Treatment plan

CAUTION - diatribe ahead. Proceed at your own risk!

First, read this: http://mct.aacrjournals.org/cgi/content/full/5/8/1905 (thank you, Vikki)

Then, read this: http://cancer.ucsd.edu/aboutus/News/stories/fatigue.asp

You should now understand the reason we started MagicWater.

Now, read this: Max's treatment plan (Microsoft Excel file), developed by Max's team: myself, Melissa, Drs. Roberts and Sholler, Neil, Pat and Meryl. (plan also pasted below)

Last night, I was building the plan out on my laptop on the kitchen table, after two and a half days of emails, phone calls, & conference calls.

After reading the first two links above, you'll see why Max has to enter uncharted waters yet again in hopes of finding a treatment that will control his cancer (control being all that we're hoping for now).

We have good hope for this treatment, but we know the odds are against us. Our goal is to give Max's body all the help it needs to stay healthy, but also be aggressive in beating back this latest progression. If we can get back to stable, we'll adjust the treatment accordingly, then work extra hard to help try to find a long-term treatment solution.

For now, it's "all-hands" as his new treatment requires daily chemo, precise timing of adminstration of supplements, and diligent monitoring of progress (or lack thereof) of the treatment via blood and urine samples, MIBG, CT and MRI scans.

Dr. Sholler is also growing Max's cells in her lab and will be able in 2-3 weeks to test different agents against his specific neuroblastoma cells. This is part of the personalized medicine project being funded by MagicWater. This could help save Max's life by determining what treatments have the best chance of working before trying them on Max, and is widely regarded as the future of cancer treatment.

Max's new treatment protocol for next 2 rounds (6 weeks)
1. Irinotecan (10mg/m2 5 days IV x 2 weeks) topoisomerase inhibitor (chemo)
2. Temodar (100mg/m2 PO 5 days) alkylating agent (chemo)
3. Nifurtimox (20mg/kg PO divided TID - 4 pills per day 1 AM, 1 noon, 2 PM) oxidative stress
4. Zometa (4.0 mg/m2 IV over 1 hour) increase bone density
5. Rapamycin (3mg/m2 PO on Day 1, then 1mg/m2 PO on Day 2-7, on week 3) mTOR inhibitor
6. Genestein (250mg AM/PM) AKT inhibitor
7. Celebrex (100mg AM/PM) COX-2 inbitor
8. Glutamine (2g in AM) for Celebrex
9. Skullcap (400mg AM/200mg PM) lowers IL-8
10.AHCC (1500mg AM/PM) elevates NK function
11. Tauroxicum (2 drams/AM) lowers IL-6 and c-reactive protein
12. IP6/Inositol (1530mg 3x/day) lowers plasma VEGF
13. Zinc citrate (30mg PM) lowers ceruloplasmin
14. Calcium (500mg AM/PM) For Zometa
15. Vitamin D3 (1200IU PM) For Calcium
16. Radiation (S2, S3 vertebral bodies)


San Diego Mom said...

With a risk of also being diatribe (and offending breast cancer patients and survivors who might be reading this), I will say I get a little bit annoyed when I see pink labeled merchandises displayed at groceries, departments stores, and catalogs. Yeah, sure, women are the purchasing power. Get on board, put on a little pink ribbon, donate certain percentage to the Foundation and you got yourself another brand line. It is getting too much these days.
God speed as you navigate this uncharted path of treatment. May you receive all the courage and will power to move ahead and also peace in mind, knowing this is the best gift you can give to Max. Never give up! Shiho

Randee said...

You are going to beat this--you have given this 200%--no doors unopened--every avenue investigated. Your love and commitment to getting Max well gives you such an advantage over the "clinical researchers". We will continue to pray that through this Max will be healed along with Will and Sam and all the other little NB warriors out there. I pray for the love of Jesus to strengthen and guide you. Love and prayers, Randee

Will's Dad said...

Kick ass Max.

By the way...has magicwater thought about funding a 1/4 million dollar study to monitor the sleep patterns of 100 relapsed NB kids? This might go a long way towards increasing our further understanding of how a lifetime of chemotherapy impacts the sleep patterns of incurable children. Where can I sign my son up? I hope it is soon so that we can enroll before disease progression takes his life.


Anonymous said...

Andy and Melissa,

Great plan in RECORD time!!! I LOVE the photos of beautiful, gorgeous, spectacular Max (-:

Did curcumin get thrown out? Maybe at least do it during the radiation phase...



Anonymous said...

I think Pat is on to something...but perhaps Magic Water could instead spend the quarter mil on the sleep patterns of the NB warriors' parents. Geesh; they only sleep 4-5 hours a night (if that) for years as they fight this monster yet they still function. Perhaps it's a genetic difference (the NB warrior parent chromosome) or maybe how much florescent light they receive as they pace the hallways of hospitals...

Glad the team has a battle plan drawn! "Man the cockpits," as Max says. We're going to win this!

PS I thought Will's dad was unplugging...

Vickie said...

I hope this hits a homerun.

Max is so photogenic. I love both photos. His eyes simultaneously show that he knows the world (in the sense that cancer children "know" things that other children don't) and that he is ready to play a trick on the world. I hope his trick is beating the odds.


Erin Newman-Smith said...

Godspeed to Dr. Sholler. I hope she can find something that kills those cells at a nice low dose that Max easily tolerates. Your family is in our thoughts.

Erin --cousin

awrightsd said...

My daughter, Delaney, fighting relapsed AML leukemia was on the Phase I trial of clofarabine at MD Anderson Cancer Center in Houston Texas. The good news is that the clofarabine worked. The sad news is that her body was not able to keep up with all the leukemia breaking down. She went into septic shock and is a beautiful angel in heaven.

Delaney's website: www.caringbridge.org/ca/delaney

Never give up, we didn't and we know you won't.

Mom to Angel Delaney, Kevin and Shelley

Anonymous said...

Max is so beautiful...his eyes just melt me..he looks at life in such a sweet way..The photos are fabulous! Just want to squeeze him! I pray that this new treatment will work for Max..keep up the fight...go get em Max!! xo Linny

Anonymous said...

Right on and "amen" Lisa!....Papa

Post a Comment