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mbtcmts({"version":"1.0","encoding":"UTF-8","feed":{"xmlns":"http://www.w3.org/2005/Atom","xmlns$openSearch":"http://a9.com/-/spec/opensearchrss/1.0/","xmlns$gd":"http://schemas.google.com/g/2005","id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.comments"},"updated":{"$t":"2021-03-31T21:32:09.130-07:00"},"title":{"type":"text","$t":"our brain tumor cocktails and stories"},"link":[{"rel":"http://schemas.google.com/g/2005#feed","type":"application/atom+xml","href":"http:\/\/btcocktails.blogspot.com\/feeds\/comments\/default"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/comments\/default?alt=json-in-script"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/"},{"rel":"hub","href":"http://pubsubhubbub.appspot.com/"},{"rel":"next","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/comments\/default?alt=json-in-script\u0026start-index=26\u0026max-results=25"}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"generator":{"version":"7.00","uri":"http://www.blogger.com","$t":"Blogger"},"openSearch$totalResults":{"$t":"7008"},"openSearch$startIndex":{"$t":"1"},"openSearch$itemsPerPage":{"$t":"25"},"entry":[{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-2699092081020443112"},"published":{"$t":"2021-02-21T11:38:25.867-08:00"},"updated":{"$t":"2021-02-21T11:38:25.867-08:00"},"title":{"type":"text","$t":"Thanks so much for sharing your story Patricia.  I..."},"content":{"type":"html","$t":"Thanks so much for sharing your story Patricia.  If this blog helped you find information that contributed to his three disease-free years, then it was all worth it.  I think you\u0026#39;re right that with standard treatments we can expect only standard results - I was unwilling to accept that for my friend and was the whole reason I started to research and eventually started this blog.  I am inclined to believe that it was due to all of your efforts with non-standard treatments over and above the standard ones that led to his having a couple extra years of what sounds like an acceptable quality of life.  I can only imagine the sense of loss you are feeling - and I\u0026#39;ve also seen that sometimes the greatest losses can lead to the greatest realizations about the preciousness of life.  And that is something nobody can take away. \u003Cbr \/\u003EMy heartfelt best wishes to you during your next stage on this journey called life.  "},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/6147570209582621503\/comments\/default\/2699092081020443112"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/6147570209582621503\/comments\/default\/2699092081020443112"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2021\/02\/our-story-4years-os.html?showComment=1613936305867#c2699092081020443112","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2021\/02\/our-story-4years-os.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-6147570209582621503","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/6147570209582621503","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"21 February 2021 at 11:38"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-7860090786289469110"},"published":{"$t":"2021-02-17T11:22:28.012-08:00"},"updated":{"$t":"2021-02-17T11:22:28.012-08:00"},"title":{"type":"text","$t":"I got a reply from Istari Oncology, and apparently..."},"content":{"type":"html","$t":"I got a reply from Istari Oncology, and apparently patients have travelled down from Canada to receive the treatment in the USA under the expanded access protocol.  There is no charge for the treatment itself under the Expanded Access Protocol but I was advised to contact Duke U directly for info regarding payment info for any kind of follow-up medical attention received out of country."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/7860090786289469110"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/7860090786289469110"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html?showComment=1613589748012#c7860090786289469110","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-1646051866562100095","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/1646051866562100095","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"17 February 2021 at 11:22"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-7180875110740456038"},"published":{"$t":"2021-01-21T13:20:05.060-08:00"},"updated":{"$t":"2021-01-21T13:20:05.060-08:00"},"title":{"type":"text","$t":"Sorry it has taken over 2 weeks to reply to this. ..."},"content":{"type":"html","$t":"Sorry it has taken over 2 weeks to reply to this. As far as DCVax versus SurVaxM I wasn\u0026#39;t sure I had the most up-to-date info (seeing the last clinical trial data I had seen was 2018 for both trials).   The best I can do would be to compare the still-blinded (all patient) phase 3 DCVax trial data from late 2018 to the 2019 ASCO poster data for SurVax M.  Both trials are for newly diagnosed GBM.\u003Cbr \/\u003E\u003Cbr \/\u003EFor MGMT methylated subgroup, SurVaxM data has the edge at 2 years, while DCVax has a greater percentage surviving as you get closer to 3 years.\u003Cbr \/\u003E\u003Cbr \/\u003EFor the MGMT unmethylated subgroups, SurVaxM has larger percentage surviving at 2 years (44% versus 32.6% for DCVax).\u003Cbr \/\u003E\u003Cbr \/\u003EA huge caveat is that the DCVax trial is still blinded, so the reported data is for ALL patients in the trial (both those who received DCVax and placebo initially).  The DCVax trial data is now locked in preparation for final analysis and (presumably) publication.\u003Cbr \/\u003Ehttps:\/\/nwbio.com\/northwest-biotherapeutics-announces-data-lock-of-phase-iii-trial\/\u003Cbr \/\u003E\u003Cbr \/\u003EI would expect to see the data for DCVax to improve even more when looking at the treatment arm in isolation - those who received DCVax upfront rather than only at recurrence (the placebo arm got the vaccine at the time of recurrence).\u003Cbr \/\u003E\u003Cbr \/\u003EGiven all this, I would probably go with DCVax-L, if both options were available.  It is personalized and multi-targeted and the data looks good (significant tail of long-term survivors) even when looking at the still-blinded data.  SurVaxM is single targeted, and patients may not even express that target significantly.  Both are good options, but I think DCVax has the edge."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/5961896762589343917\/comments\/default\/7180875110740456038"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/5961896762589343917\/comments\/default\/7180875110740456038"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/05\/deciding-between-chemo-and-targeted.html?showComment=1611264005060#c7180875110740456038","title":""},{"rel":"related","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/5961896762589343917\/comments\/default\/6390041527727947770"}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/05\/deciding-between-chemo-and-targeted.