My Dad Stage 4 glioblastoma Any Ideas????

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RE: My Dad Stage 4 glioblastoma Any Ideas????

by KrisInk on Fri Feb 03, 2012 11:18 AM

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I have been in a place similar to where you are now.  My dad was diagnosed with GBM in May 2010.  We spent countless hours researching options, alternatives, etc.  There is so much to know; yet, science clearly does not have the answer to GBM.  Some things were did early on that may be of help:

- Read and print the information published by Ben Williams - it is initially confusing, but is the most helpful stuff on the topic:http://www.virtualtrials.com/williams.cfm

- Connect with Jeanne Wallace, nutritionist based in UT, who specializes in GBM - she used to have great articles in the presentations area of her website:http://www.nutritional-solutions.net/

- See supplements and diet changes made by Cheryl Broyles:http://www.cherylbroyles-gbm.com/supplements

- Vitamin D3 - minimum of 5,000 IU per day; Turmeric - daily dose; many other supplements and dietary changes to give him the best quality of life possible

-  Immediately obtain and read these books -Anti-Cancer: A New Way of Life, by Dr. David Servan-Schreiber, andCancer-Fighting Kitchen, by Rebecca Katz.  Both changed my life and my dad's...at least for a while.  Since you'll want to refer to these books constantly, a hard copy is really useful (especially of the cookbook).

  - Another great book -When Life Becomes Precious(not sure of the author)

- Make sure someone in your family understands and works with the insurance company...the Western medical treatments and care your dad will need are wildly expensive (and extend life by weeks or months if you are lucky)

- Take tons of pictures.  Videotape your dad, how he moves, his laugh, his voice, his wisdom to you.  Do it now while he is "well"

- Take care of you as best as possible and know that there are not going to be people who really understand, but there are many who care...

- Be kind to yourself in this process...

- Pray.  Ask others to pray. 

I sincerely hope something above helps.  So, so sorry that your family is going through this...

-Kristin-

RE: My Dad Stage 4 glioblastoma Any Ideas????

by gpmarkb on Sat Feb 11, 2012 10:36 PM

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As I write this my wife is at SCCA in Seattle in a clinical trial.

I went through the same thing in November.  The first critical thing I found that is if you go to a treatment center with specialized treatment your chances go up measurably.  Research shows for this type of tumor getting into a clinical trial almost doubles your chances.

Now comes the hard part if you chosose a clinical trial. Finding the right one quickly, checking financials (usually work out OK), and getting past red tape.

My rules for finding a trial:

1) no double blind studies - my wife isn't a guinea pig

2) no single treatment regimens, studies show multiple attacks help best

3) must be a quality research center

Use the NIH clinical trial finder to find the best study.  This take time you likely don't have. Personally, I would suggest that you get a resection as soon as possible.  There are two options -

1) a clinical trial that uses dye marker - this is critical since as with my wife it is very difficult if impossible to cross the mid section of the brain.  With this they can get out as much as possible.  If you get over 95% your treatment focuses on get the rest out.  If not they have to treat the whole brain essentially.

2) go to a clinical trial where they use tumor material to create antibodies.  this means moving fast since the surgery can only be done there.

In my wife's case we settle at Hutchinson Cancer Center and their trial.  The reason is she has the mgmt marker.  If you have this marker (and 60% do) then you prognosis is roughly cut in two.  Here they modify your bone marrow and up the chemotherapy beyone what would kill a normal person.  They also save good marrow, which could very likely be needed in the future if furhter chemo is needed.

Any questions, don't hesitate a moment to ask for help.

My direct email and phone number can be put at your disposal.

Note that I am not a medical person, but I am one hell of a researcher and have multiple scientific degrees and was a senior strategist at Intel.

