Hello and thank you for creating and adding me to this blog. Sorry for the long post.
My 18 year old son is battling a recurrence of APXA a rare high-grade brain tumor. He just had his 3rd brain surgery on August 27. This one they had to leave tumor behind due to location. This week has been tough, he is having lots of issues with spelling and writing and word finding and is frustrated, also right hand shaking when using it a lot and also very tired. The tumor came back only a little over a year after last surgery on Feb 14, 2019. He had proton radiation with TMZ and later a Mek inhibitor. Stopped TMZ as things looked good and blood counts were low.
His first surgery was for seizures as his tumor was stable for many years. It was total resection and path ganglioglima grade 1. We did not even have mri for 7 months, but when we did there was a new tumor, this one also total resection came back as APXA. EML4-Braf fusion (have not found anybody with this one) CDKN2a/2b deletion and tert mutation(this was new) When we found the recurrance on June 9, we swtiched from Mek inhibitor to a trial for 2nd generation Braf inhibitor TAK-580 but while he felt great on it the tumor grew like crazy. We went from nothing on March 9, to 1cm by 8 mm on June 9 and 3 by 4 cm August 26 day before surgery.
They want him to start PD-1 inhibitor immunotherapy along with stereotactic radiation next week. We are looking at also doing custom peptide vaccine, being offered a company in Mexico, they take tumor tissue to tempus they run genetic sequencing and then created a vaccine to be given along with immunotherapy.
He is clearly suffering from inflamation post surgery as he is having lots of issues he did not have before. He is super weak, especially right side( hand shaking on and off ) sleeping a ton. Started to have headaches this week, never had them before. I am scared on inflation immunotherapy causes.
I had him on
longvida curcumin 400 mg tab curcubrain, boswellia extract 65% 500 mg amandean, nordic naturals ultra omega 3, papay for platelets, B complex 2 times a week his pee was neon, D3 gels 5000 but only 1 a week and probiotics daily. He also eats waffles made from flax and chia egg with lentil flour, buckwheat flour and quinoa flour with manuka honey and crackers with home made raw almond, brazil nut, pumpkin seed and hemp seeds and peanut butter. Sprouted bread toasted with garlic. Smoothie one a day cup of wild blueberry with brocolli sprouts, avocado and cacao and turkey tail mushroom powder.
I think I need higher dosages of these things from what I am reading
4 caps of longvida, should I switch brands? and on empty stomach
8 caps of boswellia not 1 like before
2 caps of rans-pterostilbene, we did not do this before I got the relentless improvement 100 mg
ultimate omega2x will give him 2150 mg omega3 and 1000iu D3, should I do more than 1 serving?
I got trans-pterostilbene and started him on it this week, i also have ashwagandha but not sure if that is needed.
I really want to do cannabis we are in California right now and he has a card, San Francisco, if anybody can advise, would be great. We are here for another week.
Has anybody seen this type of tumor and success treating it when this aggressive?
Has anybody done neoantigen vaccine or know of someone who has we are looking at this https://clinicaltrials.gov/ct2/show/NCT04509167?term=tijuana+and+neoantigen&draw=2&rank=1
We are working with Dr. Kesari on this has anybody here worked with him.
He is also advising we do metformin, statin with all of this and then also add CDK inhibitor and mTor or Mek inhibitor. I am not sure how much his body can handle. He is 5ft 9 and 120lb now was down to 109 while on TMZ.
I welcome all advice, trying to find the right balance of what to do. He can swallow anything so pill number size not an issue. But hates trying new foods and is a super picky eater especially with healthy things and veggies, he loves hamburgers and cheetos and corn chips. I do give him grass fed 93% burgers, whole wheat buns and organic everything.
If you were able to do immunotherapy with supplements/repurposed drugs/any kind of other treatment and had success please share what you did.
Thank you again to everybody here and forgive me if some of this is confusing.
Julia
Thank you for posting. Unfortunately due to the rarity of this disease, there is relatively little data on trying to find things ("cocktail approach") to compliment standard treatment, as there is for GBM. I personally have not studied APXA or PXA, so can't offer any specialized advice.
ReplyDeleteIt seems to me a top priority should be to manage the inflammation and edema in his brain that could be causing lots of those symptoms. Is he on dexamethasone? Have you discussed Avastin (bevacizumab) with his team? Prior use of bevacizumab is an exclusion factor for some clinical trials so that is something to consider if you're looking at trials.
I have met Dr. Kesari and he seems more open to ideas outside the mainstream than some other oncologists. I know he was working with Ben Williams for awhile. Hopefully he will be able to give you useful advice.
One thing I would combine with immunotherapy is the COX-2 inhibitor Celebrex. This may also have some activity against edema and inflammation.
I also wrote an article on supplements that have immune activity on my previous website.
http://astrocytomaoptions.com/re-educating-the-immune-system/
I also summarized some of the evidence supporting the combination of COX-2 inhibitors like Celebrex with cancer vaccines on this page:
ReplyDeletehttp://astrocytomaoptions.com/immunotherapy/
Scroll about halfway down to the section called COX-2 inhibitors. Note that this evidence is rodent evidence rather than human.
Also note some of the info on this page is likely out of date as I haven't actively updated that website since 2017.
Stephen, thank you unfortunatly things took a huge toll for the worse for us. His tumor grew back in 3 weeks since surgery it is actually much bigger now, we started avastin on friday. There is also so much swelling he coul dnot walk or talk on thursday, we are in the hospital, decadron and avastin, started cannabis. i want to through anything i can at it, what would you advice, suppliments and off label that can go with avastin. The doctors said we are out of options but can try a dose of CCNU. His tumor a year ago was methylated but low index, Tumor is methylated at 6 CpG sites out of 17 (Meth Index=6 and Meth Score=4.26)
Deleteand may be mtor inhibitor but there is concern how he will handle it, we want him to be able to enjoy his time as much as possible. radiation is not safe due to swelling.
My apologies for leaving this comment hanging - I have unfortunately been away from this blog for a month due to several factors. How did the Avastin work out for him? And did he try the CCNU? I sincerely hope that things turned around for him over the past month.
DeleteDear Julia, I have been long absent (or silent) on this site. My 39-year old son, Chance, died in 2016 after two years (Glioblastoma) of trying absolutely everything we could find. He had some resistance to certain things, like your son, and I too tried to accommodate his wishes. Stephen was my rock throughout and I am eternally grateful for what he and this community so freely offered to those of us desperate for answers. I hold hope for the best outcome for you, your son and loved ones.
ReplyDelete