Wednesday, 3 February 2016

What drugs/supplements are important to take during radiation?

After going to Dana Farber and Memorial Sloan Kettering we decided to go with radiation (for the second time) and continue on TMZ. We did have an apto with CTCA but will be canceling that. Here is a little background as this might help others in similar situation.
Husband at age 28 was diagnosed 5 years ago with oligoastrocytoma grade III debatable to be grade IV (left frontal lobe). MGMT status, IDH 1 mutation, some amplification of EGFR but NOT the V3 mutation, and loss of 19q but NOT 1p (more astrocytoma behavior). Had part of left frontal lobe resected, did radiation w/ low daily dose of TMZ, had a month off from treatment then took TMZ 5/23 schedule for 1 year. Tumor went into remission. 4.5 years later (July/15) MRI revealed aggressive tumor growth going from left frontal lobe to right frontal lobe (it looked huge to me). I was desperate and started researching online, found out about Ben Williams and Cheryl Broyles, which led me to this blog eventually. The only option was trying to get into a clinical trial or do Avastin (at that tie we did not have the genetic testing done). Once we found out the MGMT status we just went for the solo treatment of TMZ 5/23 as my husband was declining (sleeping most of the day, forgetting what we did on that day, having more headaches). I started him on many supplements and a few drugs as they are hard to obtain (I'm listing his cocktail below). I also want to mention that we have been praying a lot and asking God for guidance, which in some cases he answered my questions just like I asked. My husband started TMZ in august and had MRI every two months which showed amazing results each time. If I have to picture the results, it's like being an orange transformed into average size strawberry (sorry I do not know the measurements). Then january's MRI revealed a new tumor growth (like a small grape) on the right side behind the old tumor. The old tumor still showed decrease in size. His TMZ cycle was placed on hold which scares me, but they said we needed to figure out what we wanted first. There are no spots for him for clinical trials right now according to Dana Farber, Memorial Sloan Kettering and Duke. One place said they can do radio-fraction radiation to the whole area (not just the new tumor) for 10-15 days and continue on low dose TMZ, BCNU, CCNU or PCV. They prefer to radiate the whole area because it's been almost 5 years since last radiation. Another place said that radiating the whole area could cause more harm then good, so they prefer radiating the new tumor only with TMZ low daily dose as this can act as a sensitizer to radiation and it has continued to work with the other tumor. Very confusing specially when we don't know anything about that, so I'm hoping that they choose whats best according to their expertise. I did ask about off label meds and of course no one is in favor of that telling me that there is no evidence or studies done in human, etc. They did mention the immune therapy drug but told me insurances may not approve the drug because it's extremely expensive. One of the NO was ok with taking all of the supplements but did tell me NOT to have him take any antioxidants during radiation because it can work against radiation and in favor of the cancer cells.
So what do you all know about antioxidants during radiation?? Has anyone taken any supplements during the radiation? I don't want to give my husband things that can potentially interfere or work against the treatment. I want to do whatever may help his radiation and TMZ work better. I might not be able to get some or any drugs that are helpful but I have to try it!

Can anyone tell me what drugs/supplements to take during radiation and TMZ and what drugs/supplements NOT to take it?? I'm trying to put together a cocktail approach for this new treatment approach. I'm forever grateful for any info/help anyone can provide. I know that for some doctors our loved ones are just a number, another unlucky patient, but for me my husband and my two children are all I got here and I just have do everything in my power to keep him with us longer. I know that God is in control of everything but we have to our part too. The night before his MRI I actually dreamed exactly what happened, we were in the office with the doctor and she pulled the images and told us that the MRI showed a new tumor. Everything happened the same way, even how she told us. I woke up at 4:20am , got on my knees and prayed. Told my husband that I was concerned about his MRI and told him about my dream before we left the house. I feel that God was warning me, to prepare myself so I wouldn't get desperate. And it worked! I was disappointed but I felt that maybe we can beat this too.

Sorry for the long post and thank you in advance for your input. Below is my husband's cocktail approach while he was on TMZ solo.

 Vit D 5000 u once daily

Genistein 125mg every other day
Milk Thistle 250mg twice daily,   now on 750mg daily
Fish oil 5000mg divided in 2 doses daily
Lycopene 20mg daily
Green tea Extract 750mg twice daily
 Trans Resveratrol 250mg twice daily 
CoQ10 200mg twice daily
Garlic 600mg daily
Boswellia 400 mg twice daily
Curcumin 400mg twice daily
Quercetin 200 mg twice daily
Bromelain 200mg twice daily (to help absorb curcumin)
Anti Fatigue complex daily (w/ vit D, Mag, Selenium, ALC, ALA)
Multivitamin daily
Coriolus versicolor 1800mg nightly from mushroom science
Melatonin 20mg nightly

TMZ 450mg 5 days on/ 23 days off
Keppra 500mg twice daily for seizure (had 2 in the past)
Metformin ER 1000mg daily as off label 
Omeprazole 20 mg daily (40mg twice daily 3 days before TMZ until 2 days after) as off label
Simvastatin 20mg daily as off label, but his cholesterol was high when we checked
Celebrex 200mg daily  as off label (was not faithful to this one because of his drops in PLT) taking it daily now while he is off chemo and plan on keeping it that way.

What am I missing that is very important?? I know I need to get CBD/THC but that's illegal here so not sure how to get it.

1 comment:

  1. I will come back and comment more later. But if he is at all inclined to try a restricted diet such as ketogenic, during radiation would be the best time to do it. Also you may find more ideas on the Radiation page at Astrocytoma Options.