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Are there any survivors of Pontine Glioma

pab11
Posts: 4
Joined: Dec 2009

Can anybody tell me of any kind of treatment that worked on this type of tumor?It would be deeply appreciated.Thanks

Me
Posts: 1
Joined: Feb 2010

I am sorry I don't have it in me to respond again, I spent the two hours typing and crying...Maybe my response was too long, I don't know. But this is very disheartening and my response may have been rejected due to an "Alternative" treatment. It was my first post ever on a blog and the only reason I joined was to respond to you. I hope this one goes out okay and if there is a way to contact me, please let me know or vice versa. I need to rest now. My heart goes out to you, please don't give up. "Cancer Doctor in Texas" Alternative treatment, don't know about survivors spoke with 2 mothers and one teenager over the phone...I don't know if the stories were true. I will try to explain more later, please anyone who would like to talk to me or has a question that I might be able to help, don't hesitate to ask, I personally don't know of any survivors. I will definitely get up the strength and courage to assist with "Pontine Gliomas".

-Me

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

"Cancer Doctor in Texas"? you mean Stanisław Burzyński? Please read here before even thinking about referring anyone to him: http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/burzynski1.html

flackaff
Posts: 1
Joined: Sep 2010

I'll try to keep it short which isn't easy in my case. I was born in 1975. Sometime in my childhood, unknown to me, I was afflicted with a low grade Pontine Glioma. My first remembered symptoms were when I was 11 years old, and I tended to favor my right ear when listening. I never thought I had a serious illness, I attributed it to "normal" loss of hearing.

In 2007, at the age of 33 I took a commercial flight, and when I landed, the pressure had caused the Tumor to spew water all over my brain. It caused my face to go numb, and my left eye to not track, the eye lid wouldn't close. Almost all function to the left side of my face was gone. I had a brain tumor slowly growing inside my head for over 20 years, and I never even knew it.

I went in, and that day had a CT scan done. They noticed that there was "a massive lesion" in my brain, but without doing more detailed scan's couldn't tell me more, other then that this was deathly serious.

The emergency room doc's sent my records over to the University of California's Brain Tumor Board, who flatly told me that no doctor in the world could surgically remove this tumor from my head. That left me with only Chemotherapy and Radiation treatments. I then went to the Nevada Cancer Research center in Las Vegas, where I went through 12 Weeks's of aggressive Chemotherapy (Temodar) and 6 Weeks of Radiation (IGRT) treatment. I also was on massive steroids for almost 2 years during my treatment and recovery.

I would like to say that I have smoked Marijuana since I was 12 years old. I always felt compelled to smoke it. Now, I have a strong feeling that it helped slow the growth of my tumor along the way. I just want to interject that I believe 100% that my "Lifetime of smoking marijuana" contributed to the slow growth of my particular tumor. With that being said, Marijuana also helps me deal with the side-effects from the Chemo Therapy, Radiation, as well as the day to day pains associated with having a massive brain tumor. I know that most people would not consider giving their child marijuana, but I would recommend that you consider it in every case of this type.

I would say that the treatment had success. It's been almost 2 years since the end of my treatment, and the symptoms of my tumor are getting less and less noticeable. I still feel the effects of the treatment. Lack of appetite, nausea, painful joints, headaches from the tumors. However, I have chosen to treat my pains with massage, and marijuana vs Prescription pills.

I would highly recommend both Temodar chemotherapy, and IGRT Radiation treatments. The Temodar, while very harsh, while teamed up with proper Radiation treatment did quite well for me. It wasn't easy to do the Chemotherapy, but in the end it was quite worth it.

I would also recommend that you watch your steroid level's while undergoing treatment. It's very easy for a doctor to over-prescribe steroids, and if you are on them for a long time, the side effects can be worse then the Chemotherapy.

I hope this info helps, feel free to reply if you have any other questions.

-Frank Lackaff

tmfaubus
Posts: 23
Joined: Jan 2012

Are you still there ?

TessaHouse
Posts: 1
Joined: Jul 2011

My 3 year old nephew just got diagnosed with this type of tumor and currently recived a biopsy to determine the type because his tumor was so atypical in every aspect. Now he is in acoma because of all the swelling. I was woundering if anyoen knows of any surviors of this type or treatmens/clinical trials they have heard of. Please let me know

Valgras
Posts: 2
Joined: Jul 2011

My son has had a low grade pontine gliom for five years, he is six and a half now. The only treatment that was effective was radiation, which he had last year and which saved his life, for now. If this is a low grade tumor, make sure that he gets radiation. Also make sure that you get expert opinions from the best specialists such as st judes or Boston childrens. We were given misinformation and misdiagnosis twice by doctors at state university hospitals which delayed his radiation treatment.

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