Posted from Toby...

Hello, my name is Toby, and my husband Paxton (age 30) was dx 7-2-08 with GBM, grade 4. It started at the end of May (2008) and I was just getting over a bout with vertigo. Paxton started having some of the same symptoms of dizziness and headache. We thought it was very strange for him to experience this when vertigo obviously is not contagious or anything. He was also very agitated and wanting to argue with me about everything. This is not his nature at all. Then he blacked out and went in to a seizure at work. That is when we knew something definitely was not right. You do not black out with vertigo! He told me at the hospital that he must have done the same thing that morning because when he was drinking his coffee before leaving for work he thought he dozed off and then woke up to burning coffee all over his lap. We figured he probably had a seizure then too since that is not something that has ever happened before. He was in the hospital for two days while they ran tests on his heart and when they couldn't find anything they let him go home. He was extremely rude in the hospital and lost his temper easily with everyone. I was very upset when we left because I knew something was not right and I felt like they let him go because he was being obnoxious. I had never seen him act like this and it just kept getting worse. Less then a week later he blacked out and seized again at work. This time he was taken to our small hometown hospital and they were not letting him leave until they got to the bottom of it. They did an MRI and found a cluster of tumors on the front part of the left temporal lobe. He was sent immediately to the U of M Hospital in Ann Arbor, MI. Since then he has had a craniotomy, 6 weeks of radiation, Temodar-(chemo)-5on / 23off, LOTS of medication and a recent switch to a new chemo regimen of Avastin and CPT-11 every 2 weeks. He has also entered in a study being done at U of M and is receivinig the DCVax injection. His most recent MRI done January 13, 2009, showed new tumor growth and prompted the switch to the new chemo regimen.

We have four children, ages 15, 10, 8, and almost 5. I am eager to learn everything possible about my husbands options and feel that this forum can really help our family in the learning process. The support alone would mean the world to us. This has been a pretty scary diagnosis but we are here because we want to know how to fight this thing. I want to thank Bob & Barb for introducing me to this site. I look forward to meeting as many people as possible and hope that maybe by sharing my story I can help someone else as well. Nice to meet you...

Toby

Toby,

Glad you found us. I'm extreemly glad that your husband also enrolled in the DCvax trial. That is WONDERFUL!!!

Were they able to get a complete resection? lease make sure tat you followthe injection schedule VERY carefully, and make sure that no chemo is received within 1 week of receiving the injection. The results that are being achieved with the vaccines is AMAZING and that's why we exist. Funding these trials, and making people aware of them, as well as assisting with flight assistance is critical to showing the effectivness of the vaccines.

We have alot of exciting things coming to the website shortly, so please let everyone know about us. Also, please encourage everyone to participate in helping us grow, and contribute. Let everyone you know to participate in IGive. They can search the internet and shop online, all while these stores donate to us.

_________________
Bob

Grade III Mixed Oligoastrocytoma
dx 5/16/04 Oligo II Right Occipital
MRI 6/13/05 showed growth 70% resection 9/12/05 Dr Liau UCLA
MRI 11/12/07 showed growth, now growing into Temporal & Parital Lobes
2nd resection 5/15/08 100% resected showed Grade III Mixed Oligoastrocytoma
Started 2nd round of Temodar 5/23 protocol for 8 months 9/21/08
Tolerating it well so far.
Doing:
-Kytril for nausea
-Organic Juicing Daily
-White Tea
-Focusing on Super Foods
-Exercise
-Plenty of rest

f/o Christopher dx 5/14/05 Cavernous Hemangeoma Left Cerebellum
Complete resection Dr Frazee UCLA 9/9/05
www.caringbridge.com/visit/bobchris

Join us in our efforts to raise funds for brain tumor research and support at www.MilesForHope.org

Posted by Barb Gibbs...

Toby,

It just infuriates me that the first hospital did not try to get to the bottom of why he had a seizure (or two). The last I learned hearts do not cause seizures!!! That is like going in with a broken foot and they xray your hand SHEESH!!! Ok, I feel better now.

I am so excited that he is on the dcvax! Bob is on a vaccine trial at UCLA and yesterdays MRI showed no tumor re-growth. He has been tumor free for 9 months now (well on 2/15 it will be)! This is the longest he has gone since diagnoses with no growth. Bob forgot to mention no chemo 1 week before or after injection.

We also have 4 kids age 17, 15, 12 and almost 7. I know how difficult it is with 4 kids. How are they dealing with it? If you ever need another care giver who understands, feel free to contact me anytime!

Barb

_________________
Barb
w/o Bob Grade III Mixed Oligoastrocytoma
dx 5/16/04 Oligo II Right Occipital
MRI 6/13/05 showed growth 70% resection 9/12/05 Dr Liau UCLA
MRI 11/12/07 showed growth, growing into Temporal & Parital Lobes
2nd resection 5/15/08 100% resected now Grade III Mixed Oligoastrocytoma
2nd round of Temodar 5/23 protocol for 8 months 9/21/08

m/o Christopher dx 5/14/05 Cavernous Hemangeoma Left Cerebellum
Complete resection Dr Frazee UCLA 9/9/05

Where can I get more info on this dcvax? Is this still in clinical trials? Is anyone using alternative treatment programs, or just standard of care? I have noticed some hospitals are employing some alternative treatment for mind, body , spirit to heal also. I think the medical community is becoming more relaxed in working with these treatments. Some of my wife's Docs are very closed minded to these treatments but at the same time offer little or no hope. I think you must heal the entire body not just destroy the problem. This will also damage useful normal tissue which must be healed.

Keith,

Many of the trials have limited enrollment due to lack of funding with the current economy. I believe Dr. Yu at Cedars in Los Angeles may still be using a similar version of the dendriatic cell vaccine.

The vaccine does, however, require tumor tissue. This brain tumor vaccine is created using a portion of the patients own brain tumor. This way, it "trains" the dendriatic cells to find any residual cells containing the lysates from the tumor and kill them off.

The statistics are showing that the vaccine is VERY promosing and that it has extended survival by almost 34 months! We are currently working closely with many facilities and the manufacturing company to raise awareness of this vaccine, which will in turn assist them in raising the rest of the capital to re-open enrollment in these trials.

There is some progress finally being made and slow changes in the medical community realizing that alternative treatments DO in fact have a direct impace on the overall well-being of an individual during treatment. There is a link to a good article written by Carolymn Katzin, a certified nutritional specilist from UCLA that you can find in the Nutrition section of our forum.

In addition, please keep your wife active. Based on what I have read on your wife already, I don't see that being a problem. Please contact us Monday at the office. I would love to touch base with you more and see if we can offer you some additional information that would be useful in your journey!

Bob Gibbs
www.milesforhope.org
(727) 781-HOPE (4673)