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We haven't reported in in a while. My son was had a GBM diagnosed at New Orleans and MD Anderson in 2005 with a GBM. Rad'n Tem. and experiemntal treatments with Avastin/CPT-11 and no reoccurance at primary site. One is never out of the woods but great hope. It is no longer a death sentence. There are numberous new treatments never give up. He is well and outside of being baldis a great looking 50 year old. 

My son was diagnosed in 2005 with GBM 4 and underwnet surgery at Oschner in New Orleans and a month later at MD Anderson in Houston followed by Temador and radiation therapy. This was followed by Avestin and CPT 11 for a year. He is approaching his 50th birthday without any indications physical or mental for over 12 years. There is certainly hope for all that seek advanced treatments. Good luck and do not give up! Numerous new therapies beginning to give these greater than 10 year survivals. 

On Nov 25, 2016 8:20 PM julesaxon wrote:

On Nov 25, 2016 6:16 PM markvh wrote:

On Nov 25, 2016 4:06 PM donnaruth wrote:

Just a note to offer some encouragement -- just passed 9 years since my GBM IV was discovered.  Short story - surgery to remove, radiation, started Temodar, moved to CPT-11 and Avastin because of questionable MRI, no change on every 3 month MRI's (still have them).  Over the years I went from every week treatment to every other week to every third week to once a month to every other month and will be on every 3 month treatment forever.  Dropped CPT-11 about 5 years ago and just take Avastin.  Take 1/2 500 mg Keppra twice a day.  Feel fine -- have survivor's guilt but wanted to share my story so others can know the numbers may not be with you, but there are folks out here that have a positive story.  Just wanted to share.

Donna

Thank you Donna,   As husband & caregiver for my wife.   I really appreciate that positive story.  my wife was diagnosed last October, (10/2015) with GBM IV went thru two sugeries by Dec. last year, and then radiation, followed by 350 mg of Temodar each 28 days since March.   She's been on 1500mg of Keppra twice/day as well.   The MRI's do not indicate new growth, but swelling is putting pressure to where they are using Decadron.  The doctors are talking about starting the Avastin this next period, (about 12/7/16).  Have not heard anything about "CPT-11".  What is that?  

I'm glad to read these success stories. I too had two stage IV GBM's in a 12 month period in 2013 but after having Gliadel wafers implanted during my second surgery have only had clear scans since then. We can beat this thing

My son has had eleven yrs Gliobastoma free. Avastin/ CPT-11 after surgery/ radiation/ Temador. Good luck, there arte long term success stories out there. 

Many of us that have taken care of GBM (diagnosed at major center via biopsy) patients who have undergone complex therapies that have deviated from the standard of care, understand the sense of bewilderment that faces decisions on long term treatment. It is obvious that for most the standard of care is (surgery, radiation,Temodar) is the starting point. Care must be taken with the attempt to mix anti-oxidants in the diets of GBM patients taking various medical therapies, as it is believed many cancers are killed because of their susceptbility to reactive oxygen species generated by the treatments. Please take the advice of your Cancer specialists. As a medical scientist whose son is a GBM survivor of over eleven years, this disease can be treated. Numerous survivors are now occuring. Hopefully we will find that common thread and a perferred treatment regimen. Do not give up hope or begin using non-traditional medicines before you exhaust what science based medicine has to offer.

On Jul 15, 2016 7:46 PM Meghanisms wrote:

Hello all, my name is Meghan, my mother, Sally was diagnosed with GBM back in april. They found a total of five cancerous tumors in her brain, two of which were very small, three were bigger. She had the biggest one removed, and then underwent 6 weeks of radiation and chemo. We actually just found out yesterday that the cancer has progressed and didnt seem to want to be responding to that particular treatment, so now we are looking to dana farber in boston for research and clinical trials as well as startign her on avastin next week. I'm...I'm scared. We all are. She's made it clear shes going to keep fighting, that she has no intentions of going anywhere. Shes only 52, she's young and healthy apart from this. She eats a hell of a lot of berries and I've started to tell her to cut back on dr.pepper "" target="_blank" rel="nofollow">http://dr.pepper " target="_blank" rel="nofollow">dr.pepper because tumors need sugar to survive. I keep tryign to tell myself that just because the radiation didnt work it doesnt mean theres no hope. I'm trying to research what i can. I guess I came here to find out if anyone else knew someone who had a similar set of circumstances. They had this diagnosis, radiation didnt work but then a trial did. She has a blood clot in her leg too. I've heard something about raw cannabis juice helping combat cancer but My mom is allergic to soy, i have no idea if the juice would have any soy biproducts or anything close to that.