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-5961896762589343917","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/5961896762589343917","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"21 January 2021 at 13:20"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-5591050692399555094"},"published":{"$t":"2021-01-03T15:32:34.714-08:00"},"updated":{"$t":"2021-01-03T15:32:34.714-08:00"},"title":{"type":"text","$t":"Hi Stephen,\nI know this is an older post that I am..."},"content":{"type":"html","$t":"Hi Stephen,\u003Cbr \/\u003EI know this is an older post that I am responding to but curious about your comment: \u0026quot;Metronomic cyclophosphamide would probably be my choice in combination with vaccine therapy.\u0026quot; Would you have recommended DCVax-L or SurVaxM? \u003Cbr \/\u003EThank you!"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/5961896762589343917\/comments\/default\/5591050692399555094"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/5961896762589343917\/comments\/default\/5591050692399555094"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/05\/deciding-between-chemo-and-targeted.html?showComment=1609716754714#c5591050692399555094","title":""},{"rel":"related","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/5961896762589343917\/comments\/default\/6390041527727947770"}],"author":[{"name":{"$t":"Suthoff"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/11949992258777545526"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/05\/deciding-between-chemo-and-targeted.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-5961896762589343917","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/5961896762589343917","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-1933113477"},{"name":"blogger.displayTime","value":"3 January 2021 at 15:32"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-4867623945344491128"},"published":{"$t":"2020-12-04T02:43:33.696-08:00"},"updated":{"$t":"2020-12-04T02:43:33.696-08:00"},"title":{"type":"text","$t":"Hello Stephen,\n\nThank you for taken the time to co..."},"content":{"type":"html","$t":"Hello Stephen,\u003Cbr \/\u003E\u003Cbr \/\u003EThank you for taken the time to comment and give feedback! It is much appreciated!\u003Cbr \/\u003E\u003Cbr \/\u003EIt gives me more to digest (insert bio-available pun here\u0026quot; and think about going forward."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/4867623945344491128"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/4867623945344491128"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html?showComment=1607078613696#c4867623945344491128","title":""}],"author":[{"name":{"$t":"edysinger"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/05101912120191859952"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4272726443728815529","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4272726443728815529","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-2144204124"},{"name":"blogger.displayTime","value":"4 December 2020 at 02:43"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-2414347321918537250"},"published":{"$t":"2020-11-17T11:38:31.256-08:00"},"updated":{"$t":"2020-11-17T11:38:31.256-08:00"},"title":{"type":"text","$t":"Yes I agree with all that.  I have definitely spen..."},"content":{"type":"html","$t":"Yes I agree with all that.  I have definitely spent a fair amount of time trying to convert animal doses into human doses.  I later realized that this was a very broad, imperfect, ballpark kind of approach, but in the absence of human studies it is what we have to work with.\u003Cbr \/\u003E\u003Cbr \/\u003EIt sounds like they\u0026#39;re using the word mosaic to mean subclonal alterations that are only occurring in a subpopulation of the cells.  EGFR is the most commonly altered gene in non-IDH types of adult GBM.   There have been numerous drugs developed in other cancers targeting EGFR, but none have had consistent enough success in GBM trials to get full approval for that indication.\u003Cbr \/\u003Ehttps:\/\/pubmed.ncbi.nlm.nih.gov\/28575464\/  (dacomitinib trial 2017)\u003Cbr \/\u003Ehttps:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC6880297\/  (osimertinib review, 2019)\u003Cbr \/\u003E\u003Cbr \/\u003ECDKN2A is a gene that produces a protein that inhibits a cell\u0026#39;s progression through the cell cycle.  It is one of the most commonly deleted genes in GBM, either \u0026quot;hemizygous deletion\u0026quot; (one copy lost), or \u0026quot;homozygous deletion\u0026quot; (both copies lost).\u003Cbr \/\u003E\u003Cbr \/\u003EPTEN is another tumor suppressor that directly counteracts proliferative signaling in the PI3K\/Akt pathway.  This gene is location on chromosome 10.  Most adult GBM\u0026#39;s (non IDH-mutant) have lost one copy of chromosome 10, leaving only one copy of PTEN intact.  Very often this remaining copy is mutated (about 30% of non-IDH GBMs have a PTEN mutation) in these cases effectively leaving no functional PTEN, and overactive PI3K\/Akt\/mTOR proliferative signaling.\u003Cbr \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/2414347321918537250"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/2414347321918537250"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html?showComment=1605641911256#c2414347321918537250","title":""},{"rel":"related","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/3109318845508144491"}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4272726443728815529","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4272726443728815529","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"17 November 2020 at 11:38"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-3109318845508144491"},"published":{"$t":"2020-11-17T07:42:13.534-08:00"},"updated":{"$t":"2020-11-17T07:42:13.534-08:00"},"title":{"type":"text","$t":"Hello Stephen!\nThank you for your response! I agre..."},"content":{"type":"html","$t":"Hello Stephen!\u003Cbr \/\u003EThank you for your response! I agree with you on the hurdles with this disease. However, I have been able to see some things work. For example, I wanted to get my blood glucose levels into the 70-80mg\/dl range. My baseline was averaging 105-120mg\/dl. I used Berberine to lower this down and, based on studies, I predicted on my size about 900mg of Berberine should get me there. I took one Berberine pill (500mg) per day and saw my glucose dropped to the 90-105mg\/dl range. I started taking 1000mg and this got me into the 75-85 range I wanted. So the study, in my opinion, was correct and verifiable. I just used this dosing calculator here:\u003Cbr \/\u003E\u003Cbr \/\u003Ehttps:\/\/www.graphpad.com\/quickcalcs\/Molarityform.cfm\u003Cbr \/\u003E\u003Cbr \/\u003EIf any study is based on an animal, I calculate the conversion from this here:\u003Cbr \/\u003E\u003Cbr \/\u003Ehttps:\/\/www.fda.gov\/media\/72309\/download\u003Cbr \/\u003E\u003Cbr \/\u003EIt definitely seemed to get me in the ballpark on a few supplements. So there appears a correlation from studies to real world that I can verify but I do agree there are the limitations from absorption, BBB, and other factors for other medications\/supplements. This is why I employed multiple redundancies under each mechanism in the hopes something gets through. It\u0026#39;s not an exact science but it seemed I needed to develop a good foundation and get the dosages correct. It seems people are just copying off each other and dosages are determined on the \u0026quot;more is better\u0026quot; idea instead of calculating dosages based on their size from the study.