Pics: at the PCMC clinic June 14th, just a hair under my diagnosis weight now, playing with my cousins, one of them broke both arms, riding the lawnmower with grandpa, and 'fixing' the trike. The first half of June was really fun!
(Written on facebook June 3, 2011)~~I have had people ask me about the meds he is taking, it's complicated and hard to explain so I'm going to write it down here in case you are interested ina more detailed idea of what he took, is taking, and will be taking. His
treatment lasts a little over three years total, no matter what. I don't have the treatment details of the last phase yet, which is called maintenance, but I have heard that it is chemo once a month, steroids sometimes, and spinal chemo every three months.
Phase one (Induction)
This phase is designed to put the leukemia in remission, which means no leukemia is detectable in the body.
He received a blood transfusion the night we got there, another one while we were there, and also platelets to get ready for surgery
29 days long
Days 1-28: dexamethasone pills by mouth twice a day
Day 1: cytarabine in the spine and vincristine IV, surgically inserted power port for future IV's, bone marrow aspirate
Day 4: Pegaspargase IV (released from the hospital this day)
Day 8: methotrexate in the spine, vincristine IV (outpatient oncology clinic at PCMC), he had to get platelets this day too
Day 15: vincristine IV (outpatient oncology clinic at PCMC)
Day 22: vincristine IV (outpatient oncology clinic at PCMC)
Day 29: methotrexate in spine (outpatient oncology clinic at PCMC)
The main side effects he experienced during this phase were increased appetite (big time!! and didn't want anything sweet), woke up in the night to eat, irritated easily (like when I breathed on him), long crying spells over little things, ignored everyone and didn't want to play, pain in the tummy and legs, didn't want to walk much, and has to use his hands to go up stairs-I think that had to do with muscle weakness, and leg pain. He lost a little hair toward the end of the month, but hasn't lost much since. He also had a really big tummy and a really round face from the steroids.
Phase 2 (Consolidation)
28 days long
Days 1-28: Mercaptopurine (6MP) pill by mouth once a day
Day 1: Methotrexate in spine, vincristine IV (outpatient oncology clinic at PCMC)
Day 8: Methotrexate in spine (outpatient oncology clinic at PCMC)
Day 15: Methotrexate in spine (outpatient oncology clinic at PCMC)
He is just starting this phase, he is much happier and his appetite has tapered off considerably. He wants to play a lot more, and he is still a little chubby from weight gain, but the roids puffiness is gone. He still has to 'crawl' up stairs and his legs are wobbly and weak which I think is still from the vincristine and dexamethasone.
~Consolidation Update~ Ty had to get a blood transfusion on day 15, (June 14) and his ANC dropped to 100 that day (0.1) which was a big surprise to me because it had been so high up until then. It stayed low for several more weeks and we had two five day stays at the local hospital for fever/infection/neutropenia. He got another blood transfusion and platelets on July 3rd. We had to postpone the start of the next phase for three weeks because his ANC had to be at least 750 to go. It finally reached 1800 on July 18th so we started Phase 3 July 19th. The side effects were pretty mild during this phase. He preferred blander food, ate a lot of cereal, and said, 'what's that smell' a lot, so I think he was feeling a bit nauseous. His hair grew a little bit. He was much happier, stronger, and more energetic than he was during Induction.
Phase 3 (Interim Maintenance I)
8 weeks long (July and August I think)
Days 1, 11, 21, 31, and 41: methotrexate by IV and Vincristine by IV
Day 31: methotrexate in the spine too
Phase 4 (Delayed Intensification) This one looks nasty!!
8 weeks long (September and October I think)
Days 1-7, and 15-21: dexamethasone pills by mouth twice a day :(
Days 1, 8, and 15: Vincristine IV and Doxorubicin (I've heard this one is nasty..mouth sores etc and he'll probably loose the rest of his hair during this time)
Day 4: pegaspargase IV
Days 1 and 29: methotrexate in the spine
Days 29-32 and 36-39: cytarabine IV
Days 29-42: Thioguanine pill by mouth
Day 29: cyclophosphamide IV
Phase 5 (Interim Maintenance II)
8 weeks long (November and December?)
