Bryce
Hello world. Turns out I enjoy updating the blog and getting stuff done when I’m on steroids. Dexamethasone saved Trump and my blog updates.
3A (5th Cycle)
My 5th cycle (3A) can be summed up by my love/hate relationship with steroids. During A cycles I take steroids days 1-4 and then again 11-14. I enjoyed the energy and overall good feeling they provided but the withdrawal was terrible. Days 16-18 can best be described as feeling like someone beat me with a sock full of nickels. Everything hurt – bones, joints, skin. I had zero energy, but it got better each day. Steroid week was also tough on our relationship because I’m irritable, anxious, and my patients was nonexistent. MB said I need to stay with my parents next time. Surprise Mom.
3B (6th Cycle)
B cycles typically require five days of inpatient treatment. Chemo only lasts the first 3.5 days and then the remaining time is spent passing the chemo through your system before they’ll release you; they want to ensure your kidneys don’t blow up before they let you go. In my last post I made a goal of getting out in four days. The inpatient doctor told me it was highly unlikely, BUT I proved him wrong. I pounded a few liquid IV’s, drank a ton of water, and was released in the afternoon of day four.
Skip if you don’t want to read about blood loss. While B cycles require fewer days in the hospital, they destroy my bone marrow, like it disappears and I become dependent on transfusions. One day my hemoglobin dropped to 5.9; normal is 13-17 and I tend to bounce between 7-8.5 with the help of transfusions. While my hemoglobin was down I was basically dead with zero energy for threeish days. Further, my platelets disappeared. Over the course of the two week recovery at home I had a few nose bleeds, my butt bled from a hard stool for a week and a half (I’ve come to accept it’s probably ripped as the reddit user warned several months ago), and my gums bled for 26 hours.
The gum bleed started on Sunday after brushing my teeth and continued until Monday afternoon. I wasn’t able to see my onc until late Monday morning and I had 6k platelets; normal is 150-450k. I needed a transfusion but couldn’t get one from Mercy until Tuesday afternoon because there’s a shortage of platelets in NWA; they’re now having to source them from Springfield, MO. If you live in NWA and want to donate blood/platelets Community Blood Center of the Ozarks and I could use your help.
Understanding ALL
No one really seems to…
I don’t think anyone really understands ALL, especially adolescents and young adults with ALL (AYA’s age 19-39). There’s no standard course of treatment for us because studies have conflicting results – which is better a pediatric protocol or adult protocol, no one really knows. There’s no planned schedule because everyone reacts differently and everything is day to day. I’ve had people ask me what’s the next step and to be honest, I have no clue as it seems to change so frequently. When I get chemo it’s for 4-7 days in a row and a session lasts 10 min to 48 hours depending on the chemo. The hospital stays wear you mind and body down so much. There are cycles when I need blood and platelets every other day and cycles were I only need blood once over the two week recovery.
Once you start to feel semi-decent again it’s time for more chemo and you get hammered again. For me, the transplant process is a coin flip (more on that later) and waiting game to see if your sibling is a match or if matches exist on the registry. Some people have several viable matches and others don’t. Are the matches on the registry willing to donate in the middle of a pandemic? Who knows? According to my Mayo Dr., ALL patients receive a 15-20% benefit from transplant. But even with transplant lots of people die from infection or develop lifelong complications that destroys their quality of life. No one really knows where on the spectrum a patient will land.
The cancer alone and treatment makes you more prone to illnesses and infections; a stupid bug bite sent me to the ER with an infection and fever. I view treatment like a game of Frogger. I’m trying to make it across the road without getting crushed by car. So far I’ve been lucky and continue to pray for luck. It takes 5 years before you’re considered “cured” but at what point to you feel “cured” and stop worrying? I started out strong and optimistic life would be normal once I made it through the intense chemo and started maintenance, but now I’m constantly worrying life doesn’t or won’t return to normal.
Unknowns suck but on tough days I take comforting in thinking about the support of my family, friends, and all the folks praying for me that I don’t even know. I know I’m not fighting this alone and more people than I can imagine have my back.
What’s Next
UAMS admitted me two days ago for 4A (7th cycle). In a cruel joke, the nurses continue to put me in room E711; I thought they liked me. 41 of the 59 days I’ve been inpatient will have been in this room once I complete this cycle. Dr. V reduced the intensity of my treatment 20% based on concerns around my stem cells’ ability to recover since I needed so my units of blood/platelets last cycle. I have mixed feelings about this. I want all the chemo and don’t want the cancer to come back, but the thought of not have my butt kicked and avoiding blood transfusions every other day is appealing. He told me the reduction shouldn’t impact the efficacy of the treatment and to not worry. LOLZ. All I do these days is worry.