\u003Cbr \/\u003E\u003Cbr \/\u003EI have unmethylated\/wild type. genomic instability with partial mosaic losses of 1p, 19q, Chr 7 mosaic amplifications including EGFR amplification, CDKN2A and PTEN mosaic losses. I have not looked up what all these mean outside of MGMT and IDH. Perhaps you know.\u003Cbr \/\u003E\u003Cbr \/\u003EThank you again for your responses!\u003Cbr \/\u003E\u003Cbr \/\u003EEric"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/3109318845508144491"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/3109318845508144491"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html?showComment=1605627733534#c3109318845508144491","title":""}],"author":[{"name":{"$t":"edysinger"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/05101912120191859952"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4272726443728815529","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4272726443728815529","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-2144204124"},{"name":"blogger.displayTime","value":"17 November 2020 at 07:42"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-4080173005967855070"},"published":{"$t":"2020-11-16T15:30:30.288-08:00"},"updated":{"$t":"2020-11-16T15:30:30.288-08:00"},"title":{"type":"text","$t":"The theory behind CUSP-9 or Ben Williams\u0026#39; appr..."},"content":{"type":"html","$t":"The theory behind CUSP-9 or Ben Williams\u0026#39; approach is completely sound in my view.  The difficulty is the implementation.   So much of the research is based on cell culture studies, where isolated cells in the lab are exposed to drugs or natural products, quite often at concentrations that could not be achieved in humans without serious toxicity.   I very rarely even take the time to read a study that is based only on cell culture, unless they can show that the drug concentrations used in the lab are comparable to levels of free drug in human plasma after standard dosing regimens likely to be used in practise.   Rodent studies would appear to be a little more translatable to humans, in the sense that they cannot give drug doses so high that they kill the animal with unwanted drug toxicities (there is no such limitation in cell culture work).   Even then, rodent studies don\u0026#39;t have the greatest track record translating to humans, but at least they show potential mechanisms that might be in effect with physiologically achievable drug levels.   \u003Cbr \/\u003E\u003Cbr \/\u003EGetting enough drug from the bloodstream into the brain tumor tissue is yet another matter.  Cell culture studies bypass this issue completely.  Many rodent studies also bypass this problem by using flank models of glioma, where a glioma cells are implanted into the flank of an animal, rather than \u0026quot;orthotopically\u0026quot;.   \u003Cbr \/\u003E\u003Cbr \/\u003EI really feel that a big part of the problem in brain tumor therapy is pharmacokinetic in nature, in other words the drug might be effective in the lab with isolated cells, but in actuality you have to first get enough of the drug into the bloodstream in free, active form (drugs with high bioavailability), and then cross the second hurdle of getting enough of that drug from the bloodstream across the blood-brain barrier.   Yes the BBB might be disrupted to some extent in the center of a fast growing tumour (the part most likely to be resected surgically), but in diffuse glioma there are always glioma cells in the periphery protected by a fully intact BBB.   So you really need drugs with high bioavailability and good crossing of the blood-brain barrier.   It is interesting to research drugs known to have effects in the central nervous system, such as fluoxetine (Prozac) and sertraline (included in CUSP9 if I recall correctly).   I have a feeling that many of the nutraceutical supplements are getting into the central nervous system in only trace amounts, if at all.  But it is also likely that some do.\u003Cbr \/\u003E\u003Cbr \/\u003EIt is the same problem trying to repurpose oncology drugs designed for other cancers to brain tumours.  The drug\u0026#39;s mechanism might be very useful, but if not enough drug gets to the target, it is not going to make a difference.\u003Cbr \/\u003E\u003Cbr \/\u003EThat said, if I was seeing results like you are, I would probably continue to do what I had been doing and maybe add on to that.\u003Cbr \/\u003EFinally, there is some evidence of Accutane (13-cis retinoic acid, or isotretinoin) as having a use as a maintenance therapy after the completion of all chemotherapy cycles.\u003Cbr \/\u003Ehttps:\/\/journals.sagepub.com\/doi\/abs\/10.1177\/1078155213483348\u003Cbr \/\u003E\u003Cbr \/\u003EI think it\u0026#39;s more likely to get a doctor to write a single off-label prescription, than more than one, let alone an entire cocktail list.  If you could find a doctor willing to help you with one prescription, they might be willing to write another one later if everything is going well.\u003Cbr \/\u003E\u003Cbr \/\u003EAll the best of luck to you!"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/4080173005967855070"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/4080173005967855070"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html?showComment=1605569430288#c4080173005967855070","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4272726443728815529","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4272726443728815529","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"16 November 2020 at 15:30"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-8448656205686634973"},"published":{"$t":"2020-11-16T15:30:21.856-08:00"},"updated":{"$t":"2020-11-16T15:30:21.856-08:00"},"title":{"type":"text","$t":"Hi Eric,\nYour commitment to organized research is ..."},"content":{"type":"html","$t":"Hi Eric,\u003Cbr \/\u003EYour commitment to organized research is commendable. Glad to hear something has been working for you and that the tumor remnant continues to shrink!\u003Cbr \/\u003E1. Of course, the oncologist is always going to attribute any improvements to the SOC, we can just take that as a given, whether true or not.   Ben William\u0026#39;s doctors said the same thing, though he is convinced if he had simply listened to his doctors and done nothing else, he would not be alive today.  There are far too many unknowns to say whether any given cocktail is going to work for any given individual.  