Dear Meghan, 

I am always saddened to see mail in my box from CancerCompass as it mean someone id looking for hope. However, I am delighted to tell my 47 year old  son's story, it demonstrates there is certainly hope.Diagno sed (2005) at Oschners in New Orleans (Surgery minimal resection) and subsequently at MD Anderson with a very large stage 4 GBM (additional surgery in Houston) followed by radiation and Temodar then immediately on to CPT-11/ Avestin (without waiting for re-occurence) experimental program for an entire year. My son has been cancer free for 11 years without any paralysis or mental issues. I think the unusual protocol of of not waiting for reoccurence may be why this use of CPT-11/ Avestin was so successful. Unfortunately, my son is the only one I know of done this has recieved this regimen in that particular sequence. All my good thoughts and prayers for you and all of you undergoing the ordeal.

Best Wishes,

Don Owen

My son stayed on the experimental treatment one year. The others in his group did not-about 12-15 people (ave 3 months)-all are gone. Stay on the treatments as long as you can. Tired is preferred to gone. As with most cancer blogs-NEVER do the so-called natural therapies as a replacement for modern clinical care. MRI's and CT scans can not determine type of brain cancer- only a biopsy. Many non-biopsed brain cancers are mis-diagnosed as GBM's - therefore "successful" treatments - may actually be very slow growing brain tumors of other types. We will be successful in defeating this disease- Please do your home work on the Internet- find the experimental programs--get agressive- get in the programs. Never gice up more and more cases will be in re-mission or even cured!
I reply every year or so to this blog. I hope everyone gets encouraged by the good results reported. My son 45 years old has been GBM free for 9 years. Diagnosed and treated at MD Anderson, standard of care first: surgery, Temador/ Radiation, then experimental , CRT-11 and Avastin for one year. Numerous new technologies and methodologies becoming available, good luck and God Bless. Don Owen
My 45 yr old son have GMR IV in 2005 surgery in New Orleans,radiation plus tem then avastin plus isomertropase inhibitor in ms Anderson Houston. Cancer free nine years! Younger people are doing better. good luck we'll all be praying

On Jun 11, 2013 11:54 AM Agrestigrl wrote:

I was diagnosed 6/2011 with stage IV GBM, I was found having a seizure in my home and at first THET thought was a bleed, only a few weeks later to discover a 4cm mass under the blood on follow up. It has been a long journey, though luckily I live in a state where some of the best cancer care is located,the mass was respected and 3/4ths removed, I beg and radiation soon after, twice a day for many weeks, followed by Temodar which I was unable to take as I repeatedly required platelet infusions.so "" target="_blank" rel="nofollow">http://infusions.so " target="_blank" rel="nofollow">infusions.so it had to be stopped , another chemo started, which I unable to remember the name, it was a clinical research med, it unfortunately did not work and had to be stopped, another chemo began after a 4 month wait in order to give my labs time to get normal, bausutinib began, which seemed to work in begining but then again tumor grew, Avastin infusions began which we at first had a nice response to, again the beast as I call the GBM grew. avastin will continue but lumestine is being added in order to try to hit tumor harder. The beast is currently inoperable as it has wrapped itself on the main vessel of the brain.i also am on decadron for brain swelling and I had sodium washed at one point, keppra twice a day, nuvigil was begun but insurance will not cover it, I have also tried novocure , but had to stop as I was already on one clinical trial and they would not allow 2 at same time, good luck to all, try to stay positive, my prayers go out to all affected by this horrible disease

Dear Agrestigrl,

My 44 year old son was diagnosed with S4 GBM in Oct 2005. After the usual surgery (in New Orleans- just post Katrina ) we when to MD Anderson in Houston for additional surgery then Radiation and Temodar (Feb -March 2006). We returned to New Orleans and didan entire yearof Avastin and CPT-11. We have seen no changes in Rob's MRI in the last 7-8 years.

It does happen, please do not give up hope. Good luck and as always those of us that read and write on this Blog with pray for your treatments to be effective.

Dear Friends,

I report every year on the long term survival of my 43 yr old son on this board. Dec 5 2005 was first surgery. Treatment was unusual: Radiation/ Temador (several months) then followed within three weeks with a year of Avestin/ CRT-11. He was diagnosed at Oschner in New Orleans (surgical debridement was done there), followed by more biopsies at MD Anderson (GBM stage 4). This is not a case of a mis-diagnosis or a lesser tumor type- rather the response of an aggressive GBM to combined radiation/chemotherapy. He has been in remission for 7+ years without any physical disabilities or limitations. We wish all of you the best in your time of pain and suffering- also in your successes. Hopefully, the pros with find common markers that allow us to determine therapy regimens. As a medical researcher I remember the early days of treating childhood blood cancers- we had similar poor results in many cases yet some responded very well. We appear to be at a similar crossroads in treating brain cancers.

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About drowen

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Brain Cancer
Cancer Treatments

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