Always a difficult patient

Yesterday was another one of those too-long days at the hospital.

We left home at 10 am to get my PICC line swapped out for the kind that Froedtert uses. Because this was a swap and not a new placement, it was supposed to be a quick process. They run a wire through the old PICC line, pull it out, then guide the new PICC line into place over the wire. Half an hour tops. But apparently my body formed a stenosis around the PICC line and they were at first unable to slide the new PICC line through my vein. They have several layers of interventions and luckily mine worked with only the first level (ie: use a stiffer line to push through), but it seems to always be something with me! Add in the fact that my platelets were low (didn't know how low until after the procedure) and then I wouldn't stop bleeding from the placement and stitching, and the half hour procedure was an hour. But I do now have a shiny new PICC line! (No photos since I still have compression bandages around it.)

The one difference I can definitely say between Froedtert and St. Luke's is the waiting time. Today I arrived early for my labs and still waited 55 minutes past my appointment time to get in. I'm hoping that, with my future appointments mostly being in the morning, they won't be quite so far behind.

After labs, I have to see a nurse to interpret the lab results, determine if I need a transfusion, and generally check in with me on symptoms, etc. But I'm not officially transferred from Dr. Hamadani (transplant doctor) to Dr. Atallah (oncologist) yet, so I see nurses with Dr. Hamadani, who can't really answer my specific questions on chemo and side effects. However, I was able to move up my initial appointment with Dr. Atallah to next Tuesday (1/7). This is good because it will be before I'm due to start the next round of Vidaza.

My prescription for Venclexta finally cleared all the insurance hurdles and arrived yesterday, along with a delightful care package from the pharmacy. It includes such fun things as a giant water bottle to remind me how much water I need to drink daily while taking this med to protect my kidneys, some anti-nausea candies, Immodium, and lots of reading material. Of course, as soon as this arrived, I double-checked with Dr. Attalah's office and he doesn't want me to start taking it until after he's seen me! So weeks of pushing to even get the meds and now I can't start.

Unsurprisingly, my labs showed that my platelets had fallen below the 10K threshold (they were 7K) and so I needed a platelet transfusion. Unfortunately, the soonest opening to get the platelets was at 4:30--two hours later. This was not enough time to go home, but a big gap of time between appointments. I decided to sit and wait, hoping that a slot would open up sooner for the transfusion. It did--at a little after 4:00.

Every time I get blood products I'm asked the same question, "Have you ever had a reaction to receiving blood products?" And every time I answer, "Not yet!" and chuckle. Well, I can no longer say that. Last night, after a long, exhausting day of appointments, while receiving platelets, I said to Greg, "My back is kind of itchy and feels really hot. Can you look at it?" and he did, and saw nothing. A little while later, my chest also felt hot and itchy--still nothing. Finally I decided I was going to let the nurse know that I wasn't feeling quite right and by then hives had popped up all over. WOW! If you want to see nurses come running, have a reaction to an infusion! Five nurses, grabbing reaction kits, pushing Benadryl and hydrocortisone IV, calling supervisors...

In the end, the meds made the hives go down. Although I haven't seen him yet, Dr. Atallah took the nurse's call and agreed to hold off on getting more platelets last night (I got about half the bag in), and I was able to go home. Even though it was a relatively low dose of Benadryl, I only managed to eat dinner, nap, play a few games, and then sleep until 8:00 this morning. The biggest annoyance, I think, is that they'll have to pre-medicate me every time I need platelets going forward. And seeing how Benadryl affects me, my plan of gradually being able to drive myself to appointments may not work out. :(  Ugh! I am looking forward to meeting with Dr. Atallah to see how long he anticipates that I'll have such low counts and need to keep getting frequent transfusions. 

Yesterday also ended my wonderful almost-two-weeks of full family time. Ash went back to school. Travis leaves today. Cara will likely leave this weekend. And then Greg goes back the week of the 13th. It has been amazing to spend so much time with my favorite people in the world. We've cooked, we've played games--so many games. We've watched silly TV. We've laughed. I've stored up so much good to get me through the cold and ickiness that will likely be January and February. I feel lucky beyond measure.

Whiplash!

Just when you think you know the plan, the plan changes.