The important thing is to try, and you may get lucky and stumble upon the right formula out of some combination of sheer luck and hard (research) work.   If you are having good results in your scans, probably a good idea to keep doing what you\u0026#39;re doing.  \u003Cbr \/\u003E\u003Cbr \/\u003EWhat kind of testing was carried out on your tumor tissue?  Was it tested for IDH1 mutation? MGMT methylation?  EGFR amplification?\u003Cbr \/\u003E\u003Cbr \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/8448656205686634973"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4272726443728815529\/comments\/default\/8448656205686634973"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html?showComment=1605569421856#c8448656205686634973","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/blockade-strategy-feedback.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4272726443728815529","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4272726443728815529","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"16 November 2020 at 15:30"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-2524102793874844599"},"published":{"$t":"2020-11-14T15:51:12.571-08:00"},"updated":{"$t":"2020-11-14T15:51:12.571-08:00"},"title":{"type":"text","$t":"Hi Frederique,\nMelatonin has a short half-life in ..."},"content":{"type":"html","$t":"Hi Frederique,\u003Cbr \/\u003EMelatonin has a short half-life in the body, so there is probably not much still in the system during the day, but I\u0026#39;m not sure that it is important to time it relative to chemotherapy and radiation.  In theory, it can have antiproliferative effects on GBM cells by itself.  Richard Kast (main author of CUSP9 cocktail for GBM) has written articles proposing the use of the drugs agomelatine or ramelteon in place of melatonin. These drugs also act on melatonin receptors in the body but may have advantages over melatonin itself.  However these are prescription drugs, so not as readily accessible as melatonin.\u003Cbr \/\u003Ehttps:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC4444449\/\u003Cbr \/\u003E\u003Cbr \/\u003EAs far as doctors, most oncologists will resist being actively involved in prescribing the cocktail approach of supplements and off-label drugs.  It is too risky for them - if something goes wrong they do not want to be held liable.  There is a documentary that goes deeply into this question called Surviving Terminal Cancer.  https:\/\/www.survivingterminalcancer.com\u003Cbr \/\u003EIn my experience many general practitioners or family doctors are more comfortable writing off-label prescriptions, as long as they are presented with evidence that the drug in question might be helpful.\u003Cbr \/\u003E\u003Cbr \/\u003EArtemisinin has some preliminary evidence supporting it, though it is quite a different molecule from chloroquine. Even hydroxychloroquine, which has a molecular structure that is almost identical to chloroquine, has some different properties in the body that may make it less effective for GBM. For example \u0026quot;Hydroxychloroquine is less lipophilic than chloroquine and does not diffuse as easily across cell membranes\u0026quot;.    So I would not consider artemisinin as a replacement for chloroquine, but I would evaluate it according to its own supporting evidence.  For GBM, there is some degree of clinical trial evidence (trials carried out in Mexico in the 1990s), but evidence for artemisinin compounds is more anecdotal.\u003Cbr \/\u003E\u003Cbr \/\u003EAgain, even though Boswellia and Celebrex may have similar uses, they are very different molecules.  Bowellia is certainly more accessible as you don\u0026#39;t need a prescription for it.   The main suggested use of Bowellia is to reduce the amount of cerebral edema and perhaps lessen the need for dexamethasone. Older studies showed that large doses (several grams) of Boswellia was needed every day to achieve this, but perhaps improved formulations of Boswellia would allow the same effect to be achieved with smaller doses.  In the past I have recommended the WokVel version of Boswellia made by Verdure Sciences, mainly on the basis of their being the same company that makes the Longvida formulation of curcumin.\u003Cbr \/\u003Ehttps:\/\/www.pureformulas.com\/boswellia-serrata-extract-wokvel-180-capsules-by-progena.html\u003Cbr \/\u003Ehttps:\/\/vs-corp.com\/wokvel\/\u003Cbr \/\u003E\u003Cbr \/\u003EI hope you are able to find a doctor who is willing to give some professional guidance and\/or write prescriptions for you!"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/3682926727035744306\/comments\/default\/2524102793874844599"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/3682926727035744306\/comments\/default\/2524102793874844599"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/questions-for-newly-diagnosted.html?showComment=1605397872571#c2524102793874844599","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/questions-for-newly-diagnosted.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-3682926727035744306","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/3682926727035744306","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"14 November 2020 at 15:51"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-2814103880761382164"},"published":{"$t":"2020-11-11T16:54:23.802-08:00"},"updated":{"$t":"2020-11-11T16:54:23.802-08:00"},"title":{"type":"text","$t":"Greetings,\n\nI know a young man who took CCNU and T..."},"content":{"type":"html","$t":"Greetings,\u003Cbr \/\u003E\u003Cbr \/\u003EI know a young man who took CCNU and Temodal (4 cycles) and did not not loose his hairs; in opposite, they beautifully mostly recovered after initial chemotherapy, radiation and Temodal. Only the color has changed to deep black - the natural colour was much lighter. He did not loose hairs even after next rounds of chemo (different).  Unfortunately, hairs did not fully recovered around surgery and radiotherapy field.\u003Cbr \/\u003E\u003Cbr \/\u003EKind regards,\u003Cbr \/\u003EStefan"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/2824870705005438868\/comments\/default\/2814103880761382164"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/2824870705005438868\/comments\/default\/2814103880761382164"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/lomustine-hair-loss-alopecia-experience.html?showComment=1605142463802#c2814103880761382164","title":""}],"author":[{"name":{"$t":"Stefan"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/03451739216953441180"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/11\/lomustine-hair-loss-alopecia-experience.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-2824870705005438868","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/2824870705005438868","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-833070364"},{"name":"blogger.displayTime","value":"11 November 2020 at 16:54"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-5679481712002303601"},"published":{"$t":"2020-11-04T19:22:20.015-08:00"},"updated":{"$t":"2020-11-04T19:22:20.015-08:00"},"title":{"type":"text","$t":"It\u0026#39;s mostly about how you were able to get rep..."