Days 1, 11, 21, 31, 41: methotrexate IV and vincristine IV
Days 1 and 31: methotrexate in the spine
After this he starts maintenance phase and I don't have details about this one yet and won't until he finishes all of this because he is in a clinical trial and he will be randomized into a certain arm of treatment pertaining to the clinical trial. (Update, he was randomized into arm B which is double oral methotrexate. (10 pills every Thursday) 1 6mp every night, IV vincristine once per month, and mtx in spine every 3 months. Don't quote me on this...recalling it from memory several years later...you will see if you continue reading the blog that he didn't stay on this regimen for long as they had to reduce his doses)
This phase is designed to put the leukemia in remission, which means no leukemia is detectable in the body.
He received a blood transfusion the night we got there, another one while we were there, and also platelets to get ready for surgery
29 days long
Days 1-28: dexamethasone pills by mouth twice a day
Day 1: cytarabine in the spine and vincristine IV, surgically inserted power port for future IV's, bone marrow aspirate
Day 4: Pegaspargase IV (released from the hospital this day)
Day 8: methotrexate in the spine, vincristine IV (outpatient oncology clinic at PCMC), he had to get platelets this day too
Day 15: vincristine IV (outpatient oncology clinic at PCMC)
Day 22: vincristine IV (outpatient oncology clinic at PCMC)
Day 29: methotrexate in spine (outpatient oncology clinic at PCMC)
The main side effects he experienced during this phase were increased appetite (big time!! and didn't want anything sweet), woke up in the night to eat, irritated easily (like when I breathed on him), long crying spells over little things, ignored everyone and didn't want to play, pain in the tummy and legs, didn't want to walk much, and has to use his hands to go up stairs-I think that had to do with muscle weakness, and leg pain. He lost a little hair toward the end of the month, but hasn't lost much since. He also had a really big tummy and a really round face from the steroids.
Phase 2 (Consolidation)
28 days long
Days 1-28: Mercaptopurine (6MP) pill by mouth once a day
Day 1: Methotrexate in spine, vincristine IV (outpatient oncology clinic at PCMC)
Day 8: Methotrexate in spine (outpatient oncology clinic at PCMC)
Day 15: Methotrexate in spine (outpatient oncology clinic at PCMC)
He is just starting this phase, he is much happier and his appetite has tapered off considerably. He wants to play a lot more, and he is still a little chubby from weight gain, but the roids puffiness is gone. He still has to 'crawl' up stairs and his legs are wobbly and weak which I think is still from the vincristine and dexamethasone.
~Consolidation Update~ Ty had to get a blood transfusion on day 15, (June 14) and his ANC dropped to 100 that day (0.1) which was a big surprise to me because it had been so high up until then. It stayed low for several more weeks and we had two five day stays at the local hospital for fever/infection/neutropenia. He got another blood transfusion and platelets on July 3rd. We had to postpone the start of the next phase for three weeks because his ANC had to be at least 750 to go. It finally reached 1800 on July 18th so we started Phase 3 July 19th. The side effects were pretty mild during this phase. He preferred blander food, ate a lot of cereal, and said, 'what's that smell' a lot, so I think he was feeling a bit nauseous. His hair grew a little bit. He was much happier, stronger, and more energetic than he was during Induction.
Phase 3 (Interim Maintenance I)
8 weeks long (July and August I think)
Days 1, 11, 21, 31, and 41: methotrexate by IV and Vincristine by IV
Day 31: methotrexate in the spine too
Phase 4 (Delayed Intensification) This one looks nasty!!
8 weeks long (September and October I think)
Days 1-7, and 15-21: dexamethasone pills by mouth twice a day :(
Days 1, 8, and 15: Vincristine IV and Doxorubicin (I've heard this one is nasty..mouth sores etc and he'll probably loose the rest of his hair during this time)
Day 4: pegaspargase IV
Days 1 and 29: methotrexate in the spine
Days 29-32 and 36-39: cytarabine IV
Days 29-42: Thioguanine pill by mouth
Day 29: cyclophosphamide IV
Phase 5 (Interim Maintenance II)
8 weeks long (November and December?)
Days 1, 11, 21, 31, 41: methotrexate IV and vincristine IV
Days 1 and 31: methotrexate in the spine
After this he starts maintenance phase and I don't have details about this one yet and won't until he finishes all of this because he is in a clinical trial and he will be randomized into a certain arm of treatment pertaining to the clinical trial. (Update, he was randomized into arm B which is double oral methotrexate. (10 pills every Thursday) 1 6mp every night, IV vincristine once per month, and mtx in spine every 3 months. Don't quote me on this...recalling it from memory several years later...you will see if you continue reading the blog that he didn't stay on this regimen for long as they had to reduce his doses)
He also had Septra once per week and during maintenance switched to Dapsone
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