Day +111

Well, it's not GOOD news, but it's not the worst news, and (as usual) once I have a plan, no matter how tentative, I feel better emotionally. 

Blood counts:

WBC: 0.3 (remains so low); HGB 7.3 (dropping); PLT: 56K (woot!)

We knew the news wasn't good by the look on Dr. Atallah's face when he came into the room. Greg immediately pulled his chair closer to me. I think both of us were thinking, "plan for hospice." Luckily we're not there yet.

However, as I had expected, this regimen of chemo is not working on my leukemia. In June, I relapsed with 0.6% blasts in my marrow. Last month they were up to 5.6%, and this month I jumped to 17.1%. Definitely not working.

So the BEST case scenario is a possible clinical trial. I'd mentioned it twice before. It was in early stages back in April when I first fell out of remission pre-transplant. At that point, the trial was Phase One, lower dose. Then, when I fell out of remission post-transplant, it was mentioned to me, but was not currently enrolling. Now the trial is in the ramp-up phase, going from 0.75 ug to 1.0 ug. They FDA has apparently given oral approval, but not yet written approval, which could take a few weeks. Dr. Atallah said that they have seen "very promising results" at the lower dose. He also said that a wait of two weeks might be emotionally concerning, but is not medically concerning.

As a reminder, the clinical trial combines CLAG-M (which is the standard of care for me at this stage) with lintuzimab. CLAG-M is cladribine, cytarabine and filgrastim with mitoxantrone. Lintuzimab is an anti-CD33 antibody with a radioactive portion attached. Some AML cells express CD33, and the lintuzimab seeks them out and destroys them (cool, right?). Last go-around we didn't know if my leukemic cells expressed CD33, but today Dr. Atallah said that they express CD33 "very strongly." This is definitely good. This treatment needs to be done in-patient. If you click on the link above, you'll get specifics, but the treatment itself is 5 days, but then a total of 3-4 weeks (or more) in the hospital because it REALLY knocks down blood counts and a patient is extremely transfusion-dependent and neutropenic, much like my initial 7+3 regimen back in November.

Right now that is my utmost hope: getting into the CLAG-M + lintuzimab clinical trial. I welcome any positive thoughts that way.

Unfortunately I have two other issues that I'm dealing with, which could possibly prohibit me from qualifying for the trial.

Last week I noticed what I initially thought were bug bites on my calves. I've gotten more, but they are strange. They appear bright red, but the center of them is a different texture. And after a few days, the top layer of skin just peels off and leaves me with a slightly-darker skin tone in the shape of the spot. Dr. Atallah is sending me for a skin biopsy. It could be leukemia cutis, which would only tell us that I have leukemia, and we already know that! It could also be a form of graft vs. host disease. Leukemia cutis wouldn't disqualify me from the trial--I'm not sure if treatment for GVHD would or not.

The scarier symptom is that I've been getting shocks down my legs for the last week or so. At first it only happened when I was biking or walking but now it sometimes does it when I'm sitting. This could be a sign that the leukemia has travelled to my spinal fluid. Dr. Atallah quickly reassured me that there were treatments if that were the case, but before I could even ask, he said that it might disqualify me from the clinical trial.

So tomorrow at 7:00 am I have labs, followed by a blood transfusion, and then at 11:00 a lumbar puncture to check for the presence of leukemia in my spinal fluid. I'm not sure how long it'll take to get those results, but I'll let everyone know when I know.

If, for whatever reason, I'm not eligible for the clinical trial, there are still options. Essentially, I'd drop down to "just" CLAG-M. This would still be in-patient for 3-4 weeks.

So there's a lot to unpack. There's a lot of very scary stuff. But I guess my prime take-aways are thus:

1. I appreciate positive thoughts for a clean (negative) lumbar puncture tomorrow

2. I appreciate finger crossings and hopes that I am able to get into the clinical trial 

3. I am thankful that I will get at least a little time at home, without any chemo, in hopes that my blood counts can recover before the next onslaught

As an add-on, I really need to figure out a way to put on weight and get stronger again. This month of chemo and leukemia ickies have made me extremely weak. That's no way to fight this beast or make it through another rough chemo regimen. Feel free to remind me (via text or messenger) to eat something or do some squats or wall pushups!

Thank you. Love you all, and know that I appreciate all the positive vibes you'll be sending my way for this next bout. XOXOXO

Day +104

Thank you to everyone who reached out to me in one way or the other over the last week or so. I realize it's been a long time since I've blogged. I have had a blog post partially-written for about a week, but just haven't had the desire to finish it. But I'll do it today! :)

Even though I'm not on the traditional path as most BMT patients, I had wanted to post on what is still the 100th day after my transplant. That was last Thursday. But when the day came, I just wasn't feeling it. No celebrations, not particularly good news, nothing worth posting. But I *am* on the other side of those hundred days, and I'm still alive, so that's something! 

