Sister with a new diagnosis of Grade 4 Glioblastoma

She is 47 and in relatively good health. They resected greater than 95% of the tumor 2 weeks ago. Today she is meeting with the Oncologist and Radiologist to start the standard treatment. I am floored and overwhelmed. I am a nurse anesthetist (masters in anesthesia) and I have been doing nothing but reading as this is out of my area of expertise and I am the only medical person in the family so they rely on me to have answers. I know everyone plans on being the exception and beating it. We are planning that too. Any advice on suppliments/diet to ease chemo? Am I right in assuming you can't start trial meds until the standard treatment fails?

Hi Cindy,

I'm sorry you're joining us on this rocky road.  My husband was dx on 5/1/09 so I'm relatively new to this too.  It's all frightening and overwhelming.  We went through the surgery, radiation, chemo...the whole shootin' match.  My husband is now 5 days on/23 days off Temodar.  I have to say, for him anyway, Temodar has been pretty well tolerated as long as he takes the anti nausea meds as prescribed.  He hasn't had any issues with nausea...knock wood.  I think the hardest thing for him has been the dexamethasone/decadron.

Hang in there!  You'll find a lot of advice and support here.  You're sister will get the information she needs right now from the oncologist and the radiologist.  This is a "one-day-at-a-time" process.

Wishing you peace, support, and love...

Peggy aka...Mrs Bill  

Dear Cindy,

Yes, one day at a time. COMFORT is key but also having a plan. As soon as you have a plan, you feel better. And regarding the awful prognosis, you know as a nurse that the average is fairly meaningless for any one person. Half the people live longer and some of that group goes long! Tell your sister she can go long! The tail of the curve, so to speak, has no end. There are GBM survivors! Check out www.yasg.com .

There are some trials for people who are newly diagnosed. Look at www.clinicaltrials.gov . It's a government listing of all trials. You enter in your specifics to narrow it way down. One thing you'll hear again and again on this forum is to get a good team of doctors. This almost always means a major brain tumor center or teaching university hospital. The ones you'll hear about the most are Duke, MD ANderson, UCSF, Cleveland Clinic, Cedars-Mt Sinai, Harvard-Dana Farber, etc. If you can't or don't live near one, then you can visit for a consult. We did that in the 4 week 'rest' after the first 6 weeks of Temodar and radiation therapy. It's peace of mind... and any peace of mind is precious, as you can imagine.

Someone here knows a little something about almost any question. So sorry about your sister. I know you all will surround her with love. It's a terrible shock... one I haven't really recovered from. All I know is that love helps a lot.

Sarah

mother of Andy 27 dx gbm/pnet Jan. 09

(pnet is another kind of brain tumor... he got 'em both. yuck)

On Oct 27, 2009 9:35 PM MrsBill wrote:

Hi Cindy,

I'm sorry you're joining us on this rocky road.  My husband was dx on 5/1/09 so I'm relatively new to this too.  It's all frightening and overwhelming.  We went through the surgery, radiation, chemo...the whole shootin' match.  My husband is now 5 days on/23 days off Temodar.  I have to say, for him anyway, Temodar has been pretty well tolerated as long as he takes the anti nausea meds as prescribed.  He hasn't had any issues with nausea...knock wood.  I think the hardest thing for him has been the dexamethasone/decadron.

Hang in there!  You'll find a lot of advice and support here.  You're sister will get the information she needs right now from the oncologist and the radiologist.  This is a "one-day-at-a-time" process.

Wishing you peace, support, and love...

Peggy aka...Mrs Bill  

For my sister, the dex has been rough. She can't sleep on it and feels terrible most of the time. They did just cut her dose. I hope that helps. Thank you so much for your reply. I know the nausea thing would be terrible for me. We will try to avoid it with her. Does your husband take Zofran?

I am a 1 yr survivor of GBM4, diagnosed at 49.  I am a medical technologist or the new term is clinical laboratory scientist.  FOODS TO FIGHT CANCER by Richard Beliveau Ph.D. and Denis Gingras Ph.D. is excellent.  Don't worry if the chemical background stuff scares you because it is VERY READABLE for everyone.  I would highly recommend this to everyone, whether you have cancer or not!!!  Be careful if supplements are taken, as I read, they can sometimes interfere with the chemotherapy. 

