glioblastoma IV treatment questions

As I have stated in an earlier post last month my 40 yr old sister in law was diagnosed last month with GBM,  got all the tumor but 10 percent, due to it being attached to a main artery in brain,  and   it was located on left frontal lobe and was the size of a lemon.  She started radiation,  and oral chemo on the 3rd of December.  Ive been hearing alot about MD Anderson,  and how great they are.  I think she has a MRI on Friday ,  and if it has shown growth she is concidering going there.  We live in Iowa,  and are very close to the University Of Iowa which is a teaching hospital and they are great there,  but not for Brain Cancer.  I know that the treatments are not going to save her life in anyway,  but prolong the cancer from growing as rapidly as this type seems to just take on a course of its own without warning.  Any opinions would be very much appriciated

Megan, it's a good idea for her to be seen by a neuro-oncologist-- is there one at U of Iowa? My sister's at 24 months' GBM survival. I took her once to NIH because I wanted her to be seen at a major brain tumor center, but other than that she's been treated at a teaching hospital that has a neuro-oncology dept but isn't a major BT center. It was worth it to go to NIH to be reassured by them that our own doctors were giving her the best possible care. That's my two cents.

I would go along to one of the major BT centers just to satisfy myself that I'd covered all angles.

I'd suggest if not MD Anderson (which is meant to be excellent), one of Duke, Dana Faber, Johns Hopkins, or UCSF.  I'd do that in addition to going to the NIH (since that's free anyway).

Sounds like she's on the 'standard' treatment.  There are things to add onto the standard treatment that can help though - like Accutane (most of the work on that was done at MDA), Celebrex, or chloroquine. 

My philosophy was that the mean of 14.6 months following the gold standard treatment wasn't good enough so I wanted to do more than that.

You are more likely to get an oncologist who's willing to 'play' a little bit with a cocktail at a major center in my opinion.

Has she been tested for MGMT methylation or EGFR expression?  That can help guide chemo choices down the line.

Our program at the Colorado Neurological Institute in the Denver Metro area feels that you need multi-agent chemo and radiation to wage a fair fight against brain cancer.  Single agent therapy (in our opinion) is a self-fulfilling prophecy of minimum survival.  I've mentioned this before, but at our institute we do a long-term survivors party every year for high grade brain tumor survivors (Grade 3 or above with most being GBMs).  Long-term is considered 3 years or more from diagnosis.  In September 2012 I invited 92 patients.  Many of these are people are 10, 11, 12 years and more survivors. One fellow is at 22 years survival.  My point here is that you don't have to accept that this can't be treated and beaten.  It happens across the country everyday at places like MD Anderson, Duke, UCSF and even Colorado.  If you do an internet search for brain tumor survivors, you'll find many stories of survival. 

Lorre G.

Hello Megan,

My father was diagnosed with GBM IV on 5/1/11. Ever since starting a strict ketogenic diet under the supervision of a ketogenic dietician at our Seattle hospital my Dad's tumor has shrunk or remained stable. We continue to regret ever having done brain radiation. The side effects have been far worse than the tumor. Also, our surgeon was acting outside his area of expertise and therefore only got about a 50% resection. Dad tested negative for every possible indicator that would either get us into an immune based clinical trial or indicate that chemo would be helpful. Therefore we chose to try the diet. We wish we would have done it sooner. We just had another MRI last week- again no growth (good news for GBM) but still showing necrosis from the radiation. His tumor was/is on the left side in about the worst possible location right next to his speach center. Please send me a private reply if you would like any information. Dad has been in ketosis for over 14 months now and has as good of energy levels etc as ever. He does have some nurological deficits from the radiation and surgery though, but apart from that is happy and engaged in life.

The treatment that you mention (Accutane, Celebrex, and chloroquine) are the same things that Ben Williams mentions in his book.  I have asked our neuro oncologist to give my husband these concoctions, but the NO refuses.  How did you convince your NO to meet your requests?  Have the treatments worked for you thus far?  Were you diagnosed with GBM Stage IV?  When were you diagnosed? 

I apologize about all of the questions, but I want my husband to survive for many years to come!

Thank you!!!

On Dec 13, 2012 2:27 AM RobinMB wrote:

The treatment that you mention (Accutane, Celebrex, and chloroquine) are the same things that Ben Williams mentions in his book.  I have asked our neuro oncologist to give my husband these concoctions, but the NO refuses.  How did you convince your NO to meet your requests?  Have the treatments worked for you thus far?  Were you diagnosed with GBM Stage IV?  When were you diagnosed? 

I apologize about all of the questions, but I want my husband to survive for many years to come!

Thank you!!!

That's a tough one. You do unfortunately need a doctor to prescribe the drugs. I am also a GBM IV - I've outlived the mean so far. I first presented in March 2011. First off - the better the NO the more confidence they'll have and I think more likely to give what you want (so get to a good center). Secondly tell them you want to be aggressive with his treatment and that the 'gold standard' with its 14.6 month results isn't good enough. Be informed. Research, on PUBMED, the pre-clinical studies (Ben Williams gives great references) and engage with the NO as an equal. Acknowledge that these are largely unproven theories - but you'd like to give them a shot anyway. Good luck!! Remember you are the customer.

Interesting

Thank you so much for this information

I have read Ben Williams book also- very good and have incorporated the Melatonin and extra fish oil into my husbands night time vitamins. His medical oncologist always comments on how great he is doing and how his blood work is perfect, no tumor growth etc.. but will not acknowledge the holistic things we are doing at all. We have had no meat since diagnosis and very little sugar, his diet is filled with fruit/veggies/whole grains/beans and he exercises- a walk for 2-3 miles almost every day. Simple stuff, church and pets and some deep breathing occas. We are at a major BT center and still can't get any Accutane, etc.. When we left the appt last week, we agreed not to tell anyone in the medical community what we are doing on our own. They really don't care about it. I suppose they are too busy, etc.. But we were a bit discouraged with his response. You can't argue w/success though and Ben Williams has success! Use the doctor for what you can- the medical portion is important too but keep researching yourself too.

My husband was diagnosed w/ an egg sized GBM tumor 7/9/2012 and has completed surgery, radiation and chemo, now in a clinical trial targeting the EGFRvlll stem cell.