Day +87

Patience is a virtue. Repeat weekly, daily, maybe hourly.

And I had a long blog post mostly-completed about this and was waiting till today to post. Unfortunately my computer ate it. So you will get a shorter, less-entertaining post instead.

First of all, this week I spent a LOT of time at Froedtert. I had five days of chemo (M-F), two days of labs and two doctor appointments.

Chemo (Dectabine) is very similar to the first round. That is, three days easy-peasy, followed by feeling tired on day 4 and more icky on day 5 (today). Unfortunately the last three nights I've only gotten somewhere between 4 and 5 hours of sleep. I think, if I remember correctly, that the same thing happened last round. I'll keep better notes for (hopefully) round three. I'm not exhausted--I actually can't sleep because I'm not tired. It's odd. Must be something chemo-related.

Labs have improved ever-so-slightly. Actually, my WBC and neutrophils have creeped down, but they've been essentially zero for a long time anyway. After my last blood transfusion (last Friday), my HGB has maintained, and surprisingly my platelets have increased to 50K! No one seems to know why that's happening, but it's not a bad thing. My peripheral blast counts are bouncing between 5% and 11%.

Monday I had an appointment with Dr. Hamadani and he told me that although he would stay in contact and see me periodically (and manage any GVHD or other transplant-related issues), he was shifting my care back to Dr. Atallah. I also asked about the possibility of a second transplant, and he said that we could only discuss that if (IF) I made it into remission with negative MRD. I think that means that there's not much of a chance that I will end up with negative MRD. But every month may present another option, so I'm not giving up.

Tuesday I met with Dr. Atallah. It was nice to see Dr. Atallah again, even though it meant that I was seeing him because the leukemia is back. He explained more about the clinical trials. Basically, enrollment in clinical trials changes daily, so I can't enroll now anyway. That's because we don't know yet if the Decitabine + Venclexta is working or not. My first chemo cycle was only Decitabine (before the bone marrow biopsy). So the plan is for him to watch my blood blast % and as long as it doesn't get too high, I will be on Venclexta for a full cycle before the next bone marrow biopsy. If that biopsy shows good results, I'll stay on Decitabine + Venclexta until it doesn't work anymore. Then, and only then, we'll look for a clinical trial that might work.

So that's my plan, as it is. Wait and see. And no decisions can really be made until they can be made.  :)

I've been trying to stay active, but it's been a lot harder with the heat. I signed up for a few exercise challenges, but one that I was most excited about was the Trek Century Challenge. You could compete at three levels--100, 500 or 1000 miles in the month of July. Last year I rode 322.5 miles in July. I'd planned (last year) to stretch myself and do 500 in 2020. Well, that definitely didn't happen!  However I did manage to eke out 100. Given the fact that I had 8 days of chemo and received 7 units of blood and platelets in July, I guess that's really not too bad.

Finally, I have to share the coolest gift that my friend Laura gave me (along with a quick, masked, socially-distant visit):

a Prince mask--perfect on day +87 (cuz CLASS OF '87 RULES!)

Thank you all for your continued positive thoughts, prayers, messages, and wishes. One day at a time...

Day +79

Nothing earth shatteringly new.

My counts continue to be low (dropping or maintaining), although I have not needed transfusions every two days like last week. Friday I needed both blood and platelets; Sunday I needed nothing; Tuesday I could have gotten blood (HGB: 7.4) but chose not to. Today (Thursday) I was pleasantly surprised that most of my counts are creeping up ever so slowly (HGB: 7.6, WBC 0.4, PLT 19K) even after 6 days without transfusions. The blasts in my blood, however, are up to 8%.

In addition to the continued low counts, and increasing blasts, I also got the info from Friday's bone marrow biopsy. Not surprisingly, it showed 40% cellularity (you want none) and 5% blasts (you also want none, but under 5% can still be normal). The leukemia is most definitely back.

