Showing posts with label mind-body_connection. Show all posts
Showing posts with label mind-body_connection. Show all posts

Thursday, 28 July 2016

New to GBM

Hi, my first post here so I hope I'm doing this right.  My husband was diagnosed with GBM on June 13th of this year...on the day my baby turned 8 months old.  One night when he was working late at home, he started having chills and feeling cold and started having a seizure in bed while we were sleeping.  He had 3 seizures that night and went to the ER and a mass was detected on his scans in his right parietal lobe.  He had surgery the very next day and the neurosurgeon said it was 99% removed.  At the time, they detected something else on the scans in his right temporal lobe...(I believe it was his first scan at the ER) that showed something, but they couldn't give us a definitive answer of what it was.  They said it could be swelling, but based on most recent scans, the NO said he thinks it's progression and that if it is, it's most likely inoperable and they will know for sure after chemoradiation is over.  I'm scared to death about the new find, although he suspects that it's not as aggressive as the one that was removed.  I'm not sure what he means by "progression" if it was there from the first scan and not as aggressive.  Wouldn't it be more appropriate to call it as another tumor rather than progression from his first tumor?  Am I not comprehending things correctly?  I ask this here as I am never able to accompany my husband to his appointments as I have my infant son and another 8 year old son and I don't have anyone to watch them.  I feel really helpless at times and focus whatever free time I have looking up what supplements and diets could possibly help him.  My research, however, is often not thorough as I am constantly interrupted by an unsleeping baby and an active 8 year old.  I'm hoping you wonderful members/contributors could help me out and take a look at the list of supplements I have compiled so far.... It's been a work in progress as my research evolves and I have taken out some, only to add others.

From what I can make out of his pathology report, my husband is MGMT unmethylated and IDH1 and IDH2 negative.  My SIL, who has been taking him to all his appointments, has sent in for Foundation One report so we are still waiting on that.

But this is what I have so far for my husband.  Please let me know if there is anything that is unnecessary as I feel bad that my husband has so many pills to take all throughout the day.  Also if there are any I should add and if my dosage should be increased, etc.  I would ever so appreciate it!  I was attempting to put him on a Ketogenic diet, but I'm too afraid to attempt as he has already lost some weight.  He went from 200lbs down to 185, which is still an average size, but he seems to have lost some muscle.  I am waiting for my Wokvel Boswellia extract to come so I can add that to his list as well.  If I add this, would it be safe to take out the Dex?  Right now I am putting him on a mostly organic diet with fresh veggies/soy/chicken and avoiding nuts because of Omega 6 and sugars and white starches.  I also wanted to add that my husband is going on week 4 of chemoradiation and has been getting good blood count results and has been able to work every day from morning till 4-5pm. Thank you so much if you are reading this!

Rx meds
Taken w/o food
Dexamethasone 20mg (1) 8AM
Famotidine 20mg (1) 8AM
Losartan 100mg   (1) 8AM
Levetiracetam 500mg (1) 8AM/ (1) 8PM
Zofran (1) 8PM
Temodar (2) 9PM




Supplements
Taken before a meal:
Berberine 500mg (1) 8AM/ (1) 5PM
Longvida Curcumin 500mg (2) 8AM/ (2) 5PM
Resveratrol 500mg (2) 5PM

Taken w/o food:
Life Extension Milk Thistle 750mg (1) 8PM
Melatonin 5mg (4) 9PM

Taken with food:
Red Reishi Mushroom 500mg (2) B (2) L (1) D
Fucoidan 310mg (5) B (5) L (6) D
Mushroom Science PSK/PSP 500mg (2) B (2) L (2) D
Mushroom Wisdom Maitake D Fraction Professional Strength (2) B (2) L (2) D
Green tea extract 750mg (1) B (1) L (1) D
Omega 3 Fish Oil 1100 mg (1) B (1) L (1) D

Life Extension Pteropure 50mg (1) B (1) L
Life Extension Soy 135mg (1) B (1) L
Vitamin D3 10,000IU (1) L
Life Extension Mega Lycopene 15mg (1)L
Probiotic 46mg (2) L
True Veda Ashwagandha 300mg (1) L