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 +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!