},"content":{"type":"html","$t":"It\u0026#39;s mostly about how you were able to get repurposed drugs or help me how to convince her doctors. thank you so much for your help. \u003Cbr \/\u003Efrederique"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/5679481712002303601"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/5679481712002303601"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html?showComment=1604546540015#c5679481712002303601","title":""}],"author":[{"name":{"$t":"Mademoiselle Frederique"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/01088910030596595844"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-72114895769857443","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/72114895769857443","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-1581666920"},{"name":"blogger.displayTime","value":"4 November 2020 at 19:22"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-8208525738448281934"},"published":{"$t":"2020-11-03T19:37:28.874-08:00"},"updated":{"$t":"2020-11-03T19:37:28.874-08:00"},"title":{"type":"text","$t":"Hi Bertrand, do you think you could write to frede..."},"content":{"type":"html","$t":"Hi Bertrand, do you think you could write to frededthibeault@gmail.com\u003Cbr \/\u003EMy sister has been diagnosed with glioblastoma recently. She\u0026#39;s in Montreal and I have some question for you. Thank you\u003Cbr \/\u003Efrederique"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/8208525738448281934"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/8208525738448281934"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html?showComment=1604461048874#c8208525738448281934","title":""}],"author":[{"name":{"$t":"Mademoiselle Frederique"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/01088910030596595844"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-72114895769857443","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/72114895769857443","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-1581666920"},{"name":"blogger.displayTime","value":"3 November 2020 at 19:37"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-3879154900457551593"},"published":{"$t":"2020-11-03T19:36:38.171-08:00"},"updated":{"$t":"2020-11-03T19:36:38.171-08:00"},"title":{"type":"text","$t":""},"content":{"type":"html","$t":"This comment has been removed by the author."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/3879154900457551593"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/3879154900457551593"}],"author":[{"name":{"$t":"Mademoiselle Frederique"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/01088910030596595844"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-72114895769857443","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/72114895769857443","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.contentRemoved","value":"true"},{"name":"blogger.itemClass","value":"pid-1581666920"},{"name":"blogger.displayTime","value":"3 November 2020 at 19:36"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-577639119632746494"},"published":{"$t":"2020-11-03T10:30:00.164-08:00"},"updated":{"$t":"2020-11-03T10:30:00.164-08:00"},"title":{"type":"text","$t":"No reply yet.  Will post here if I get a reply."},"content":{"type":"html","$t":"No reply yet.  Will post here if I get a reply."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/577639119632746494"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/577639119632746494"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html?showComment=1604428200164#c577639119632746494","title":""},{"rel":"related","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/7348117700150862305"}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-1646051866562100095","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/1646051866562100095","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"3 November 2020 at 10:30"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-7348117700150862305"},"published":{"$t":"2020-11-03T02:15:57.154-08:00"},"updated":{"$t":"2020-11-03T02:15:57.154-08:00"},"title":{"type":"text","$t":"Any reply? Probably no. I\u0026#39;m writing this mainl..."},"content":{"type":"html","$t":"Any reply? Probably no. I\u0026#39;m writing this mainly to get notified of future posts."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/7348117700150862305"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/7348117700150862305"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html?showComment=1604398557154#c7348117700150862305","title":""}],"author":[{"name":{"$t":"netopolit"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/10193686230681725608"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"32","height":"32","src":"\/\/1.bp.blogspot.com\/-Sin3nDNCEEc\/W92-STEo2fI\/AAAAAAAAb00\/30w4bY6f_Y8Y4L-l1dUYXksW_v7dFmtMwCK4BGAYYCw\/s220\/oslo180.png"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-1646051866562100095","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/1646051866562100095","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-207403031"},{"name":"blogger.displayTime","value":"3 November 2020 at 02:15"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-2772823907437748791"},"published":{"$t":"2020-10-30T14:32:13.155-07:00"},"updated":{"$t":"2020-10-30T14:32:13.155-07:00"},"title":{"type":"text","$t":"Hi Bertrand,\nThe first thing I typically look at f..."},"content":{"type":"html","$t":"Hi Bertrand,\u003Cbr \/\u003EThe first thing I typically look at for first recurrence would be clinical trials.  However I know from experience that worthwhile clinical trials recruiting in Canada are few and far between.  \u003Cbr \/\u003E\u003Cbr \/\u003EI just posted a link on the blog to an expanded access protocol for PVS-RIPO (modified poliovirus).  Other expanded access protocols I\u0026#39;ve looked into are only available to patients in the USA, and I\u0026#39;ve emailed to find out if this is the case for the PVS-RIPO as well.\u003Cbr \/\u003E\u003Cbr \/\u003EI believe the most common treatments (depending on your institution) for recurrent GBM are CCNU (lomustine) and Avastin (bevacizumab) or a combination of these.   The BELOB trial (published 2014) showed better PFS-6 (progression-free survival at 6 months) and OS-9 (overall survival at 9 months) with a combination of CCNU and Avastin, versus either drug alone, even in the MGMT unmethylated group.\u003Cbr \/\u003EIn the phase 3 EORTC26101 trial (Wick, 2017) CCNU alone was compared to CCNU + Avastin (but they didn\u0026#39;t have an Avastin-only arm).   Overall and also for the MGMT unmethylated patients, the outcome was that CCNU alone was about equally effective as CCNU + Avastin in terms of overall survival, though progression-free survival was improved with the combination treatment.\u003Cbr \/\u003E\u003Cbr \/\u003EIn the absence of clinical trials opportunities (some of which exclude patients previously treated with Avastin), Avastin could be worth a try, with or without CCNU.   