Lovebuch family happenings

Things have been going farily well recently. I'm down to every other day clinic visits and weekends off. Spending less time at the clinic, and more time on normal stuff. As a whole, blood counts are returning. My bone marrow showed hypocellularity of 80%, meaning I have the cell production of about a 20 year old right now. (rule of thumb 100% - age is typical cellularity). So there's no issue with the production, but my platelets are barely recovering. I held in the low 40s earlier in the week until today when I dropped to 34.  Our guess is that my spleen is sequestering and destroying them, gobbling them up instead of letting them float freely.  This is annoying and has brought some discussion to the potential of removing my spleen, or a splenectomy. This will be a question for I will explore further with GI next week. I will approach a splenectomy cautiously because it is a major surgery with serious complication risks and long-term issues. But it could also free me of this p

Yesterday I found out that my bone marrow came back with 0% leukemia. We achieved the goal of CAR-t CD19 therapy: a complete remission (CR)! It was great news. Briana and I went out for dinner at La Madusa, the nicest restaurant in Columbia City and co-celebrated the news with my belated birthday dinner. I felt good. I felt relieved. I felt hopeful. But right now, I feel less so and it’s annoying and frustrating, as the world of cancer usually is. In previous trials, 80% of patients achieve CR through this therapy, and it felt good to be with the 80%.  However, CR doesn’t always stick around, maybe 40-50% (I gotta learn this number) stay in CR for 2 years. And what I’m facing now is: how long will my remission last? Today, I was reminded of this by Dr. Maloney, who came into my room and we had an initial discussion about my options. We’re gonna talk more about it on my exit conference, but he wanted to get me thinking about it. Basically, we can do nothing and hope the CAR-t cells st

This post is a collection of three separate writings noted by the date. I got out on Sunday October 7th, just in time for my birthday the next day. Oct 5: Sitting in the hospital bed. Finally going to write a little something coherent about this most recent hospital stay. Overall, it’s been extremely taxing: my body, well, it’s been through the wringer with 104 fevers, constant heart-rates above 100, general lack of nutrition due to dietary restrictions and/or nausea, and a complete lack of walking more than 10 steps in a row--the rooms are small and I couldn’t leave them.  My mind, oh the every moment over-analyzing the day’s events as I didn’t want to miss any detail that might help myself or the team come up with answers, and the constant attention to what nurses and doctors were scheming so I could argue when I needed to. And my soul, oh dear, why did I come to the hospital in the first place? I lost total sight of the goal along the way. And now? I don’t want to hear the word

Things picked up on Friday, Day 10. After being distracted in the morning by dropping off Alpen at his new daycare for his first half-day, I headed to the SCCA for routine labs. I started the morning with lengthy labs and a lengthy dressing change, that was making me antsy that we hadn’t done vitals yet. When we finally got there, the nurse and the PA now in the room, they weren’t normal. My temperature was 38.2 C one tick below the “true fever number.” We tried another thermometer from a mobile unit: 38.3. That’s all we needed to see. The PA turned my way, “how do you feel about spending your Friday afternoon in the hospital.” Mixed emotions. Obviously going to the hospital on a sunny Friday in Fall is nobody’s idea of a fun time. But I was all the sudden energized, relieved that this was the best proof so far the t-cells were doing something. I wasn’t feeling feverish, I felt the same I had the day before. I sent out some texts to the family and they saw the awkwardness in the new

Monday morning and still in the hospital but my time to leave Is scheduled for 1 pm today. Writing from my phone so a bit tricky, but will do my best. In sum: huge thank you to  anyone who has donated red blood cells or platelets!!! If you to do something good for cancer patients: donate! I went through a few bags this weekend and wouldn't be writing this without them. Still no signs of any car T action, and thankfully no more signs of any stomach bleeding. The cause of the stomach bleed is thought to be from the chemotherapy and low platelets combo. The chemo I took destroys any dividing cells. Well the cells of the stomach, esophagus and mouth turn over more than other cells in your body so the chemo kills/irritates these cells.  typically these are places where you have issues after chemotherapy (mouth sores, nausea, etc). The combination of wounded stomach cells and low platelets meant some routine oozing turned into a fairly large bleeding event and that is why I came in to th

