tag:blogger.com,1999:blog-6235733697979948062.post5541290933994992389..comments2024-03-19T00:33:30.191-07:00Comments on our brain tumor cocktails and stories: Stephen Whttp://www.blogger.com/profile/00777652648990108253noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-6235733697979948062.post-44368544186252560832017-02-10T11:37:00.057-08:002017-02-10T11:37:00.057-08:00Hi everyone, it's DMG (different account)
Sorr...Hi everyone, it's DMG (different account)<br />Sorry Sonja, I just read your message. <br />Today we went to onco and found out there is in fact a tumor progession. It has now 3,9cm. <br />Should start on avastin + cpt 11 on Feb 20th.<br /><br />Lots of love,<br />Danyontheroxxxhttps://www.blogger.com/profile/07510184861176746256noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-30217522498924656572017-01-13T03:11:31.415-08:002017-01-13T03:11:31.415-08:00Hi Dany, my thoughts with you. My husband has been...Hi Dany, my thoughts with you. My husband has been diagnosed with Unmethylated tumour too. How is your dad going? My thoughts with you and family. Sonja Mhttps://www.blogger.com/profile/02173722990637897876noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-61570059561445385972016-12-22T04:31:13.853-08:002016-12-22T04:31:13.853-08:00Hi there you all,
my dad's last MRI showed tha...Hi there you all,<br />my dad's last MRI showed that the tumor which had 2cm grew 9mm in 2 months but with dead areas (possibly RT necrosis) - is this good ? I know it's grown but 'dead areas' excites me somehow.<br />Another thing that really hit me is that for the first time it showed satellite tumors - we don't know how many, we just know that the biggest has 1cm. - Can someone please enlighten me about this 'satellite' tumors ? Does this mean that the chance of getting more 'real' tumor is higher ? Or is it already happening ? We just need a light here, please.<br /><br />Thanks<br />DanyDMGhttps://www.blogger.com/profile/17781607233233690762noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-56588868140486157692016-12-07T16:28:40.759-08:002016-12-07T16:28:40.759-08:00Dear Stephen and All,
I was looking online for mor...Dear Stephen and All,<br />I was looking online for more researches that could confirm perillyl alcohol's efficacy and I found this: http://mct.aacrjournals.org/content/molcanther/early/2012/11/01/1535-7163.MCT-12-0321.full.pdf<br /><br />Idk if you already read it, but I thought it was worth the share.<br />Will talk again to my dad and his onco.<br /><br />*when you open the link, if it appears like failed link just click on reload; it worked for me.<br /><br />Lots of love and hope,<br />Dany<br /><br /><br /><br />DMGhttps://www.blogger.com/profile/17781607233233690762noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-81400042722423833922016-12-07T08:08:19.759-08:002016-12-07T08:08:19.759-08:00Hi Stephen,
OMG thank you so so so much! I knew yo...Hi Stephen,<br />OMG thank you so so so much! I knew you are the best!<br /><br />His onco is against perillyl alcohol since there´s only one study published about it and he doesn't trust its effectiveness. I already have Dr Clovis contact, thanks. And then my dad doesn't want to test it.<br /><br />About the other two suggestions, I didn´t know about them but will talk to his onco.<br /><br />Once again, thank you! <br />You are a very enlightened human being!<br /><br />DMGhttps://www.blogger.com/profile/17781607233233690762noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-739134792418250182016-12-07T07:36:09.733-08:002016-12-07T07:36:09.733-08:00DMG,
As you live in Brazil, for starters I'd r...DMG,<br />As you live in Brazil, for starters I'd reach out to Dr. Clovis da Fonseca and ask him about getting intranasal perillyl alcohol for your dad. Matias who lives in Brazil and sometimes visits this blog may be able to comment further about that. Also see previous comments about perillyl alcohol here:<br />http://btcocktails.blogspot.com/search/label/perillyl_alcohol<br /> <br />I can send you Clovis' email address by email.<br /><br />Secondly, I'd ask about exchanging his current anti-seizure meds for Keppra (levetiracetam). Keppra may have several anti-tumor mechanisms and has led to longer survival when taken with TMZ (Temodar) in retrospective GBM studies. It potentially inhibits MGMT expression, which could sensitize tumors to TMZ. There was also a recent study showing Keppra can inhibit gap junction communication between glioma cells and surrounding cells.<br /><br />High positivity for EGFR may indicate EGFR gene amplification. EGFR-driven tumors may be more responsive to chloroquine/hydroxychloroquine treatment. Chloroquine or hydroxychloroquine combined with rapamycin [sirolimus] might make a good combination as seen in this case series:<br />http://www.omicsgroup.org/journals/sirolimus-and-hydroxychloroquine-as-an-addon-to-standard-therapy-for-glioblastoma-multiforme-case-report-2167-7956-1000141.php?aid=73417<br /><br />These are the things I would work on for starters.<br /><br />Best of luck, and hopefully you have or are able to find co-operation from his doctors.<br />Stephen Whttps://www.blogger.com/profile/00777652648990108253noreply@blogger.com