I would not want to rely on CCNU alone for an MGMT-unmethylated tumor.\u003Cbr \/\u003E\u003Cbr \/\u003EThere are a few trials involving PD-1\/PD-L1 inhibiting antibodies in Canada, but this class of drug has had low success rates in GBM as a monotherapy.\u003Cbr \/\u003E\u003Cbr \/\u003EGiven the MGMT-unmethylated status, the tumor recurrence is unlikely to be hypermutated.  The Foundation report will give you results for all the most commonly mutated genes in GBM.  The most frequent and targetable one is EGFR.  I believe the FoundationOne test now does routinely include the tumor mutational burden\/load.\u003Cbr \/\u003E\u003Cbr \/\u003EAt one point I had made a spreadsheet of all the most commonly used repurposed drugs and supplements for GBM and tried to give them a rating of which ones I would prioritize. This is still available in my Brain Tumor Library on Google Drive, though I haven\u0026#39;t updated it in quite some time.  The \u0026quot;cocktail approach\u0026quot; is such that every person you ask would recommend something different, and everybody has a different standard for what level of evidence to accept.  And in truth nobody knows what is the optimal \u0026quot;cocktail\u0026quot; for any given individual.  This makes it especially hard to give recommendations.  My aim has always been to provide access to all the relevant info for motivated patients and caregivers to assemble their own cocktail (preferably under the supervision of an open-minded physician).\u003Cbr \/\u003E\u003Cbr \/\u003EBen William\u0026#39;s tumour was in more recent years found to carry the IDH1 mutation and these types of tumours have a different biology and response profile to therapies compared to the more common IDH wild-type GBM.  For this reason I probably would not take the approach of duplicating Ben\u0026#39;s original cocktail for a dissimilar type of tumour.  \u003Cbr \/\u003E\u003Cbr \/\u003EHave you watched the film Surviving Terminal Cancer?\u003Cbr \/\u003EIf you are wanting to take the approach of using what other long-term survivors have done,  Rich\u0026#39;s (from the film) cocktail example was posted in the early days of this blog:\u003Cbr \/\u003Ehttps:\/\/btcocktails.blogspot.com\/2015\/10\/rich-cocktail.html\u003Cbr \/\u003EAnd Al Musella has a list of stories from long-term survivors over at virtualtrials.com\u003Cbr \/\u003E\u003Cbr \/\u003EYou sound very motivated and informed, and hopefully your efforts will pay off.  Feel free to post the results of the genetic testing when that comes back.\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cbr \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/2772823907437748791"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/72114895769857443\/comments\/default\/2772823907437748791"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html?showComment=1604093533155#c2772823907437748791","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/treatment-options-for-first-recurrence.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-72114895769857443","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/72114895769857443","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"30 October 2020 at 14:32"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-8057881432605545843"},"published":{"$t":"2020-10-30T13:36:30.285-07:00"},"updated":{"$t":"2020-10-30T13:36:30.285-07:00"},"title":{"type":"text","$t":"I\u0026#39;ve emailed them to inquire if this is only a..."},"content":{"type":"html","$t":"I\u0026#39;ve emailed them to inquire if this is only available to patients in the USA or more broadly."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/8057881432605545843"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/1646051866562100095\/comments\/default\/8057881432605545843"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html?showComment=1604090190285#c8057881432605545843","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/10\/expanded-access-protocol-for-pvs-ripo.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-1646051866562100095","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/1646051866562100095","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"30 October 2020 at 13:36"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-1845061233257344844"},"published":{"$t":"2020-10-30T13:04:20.815-07:00"},"updated":{"$t":"2020-10-30T13:04:20.815-07:00"},"title":{"type":"text","$t":"I don\u0026#39;t think of it as CCNU resensitizing a tu..."},"content":{"type":"html","$t":"I don\u0026#39;t think of it as CCNU resensitizing a tumour to TMZ.  I think of it more as a case of CCNU making it harder for the tumor to evolve resistance to TMZ when the two drugs are combined (MGMT methylated tumors have a tendency to evolve resistance to TMZ via mismatch repair defects leading to hypermutation - but such cells are actually more sensitive to CCNU, at least according to in vitro work).   On the other hand I think of a PARP inhibitor (olaparib etc.) as something that could help resensitize to TMZ in cases where resistance is mediated by mismatch repair defects such as mutations in MSH6.\u003Cbr \/\u003E\u003Cbr \/\u003Ehttps:\/\/clincancerres.aacrjournals.org\/content\/26\/7\/1690\u003Cbr \/\u003Ehttps:\/\/sci-hub.st\/10.1158\/1078-0432.CCR-19-2000    (same study as download from sci-hub)\u003Cbr \/\u003E\u003Cbr \/\u003EIn the CeTeG trial they gave 100 mg\/m2 of CCNU on day 1 and also 100 mg\/m2 of TMZ on days two to six.    This CCNU dose is somewhat reduced from the standard dose of 110 mg\/m2 which is probably the dose your partner received (assuming body surface of 2 metres squared).  I know from my friend\u0026#39;s experience that even reduced doses like 150 mg (total) CCNU can be too much after several cycles.   So yes it does seem like it might be too much to add TMZ immediately after a full dose of CCNU.\u003Cbr \/\u003E\u003Cbr \/\u003EIf I\u0026#39;m recalling correctly (correct me if I\u0026#39;m wrong), she was treated with a course of TMZ (2018-2019), and then after the grade 4 recurrence this year the genetic analysis did not show evidence of hypermutation, but there was evidence of a PTPRZ1-MET fusion which may promote increased resistance to TMZ.  \u003Cbr \/\u003E\u003Cbr \/\u003EGiven the fact that TMZ did seem to work initially, and the absence of hypermutation in the last genetic analysis, it may be worth another try if all this activity on the scan is indeed new tumor progression.   Really in a scenario like this I would not take Avastin off the table either.   When there are so few options I think it\u0026#39;s best to make use of whatever therapies exist (including Avastin) and by close observation try to figure out what is working and what isn\u0026#39;t.  I think Avastin does work for some people (at least in the short-term).  But I have less confidence in it being effective for IDH1-mutant GBM as opposed to the more common type of GBM, and would certainly not rely on it alone.