You're probably right in your assuming that trial meds won't be given until standard treatment meds are exhausted.  Trials are conducted under strict conditions to determine outcomes under controlled circumstances. 

I pray every night for all GBM patients and survivors.  God bless.

Cindy

I'm sorry.  It is a shock of a diagnosis to say the least and just tips your world upside down.  It takes a bit of time to get you footing but you will.  There is no choice.  There are quit a few trials that only apply to newly diagnosed.  You want to check these out right away because some treatment may exclude from other trials.  There is a good site too virtualtrials.com , the trials are active trials. I understand the radiation/temador 30 days is standard and that's what my husband did.  Now they also offer avastin in addition in a trial.  Pros and Cons to everythings.  Melatonin is said to aid the radiation,  20 mg.  10 x 2 daily.  Any of the anti inflammatory things are good, pineapple, ginger.  Goggle Ben Williams, long term survivor.  Also there is a good book Anti Cancer, a new way of life by David Servan-Schreiber, MD, PHD, has a tumor not sure what grade.  You sister is blessed to have you as an advocate.  This is a great site for comfort and support and information.  There is also a good site for treatment info. on Yahoo Groups, brain research group.  One day at a time.

Hug, Donna wife of Rob, dx 12/08

Others had some great advice! As for chemo- Temodar is very tolerable for many people.  Zofran is great, and is a MUST 1 hour before chemo.  Ginger tea has been a big part of our lives, too.

As for trials, my husband has been part of one- a vaccine that accompanies the standard Temodar (12 months).  Trials are out there now, so it is possible.

Good luck to your sister, and your entire family.

Hi Cindy,

We have all been blindsided by the GBM IV diagnosis but you must keep in mind, as Sarah said, that there are survivors out there. A Positive Attitude is a Powerful Force ---this is posted in the Preston Robert Tisch Brain Tumor Center office at Duke. My husband was dx in February of this year.  He had a gross total resection at Duke and qualified immediately for their CMV vaccine clinical trial. He started with the standard of care -- Temodar and Radiation -- several weeks later he began the vaccine and Temodar.  Call the major Brain Tumor Centers, again, something that Sarah suggested. I don't know where you live so don't know what is easily accessible to you. I believe Duke is still taking people that qualify into the trial that my husband is participating in. Just a thought.

In regards to books, my parents gave us The Anti-Cancer. I do not recall the author (and am too lazy to go upstairs to find the book).  The author is a doctor himself who was doing research on brain scans.  The study participant who was supposed to go in the scanner one night did not show up so this doctor/author went in instead.  Turns out his partner saw a mass on his brain and it turned out be a GBM IV!  A total fluke that the guy was in the scanner.  He wrote a book about his experience and the foods he ate, etc.  He is a long-term GBM survivor. I have not read the entire book -- too much to process all at once when you are totally exhausted and overwhelmed. One of these days I will pick it up, again.

Cindy, please know that we are all here for you. The first few weeks and months are surreal but I promise that you will all get through this. Please tell your sister that she is in my prayers and thoughts.

Holly

My sister is 53 and was dx on 7/28/09. She had no nausea and very little fatigue for the entire 6 weeks. A few short term memory issues. She went back to work full time just 8 days post surgery!!

This site is a life saver...literally. I know that you are in shock but you will move forward. 95% is a pretty nice number to look at! Stay positive, stay on this site and keep on sending out the love to your sis :)

Marilyn`s sisters

My sister is 53 and was dx on 7/28/09. She had no nausea and very little fatigue for the entire 6 weeks. A few short term memory issues. She went back to work full time just 8 days post surgery!!

This site is a life saver...literally. I know that you are in shock but you will move forward. 95% is a pretty nice number to look at! Stay positive, stay on this site and keep on sending out the love to your sis :)

Marilyn`s sisters