I've mentioned stuff on here before about his treatment cycle but thought I'd write out something a bit more organized for everyone.
He has 8 total cycles of chemo, each lasting 21 days. This treatment is referred to as "Hyper-CVAD" regimen.
Schedule A is cycles 1,3,5, and 7.
Schedule B is cycles 2, 4, 6, and 8.
Here are two links that have explanations of A and B.
This one has a more general explanation:
And this one has more detail:
These drugs are administered thru his Hickman line.
He is typically in the hospital for the first 4-5 days of every cycle.
His cycles always start on a Monday.
He also has intrathecal chemo on days 2 and 8 of every cycle.
I typically refer to it on here as his "spinal tap chemo" because that's more readily understood terminology.
He gets Methotrexate on day 2 of each cycle and Cytarabine on day 8 of each cycle.
These are both drugs he gets during his Schedule B treatments. (much lower doses in his spine tho)
After every spinal tap he has to lay perfectly flat for 4 hours to prevent spinal headaches. His very first spinal tap before treatment started (which was to check for cancer cells there, he doesn't have any) he ended up with a very very bad headache and had to get a procedure called a blood patch done to ease the pressure and get rid of the headaches.
Schedule A he has outpatient chemo (the vincristine) on day 11 at the Cancer Center.
So basically for the first 5 days of every cycle he is in the hospital for treatment.
He goes home for days 6 and 7(Saturday and Sunday) and goes back for his outpatient day 8 spinal tap chemo (Cytarabine).
On day 8 he also has to go to the cancer center, which is across the street from the hospital, when he is released from the hospital.
He has blood draws on days 8 and 15 of every cycle at the cancer center. He has to get GM-CSF shots to help boost his white blood cell count depending on what his blood levels read.
Here is a link about GM-CSF shots:
This cycle, like the last one, he'll have the GM shots on days 8-13. They make his chest hurt and give him flu-like symptoms.
Day 15 of every cycle he also meets with his Dr and depending on the results of his blood draw that day he doesn't have to get the GM-CSF shots. His first cycle he was off of the shots or visits to the cancer center for the remaining days, 16-21.
Since the shots are completely dependent upon his white blood cell levels we can't predict when he will or won't have to get them in the future.
I know that's a heck of a lot of information so let me summarize a bit:
Days 1-5: Schedule A or B depending on which cycle he's on
Day 8: outpatient spinal tap chemo, blood draw, and GM-CSF shots
Days 9-21: chemo at the cancer center on Day 11(only schedule A), blood draw on day 15 and potentially daily GM-CSF shots
Today is day 8 of cycle 2 which is a Schedule B cycle, and is also day 29 of the total 168 days of this regimen.
I hope I have clarified more than confused!
If you have any questions please leave a comment and I will do my best to answer.
He is also taking something like 9 different types of medications on a daily or twice daily basis. Being the organizational freak that I am, I made an excel spreadsheet of all the medications and their info so I can hand over copies to all nursing staff we encounter. I'm also keeping a daily log of sorts so I can keep track of what days and during what cycles he has what symptoms. That way I can easily communicate it to doctors and nurses and attempt to predict how he'll feel during future cycles. For instance on this day of his last cycle he puked about 12 times between the hours of 6:30 p.m. and 10:30 p.m. That is the worst day he has had so far. We made sure he took any and all nausea meds available to him before we went to the hospital this morning and got more meds while he was there. I've been making sure he's staying in bed since he's been home, in an attempt to ward off any ill-effects of the spinal chemo and GM-CSF shot.
Here is also a summary of his future cycle dates:
cycle 3 (Schedule A): starts September 6th
cycle 4 (Schedule B): starts September 27th
cycle 5 (Schedule A): starts October 18th
cycle 6 (Schedule B): starts November 8th
cycle 7 (Schedule A): starts November 29th
cycle 8 (Schedule B): starts December 20th
If all goes according to plan his last outpatient spinal tap chemo will be December 27th and his last cycle will end on January 9th. Our son turns 3 on January 18th, wow!
After he is done with this regimen he will need to be on maintenance chemo for 2-3 years. Maintenance chemo is strictly outpatient and he is supposed to be able to resume normal activities while on it.
We mostly focus getting thru the days and not the long stretch of treatment ahead of him, otherwise it is far too easy to get overwhelmed.
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