We have found a oncologist who specializes in skin cancers and trained at MD Anderson. Brandon's doctor at MD Anderson trained him. I really like him. His name is Dr. Mathew Fox. I decided Brandon needed to establish himself with an adult doctor. He believes, as well as a few other of Brandon's physicians, that Brandon should not have any further issues with cancer, but agrees he needs to be followed closely for the rest of his like. I hope that is true.
One area I have not been focusing on is Brandon's lungs. Brandon appears to have consolidation in both lungs and what looks like pneumonia in one. This could be nothing but every test in the last 6 months has indicated this. So I found an adult pulmonologist who is working with us on a plan. In addition, if Brandon's cancer spreads we have been told it would go next to the lungs. So I want to have an established doctor that will help us with both. We have met with him 3 times.
What I have dreaded is that Brandon is now at the end of the treatment with forteo. Forteo is a drug that builds bone and Brandon has been injecting this drug for almost 2 years. In addition, we have added supplements, changed Brandon's diet, added weight bearing exercises and general exercise. Apparently this has paid off. Brandon has gone from almost 4.0 osteoporosis score to right at 2.5 with some portions of his spine at 2.1. He is on the in-between osteoporosis and osteopenia. Really amazing news. I am so proud of him putting up with all the daily injections, daily supplements, change in diet and the exercise. He hasn't complained one time. But it also leads to if and when he will have surgery.
Today we are here in Dallas for Brandon's appointment with his spine surgeon. The spine surgeon is also pleasantly surprised with Brandon's success. He wanted to check Brandon scoliosis to see if there are changes. More good news. Brandon's spine is almost exactly the same as last year. I have to think this is because of the bones getting stronger. So the plan is for Brandon to try and get approval for a 3rd year of forteo or the alternative drug. This will be beyond the norm, but he really wants the best opportunity for Brandon to have a successful surgery. So we will go back to Austin and get a request in for a 3rd year. We also agreed that surgery is no imminent and if Brandon does not decline we wont go forward.
We also both agreed that Brandon needs to recovery from his cancer surgery. I have been watching him the last few weeks and he is more unstable, slower and weaker since the surgery. We need to help Brandon build back muscle in his trunk in order for him to handle a major spine surgery. Brandon started back on physical therapy last week.
And last - Brandon has been at 1/2 activity this summer and we have slowly added back exercise, working full hours, horseback riding, choir, band band band, and recreational therapy. He is not back with all of his schedule. He has been tired, but I think it is because he is not used to this level of activity. I am hoping it will help him get back on a regular schedule.
I would like to leave everyone with Brandon's supplement and diet info. You will note some supplements for brain health. This is based on Brandon's specific gnome but some of the supplements everyone could probably benefit from for memory improvement. Otherwise, we added supplements to help build bone and allow for absorption of vitamin D/calcium. I also added two new supplements and changed the diet slightly for fighting cancer. I hope this helps someone.
All good here in Brandonland. Come out and hear his band the Eddie Ray Band when you get a chance. They are really good.
|
Medication
|
Dose
|
amount
|
Max
|
For
|
|
SEIZURES/BRAIN HEALTH
|
||||
|
Briviact
|
10 mg
|
10 ml
|
10
|
Seizures
|
|
CBD Oil
|
43 mg
|
1 cc in morning 2
cc at night
|
3 cc per day
|
Seizures
|
|
Avmacol
|
60 mg
|
1 a day
|
(2)
|
Seizures, nerve
|
|
NAC
|
600 mg
|
2 x day
|
2
|
Seizures
|
|
Citicholine
|
250 mg
|
2 x day
|
4
|
Nerve, seizures
|
|
Enlyte (GoGo)
|
|
1 capsule per day
|
|
Brain health
|
|
L methylfolate
|
1000 mg
|
2 x day
|
2
|
|
|
BONE HEALTH
|
||||
|
K-force
|
D5000 with K2 180
mcg
|
1 capsule
|
( do 2 caps for 2
weeks)
|
Bone Health
|
|
Probiotic (Vitamin
Ultra)
|
18 strains
|
1 capsule per day
|
|
Helps with
absorption
|
|
Green tea
|
1 bag add to
smoothie
|
1 bag per day
|
|
Bone health/ansorption
|
|
MITOCHONDRIAL
|
||||
|
UBQH 100
|
|
1 to 2 x day
|
3
|
Muscle, mitochondrial
|
|
Lions Mane
|
500-700
|
1 per day
|
Can increase to 3
|
Memory/Mitro
|
|
PRO S.O.D.
|
1600
|
2 per day
|
2
|
Mitochondrial
|
|
|
1 vial in morning 1 night
|
|
Lungs
|
|
|
acetyl L carniture
|
500
|
1 a day
|
2
|
Nerve, muscle, mitro
|
|
CANCER
TREATMENT
|
||||
|
Afaya Plud
|
|
1 a day
|
|
Cancer
|
|
Artemidinin plus
Bioperine
|
100 mg
|
1 a day
|
|
Cancer
|
BRANDON’S SMOOTHIE
FORMULA
SMOOTHIE FORMULA –
·
Use real veggie
and fruit (cocao/Alvacado) in cup by Daily Harvest
Included in cup:
o
Pumpkin Seed
o
Dark Chocolate
o
Greens
o
Dates
o
Alvacado
·
Use as a mixer - Flax,
goat or Almond Milk for the mixer (Flax brand is Good Karma) with mix
below:
o
Coconut Water
o
½ Banana
o
Nutritional yeast
(1 tbl)
o
Matcha
o
Rosemary
o
Blueberries
o
1 tbl chia seeds