\u003Cbr \/\u003E\u003Cbr \/\u003EI hope her team is able to find some answers soon.\u003Cbr \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/1845061233257344844"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/1845061233257344844"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html?showComment=1604088260815#c1845061233257344844","title":""},{"rel":"related","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/6559808867687303174"}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4970211868524133861","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4970211868524133861","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"30 October 2020 at 13:04"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-6559808867687303174"},"published":{"$t":"2020-10-29T15:10:47.687-07:00"},"updated":{"$t":"2020-10-29T15:10:47.687-07:00"},"title":{"type":"text","$t":"Just further to my question above in relation to a..."},"content":{"type":"html","$t":"Just further to my question above in relation to adding TMZ to the CCNU, as you have mentioned before in other posts, CCNU can re-sensitize TM-resistant tumours to TMZ – but do you think the opposite is also true – that adding TMZ to CCNU can re-sensitise a CCNU-resistant tumour to CCNU? I can’t find any literature regarding this. \u003Cbr \/\u003E\u003Cbr \/\u003EAlso, I am assuming you would think adding TMZ to CCNU is preferable to adding Avastin because you mentioned before that you suspect Avastin was mainly only helping with the swelling?"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/6559808867687303174"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/6559808867687303174"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html?showComment=1604009447687#c6559808867687303174","title":""}],"author":[{"name":{"$t":"ryan_h"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/11987363996222015682"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4970211868524133861","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4970211868524133861","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-1059642608"},{"name":"blogger.displayTime","value":"29 October 2020 at 15:10"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-9173376535069797495"},"published":{"$t":"2020-10-29T13:12:58.164-07:00"},"updated":{"$t":"2020-10-29T13:12:58.164-07:00"},"title":{"type":"text","$t":""},"content":{"type":"html","$t":"This comment has been removed by the author."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/9173376535069797495"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/9173376535069797495"}],"author":[{"name":{"$t":"ryan_h"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/11987363996222015682"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4970211868524133861","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4970211868524133861","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.contentRemoved","value":"true"},{"name":"blogger.itemClass","value":"pid-1059642608"},{"name":"blogger.displayTime","value":"29 October 2020 at 13:12"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-4150326401309185212"},"published":{"$t":"2020-10-28T13:50:26.283-07:00"},"updated":{"$t":"2020-10-28T13:50:26.283-07:00"},"title":{"type":"text","$t":"Thank you very much for your reply and insights St..."},"content":{"type":"html","$t":"Thank you very much for your reply and insights Stephen.\u003Cbr \/\u003E\u003Cbr \/\u003EYes, I really do hope that they can shed some light as to what is going on - perhaps I will push for a FDG PET scan to try and see if they can distinguish if it is true progression.\u003Cbr \/\u003E\u003Cbr \/\u003EI really hope that it not a \u0026quot;blow up\u0026quot; case, but if it is a CCNU blow up - then maybe we should be adding TMZ right away. Only problem with adding the TMZ is that she has just last night taken a high dose of CCNU (220mg) - which would be to high to then add TMZ on top would it not?"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/4150326401309185212"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/4150326401309185212"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html?showComment=1603918226283#c4150326401309185212","title":""}],"author":[{"name":{"$t":"ryan_h"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/11987363996222015682"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4970211868524133861","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4970211868524133861","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-1059642608"},{"name":"blogger.displayTime","value":"28 October 2020 at 13:50"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-1838939698392297753"},"published":{"$t":"2020-10-28T12:28:13.335-07:00"},"updated":{"$t":"2020-10-28T12:28:13.335-07:00"},"title":{"type":"text","$t":"Hi Ryan, I\u0026#39;m sorry to hear of this troubling d..."},"content":{"type":"html","$t":"Hi Ryan, I\u0026#39;m sorry to hear of this troubling development.  In honesty, when the question is about the interpretation of radiology this is my least knowledgeable area of brain tumour research as I have not focused on it.  I hope they are able to give you some answers to make sense of it.  \u003Cbr \/\u003E\u003Cbr \/\u003EThe way you describe her recurrence reminds me of the way a tumor can \u0026quot;blow up\u0026quot; when a hypermutated subclone develops after TMZ treatment, which is then completely resistant to TMZ.  I am less familiar about resistance mechanisms for CCNU.  If the new enhancements are true tumor progression, then clearly some resistance mechanism to CCNU has evolved.  If there is a chance to do more genetic testing with some of the new tissue it might give some insights as to what is happening.  \u003Cbr \/\u003E\u003Cbr \/\u003EThanks for the link to the CMV-specific T-cell trial. I had been aware of that trial for years but hadn\u0026#39;t seen the results.   If there is any way you can access this in Australia through Special Access it would be worth a try.   \u003Cbr \/\u003E\u003Cbr \/\u003EAnyhow, I hope you get some answers from the doctors soon!"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/1838939698392297753"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/1838939698392297753"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html?showComment=1603913293335#c1838939698392297753","title":""}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4970211868524133861","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4970211868524133861","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"28 October 2020 at 12:28"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-96236171354431665"},"published":{"$t":"2020-10-28T12:10:45.370-07:00"},"updated":{"$t":"2020-10-28T12:10:45.370-07:00"},"title":{"type":"text","$t":"My apologies for leaving this comment hanging - I ..."},"content":{"type":"html","$t":"My apologies for leaving this comment hanging - I have unfortunately been away from this blog for a month due to several factors.  