As I'd written earlier, my breast cancer oncologist referred me to a leukemia specialist in an out of network hospital (Froedtert, for those in the area), not knowing that any other hospital system even offered treatment for leukemia. And lucky for me, through connections, I found excellent providers at Aurora St. Luke's. While there, I also learned that St. Luke's has been doing autologous bone marrow transplants (using your own bone marrow; usually for lymphoma) for years, but that they don't currently do allogenic bone marrow transplants (from a donor; to treat leukemia and myelodysplastic syndromes). However, with two new doctors on staff, who came from institutions where they did allogenic transplants, they are currently training nurses and will start doing allogenics in January.

However, as I began to connect with others in the area who are leukemia survivors, they all received treatment at Froedtert (obviously, as it's the only one in the area). And all raved and raved about Froedtert and pushed me to seek treatment there. And a few encouraged me to reach out to my insurance company to see if there was somewhere I could go where I wouldn't be one of the first patients receiving an allogenic transplant. I knew that my insurance would likely cover UW in Madison, but I just didn't know if it was worth a 90 minute drive for care. After all, being one of the first patients would certainly ensure a lot of observation, right?

Still, on December 19th, I decided to call my insurance company and see about maybe getting a second opinion from UW or another hospital that WAS in network and had more experience with allogenic transplant.

Unlike my first call in November where everyone hemmed and hawed and didn't think they could get me any information for 72 hours or more, this time I was connected with a Cancer Care Specialist familiar with my case, who was adamant that, with my particularly difficult type of leukemia, I needed to be seen at a Center of Excellence (COE) Hospital. They would pay for me to travel to any COE hospital in the country, but the two closest were UW in Madison, and the Mayo Clinic in Rochester. I pushed back and asked why I couldn't go to Froedtert, emphasizing how disruptive it would be for my family if I were treated or hospitalized that far away. The Cancer Care Specialist, in turn, reminded me that it was "only 90 minutes away." She said she would check with her leukemia specialist and get back to me.

Three hours later I got a call back that they learned that Froedtert had better transplant outcomes than either of the COE hospitals they'd suggested.  They were recommending that I get my bone marrow transplant at Froedtert, and they actually wanted me to immediately switch care to Froedtert and were looking into how to get Froedtert added to their Center of Excellence hospitals, as they were unsure why they weren't already. EEK!

And then there was a lot of waiting and letting things happen behind the scenes.

Yesterday I had an appointment with Dr. Hamadani who is the director of Froedtert's bone marrow transplant program. He was unaware that my insurance wanted me to transfer all care to Froedtert, so was only prepared to talk about the transplant being done at Froedtert. When I explained that I would be transferring all care, per my insurance, he said he would not be my oncologist (as he doesn't specialize in leukemia), but he would see if Dr. Atallah would see me. (Dr. Atallah, incidentally, is the doctor that all the local Froedtert patients I spoke with saw, and who they credit with saving their lives.)

I also met with the transplant coordinators and learned that Froedtert matches on more proteins/HLAs than St. Luke's does, so if my brother isn't a match, they'll have me re-do the cheek swab for more specific donor matching.

I had blood drawn and learned that Froedtert uses a different kind of picc line that only needs to be flushed weekly, so if care transfers there, I'd either need to learn to flush my own picc line or (their preference) have my current one replaced.

And my labs showed that I needed red blood cells (hemoglobin 7.0), so I was able to get that done at Froedtert instead of having to be driven across town to St. Luke's for the transfusion. So many new processes and procedures. It's interesting to see how a different hospital system does things. And another 8 hour day at a hospital.

Today was a morning of phone calls.

1.   I *still* have not received my mail order chemo (Venetoclax), although I should have started on it over a week ago. I am NOT impressed with the specialty pharmacy who didn't call St. Luke's to clarify the dosage (first holdup), or my insurance company to clarify coverage (second holdup), or me to get billing and delivery information (third holdup). After over an hour on the phone answering their annoying questions about how I was feeling about my diagnosis, they finally released the prescription to be delivered "Thursday or maybe Friday." Of course as soon as I learned this, another glitch happened (see below in #4).