This chemo (Decitabine + Venclexta) is supposed to be a milder chemo, but it really knocks me out. The week that I have infusions is actually pretty good (other than the annoyance of hospital trips and infusions and waiting). The weekend after I feel a little queasy and not quite myself, but that's not terrible. Then I have a few decent days before my counts start falling. And this nadir seems to last a full two weeks. I'm right in the midst of it now and if this second cycle follows the pattern of the first, I should start creeping out in a day or two.

I have essentially no WBC (ranged from 0.2-0.4; currently 0.2). My hemoglobin has been crappy (7.4-8.8; currently 7.4). My platelets have dropped since my last post (50K - 8K; currently 19K). About the best thing I can say is that (so far) I've needed fewer transfusions this cycle than last cycle, but I've been close.

I also wanted to share information from my last appointment with Dr. Atallah a week ago. Since my WBC counts are so low, they are unable to check my peripheral blast percentage and we won't know if this chemo is effective until my next bone marrow biopsy, which is this Wednesday. I will get results from the biopsy at my next appointment on Monday the 24th. The absolute BEST case scenario is that my biopsy will show that my marrow is clean (send those vibes!). If my marrow is clean and my counts have rebounded some, I'll start the next round of Decitabine that day. If my marrow is clean and my counts are still low, I'll take a week off to let my counts rebound and continue with Decitabine treatment. But if there's still stuff in my marrow (and let's be honest--this is probably the most-likely thing), then we will talk about clinical trials. 

After that discussion, Dr. Atallah said, "now we have to talk a bit about something else." My heart dropped. And he continued, "I've heard that you have concerns about people not wearing masks in the cancer center." <insert sigh of relief> To make a long story short, he pointed out that some patients (like lung cancer patients) may not be able to wear masks and that is between the patient and their doctor. (I did ask if they couldn't immediately put those patients in a room instead of the open lab and waiting room. He said he'd look into it.) I also said it wasn't just the patients, but caregivers. I said that I am an outspoken person and I had a hard time saying anything and that I finally said something for all the other patients who were also being put at risk. He asked me what they could do to make me more comfortable. My eyes welled with tears, and I said I just didn't know. He asked if I would feel better going to a local clinic for blood draws and I said that I knew Mequon didn't draw from a PICC line. He asked how inconvenient New Berlin would be for me. My amazingly intelligent, busy, kind oncologist then called up Google maps on his computer to see how far of a drive it would be. It turns out that the New Berlin office is closed in the interim. But then he asked about Drexel Square. He told me they can do labs and all treatment except for the doctor appointments there. And I clarified that he wasn't going to drop me as a patient. He laughed. Then he called to have my future lab appointments changed to Drexel Square, effective immediately. And he thanked me for looking out for all their patients.

Last Wednesday was my first trip to the Drexel Square Froedtert Clinical Cancer Center. Travis drove me and was allowed into the waiting room, but not back into a room with me. They stated their policy that only patients are allowed (also the main campus's policy, but I know they've given up questioning guests and almost everyone there has a guest), and that they'd allow Travis that day, but not in the future. The first visit I needed platelets, and it turned into a long day because they had to get the platelets from Versiti and had a new courier who took over two hours to deliver them. The second visit I was dropped off and had to wait 25 minutes for Greg to pick me up. I asked a nurse if there was a more private place I could wait than in the waiting room, and she gave me a chemo bay chair (curtained off). Today I didn't even sit in the waiting room--the same nurse called me immediately back to wait in a chemo bay for my lab results. With very little exception (one man in the waiting room my second day with his nose out), everyone has been good about masking. And the waits are shorter than my extended drive time. It's just a lot less chaotic. Unfortunately, besides the delayed courier thing with platelets, they cannot do red blood cells same-day, so if/when I need those I'll either have to come back the next day or head to the main hospital to get them that day. And my biopsy and appointments with Dr. Atallah will of course be at the main hospital. Still, it is so nice to not be as freaked out over germs!

I did something that I hope I won't regret: got the whole family (except Cara) haircuts. My friend Denisa just started at a new salon and she and a coworker came in an hour early, masked, and didn't let anyone else in the shop. We all wore double masks (surgical with cloth over the top). Ash, Greg & Travis had been good sports about letting me cut their hair, but they all look a whole lot better now! As for me, I got two wigs trimmed/styled. I didn't realize that was something you were supposed to do! Maybe why I hated my last one so much? Anyway, all of this is to prepare for having family photos done later this month. Please cross fingers that it doesn't rain on August 27th since we're (obviously) doing outdoor photos. And Cara will be briefly in town.

I'm not completely sold on either of them, but it would be nice to have photos w/o sun glaring off my bald head!

I have continued to (slowly) bike and walk. I'd worked my way back up to a 13 mile ride, but this week (nadir) I'm more of a 2 mile ride person. Luckily I have people who will ride with me, no matter how short of a distance or slow of a pace.