The current plan is for me to continue on Venetoclax (oral chemo, started four days before the biopsy) and to get my next round of Decitabine next week (infusion chemo M-F every day). Because I hadn't been on the Venetoclax a full cycle, they aren't ready to move on from this regimen, but at the same time they're not yet convinced that it's working. Dr. Hamadani (who was *amazing* this appointment, FTR) said they have three clinical trials in mind. His third choice he glossed over and didn't even tell me the exact med. His second choice is an antibody aimed at CD47, and his first choice is a combination of chemo and a radiotherapy-adapted immunotherapy (lintuzimab). I think that this is the trial he's talking about, as he said they're expanding it and need to make sure I'm CD33+ to qualify. They will watch my counts and if they seem to be rebounding and the blasts aren't increasing, they'll stick with Decitabine and Venetoclax, but they are also checking my eligibility for the clinical trials.

Although I felt truly awful last week with my low counts, I have not felt as bad this week (at least not physically--mentally I'm all over the place).

I continue to feel very lucky that I have not (yet) had signs of GVHD or other issues that would be truly awful on top of the leukemia crap. Nothing much to do other than keep plowing forward. Also, I feel like I gave the leukemia a chance to save face and leave gracefully. He's got a few more weeks, but so far he doesn't seem to have accepted what a generous offer I've made. After all, if he really wins this fight, he dies with me. But if he takes credit for being ultimately badass, I will tell his story for as long as I live. (Can you tell we finally watched Hamilton this week?) If he's really thinking about his legacy, I think he should just give it up.

Fingers crossed for counts continuing to rebound at Saturday's labs, and either remission from this, or acceptance into this promising clinical trial.

Day +70

I was hoping I'd have some amazing news of some sort by this week, but it's more of the same for the most part--maybe even a little worse.

My counts have continued to drop even though I'm over a week after completing my first round of chemo (two weeks since starting it). WBC are low enough that I'm on all the extra protective meds, hemoglobin is low enough that I needed a blood transfusion Friday (and I *feel* like I'm low on oxygen), and I've needed THREE platelet transfusions. It's not just the chemo, as the percentage of blasts in my blood have also increased (1%-8%). So this is the return of the leukemia and we need to try to knock it back into remission.

I'd mentioned the possible donor lymphocyte infusion (DLI) before, which would be a three-time "boost" of some immune cells from my donor. The hope (and what often works) is that her immune system would recognize the leukemia as foreign and would attack it. Yesterday I learned that my donor is not available to donate additional cells. They don't know why (Be The Match doesn't give a reason), but at any rate, the DLI is no longer on the table.

I will get another bone marrow biopsy on Friday to see if the first round of Decitabine did anything. I have also, since yesterday, resumed taking the oral chemo (Venetoclax). I'll do at least a cycle (month) of Venetoclax and they'll watch for a response to the chemo (counts rebounding, blasts dropping, etc.). If not, they'll do another biopsy in another month and go from there.

If there is more leukemia even after those cycles of Decitabine and Venetoclax, then we move onto something else. There is a promising clinical trial that uses an antibody against CD47 (which indirectly targets p53), which they are hoping I could get into.

To end on a slightly more positive note, I mentioned my concern yesterday that I had to have platelets three times, two days apart, each time because my count was 9K (really low). Katie said she'd draw a post-infusion lab to make sure that I wasn't developing refractory platelet issues. Basically that would be an immune response to donated platelets. Yesterday my count went up to 52K after my transfusion, so she doesn't (at this time) suspect refractory platelets. (If it were, I'd need to receive platelets much more closely matched to my blood type and HLA to decrease the chance of a reaction.)

And I know most of you saw my post on Facebook, but I will keep posting about blood (and platelet) donation whenever I hear of there being a shortage. Since I started my treatment for leukemia, I have needed 10 units of blood and 16 units of platelets. :(  I don't know when this need will go away (if ever). And I am so indebted to those of you who donate regularly, who started donating since my diagnosis, or who went from sporadic donations to regular donations. You are heroes! And I mean that completely. I literally would not be alive without you (and others like you) donating. If you donate through Versiti Blood Centers, your donation stays local. They have donation sites all over the Midwest. You can sign up online, and I've heard from many people that they are doing an awesome job of being safe in times of COVID. But if you prefer Red Cross, they're also good, and I'm sure there are local centers in other parts of the country/world. I feel like blood donation is a big karmic pool and wherever you give, it results in someone somewhere that you love benefitting, as your donation is benefitting someone somewhere that someone else loves. :)