How did the Avastin work out for him?  And did he try the CCNU?  I sincerely hope that things turned around for him over the past month."},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4494655165232345112\/comments\/default\/96236171354431665"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4494655165232345112\/comments\/default\/96236171354431665"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/09\/18-year-old-apxa-2nd-recurrence-after.html?showComment=1603912245370#c96236171354431665","title":""},{"rel":"related","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4494655165232345112\/comments\/default\/3557620229216938"}],"author":[{"name":{"$t":"Stephen W"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/00777652648990108253"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/09\/18-year-old-apxa-2nd-recurrence-after.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4494655165232345112","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4494655165232345112","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-701050023"},{"name":"blogger.displayTime","value":"28 October 2020 at 12:10"}]},{"id":{"$t":"tag:blogger.com,1999:blog-6235733697979948062.post-6567800728668478167"},"published":{"$t":"2020-10-27T19:39:52.393-07:00"},"updated":{"$t":"2020-10-27T19:39:52.393-07:00"},"title":{"type":"text","$t":"Hi Stephen,\n\nIt has been a while since my last pos..."},"content":{"type":"html","$t":"Hi Stephen,\u003Cbr \/\u003E\u003Cbr \/\u003EIt has been a while since my last post\/update of my partners’ progress – we have been keeping really busy camping + generally keeping active.\u003Cbr \/\u003EShe is just about due to start her 4th round of CCNU (220mg). \u003Cbr \/\u003E\u003Cbr \/\u003EShe has been having MRI’s approximately once every 6 weeks or so, prior to the start of the each CCNU cycle. Since my last post and up until and including her last MRI a few days ago, the multiple (3) tumours that that had previously sprung up in the ventricles have continued to shrink to the point of almost disappearing, which is really good news. \u003Cbr \/\u003E\u003Cbr \/\u003EIn August, one of the ventricle tumours actually had an intra-tumoral haemorrhage which burst and caused quite severe headaches for a few weeks – but this too resolved. This is a very good result, particularly considering these tumours were growing at an extremely fast rate (~ 1.1% per day).\u003Cbr \/\u003E\u003Cbr \/\u003EDuring this time, the original temporal\/insula tumour had also shrunk a little and had largely remained non-enhancing, however during the previous scan in September, a couple of circular enhancing regions appeared within the tumour. This, at the time, was thought to possibly be treatment related effect (by her radiooncologist – who we still use to interpret the scans, as he is very knowledgeable and works solely with brain tumours), however this last scan has shown significant increases in numbers of enhancing regions and encroachment into other surrounding structures.\u003Cbr \/\u003E\u003Cbr \/\u003EThis development really has everyone baffled, given how successful the CCNU has been with the other foci that had stemmed from the temporal tumour. It has only been a couple of days since the scan and they are still trying to come up with an answer as to what is happening – we personally are hoping somehow that it is perhaps delayed radiation necrosis and have asked the radiooncologist to check these scans with the Radiotherapy Field treatment location. She also, just prior to the new enhancements showing up, had a fall off her mountain bike – going down a black run  - and took quite a serious knock to the head, resulting in a hospital visit! So maybe that is involved somehow.\u003Cbr \/\u003E\u003Cbr \/\u003EGoing forward, the neurooncologist wants her to keep on the CCNU (which we totally agree with) and also wanted her to start Avastin – however the radiooncologist has said to hold off on the Avastin until we know what is going on – as it may preclude her from any potential trials.\u003Cbr \/\u003E\u003Cbr \/\u003EOther options that we also still have available would be to try the Crizotinib with the CCNU (with or without the Avastin) - but not sure how this would go toxicity wise. \u003Cbr \/\u003E\u003Cbr \/\u003EShe seems to have pretty robust bone marrow and her blood counts have so far been bouncing back well after the nadir, which is really helpful.\u003Cbr \/\u003E\u003Cbr \/\u003EAnother option – and this is really thanks in very large part to you having posted the results of the Duke University CMV – Dendric Cell Vaccine trials (http:\/\/btcocktails.blogspot.com\/2020\/08\/cmv-cytomegalovirus-specific-dendritic.html). After seeing those amazing results, I did a search to see if by any chance there was a similar trial in Australia and to my amazement, there actually was a similar trial that had been conducted in Brisbane (where we live) – but it had unfortunately concluded and they were not accepting new patients. I contacted the professor in charge of the research\/trial and he advised that they would begin a new one next year and that they were just about to publish their results – which can now be found here: \u003Cbr \/\u003E\u003Cbr \/\u003Ehttps:\/\/www.jci.org\/articles\/view\/138649 \u003Cbr \/\u003E\u003Cbr \/\u003EIt was only a small trial but as you can see, they had pretty spectacular results for a subset of patients. We could potentially access this therapy via the Special Access Scheme (similar to the Right to Try act in the US).\u003Cbr \/\u003E\u003Cbr \/\u003EI am wondering if I could trouble you for your opinion with regards to what you think may be going on with the tumour – I know it is very difficult to say, particularly with not seeing scans (I am happy to send through some screenshots)? Have you ever heard of one region having almost total response, while another not responding at all?\u003Cbr \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/6567800728668478167"},{"rel":"self","type":"application/atom+xml","href":"http:\/\/www.blogger.com\/feeds\/6235733697979948062\/4970211868524133861\/comments\/default\/6567800728668478167"},{"rel":"alternate","type":"text/html","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html?showComment=1603852792393#c6567800728668478167","title":""}],"author":[{"name":{"$t":"ryan_h"},"uri":{"$t":"https:\/\/www.blogger.com\/profile\/11987363996222015682"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"thr$in-reply-to":{"xmlns$thr":"http://purl.org/syndication/thread/1.0","href":"http:\/\/btcocktails.blogspot.com\/2020\/06\/quite-urgently-seeking-suggestions.html","ref":"tag:blogger.com,1999:blog-6235733697979948062.post-4970211868524133861","source":"http://www.blogger.com/feeds/6235733697979948062/posts/default/4970211868524133861","type":"text/html"},"gd$extendedProperty":[{"name":"blogger.itemClass","value":"pid-1059642608"},{"name":"blogger.displayTime","value":"27 October 2020 at 19:39"}]}]}});