10-30 happy Halloween
Results from the Cytarabine in early October were just OK. The two main tumors in my abdomen reduced by 50%. I was hoping for more reduction, but so it goes. That meant we needed to move on to next steps. Not much in on the table anymore, but the best drug that we haven’t tried yet was Inotuzumab - ozogamicin, a CD22 immunotherapy drug that has been FDA approved in the last few years to treat refractory ALL. However it has a major downside, and that the potential of a liver toxicity that would rule out a transplant. The odds of the toxicity with the full dose is about 15%, but it goes up to almost 50% if you have had a prior transplant (which I have). So knowing that, I ruled out full-dose Ino.
Dr. Cassaday coincidentally just opened a new clinical trial going that is a dose-escalation for Ino combined with a traditional lymphoma chemo cocktail called EPOCH. I was patient #1 in the trial. Although being first gave me a little misgivings (is it safe? Does it work?), it also meant I would receive the lowest dose of Ino which is good for my situation. Seemed lilke the best option on the table, so back to 8SA on October 18th. I checked into the hospital for a 4 night stay, to get going on the EPOCH. It’s a 96 hour infusion, which I tolerated pretty well while I was there, and I didn’t have a cold, so I was able to walk the halls. Being able to leave the room makes a huge difference. Had some good visits from friends and family while I was there and the whole thing went pretty fast. Plus they now have Beyond Burgers--the pea and bean protein burgers covered in coconut oil (I ate 3)-- which makes the eating experience a little nicer too.
I got out mid-week last week and then on Friday had my Ino infusion at the SCCA. It’s nice to do outpatient. I don’t have any liver pain, so I assume I didn’t get a severe toxicity, although we didn’t check the liver enzymes yesterday, which I put my faith into Dr. Cassaday that he knows what he is doing. As expected, my other blood counts did go down because of the chemo last week. So I’m down on the my neutrophils to 60. I dunno I might have bottomed out today. During this time, I feel rather cruddy and vulnerable to infections, so I don’t do much. On top of this, I developed a cold over the weekend, my first one since June. Takes me back to all last spring. I forgot how shitty it is to cough all night. And unfortunately, it’s bad timing cause my body can’t really fight it until the neutrophils come back. So it’s a wait of bad feelings and tiredness. It’s also bad timing cause Seattle is having a dry spell and it’s been wonderful 50s and crisp and sunny for the last week and i haven’t been up to working in the yard. It’s perfect planting weather, so I’ll guess I’ll just have to wait til I’m feeling better in 2 weeks and hope to get some plants in then.
This Friday, I go back for my last infusion of Ino (They split the dose into two days, a week apart). I guess this affects my counts too, so hopefully I won’t be feeling too bad next week? Then I’ll wait a couple weeks and we’ll see if it worked. If it worked, we’ll make the move to transplant. If it doesn’t, back to the dwindling drawing board
Tomorrow I’ll muster up the energy to go trick-or-treating with Alpen cause it was so fun last year. These early years, they’re just too cute and innocent. After Alpen got settled in his costume and realized he was a frog, we tried to find his stuffed-animal frog as a prop. I asked Bree where "froggie" was and Alpen pointed to his head and said "Aqui, Aqui." Too precious. Alpen will be a frog (see pic from Fall Fest part at Jay and Rachels) and maybe Briana and I will provide supporting roles as prey (black flies). Happy Halloween everyone
Alpen was a little reluctant at first L-R Sasha, Avi, Alpen, Asa, Linden, Elle, Miles
October 30th Sunset from the deck
Dr. Cassaday coincidentally just opened a new clinical trial going that is a dose-escalation for Ino combined with a traditional lymphoma chemo cocktail called EPOCH. I was patient #1 in the trial. Although being first gave me a little misgivings (is it safe? Does it work?), it also meant I would receive the lowest dose of Ino which is good for my situation. Seemed lilke the best option on the table, so back to 8SA on October 18th. I checked into the hospital for a 4 night stay, to get going on the EPOCH. It’s a 96 hour infusion, which I tolerated pretty well while I was there, and I didn’t have a cold, so I was able to walk the halls. Being able to leave the room makes a huge difference. Had some good visits from friends and family while I was there and the whole thing went pretty fast. Plus they now have Beyond Burgers--the pea and bean protein burgers covered in coconut oil (I ate 3)-- which makes the eating experience a little nicer too.
I got out mid-week last week and then on Friday had my Ino infusion at the SCCA. It’s nice to do outpatient. I don’t have any liver pain, so I assume I didn’t get a severe toxicity, although we didn’t check the liver enzymes yesterday, which I put my faith into Dr. Cassaday that he knows what he is doing. As expected, my other blood counts did go down because of the chemo last week. So I’m down on the my neutrophils to 60. I dunno I might have bottomed out today. During this time, I feel rather cruddy and vulnerable to infections, so I don’t do much. On top of this, I developed a cold over the weekend, my first one since June. Takes me back to all last spring. I forgot how shitty it is to cough all night. And unfortunately, it’s bad timing cause my body can’t really fight it until the neutrophils come back. So it’s a wait of bad feelings and tiredness. It’s also bad timing cause Seattle is having a dry spell and it’s been wonderful 50s and crisp and sunny for the last week and i haven’t been up to working in the yard. It’s perfect planting weather, so I’ll guess I’ll just have to wait til I’m feeling better in 2 weeks and hope to get some plants in then.
This Friday, I go back for my last infusion of Ino (They split the dose into two days, a week apart). I guess this affects my counts too, so hopefully I won’t be feeling too bad next week? Then I’ll wait a couple weeks and we’ll see if it worked. If it worked, we’ll make the move to transplant. If it doesn’t, back to the dwindling drawing board
Tomorrow I’ll muster up the energy to go trick-or-treating with Alpen cause it was so fun last year. These early years, they’re just too cute and innocent. After Alpen got settled in his costume and realized he was a frog, we tried to find his stuffed-animal frog as a prop. I asked Bree where "froggie" was and Alpen pointed to his head and said "Aqui, Aqui." Too precious. Alpen will be a frog (see pic from Fall Fest part at Jay and Rachels) and maybe Briana and I will provide supporting roles as prey (black flies). Happy Halloween everyone
Alpen was a little reluctant at first L-R Sasha, Avi, Alpen, Asa, Linden, Elle, Miles
October 30th Sunset from the deck
Wow, Patient #1?! That's pretty wild. Sounds like the treatment makes sense, and it sounds like good news that you didn't perceive any severe liver toxicity. I hope trick or treating went well and that the cold is on the mend. Keep us posted!
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