2.    I heard back from Froedtert's transplant coordinator. Apparently my brother is NOT a match for me. I'm not sure why no one had told us this yet, but now we know. As mentioned above, I'll do another cheek swab to check for more features to match on. The coordinator has utmost confidence that I will get an unrelated donor match. A group of friends is currently working on setting up a Be The Match Event (bone marrow drive) in Milwaukee. When details on that are solidified, I will share them. Out-of-towners will be able to participate by mail, too. (I am moved to tears every time I think about this.)

3.   St. Luke's called me to see if I was changing providers or not. This was a really difficult phone call for me, as I have no complaints about my care at St. Luke's and all of the providers (doctors, NPs, nurses, techs, therapists) have been absolutely amazing. I know that I am not "firing" them, but am following my insurance company's preference, and ensuring that I get the best possible outcomes with the most experienced team. Still, it felt cruddy to tell them that I was moving to Froedtert.

4.   Froedtert made appointments for me to get my picc line swapped out (Thursday), to set up bi-weekly lab and nurse visits, and to get established with Dr. Atallah. But my initial appointment with Dr. Atallah is scheduled for the day after I am due to start round two of the Vidaza infusions. So I am trying to get that figured out, as I don't want to delay treatment. Froedtert wasn't aware of the start date for my next round, and Dr. Atallah is out today and tomorrow, so hopefully on Thursday that will be worked out. While making these calls, I also learned that Froedtert follows a different procedure to start taking Vinetoclax (including very close watching), and was informed that I should NOT start taking it until Dr. Atallah could review my file and guide me.

5. Froedtert does not routinely schedule visits with cardio-oncology (St. Luke's is well known for its heart care and does things more proactively) so I will keep my appointment for a repeat echocardiogram on Friday at St. Luke's. If that shows no damage, I believe I will only be followed if symptoms appear, but if it does show damage, then I'll need to figure out how to merge two hospital system specialists.

And I think that's it. It's so bizarre to me how there can be so much waiting and not doing a lot, and then BAM! everything happens in a matter of hours.

One round in

Today marks one month since this craziness started. Today was also a crazy long day of appointments at St. Luke's (Greg said it should count as an in-patient day since it was so long), but the best part is that today was day 7 of my first round of the Vidaza chemo. Although I still have frequent appointments (mostly for CBC blood tests), it won't be every single day.

Today started with an appointment in cardio-oncology. Since I have been on three known cardio-toxic meds (Adriamycin, Herceptin, and now Idarubacin), they will follow me closely to see if I look like I'm showing signs of heart failure. I had an echocardiogram done as my baseline before the Idarubacin, and everything looked good at that point (EF 57% and GLS -21, if you are interested in reading what the measurements mean).

So the plan is for me to have a repeat echocardiogram next week.
If there are no changes, then I'll repeat echos in six months and a year, and then annually for five years after treatment (with Idarubacin) is complete.

If there are small changes, then I will continue with echos every six months for a longer time and they will consider cardio-protective medications (ie: blood pressure meds)

If there are big changes, I'll need to do meds and be followed every three months.

The other thing we discussed relates to my QT interval. Three of the meds I'm currently on (fluconazole, the anti-fungal; levofloxacin, the antibiotic; and Zofran, the anti-nausea med) all can interact and impact the QT interval, which can cause an arrhythmia. I will have regular labs drawn to see if my salts are balanced, and I have to watch my symptoms, which are (of course) the same symptoms that are caused by my chemo and/or leukemia/low blood counts. Things like lightheadedness, shortness of breath, racing heart, fatigue.

BUT I did get good news--that I'm encouraged to keep exercising (biking!) and to just listen to my body and rest when it tells me to rest. Greg and I went biking yesterday (so he could try out his new fat tire bike) and a small hill was really, really tough. I had to stop at the top and catch my breath and slow my heart rate. But that's okay--and really due to the fact that my hemoglobin is still very low.

Next stop was labs. My WBCs are still at 0.8 (no neutrophil measures); hemoglobin still hovering around 8 (actually 7.8), and platelets down to 7K.

Then I met with Dr. Sana. He was surprised that I have not yet been able to start the Venetoclax, but it comes from a specialty pharmacy (in Michigan), and they were still working out the dosage earlier this week. Apparently the fluconazole that I have to take is a CYP 3A inhibitor and CYP 3A plays a major role in Venetoclax elimination, so if the two are given together, more Venetoclax is available and the dosage needs to be reduced to avoid over-dosing.

