least, his energy level on the way into the hospital today was pretty good. He was walking close to his "normal" pace - i.e. faster than me.

Doctor Visits Today

Posted by Becky
Today Leif saw a lot of doctors. And yes, they all wanted to look at his butt. He wore his "It's all fun and games until the flying monkeys attack" t-shirt (thanks, Karen!). By this metric, oncologists have better senses of humor than Infectious Disease or Surgery specialists. On the other hand, maybe that's just because we saw the oncologists later in the day.

We started with Infectious Disease. The chief doc there is overall pleased with how Leif is healing up, but concerned about a "boggy" spot near the former abscess. He'd like to do an ultrasound, and maybe a sigmoidoscopy, to check whether there is a spot of fluid buildup or a fistula (pathway for infection to enter) that could be of concern once Leif starts chemotherapy and his neutrophil levels plummet again.

After a drive-by blood draw in Oncology, we visited the Surgery department where Leif met with a nurse practitioner. She did the requisite surgeon's Q-tip jab in all the tender spots, and told Leif she'd talk with Dr. Meehan. Then I took Leif home for a nap, and late in the afternoon we went back to DHMC to meet with Dr. Meehan. He thinks that Leif is in good enough condition to start the next round of chemotherapy. He's trying to get an ultrasound scheduled for Leif tomorrow, and wants to start chemo as soon as possible after evaluating the results. He's on board with doing a sigmoidoscopy, but doesn't want to wait if it takes too long to schedule.

In general, Leif does not feel like his energy level is as high as it was in October before he went into the hospital for the last stay. But, Dr. Meehan feels that he's strong enough, and there's a need to kick the lymphoma while it's down. So we're still thinking that he'll be admitted for the next round of chemo on either Friday or Monday.

December/January Treatment Plan

Posted by Becky
I apologize for the long silence - Leif and I have been enjoying some much-appreciated time off from hospitals, doctors, and blogging. Leif's been getting a little bit stronger every day, going for a daily 40 minute walk, eating as much good healthy food as he can, and getting plenty of rest. He's been reading and working on a few little projects, but feeling pretty fatigued.

Last Wednesday, we had a meeting with Dr. Meehan, the transplant specialist, about the plans for his upcoming treatment.

The goal is for Leif to get an allogenetic stem cell transplant; that means they will give him a new immune system in the form of bone marrow stem cells from a healthy adult volunteer donor. A donor has been identified and is in the process of going through qualification. They are also contacting additional potential donors as backups. The transplant coordinator has assured us that there are plenty of good (ten-out-of-ten) matches for Leif in the donor database.

Before transplant, though, Dr. Meehan thinks Leif needs some more chemo. He tolerated the most recent chemo regimen, which is nearly transplant-level chemo in terms of its strength, relatively well. The recent biopsy showed that Leif's marrow had a "great" response, but there is still mantle cell lymphoma present, so they'd like to hit it again. 

The CAT scan taken the week previously showed that his spleen and enlarged nodes are about the same size as before. During the physical exam, it looked like his spleen had gotten smaller since the CAT scan.

The plan is to give Leif the same chemo regimen as before. It would be ideal to give him a different regimen, but they're running out of regimens. In Dr. Meehan's experience, patients do relatively well if they're given this regimen twice, so he's comfortable doing it again.

Leif's experience with this chemo regimen is that it's not super bad while he's getting it; the nausea and neurological effects are not as bad as some other regimens he's gotten. The challenge is that afterwards, it takes his body a long time to recover, during which time he's susceptible to infection, bleeding, etc. However, the doctors believe that the benefits of this second round of strong chemo outweigh the risks.

The confounding issue is the wound where Leif had the abscess; they only want to give him this chemo once it's as healed as possible. They'll want to start the chemo as soon as it's safe to do so, though. Leif has a meeting with three sets of doctors (Infectious Disease, Surgery, and Hematology Oncology) on Wednesday, when they will evaluate how he looks and decide when to admit him for the next chemo round, possibly by the end of this week. He's still taking antibiotics and cleaning the incision twice a day with a warm epsom-salts bath. A surgeon checked it on Friday and was pleased with how it looks. He also gave Leif a nice compliment. Leif commented that he needs the abscess to heal because he's going to be getting more chemo soon, and the surgeon did a double-take and said, "I didn't know you had cancer - I thought you were just going for the bald look!" I appreciate that Leif is looking pretty good, although I think that doctor should spend a little more time with patients' charts before seeing them.

After the next round of chemo, Leif will get the transplant. Timing will depend on how the next round of chemo goes. If things are stable and they can give Leif a 2-week mental-health break before the transplant, they will. But, they won't compromise his outcome to do so; so if the next hospital stay runs long, Leif may wind up staying as an inpatient until after the transplant.

There are two types of allogenetic transplants that they will choose between, when they review how Leif is doing after this next chemo round.

• A full transplant is more challenging up-front. If they go that route, they'll give Leif enough chemotherapy and radiation to completely obliterate his bone marrow, then infuse the donor cells. The chemo and radiation have some intense side effects including mucositis (injury to the inside of his GI tract, basically; sometimes this is so severe that they need to administer IV hydration), high risk for infection, and the need for platelet and blood transfusions. The entire transplant procedure will involve about 4 weeks in the hospital.
• A reduced intensity transplant (also called a mini transplant) involves gentler chemotherapy and radiation to start with, just enough to suppress his immune system. Then they infuse the donor cells, and basically let the donor immune system do a cleanup of his remaining immune cells. They will choose this option if they're concerned about Leif's ability to tolerate the severe chemo involved in a full transplant. The chemo and radiation for a reduced-intensity transplant are so gentle that they are sometimes given during outpatient visits instead of in the hospital. The donor stem cells take over the bone marrow space, and doctors rely on the new immune system to take out the remaining cancer cells via what is called a graft vs. disease effect. A healthy immune system normally recognizes cancer cells and destroys them. So in a reduced-intensity transplant, instead of taking out the cancer with chemotherapy and "rescuing" the patient with a donor immune system, they give the patient a donor immune system and rely on it to take out the cancer.

Again, they will make a decision between these options after the next round of chemotherapy, based on which approach has the best risk vs. beneft ratio based on Leif's health at that time.

After meeting with Dr. Meehan, we met with the transplant coordinator again. She updated us on the donor status, and told us that they're rescheduling stem cell collection for the early/mid January timeframe.

She gave us a little information about what to expect from the transplant. We're not looking too far ahead into the future, since we don't want to get overwhelmed. But, the doctors recommend that we stay in the area for the first 100 days post-transplant. The reason is that after Leif gets out of the hospital, the transplant team will want to see him for a full day once a week during that time period. If we go back to Maine, we'd be looking at a full day in the hospital, with 3.5 hours of driving time (early and late, through the mountains, in the winter) on each end, every week. We think that it will be healthier to stay here rather than doing all that driving during a time when Leif will probably not be feeling great. At any rate, we'll stay here at least until mid-March, and then start thinking about transitioning home (or, rather, to Brunswick) depending on how Leif is doing at that time.