Other than that, I'm just taking it a day at a time. That part is still a struggle for me, but I guess I'm getting used to it. I probably won't blog again until sometime next week (may not be right away on Monday, depending on what we know). Feel free to send positive bone marrow thoughts (which is actually negative, as in no leukemic cells or blasts) on Wednesday at 9:00 am during my biopsy.

Day +61

I had a good appointment with the PA today. Not necessarily good in terms of news, but good in terms of me feeling better about things and getting some clarification. Katie also reminded me that I can call at any time with questions. I know that, but it really makes a big difference for a provider to tell a patient that. I felt listened to, and like my concerns were addressed very well.

My blood counts have tanked.
WBC: 0.9 (normal 3.9-11.2)
ANC: 0.52 (normal 1.9-7.8)
HGB: 8.3 (normal 11.3-15.1)
PLT: 13K (normal 165K-366K)
But this is expected, as I just finished a round of chemo. (Hooray! I finished a round of chemo!) Post-BMT the thresholds are different for transfusion, so I don't need platelets until 10K and RBC till 7.5. But my counts are close enough that I get to go in for labs TWICE more this week (Wednesday and Friday).

My blood chemistries are great (despite not being able to eat or drink much all weekend). My chimerism results from last month showed that (a month ago) my blood was 91% donor blood (CD33+) and 86% donor immune system (CD3+). I think those are "good" but not necessarily "great" levels. The remainder of that 9% donor blood is likely being produced by the persistent leukemic cells. Grrrr!

Despite being completely off the Tacrolimus (immune suppressant) for a week, I haven't yet shown any signs of graft vs. host disease (GVHD).

In bone marrow transplant circles the first 100 days is, as I'd mentioned before, a date before most of the risky immune stuff happens, and everyone looks forward to Day +100. Since I have had to go off the Tacrolimus and am back on chemo, I was wondering if my 100 days re-sets. (I seem to worry about the wrong things, but I like hitting milestones.) Katie said that the 90-100 day mark is relatively arbitrary, but is the point where most transplant patients have their first disease checkup (ie: first bone marrow biopsy, extra lab work, etc.) and when they wean off immune suppression and antifungals. I'm already off the immune suppression (unless I develop GVHD--then I'll go back on) and as long as I don't develop GVHD, I should be able to stop the fluconazole and ursodiol. (Bactrim still goes till the 6 months point.)

I asked about masks and if I can safely wear a cloth mask when biking or walking outside (the paper ones get hot when exercising) and she laughed and said, "in pre-COVID times you wouldn't have to wear a mask outside at all--just don't bike on dirt trails!" (Stupid COVID!) Guess I'll be pulling out the sewing machine again this week.

As for the leukemia part, I also got some additional clarification. In addition to the three levels of bone marrow biopsies previously mentioned, my team also sent out an additional myeloid malignancy panel. Unfortunately it showed that the p53 mutation is still there. As Katie said, since I went into my transplant with MRD, they are not terribly surprised that I came out of it with MRD, too. (Disappointed, but not surprised.) So I will continue on the Decitabine chemo until it no longer works. Overall, I tolerated my first round pretty well. The first four days were super easy (no pre-meds!), and by day 5 I was a bit more tired and had Greg drive me. This weekend I was back to having no appetite and struggling to eat or drink anything (and to keep my pills down). Today I seem to be mostly back to normal, so three days of yuck aren't too bad.

Greg got to come with for chemo for the first time in MONTHS!

In addition to the Decitabine, if my donor is willing, we will get lymphocytes from her, and I'll get them in three batches--each 2 weeks after a Decitabine cycle. This donor lymphocyte infusion (DLI) may cause some GVHD (which might require me to be back on the tacrolimus and/or steroids), but it might also beat back the remaining leukemic cells in my marrow.

I finally just came right out and asked Katie how scared I should be with all that we now know. I reminded her that I'm the kind of person who functions really well at overcoming difficult tasks when I know what I'm up against and when I have an end point in sight. She told me that, with leukemia and especially with leukemia with a p53 mutation, that's just not possible. She can't give me survival percentages or predicted lengths of time. Even though there are factors that make people more or less likely to relapse, they're not certainties and some people do amazingly well despite being presented with "unfavorable" outcome probabilities. On the other hand, some people hit all the perfect milestones and then die from something completely unforeseen. Basically she told me that we just have to take this week by week. She reminded me that I am "only" on my third AML chemo, and there are others that can be used if need be. It made me instantly think of all my breast cancer sisters with metastatic breast cancer (MBC) who cycle (or cycled) through chemo after chemo. Some of them work for years. Some for only a few months. But as my MBC sisters have all said, every month you're kept alive by one chemo is another month for researchers to find the next, better chemo. One month at a time...

I'm resigning myself to being an awesome bone marrow transplant patient, but a really crappy leukemia patient. Given my competitive nature, I guess I'm glad that I'm kicking butt in one of the two. :)