He also clarified a few things going forward.
1. He doesn't plan to do another bone marrow biopsy until 2-3 cycles of the Vidaza are completed.
2. I will be seen 3x/week between the Vidaza infusions for blood work and to determine if I will need blood or platelets.
3. I may not see a rebound in my blood cell counts ("hematological recovery") until three cycles of the chemo is completed.

After that appointment, I got my 7th Vidaza infusion in this first round. This also marks the end (fingers crossed) of needing Zofran, which makes me feel kind of fuzzy, until the next round of Vidaza at least.

And then I got platelets.

It was a long day, and I'm exhausted, but I'm pretty happy to not have to go back in until Monday, I hope!

Home Sweet Home

I realized that not everyone is on Facebook and so not everyone knew that I had, in fact, made it home. Friday, after my second infusion of the Vidaza (chemo), I was released from the hospital. I have a long list of potential things that can happen (fever, allergic stuff, etc.) and a huge bunch of meds to take, but I'm home!

The Vidaza is administered IV infusion for seven days in a row, and then 21 days off. After the first two in the hospital, I got my second two at the Vince Lombardi Cancer Center (also in the hospital, but as an outpatient), and today was #5 in the infusion center in Medical Office Building 3 on the 9th floor. I'll have #6 tomorrow, take Xmas day off, and then #7 on the 26th.

I also learned that my insurance approved me to take the oral chemo Venetoclax (one big hurdle), and it will be shipped by specialty pharmacy or something. But (of course) there was an issue because I should be taking allopurinol (to protect my kidneys from tumor lysis syndrome) but the allopurinol caused the nasty red rash on my stomach, and apparently a skin rash is the first sign that it could be anaphylactic, so no more allopurinol for me. The alternative med (uloric) has been associated with an increase in heart issues, and I'm on so many cardiotoxic meds already that they've decided it is safer to monitor my levels of uric acid and NOT give me uloric unless it's needed.

The other thing we're waiting on is what dose level of Venetoclax I will receive. Apparently it interacts with Fluconazole (the anti-fungal I need since I have essentially no immune system), and so I may need to do a dose-reduction. Hopefully that will all be figured out and the meds will be ordered, and I can start on that soon. I was happy to hear that Venetoclax carries a "low risk of nausea" and so I am hopeful that I can get by without taking Zofran (which I get before the Vidaza). It's a crazy string of meds that lead to other meds and all sorts of delightful side effects.

But I have been adjusting pretty well to being out of the hospital after 21 days (22 if you count the first night I was admitted). It was very odd when I first got home. Though it was nice to be home, it didn't really feel like "home" because I'd been in the hospital for so long. I'm happy to say that I was able to get over that relatively quickly. It's the little things--like the first night I was home, I minced an onion for a recipe. On Sunday I actually drove to chemo (Cara drove me home because the anti-nausea meds make me kind of sleepy and dizzy). I have been walking, and yesterday I even went for a five mile bike ride on my fat tire bike!

Cara & Travis are home for the break between semesters, and Ash is also off. It's been wonderful and cozy to be home playing games and cooking and being kind of lazy, actually.

And my white blood cells are creeping up very, very slowly. Yesterday they were able to measure my neutrophils (0.1) but today, although my total WBCs were higher, they didn't check the neutrophils. Maybe tomorrow...

I wish everyone a wonderful holiday--whatever you celebrate(d). The days are getting longer now--which will take forever to seem like a difference, but mentally it's nice to know. And 50 degrees in December? I certainly can't complain--especially when it includes lots of sunshine. So many things to be thankful for.

Another stop on the bullet train

Last time I blogged, the plan was to get my neutrophils up (usually happens on about day 21; today is day 20) so I can be hit with the next regimen of chemo. (Thank you for positive neutrophil vibes--unfortunately they're still not back.)

Yesterday on rounds, the doctor said that sometimes with leukemia the red blood cells and platelets will rebound (mine are doing that, slowly and surely), but the white blood cells may not. This is particularly true when you initially present with a low white blood cell count and not a high one. (Also me.) And that if my neutrophils didn't rebound by this weekend, they would start on the new regimen while I was still in-patient, which would allow me to be watched closely for reactions and adverse effects for the first two days of treatment. They would then, if I was stable, allow me to go home in time for Christmas (!!!!!).