Life-giving red blood cells

Me, with my third bag of platelets this week

Finally, I've decided to approach my leukemia mentally in a slightly different way. I was already thinking this when Cara responded to the return of my leukemia by texting me, "You are clearly a vicious badass--all of your cells, even the f'ed up ones!" So I acknowledge the badassery of my leukemic cells. They have made it through four different chemo regimens (including one called "myeloablative" which literally means obliterate all the marrow). They keep mutating and making it harder and harder to fight them. I am a strong, otherwise healthy, relatively young woman and they keep winning. So I give them kudos for being this strong. They've proven themselves and I will no longer underestimate them. And now it's time for them to take their first place medal and get the fuck out.

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. :)

Day +57

It took me a few days to wrap my brain around things and even figure out what to say about Monday's appointment. I'm still kind of going on uncertainties, so things could definitely change in the future, but I'll try to explain where things stand now.

I'll start with the bright spot: my CMV copies fell down to undetectable this week! So I'm off the stronger antiviral and back on the "normal" antiviral (acyclovir). I might be imagining it, but I swear I feel less dizzy already. And it was dropping my blood counts, so hopefully being off it will help there, too.

Other bright spots are that the pills I need to take daily have dropped and will drop even more by the end of the week. (Tacro already; magnesium later)

But unfortunately the cytogenetics from my bone marrow biopsy did not come back "good."
Remember there are three levels of biopsy examination.
1. Gross (microscope slide) examination: mine looked clear
2. Flow cytometry (labeling cells with surface markers and examining them for makeup): mine had 0.67% cells "aberrant." That's non-specific, but not normal.
3. Cytogenetics, or examining the karyotype of a sample of cells. Of the sample of 20 bone marrow cells, eight of mine had genetic mutations. Some of these mutations had been present earlier (before I went into remission and before my transplant), and some were brand new mutations.

Here's where I'm not sure just how bad it all is. (Is this Bad with a capital B? bad with a lower case b? BAD in all caps?)

Because my aberrant cells are under 5%, I'm technically not out of remission, but I have MRD (minimal residual disease). But obviously we don't want any abnormal cells. And the fact that I had a very harsh, myeloablative (ie: kill everything in the marrow) chemo regimen before my transplant and I already (still?) have leukemic cells is not good.

I'd been told that a little graft vs. host disease (GVHD) would be likely, and actually a good thing because if my donor's marrow is attacking my body in some way, it's likely also seeking out any hiding leukemic cells and destroying them. I haven't had any GVHD symptoms, so the first thing my doctor did was wean me off the tacrolimus (and if I'm not taking tacro, I don't need the mag supplementation--that's 19 fewer pills a day). The second thing he did is get me into chemo. I was going to start chemo this week anyway, but it was to be given as a maintenance dose, to prevent recurrence. Now it's a dose to attempt to bring me back to complete remission with no MRD. The third thing he is planning to try is something called a donor lymphocyte infusion (DLI). Basically, you take lymphocytes (T-cells) from the donor and give them to the patient and hope they seek out the leukemic cells and attack them.

It all took me so much by surprise on Monday that I wasn't able to ask a lot of questions. I've been doing reading as much as I can, and talking to others with AML and/or who have had transplants to see who has had similar experiences. There are definitely people who have relapsed after transplant (and even had second transplants) and they are alive years later. But I continue to have a lot of characteristics that make my leukemia have a "poor prognosis." That includes it being caused by prior cancer treatment, the presence of more than 3 mutations, some of the high risk mutations, not having obtained full remission (I was MRD) before transplant, and now the persistence (or re-emergence) of MRD after transplant.

So it's pretty scary. I'm trying not to be panicky until I can talk to my team and see what they say specifically. And I have to focus on the fact that even the grimmest statistics have exceptions. I do have some things going for me: I'm young (under age 60), I'm in good physical shape overall, we have no evidence that it has spread out of my marrow/blood, and I follow my medical team's guidelines, taking all meds correctly, etc.