RE: My Dad Stage 4 glioblastoma Any Ideas????

by Ski79 on Wed Mar 21, 2012 07:59 PM

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I am sorry about your dad, this is a good site for GBM resources, check it out: http://GBMResourceCentre.org

RE: My Dad Stage 4 glioblastoma Any Ideas????

by dsnoe on Thu Mar 22, 2012 04:23 AM

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My thoughts and prayers are with you and your family.  This is a hard disease but a positive attitude is essential.  Cherish and embrace everyday as if it were your last.  Also, you are your dad's advocate!!  Get a second opinion on the treatment.  I can't stress that enough.  My husband was told by the Mayo clinic that no one would ever do surgery on him and I took him to MD Anderson and they did surgery and got 100% of the tumor.  Everyday is a day closer to a cure so your goal is to keep him doing as well as he can until a cure is found!! Chemo and radiation can work but these tools work even better if some or all of the tumor can be removed.  Never give up hope and always ask questions, it is your right!!

RE: My Dad Stage 4 glioblastoma Any Ideas????

by Honeyb8497 on Thu Mar 22, 2012 02:26 PM

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Mishee,

I felt compelled to add my take on this dreaded disease.  My sweet husband was diagnosed last Valentines Day with Stage IV GBM.  It started when he had a seizure on New Years Day 2010.  They did a craniotomy and he has done 6 weeks of radiation and Temador and now is taking Avastin every 2 weeks via IV.  He is also taking Temador 5 days on and 28 days off.  He is doing remarkably well.  He tires easily but is active and leading a blessed life.  A year ago they only gave him 12-14 mos.  and this year we are planning an Alsakan Cruise in May (on his bucket list--lol).  He has the mentality that he is not giving in and will fight as long as God gives him breath!  He was 59 years old when diagnosed.  Please tell your Dad to stay strong and do not listen to the "numbers" the Dr. like to throw around as far as longevity.  Maybe my husband is one of the few long term survivors but mental attitude does help I am certain. 

God bless you and your family. 

Barb

RE: My Dad Stage 4 glioblastoma Any Ideas????

by babyangels on Tue Mar 27, 2012 09:09 PM

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HI Mishee,

I replied to your post back in February as well.. My dad was diagnosed with GBM in November 2011.   Please go to this website... or onto their facebook page.  www.endbraincancer.com is the website and their Facebook page is Chris Elliott Fund for Glioblastoma Research.  Dellann Elliott is a speaker on behalf of GBM advances in treatment and lost her husband, Chris, to GBM in 2002.   She has been extremely helpful to me!  

Best wishes! 

Maria 

RE: My Dad Stage 4 glioblastoma Any Ideas????

by orangeblossom on Tue Oct 02, 2012 06:57 PM

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hi there i would like to say how sorry i am about your dad and i too have my mom with this condition, she collasped in june and has had some of the lump removed and been on radiotherapy for 6 weeks and chemo for 4 weeks has she had to stop it because her legs became swollen, she is doing very well other wise and not even had a headache, It's so hard to except what she has , apart from her losing her hair at the back she is still doing everything she normally does. We have to go back on the 22nd oct for the results from the treatment which im so scared of hearing , i am on my own with my 4 year old son and she has been my rock in so many ways and can not think what it will be like not to have her around. You mentioned a diet ? if there is one could you let me know has i think anything is a help just to get more time with her . regards xx

RE: My Dad Stage 4 glioblastoma Any Ideas????

by Honeyb8497 on Tue Oct 02, 2012 07:34 PM

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Sorry to report we lost the battle on Labor Day 2012.  It was a fight for sure but he did very well up until the last month.

RE: My Dad Stage 4 glioblastoma Any Ideas????

by orangeblossom on Wed Oct 03, 2012 09:29 AM

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im so sorry to hear your news, my thoughts are with you all x

RE: My Dad Stage 4 glioblastoma Any Ideas????

by dbrinker on Wed Oct 03, 2012 11:41 PM

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Dear Mishee:

I'm so sorry to hear about your Dad!  My husband also had a large 5 cm tumor but was operated on back in May followed by radiation and Temodar.  We are now on double dose of Temodar 5 days on 23 days off.  You will be in my thoughts and prayers make sure to keep a journal and ask many questions of your NO.  This site is great to reach out people that are in the same boat we are.  Keep the faith keep positive thoughts we are here for you

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