Diagnosed at surgery 12-1-2014, near gross total. GBM-4. UCSF. Standard of care. Finished 6th round of chemo in July 2015. PTEN deletion - positive. EGFR - negative. MGMT - positive.
7-13-15: No tumor progression.
9-11-15: Some enhancement: edema or progression?
9-17-15: Tumor Board called progression.
9-28 to 30-15: Toca 511 Trial daily infusions at UCSF
10-26-15: Seizure, MRI demonstrating increased enhancement
10-30-15: First round Toca 5-FC pills (19 pills x 3 x day x 7 days = 399 pills)
11-20-15: Avastin infusion.
12-02-15: Neuro-opthamologist confirms right side vision loss as function of tumor.
12-04-15: MRI shows improvement. Avastin infusion. Second round Toca 5-FC pills begins.
Prescribed Meds:
Keppra - 1250 mg - 1 ea 2 x per day
Decadron - 6 mg - 4 mg 1 x per day, 2 mg 1 x per day
Lovenox - 100 mg injection - 2 x per day (for blood clot)
Metformin* - 500 mg - 1 ea 3 x per day
Toca 511 Trial (See Post "For Those Interested in Toca 511 Trial")
Avastin - 985 mg infusion every other week
Supplements:
Curcumin Longvida - 500 mg - 1 ea 2 per day
Moringa Oleifera** - 4 g - 5 ea 2 x per day
Boswellia - 600 mg - 1 ea 2 x per day
EGCG Green Tea - 500 mg - 1 ea 2 x per day
Fish Oil - 1 ea 2 x per day
Pterostilbene-Blueberry 50 mg - 3 ea 1 x per day, 2 ea 1 x per day
Vitamin D3 - 5000 - 1 ea per day
Zinc - 50 mg - 1 ea per day
Melatonin - 20 mg - 1 ea before bed
Coriolus Super Strength - 600 mg - 3 ea 1 x per day, 2 ea 1 x per day
Myricetin - 100 mg - 1 ea per day
Added 12-01-15 to synergize Avastin:
Cannabis Oil (from Aunt Zelda) - 200 mg CBD
DCA 330 mg 3 x day and Vit B-1 500 mg 2 x day (weekdays only)
Honokoil 500 mg 2ea 2 x day
*Purchased originally from KiwiDrug.com. Now prescribed by PCP.
**Not part of typical cocktail but something known to Gilford family and Chance requested.
Thanks for the comments Jude. And congrats to you and Chance. Lets all keep the good news coming.
ReplyDeleteCongratulations for the MRI!
ReplyDeleteThank you, Mike and Matias. Feel your strength and determination. And appreciate it.
ReplyDeleteCongrats on the. MRI! And thanks so much for mentioning Kiwi site for Metformin. How long does it take them to ship to the US? Wish I could find Celebrex as well, I run out so fast.
ReplyDeleteAmber - Very good service from KiwiDrug - maybe 7 days. I bought Celebrex there too, but Chance has stopped taking due to the blood clot. I looked at a lot of sites before I tried KiwiDrug since it's a scary thing buying without a prescription.
ReplyDeleteThank you very much. I looked and they asked for Dr's name and phone number. Do they really check on that or I can just put in whatever I want?
DeleteWhere do you get Metformin without an RX? Thanks, Danny
DeleteDanny, I purchased metformin and celebrex at KiwiDrug.com
DeleteJude,
DeleteWhy do you need to stop Celebrex when treating for a blood clot?
Hi Alan, It was a concession to his doctors: NO and hemotologist were against Celebrex with either Coumadin or Lovenox. We didn't want either of those choices. We wanted Magnesium and Chance started ramping it up. We had an appointment with the hemotologist in October and we were going to tell him we were relying on Magnesium and giving up the Lovenox. Before we could have that appointment, Chance had a seizure. Now that he seems to have stabilized, we're considering how to proceed. Open to suggestion or discussion!
DeleteHi Amber, There should be no problem. Look at this part of the website: http://www.kiwidrug.com/regulation/. You provide your actual information, and they create a prescription for you.
ReplyDeleteThank you. I got to the final page and they only offered me to pay by check "based on my location". I did not want to provide my checking account info.
DeleteSo sorry this didn't work out for you, Amber. Wish I could be more helpful. I didn't run into any of the issues, but totally understand your concerns.
ReplyDeleteJude, how long have you been working with Zelda? I see Chance takes twice daily. I noticed some take oil ONLY during chemo. Wonder why the difference?
ReplyDeleteHi Cookie - He hasn't managed to get up to full dosage yet. He really dislikes it, as a matter of fact, putting under his tongue and trying to hold while it dissolves, then having it drip down his throat burning all the way! And then he loses his appetite because of the terrible taste in his mouth. Also there's a two-hour window between cannabis oil types and other meds which makes it almost impossible to do if you are only trying to do it in the evenings. Chance is working and doesn't want to take it at work. So, it hasn't turned out as we hoped. I've just order capsules and we'll give that a try. We understand it will still work, but not be so quickly bioavailable. We've only been doing this the last month. This article from Huffington Post, http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html, and the Sanjay Gupta specials on CNN convinced us to give it a try. I hope we can figure it out so Chance can benefit!
ReplyDeleteUpdated today after very hectic month...
ReplyDelete