This morning on rounds, the doctor and NPs came in and the first thing they said was, "want to get started on Vidaza today?" I gave a resounding "yes" as the sooner I start, the sooner I'm fighting the leukemic bone marrow and the sooner I'm done with round one and (hopefully) the sooner I can go home. Dr. Sana said if I did okay today and tomorrow I could potentially be released tomorrow (Friday) night.

I know that things can still happen--I may react poorly to the chemo, spike a fever, have other things pop up... But the idea that I might be home tomorrow--TOMORROW--has made today a phenomenal day. And I've been quite bossy, saddling my family with a list of cleaning and shopping chores to prepare for me coming home.

My fingers are so tightly crossed that this goes as planned and I need only sleep one more night in this hospital bed. I'm almost afraid to say it out loud.

p.s. I haven't needed blood since December 11th or platelets since December 15th. I hope I keep holding my own, although I'm sure the new chemo will knock me down again. If I kept track of your postings on social media, I'm pretty close to having replenished what I used. At least of the blood--platelets are much harder. Thank you, thank you, thank you!

Not the results I'd hoped for.

After days (that seemed like weeks) of waiting, the results of my bone marrow biopsy and the final genetic testing results (next gen sequencing) of my leukemia both came in on Tuesday afternoon.

The first hope, that the bone marrow would be hypoplastic ("empty") and that the blasts would be under 5%, was not met. I have between 15-20% blasts still in my marrow. I had started with 40%.

This was not completely unexpected, as some of the genetic information came out over the last few days. If what was suspected was true, the 7+3 chemo was not a good match for my particular leukemia. While this is frustrating, I was in a bad enough condition upon admission that *something* had to be done, and so it wasn't a terrible idea to start with the 7+3. (Apparently some cancer hospitals do hold off on any treatment until they get the results from the genetic testing.)

Leukemia is not staged like other cancers. Instead, one of the ways it's grouped is by the favorability of the outcome. Best is "favorable;" worst is "unfavorable" or "adverse;" and in between is intermediate. These are the best guesses as to whether the leukemia will respond to chemo and go into remission. And remission must be obtained before a bone marrow transplant is attempted. (If you leave leukemic bone marrow and put new bone marrow in, they'll compete and the leukemic bone marrow will eventually win.)

My leukemia, unfortunately, has a lot of unfavorable things going for it.
1. Being treatment-associated AML (t-AML) automatically makes it less favorable
2. Having greater than three chromosomal mutations is unfavorable; my leukemia has fourteen(!)
3. One particular gene deletion is highly unfavorable--p53 (involved in signaling for such important things as cell cycle arrest, apoptosis/cell death, and DNA repair). And I have only one copy of p53.

But we have a plan to move forward, and it takes into account the p53 aspect.

There are two chemotherapies that are recently out of Stage 2 Clinical Trial (I think... maybe only one, or the combo?), as tested on elderly patients. If you're into that kind of thing, I think this is the paper my doctor referred to. Although I did not achieve complete remission with the first chemo regimen, this is not a second attempt (ie: failure of first attempt) but a re-induction--or a second first attempt.

I will receive a 7 day infusion of Vidaza (azacitidine), separated by 21 "rest" days and will get that 2-3 times. I will also take a daily oral chemo called Venclexta (venetoclax). The hope is that this regimen will put me into remission. The best part in my mind right now is that they are both done as outpatient treatments.

(For those who are fascinated with the genetic components, Vidaza is a hypermethylating agent--which would turn on the defective p53 and Venetoclax blocks the BCL2 protein, which would allow apoptosis.)

Before I can go home, and before I am considered recovered enough from the first round of chemo, I need to get my neutrophils up to 0.5.  They're currently too low to measure, although my total white blood cell count is slowly increasing, and neutrophils are a subset of white blood cells, so I'm hoping that they, too, will soon start to inch up.

Time to switch that positive energy into making my neutrophils rebound so I can get home and so I can start on the new chemo.

It's a plan and I always do much better with a plan.

And I need to get home to this:

The plan, clarified

Monday I finally got to meet the new chair of the St. Luke's Hematological Oncology group: Dr. Medlin. I have heard so much good about him from all the staff. And he's great. Down-to-earth, answers questions at the level I've asked (he asked my background to clarify), positive, confident.