Hi all, Derek received the modified T-cells on Tuesday. Pretty short infusion at the SCCA, and then two hours of being "watched" afterwards. Many labs were drawn. Afterwards Derek was feeling well enough to go for a little stroll at Kubota Gardens. I'd never been there, but it was really beautiful. Alpen hated it however as can be seen from the pictures! After the cells on Tuesday, Derek had normal clinic visits Weds. Then around 1 AM at night I heard him say "Briana" from the hallway. I thought, hmm, that must have been in my dream that he was talking to me. But then I heard it again, and I realized he was talking to me. He needed to go to the hospital. Our first response was to drive on down, as we've done before. However Alpen and I both had colds. I couldn't really fathom waking Alpen up in the middle of the night and dragging him into the ER. When he was smaller, he could do that kind of thing, but now he's his own litt

As of one hour ago, all the chemo I will need to prep for the CAR cells is done. Now I’m waiting out a bag of red blood cells.  The train is moving along, but I wish it could move faster because with all this waiting from July, the leukemia inside of me has been multiplying. We tried our best to “keep a lid on it.” But now it rather high like 80% of my marrow, this means it’s squeezing out space for my body to make my other blood cells. So my counts have been dropping every day due to my increasing cancer load--making me feel more tired and be more susceptible to infection--and it would be nice to stop waiting and take something that will get to the root of the problem of too much ALL in my marrow. This past chemo does a little bit against the cancerous b-cells, but it also does a little bit to all my cell lines. So it’s a slight benefit the chemo, but I’m ready for the ALL-specific special forces to get in there. I actually had a little bit of good news today when I found out my plate

It’s becoming more real this week. The final tests have been done last week. Chemo starts on Thursday, and continues for three days. Sunday and Monday are rest days, but the Tuesday next week (sept 18th) is the big day when the engineered cells go in. I’m having a data review with the team to square things away before we put any medicine inside me in an hour or so. It’s hard to describe my headspace at the moment. I’m thrilled to have a chance to clear some leukemia that doesn’t involve more serious chemo, but I’m also a little nervous and little scared. Even though the transplant was statistically more risky than this, it was also more honed and more practiced. CAR-t therapy, still being in trials, makes me feel more vulnerable and in that way is more scary. I really can’t grasp how I’ll feel once the CAR cells start killing leukemia. Like, a cold bad, or a flu bad? And it seems, I “wait” around for the 14 days after treatment--well still coming in for check-ups every day but mos

I have an appointment later today, and I will update if things change. But I doubt any of the main dates will change and I realized I didn't update on the current plan from last week. Cells were extracted successfully on August 1st. They were then frozen and sometime this month, they will be unfrozen and then engineered and multiplied into an army of CD-19 destroyers. The dates I was given are as follows: Car-t cell chemo:  Sept 13-15  (to knock off some of the current t-cells and make room for the new ones). Car t cell infusion of my engineered cells: Tues, Sept 18 Watch, observe, daily clinic visits: Sept 19-30+ Today, I hope to iron out some more off the specifics and plans. I hope to go through the plan for different scenarios depending on my response to infusion. This month I have Dr. Turtle, a friendly Australian doctor, who is the PI for the trial. This is the guy with all the knowledge and answers to specific trial questions. And while many answers haven't been re

As of yesterday, we now have a plan. I am officially on the CAR-t trial. I needed some disease to get on the trial, and the bone marrow from Friday was 1.5% leukemia cells, so I’m in. And it should stay that way unless I get some gnarly, consistent GVHD between now and CAR-t cell infusion (you can’t be on the trial with GVHD because it’s too risky for further inflammation and side-effects. And thankfully my leukemic load was lower than the 10% of 3 weeks prior, so my disease burden is less now, and the leukemia is at bay. Yesterday I met with the attending doctor on immunotherapy, Dr. Shadman. I like Dr. Shadman, and we both remembered each other from my induction therapy at UW for the first go around, 6 years ago. He was a fellow then, on the ward rotation, and performed my first lumbar puncture and also did a couple bone marrows. He’s competent, direct, and has a decent bed-side manner. I’m fortunate it was him because he was a fellow under Dr. Shustov, so they have good c

No hospital this week. Plan was discarded because I got onto the CAR-T trial early, so CAR-t team are seeing me next week. Therefore, we went with a little chemo (Vincristine) yesterday to try to keep the leukemia at bay, but not remove it all. I find out Friday through a bone marrow if the plan worked, and the Vincristine reduced, but didn't eliminate the leukemia cells. If there is still any amount of leukemia found, I can be accepted to the trial and resume the Car-t plan. I will write more about that after I meet with them. We had a nice stay in Portland. Alpen was not afraid of fireworks, which was good cause there were many. He was fun, and cheery, and walking around a bunch. I unfortunately came down with a bad cold and spent most of the time  coughing and sneezing and drowzy from meds. It was really nice to have help from grandparents in this kind of state and Peggy and Byrne stepped up to the plate to help us out. Peggy even got up early one morning to watch alpen

