Day 63 of 56 - Delayed Intensification
Delayed Intensification is 56 days long and it is the fourth phase of frontline treatment. Frontline is the initial portion of the 3.5 year treatment for acute lymphoblastic leukemia.
1 (added an extra week on to the treatment)
Days Spent Impatient:
• 2 intrathecal chemo doses via lumbar puncture
• 8 doses of IV chemo, Vincristine, Pegaspargase, Cyclophosphamide, Doxorubicin.
• 8 at home doses of chemo, Cytarabine (ARA-C)
• 14 Days of oral chemo, Thioguanine.
• 2 weeks spent neutropenic (ANC 0 +/-)
• 8 clinic visits, 13 lab blood draws
• methotrexate (MTX), IT
• doxorubicin (DOXO), IV
• vincristine (VCR), IV
• pegaspargase (PED-ASP), IV
• cyclophosphamide (CPM), IV
• cytarabine (ARA-C), IV
• thioguamine (TG), PO
• dexamethasone (DEX), PO
Symptoms we had:
You can see my post about the reaction here:
Symptoms we missed:
The waiting and the anxiety for Lukas to go home accessed so he could get his four doses of ARA-C at home from a home health care nurse that came two weeks in a row. Also, knowing that his counts are going to drop and that we could be put on a hold at some point or be hospitalized (and we were--twice). After our first hospital stay, where he was access and running around like the Mayor of the floor, it eased my nerves of spending FOUR days accessed at home. Being on a chemo hold is a double-edge sword. As much as you welcome a nice break for the body to recover, you are also fearful that he is not getting his treatment and hoping that it will not effect the outcome.
I spend most of the first three phases incredibly worried and nervous for DI. I read so many posts on FB about how hard, scary, and terrible it was going to be, that I set myself up for it to be just downright miserable. Everyone had a story about their reaction to PEG. I was extremely worried that was going to happen to me (and it did). Most of my questions to our nurses and oncologist revolved around DI--you could tell I was dreading it. It was hard and exhausting, mainly from an anxiety-ridden standpoint as detailed above. It was long and tiresome and I am just glad its over. But if I have to search out a surprise it would be how well Lukas did with the Cytarabine (ARA-C) chemo that was administered via infusion at home. He was a champ when it came to taking all of his medicine each night and even started to give it to himself. He was so proud of himself that he was able to take it and push the syringe of medicine into his little mouth. He would turn to me with a huge grin on his face saying, "I did it!"
We are coming to an end of ANOTHER milestone, we made it through the fourth phase of treatment. We are on day 63 of 56, we got a TWO week break of no chemo, but had to have counts checked each week. We will be going back to clinic this Friday to check counts again to see if Lukas is able to start our next phase - Interim Maintenance #2 with a spinal tap.
Lukas' numbers were a bit higher this week than the previous weeks hospital stay. They were not in the "normal" range for him, but he was high enough that he didn’t need to have any transfusions of blood or platelets.
To put some perspective on what all this means here are his numbers with the normal levels in parentheses:
• Platelets: 88 (normal 150-400)
• Hemoglobin: 9.3 (12-16)
• ANC: 390 (1200-8000)
For Lukas to have a blood transfusion, his hemoglobin needs to be under 7.0 (which he was while impatient at the hospital last week and got 2 transfusions). To receive platelets, he needs to be at/under 10 (his platelets were at 2 during his hospital stay and he got 2 transfusions ).
If his number are good this week, we are on to the Interim Maintenance #2 phase!
To start the next phase:
Platelets need to be 75
ANC needs to be 750
If they are not, we will have to wait another week and try again hoping his numbers will increase in that time being.
Delayed Intensification is over. THANK GOD!