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Son 23 diagnosed with Grade IV Glioblastoma; need some advice

sparky14
Posts: 2
Joined: Jan 2014

Since our son was diagnosed on 12/19/13 we have been trying to read up on as much info as possible regarding treatment etc.  The surgery to removed as much of the tumor as possible and we have been talking with the oncology drs re: chemo and radiation, and possible drug trial in Seattle.  Our son is still at Prov and will be discharged this week.  We are still in shock and trying to just stay ahead of everything from getting insurance to getting ssi in place to deciding which care treatment plan will be best.  

Does anyone have any experience with Ketogenic diets as part of the treatment protocol for Glioblastoma?  We have heard that it is one possible way to help support the body while going thru treatments.  Also, any helpful suggestions about how to support him during this would be appreciated.  

 

thanks.  

 

 

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

We have been in your shoes almost three years ago.  Yes, waiting is the hardest part of your child being diagnoised with a brain tumor.  Thank goodness your son's tumor was removed, and he is on the mend, being released from the hospital.  Now comes the waiting game, it takes awhile for us is was almost 7 weeks, to properly dx the tumor ( Benjamin's was dx at John Hopkins, because Mayo could not) which took time, plus a Genetic Molecular Study was done.  This test determines the 1p19q deletions- which are excellent .  These deletions make chemo and radiation treatment effective on brain tumors, along with survival. Our son's treating facilities are Roger Maris Cancer Center, Mayo and John Hopkins. Having an oncologist that is in the top 1% in his field in the USA, and radiologist who is very well published, along with being tops in his field.   They have treated patients who are 20 and 30 year plus survivors, so please take a deep breath, and enjoy your son as he is in the healing stage.

Our family fell apart with hearing the words our son had CANCER, then we gathered our wits, and began the fight mode.  Our physicians provided us with reliable websites - which we have posted on this site, along with diet, treatment plan Benjamin used, medications that worked and why they were used.  Benjamin has been cancer free since the surgery to remove 99% of his OLI-11/111 tumor, did not suffer side effects from this surgery.  Benjamin had 6 weeks Radiation and Chemo together and then another 6 months of Chemo(temodar) high dose.  Today he is working and worked through his treatments, hanging with friends, ice fishing and enjoying life to the fullest.

Make sure you surround yourself with family and friends, keep busy and know that people are there for you ALWAYS.  Never give up hope, and fight, fight and fight.  Find a treating facility you are comfortable with, ask so many questions, even if they are repeated until you are satisfied with the answers.  One thing we did learn is if you hear a doctor give you a timeline, hunt for another doctor- there is no timeline, everyone is different. Also, if you hear lets WAIT and SEE, run to another facilitiy, and when you read other post, you will get your answers to this one.

Will be praying for good results, best treatment plan and for the courage to FIGHT!

(((HUGS)))

Carol

sparky14
Posts: 2
Joined: Jan 2014

Hi Carol:

Thank you for your kind and encouraging words.  Yes the waiting is EXCRUCIATING!  I burst into tears when they first told me the diagnosis....then I got MAD....and have boxed up the fear....now we are reading as much as we can, talking to drs, patient advocates, etc to learn as much as we can to prepare to FIGHT for and along side Josh.  Excited that he gets out of Neuro Rehab is two days!!! Laughing

I totally agree with your assessment about doctors who give timelines.  The neurosurgeon who met with us a week after surgery said our son would only live 6mos without treatment; 12-18 mos with chemo/radiation.  Then the radiation-oncologist who came in said he didn't believe radiation would even work....basically...trying to hand us a death sentence...both of these doctors are no longer part of our TEAM.  We found a very compassionate oncologist who we like....no timelines....and he is open to looking at ALL options.  When told  him we were interested in looking at clinical trials he found a colleague down in Washington state working on a drug trial that looks promising.  It uses the standard protocol of Temodar and radiation plus the drug being investigated.  Did you consider drug trials when you were looking at treatment options???   

PS....thanks for the hugs!

Mary

 

 

manwithnoname
Posts: 399
Joined: Jun 2012

did Keto diet, unfortunatley it didn't work, I would do it during RT if thats an option, its good to be optimistic, we were too until it came back, now 9 brain surgeries later and 2 rounds of RT I can tell you do NOT underestimate this tumour.

Our son is 10.

I have some recommendations that might help. PM me if interested. 

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

I  wonder why your physicians presenting you a game plan, when Josh's tumor has not even been dx - wait for the results from pathology, molecular genetic testing before determining treatment.  It takes about six weeks, by then your son will be recovered and rested from the surgery.  Yes, he will be tired, stamina is not there, requiring lots of rest.  Little things like going for a walk, even when they feel wonderul - will wear him out.  Clinical trials were not even an option, being Benjamin was being given the newest and best treatment, with the best results- 20 to 30+ year survival rates.

Benjamin's tumor as I have said, was a OLI Grade II/III, rare, and was dx at John Hopkins, which took about 6 to 8 weeks with all the testing and  then meetings were held with oncologist and radiaologist, for determine treatment plan.  Even though 99% of his left frontal lobe tumor was removed, this tumor has fingerlings that can cross over to the otherside of the brain, even though it is slow growing.  His treatment plan was to treat aggressively, kill all cancer cells and any possible cell right from the start, using Temodar(Chemo) and Radiation together and then enhanaced Temodar(Chemo) for another six months.  Cancer cells will light up green on MRI's, so far none have appeared since his surgery.  On thing we do know, do not take a wait and see approach- get rid of the cancer cells right from  the start.  On this site you will see many patients whose's doctors did the wait and see - never turns out for the best in almost all the cases.

When meeting with Josh's team, have your questions ready to go, don't over read on brain tumors, it will just scare you- an lot of sites are not very reliable with informations presented or it is old information.  We were given these sites:  www.cancer.gov, www.cancer.net, www.update.com/patients, www.nccn.com, and www.rtanswers.org , by our team.  I only picked a few and then moved on.    You have to keep in mind that everyone is different, and what works for one may not be right for another. 

Keeping a positive attitude, along with a fighting spirit does more than anything.  Once we entered the fight mode, there was nothing standing in our way when it came to our son, not insurance companies, doctors, or hospitals.  Never worry about money, there are programs to cover expenses, organizations willing to help.  Having our son's friends hanging around the house all the time was the best medicine, they would take him out for meals, drives, movies and just pick him up for the day or just hang out.  Put as much normal activity in their day as possible and having peers around makes a world of difference.  When Benjamin was in the hospital, the biggest smile came to his face, when his whole class showed up in his hospital room, with balloons, flowers and games. 

Today, we love hearing him talk about his future plans, restoring his 1950 Chevy, ice fishing trips, pheasant hunting and deer hunting trip planned.  I had said one time to him, that I wished it was me, and not him that has to go through this- His answer was:" You would not want this and it is what it is".

Praying for strength and courage for your son and family as you move through this journey called life.  Remember to FIGHT-FIGHT and FIGHT!

An yes we have cried buckets!

(((HUGS)))

Carol

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