Oh the Journey of Leukemia and Me. Unfortunately, a new chapter began this week.  I found out today that I have some leukemic cells in my marrow,  How likely was this to happen? Around 40% actually, so I'm not terribly surprised, but it does suck. Pre-transplant, two doctors told me the allogenic transplant success rate into continued remission was 62% for ALL- leukemia.  So my odds were probably around there, and I was hoping I was one of those in the 60%,  and I did everything I could to get in there (like the full total-body radiation with the extra cranial-spinal radiation). But alas, I wasn't able to draw the right cards again, so I'm back with leukemia floating around my blood stream. I remember reading a line in the transplant booklet that stuck with me: something like "t ransplant gives patients the hope of a cure." Two weeks ago, Dr .Shustov suggested a flow cytometry test on my peripheral blood just as a non-invasive way to check for presence of abn

Been awhile to write, but recovery has been going fine. In this blog, no news is good news. Overall, I’m feeling much better. My biggest complaint is fatigue. But that’s normal.  My providers keep reminding me that it can take months before patients feel like their energy is back. My issues are some GI stuff, that is being considered likely weak GVHD. I started taking a new medicine combo for the GI issues: a corn-oil infused with a mild steroid for upper GI and another that helps with lower GI stuff. The hundred day marker was on February 24, so now I’m in the 150s I suppose. I haven’t kept too close of tabs on my days like some patients do. I just prefer to check in with them now and again and get surprised with how far along I’ve come. Currently, I’m going into the clinic on Monday mornings to check labs: a full blood panel and a metabolic panel, plus a CMV test. This happens on the 1st floor, and I then go upstairs to the Bistro Cafe and get a breakfast sandwich and a coffee and

I got out of the hosptial on Thursday afternoon. I had to stay one more day than we originally thought because the attending wanted to see what happened to my temps if they stopped the antibiotics. The temps stayed the same, so the next day I got out in the afternoon. After being cooped up in that room I was ready to go, and of course at the last minute, my nurse came in and said we need 5 more nutes, cause your cyclosporin levels just came back, and they were high. Of course, logically what's 5 minutes when I had been there for some 80 hours? But since I was so close, that felt like way too long. Thankfully, the pharmacist came down to see me after only 2 minutes, and I explained that the SCCA nurses will figure this out, and they'll call me, I could tell that the Pharmacist really wanted to tie this case up in a bow right now, but it wasn't going to happen, and didn't need to happen. She accepted that after a little back-and-forth, and my nurse escorted me out to the

Tuesday Day 61. First virus on the new immune system Things were going nice, but then they took a turn for a worse and the whole family got colds. On Thursday night, Alpen was hacking and sneezing some green stuff. Breezy started not feeling well. So on Friday, I decided to make a run for Edmonds and get out of the house in case I hadn’t been infected yet. I stopped by SCCA on the way to do a nasal swab so we would know what type of virus (if any) we were working with. I didn’t have a fever which was the first thing they asked me (and asked about Breezy and AlPal) cause a fever could mean influenza and the flu would mean real bad news. The swabs take 24 hours to result, so on Saturday up in Edmonds, I found out I had not one but 2 viruses(!): a Corona virus and a Boca virus. So I didn’t escape Columbia City in time, but then the question are these the same viruses that Alpen and Breezy have? Without them getting swabbed, we didn’t know. So to be safe, I remained in Edmonds over th

Day 57 Things are chugging along nicely lately, which has been a relief. Been feeling pretty good in most departments. I've had a little trouble sleeping with the prednisone, but GI, appetite, and energy levels are good. I go into the clinic every Monday and Thursday, and occasionally, one or two other mornings for blood draws to check CMV and Cyclosporin levels. A cool thing about doing transplants in 2017 is the ability to administer IV medicine to myself at home through my Hickman site. Without this, it would be daily trips to the clinic or long hospital stays. The SCCA uses a home-infusion company, Coram, which talk with my team and ship me everything I need for care at home. They loan me a $2000 small pump, and supply the tubing, flushes, and IV drugs. Most week days I get 2-3 calls a day from either my Orange team at the SCCA or Coram trying to coordinate deliveries and dosing changes. Coram is super handy, but resource intense, like all of medicine. Since scripts chan