I’m Rare
Let me set the stage. ~6,000 people are diagnosed with ALL each year. Of the 6,000 roughly 60% are children which means around 2,400 adults are diagnosed each year with most of those being over the age of 50. The likelihood of catching ALL peaks during childhood and then again when you’re older. AYAs with ALL are rare. To add further complexity, I have a FLT3 mutation that caused my leukemia. FLT3 is super rare in ALL but much more common in AML. I think 30-35% of AML patients have FLT3; of those, roughly 75% have the FLT-ITD mutation (historically terrible prognosis) and the remainder have FLT3-TKD mutation (much more favorable prognosis relative to ITD). FLT3 is only found in 2% of ALL patients which means roughly 120 people per year. I haven’t found any data about the split between ITD and TKD in ALL but if you assume a similar relationship to AML, it means only 30 people per year are diagnosed with my mutation of which only 12 are adults. And then these patients are treated across the country with no central database and it’s impossible to know how we respond to various treatments.
To Transplant or Not to Transplant
Dr. V has me on a chemo only protocol. As mentioned in a previous post, I solicited a second opinion through Walmart’s transplant COE, Mayo Clinic, in the event I needed at transplant. Our initial consultation with the leukemia doctor resulted in “transplant is not highly encouraged” but he felt like I should speak with a transplant specialist to better understand all of the options available. Fast forward a couple cycles and we met with the transplant doctor who recommended I get a transplant. Two doctors in the chemo camp and one in the transplant camp.
The problem with the transplant doctor’s pitch was he couldn’t tell me how I or a group of patients similar to me would respond – standard risk AYAs. All he provided in terms of data and numbers, which I love as seen in my URL, was a general guide; ALL patients get a 15-20% benefit from transplant. I’m fairly certain this figure includes high risk patients with unfavorable mutations and slow responders to chemo, which I wasn’t. If he had 100 patients he could tell us 55-65% go on and live great lives, 15-20% suffer from chronic graft vs host disease which may ruin their lives and/or cause death, and the remainder relapse or die from complications and infections.
Based on the research I’ve done and a study I found by MD Anderson which specifically looked at AYAs on my treatment protocol and excluded Philadelphia chromosome positive patients (high risk patients that dilute outcome data), I feel like my odds are in line or slightly favorable to 55-65% that have great lives transplant, but I don’t run the risk of GVHD or transplant complications. The benefit to transplanting now is that risk of relapse drops and I’m strong enough to do it. Waiting to transplant has it’s own risks. Historically, it’s very difficult to get back into remission after a relapse. New therapies have improved the odds however they’re still not better than going to the roulette table and putting $100 on Razorback red. And once you achieve a second remission you may not be strong enough for transplant. To add further confusion, my mutation is so rare no one knows how it fits into all of this.
Being a numbers guy, somewhat indecisive without good data, and having hit my annual deductible, I thought why not add another cook to the kitchen and get a 3rd opinion from MD Anderson. MD Anderson is the best leukemia center in the country and if anyone has seen a case like mine, it’ll be MDA. I’m hoping they’ll be able to provide some clarity on what path may be best and better data around standard risk AYAs.
The good news is that if I decide to go the transplant route I have at least five potential donors that are 10/10 matches, and I had the impression more may exist but they were going to start with five. We’re also going to send my next bone marrow biopsy for deeper molecular testing. Previous tests looked at 10,000 cells and the next one will look at 1,000,000 cells. If cancer cells are found at the end of my intense chemo then it could be an indication I should proceed with transplant. I’m hoping between the additional molecular testing, 3rd opinion, and daily prayers for guidance, I’ll find which option is best for me.
Metrics that Matter
- Physical feels: 8/10 – I was tired but the steroids are giving me energy
- Emotional feels: 6/10 – chemo only vs transplant and running out of time to make a decision is taking a toll. Having my chemo dosage cut 20% for the last two cycles also hasn’t helped.
- Hours of chemo: 1A-67.33, 1B-39, 2A-66.33, 2B-38, 3A-66.33, 3B-38, 4A-12.2
- Butt: it‘s good today but I’m one hard stool away from a week of pain