I'll update when I know more, but for now, feel free to send vibes that this round of chemo works on the mutations and that my donor is willing to again donate (this time lymphocytes) to me. Oh, and I guess you can throw in a bit to bump up my blood counts again since being on chemo will knock them down again (and they haven't had a chance to recover from the valganciclovir). I'd prefer to not need more transfusions.

More chemo! Only 5 days each month for this one.

Day +50

Bone marrow transplant recipients count down to day +100, as those first 100 days post-transplant are when there is the greatest risk for critical side effects, and after which the stem cells are most likely fully engrafted and functioning as the new immune system. It's the general divider between acute graft vs. host disease and chronic GVHD, and the period of time when you're most susceptible to infections, as the new immune system is not yet fully established.

So I'm halfway there!

At Monday's appointment they didn't have my preliminary biopsy results back yet. I had to wait for the CMV levels anyway, so the PA said she'd call me on Tuesday.

My blood counts dropped a bit more (likely due to being on the antiviral--valganciclovir), but are hovering in the just-below-normal range.

WBC: 2.3
ANC: 1.6
HGB: 10.4
PLT: 117k

My potassium and magnesium were normal (yay!) but my creatinine level was elevated (could be dehydration; could be all the meds), so I got another liter of IV fluids.

Tuesday (yesterday) I waited and waited for a phone call with results and finally just before 4:00 pm I called the office. The results were kind of mixed.

My CMV levels, which had dropped to detectable but not measurable last week, actually rose to 130 copies this week. That means I can't stop the valganciclovir yet. (Although my dose was cut in half after being on it for two weeks.) I'm trying not to worry about the impact of being on this strong anti-viral that long. The PA assured me that people often cycle up and down with CMV levels through the first 100 days. My chart did say that I was at high risk for CMV issues since I was positive and my donor negative. Around 100 days, my new immune system will hopefully be strong enough to fight off any re-surfacing of the CMV. Until then, I use the valganciclovir as needed. Fingers crossed that levels will be down next week.

The bone marrow has three levels of testing done. The first is microscopic examination. My marrow looked good with no evidence of pathology. The second level is labeling and running flow cytometry on a subset of cells from the marrow. That had "some aberrant cells." I'm not sure exactly what that means (other than some messed up cells), but again the PA wasn't overly concerned. The third level is the cytogenetics, which won't be back for about two weeks.

As it turns out, whatever the cytogenetics show, it probably won't change my treatment plan. Because I have a history of p53 mutation, whether it remains in the bone marrow now or not, having a history means I'm more likely for it to recur. So I will start my first round of maintenance chemo (Decitabine) on Monday. I don't know the specifics of it, beyond the fact that I have five chemo appointments scheduled next week. I'm not sure how long the appointments are or how frequently I'll have them, or for how long past transplant they'll continue.

I was initially very discouraged, but I was actually anticipating worse, and I realized that only a few years ago, maintenance chemo probably wouldn't even have been done, and my likelihood of staying cancer-free would be much smaller. So this is just one more inconvenience to hopefully move me toward cure. I can do it!

Physically I've felt a lot better this week than I have the past few weeks. Cara drove over for Father's Day on Sunday and it was so wonderful to have my entire family together for the day! Maybe that's why I got some energy back and just generally feel better able to get through this. One day at a time.

First time all together since Xmas!

Day +44

Today was my seventh bone marrow biopsy, and it was far and away my worst.

I have previously described the biopsies as mostly uncomfortable. You lie on your stomach with your hip bones exposed. They take the marrow from the back of your hip bone, and numb the area with lidocaine. The injection of lidocaine (progressively deeper) is the most painful part as it really stings. But once it's numb, the main sensations are lots of pressure (when the clinician goes through the bone) and a strange suction like feeling down your leg (when the liquid marrow is removed with a syringe). The whole procedure takes about twenty minutes (including vitals before and after) and concludes with application of a pressure bandage and ice pack for fifteen minutes. Unlike at St. Luke's, Froedtert lets you drive yourself home after the procedure, and I've recently started driving again, so that's what I did.