We spent time talking about the plan for my treatment, which didn't change from what others had told me, but which was clarified somewhat.

We started with induction chemo to get my body to go into remission. We will know if that was achieved (or at least the first step toward achieving it) when we get the results from Friday's bone marrow biopsy. So yes, the bone marrow biopsy will be done on Friday. Results will take a "few days." There are two goals:

1. The bone marrow is essentially empty. We want less than 5% of cells within the bone marrow, which indicates that the chemo cleaned it all out.
2. Of the cells left in the bone marrow, less than 5% of them are blasts (cancerous cells).

If both of these things are achieved, then stage one was effective and as soon as I can maintain counts and fluids and everything enough that I need only be seen on an outpatient basis, I can go home for a few weeks.

If either of these things are not achieved, then stage one was not effective and we need to do another, different round of induction chemo. This is the stage that makes my heart race. This would prevent me from being home for Christmas, and it would certainly be a "harder" chemo on my body, plus just an addition chemo in general. But Dr. Medlin did a great job of explaining why this is an important step and why, if this happens, it is not the worst possible thing. Previously, treatment involved this 7+3 chemo, then the rounds that follow (I'll get into that shortly), but they were not able to determine if the chemo was actually effective. So you'd go through the whole process and not even have received remission, which meant that it was not going to be effective. Adding this step, and the sensitivity that is now achievable, means that more people are in true remission and have better outcomes. I like better outcomes.

Next step, once that first round of remission is achieved, is to do four rounds of maintenance/consolidation. Dr. Medlin explained that, even when there may be no evidence of cancer cells, there are still likely as many as 10^12 cells in the body (the "undetectable level"). Much like how many breast or other solid tumor cancer patients may have surgery with clean margins and clean nodes, but still have chemo after, that is the purpose of the chemo.

And then we move on to the bone marrow transplant.  There are only three options for an allogenic donor:

1. A full-match sibling, matching on 6 of 6 Human Leucocyte Antigens (HLAs)
2. An unrelated perfect donor, matching on 10 of 10 HLAs
3. A haplo-identical donor, like a child, matching on 5 of 10 HLAs

The reason you can use a half match with only 5 of 10 is that you'd only use a related haplo donor, and there are many other factors that aren't tested/matched on, but are also important and helpful in minimizing the likelihood and severity of graft vs. host disease (GVHD). These factors tend to clump together in familial lines, so while the third option is riskier, it can be done.

I'm trying not to think about the fact that finding a donor is an "if" and not necessarily a "when." There are certainly many people who do not find a donor by any of those three means. But I'm also hoping that karma, and all my wonderful loved ones who have recently signed up to "Be The Match" have someone or else on the other side of the world with just as many amazing loved ones signing up for them and somehow we'll all end up matched. 

As far as preparation for a bone marrow transplant, it is another chemo regimen of 5-7 days. Full body radiation is not usually used in AML (more often in ALL), so probably not necessary. And then the transplant itself is relatively simple--just like a blood transfusion. The hardest/worst part is waiting to see if it takes and how bad the GVHD is. I have decided not to look too far into that at this point.

---------

Other than that, I'm just keeping on here in Nadir-land. Still having the lovely GI issues. My new antibiotic (meropenen, since I developed that rash in response to the cephapine) seems to give me a headache. At least, both times I've received it, I've developed a headache at the base of my skull within a few minutes of the IV beginning. Last night I slept through most of it, but this morning it is still with me. Even a visit from massage therapy and some essential oils only slightly tamed it. 

With the new blood thresholds, I needed both blood and platelets last night, which made for a long night with all the vitals checks that they do before, during and after receiving blood product. This morning my counts were sufficient enough that I didn't need any product (WBC: 0.3; HGB: 8.3; PLT: 71K). Next draw is at 10:00 am and I'm crossing fingers that I'm holding onto things well enough to not need more. I don't know how long I'll be at these higher thresholds. Hopefully my own cells will start coming back soon and that will both decrease the need for the transfusions and prepare me for possible release from the hospital.

Whether it's the interruptions last night, or day 12 post-chemo (3 of 5 Nadir), I'm thinking I might actually need a morning nap today. I'm pretty happy that it's another beautifully sunny day. I hear it's cold outside, but I wouldn't know that from my room. :)