For whatever reason, today my hip bone did not want to be pierced. The PA commented, "you have really hard bones--you can tell that you exercise." And I was initially flattered, but as she kept drilling, it HURT. I actually had her stop at one point so I could catch my breath. She said there was just a tiny bit further to go, so I clenched my teeth and she drilled the rest of the way. But then as she was drawing out the aspirate (liquid bone marrow), she commented that it was very slow going. And then she said that she couldn't get enough for all the tests they wanted to do (which included the cytogenetics to see if my p53 mutation was still there or not). I got panicky but she reassured me that sometimes there are places in the bone that are marrow sparse, and there might be another area a little farther away that is more marrow dense. She asked my permission to do a second drilling half a centimeter away from the first. The fear of not knowing results or having to go through this again was much worse than the fear of a second bone marrow biopsy on the same day, so I said sure. She gave me extra lidocaine (more pain) to numb the additional area, and this time the drill went in very quickly and easily. She also commented that the marrow was "flowing like a fountain," which was another relief, except that the pain from the aspiration was unlike any other biopsy I'd had. I gasped and arched my back and actually said, "OW!" It was more than just uncomfortable.

The whole thing took almost an hour. But I was happy that the PA and the lab tech were both pleased with the samples. I rolled over onto the ice pack and the nurse asked me how I felt. I was actually feeling kind of light headed, which I assumed was because I'd laid face down for an hour, and was tense the whole time. He asked if I wanted something to drink and I realized I was terribly thirsty and also very hungry. So my nurse kindly brought me apple juice and a snack pack. As I started to eat, I realized that my lips were numb and it was hard to swallow and I got really scared. I'd been feeling a little light headed when I got up from sitting since I'd gotten out of the hospital, and I was terrified of what this meant. I also remembered that I had driven myself to the hospital. There was no way I could drive in this condition. I was trying to text Greg and my fingers wouldn't hit the correct keys on my phone (thank goodness for autocorrect). It was then that my nurse said that it could be the lidocaine.

I had no idea that lidocaine could go systemic. I thought it was very localized, and I'd never felt anything before after a bone marrow biopsy, so that was all new to me. But I definitely felt like I was anesthetized! My nurse said I could stay as long as I needed and that the lidocaine should wear off within about two hours. It got worse before it got better. I remember being terribly sleepy, but afraid to fall asleep in case something worse happened. All my vitals were great--it was just this insane fogginess and fuzziness surrounding me. I couldn't use my phone very well. I had brought knitting with me, but it was too much effort to follow a pattern.

And then at about 1:10 (the lidocaine had gone in at about 11:20) I felt like I could sit on the edge of the bed, so I did. The next time my nurse came to check on me, I asked him if I could try to stand up. He asked if I wanted to try to walk and I walked around the unit without any unsteadiness. He said I was fine to go whenever I felt like it, or I could stay a little longer. I stayed another fifteen minutes to make sure it was truly over, and then I walked to my car and drove home.

I will get the preliminary results (ie: how well the donor bone marrow has engrafted) on Monday, but the cytogenetics (the really important stuff) won't be back for up to two weeks.

Other than today's excitement, I haven't been doing too much. My energy level fluctuates, but is still pretty low. I have tried to walk at least a little bit every day, and have biked every few days, although my rides are so much shorter and slower. I signed up to do a virtual race, Race Across Wisconsin Cheesehead Challenge. I have until the end of September to record 408 miles walking, running, biking, paddling, roller blading... When I signed up, I didn't think it would be a big deal, but now it seems more of a stretch! At any rate, it keeps me moving even on the days I feel like I'd rather just sit on my butt. Greg and Travis have both been great sports about walking and biking with me, and some days I've even been able to bike with friends (socially distanced, of course).

Which friend is the angel and which one the devil on my shoulders? :)

My labs have been decent. My blood counts dipped a little today, but that was after increasing a bit. They're all near "normal" but slightly below it. My potassium dropped into the normal range and my magnesium increased to the normal range. My CMV levels were back to detectable but not measurable (yay!). And my tacrolimus was high enough that I was able to drop from taking 10 tacro pills a day to only taking 8 a day. (It's the little things.)

Thank you all for your sweet messages and good vibes today. I'm more than willing to endure some pain and wooziness if I get good results. Fingers crossed!