I have been diagnosed with Glioblastoma.

[3prettyprincesses]

Thank you for sharing her story. I will read more!

Thank you everyone for the offers of prayers and good thoughts. As I was recovering in the hospital I just kept praying that I could return home to be a whole wife to my husband and a whole mother to my children. They are my life. We were able to come home Christmas Eve! The side effects that my Neurosurgeon thought were possible (weakness and vision problems on my left side) have not been a problem at all!

You will most certainly be in my prayers. I hope you'll keep us updated too! I also wanted to add to remember if you read online about statistics, they are only an average. There are people who beat the odds and amaze their doctors with brain tumors. I have a friend who has an anaplastic astrocytomagrade 3 and they told her to expect about a year. It's been 3 years and she didn't experience any issues post surgery that they were expecting. She's doing really well and beating those statistics. Keep positive!

 

[disfan07]

I would reccomend also looking at johns hopkins hospital.They are the top hospital in the country overall and they rank #3 in cancer just behind MD Anderson in texas and Sloan Kettering in New York

 

[bumbershoot]

Since you are interested in alternatives, you should contact this guy.

DH had a benign, but rapidly growing and inoperable brain tumor when he was in his 20s. The diagnosing docs up at UW medical center gave him 6 months, it was growing that fast. He read into the radiation treatments and side effects, and decided against it.

A friend of his gave him a video that mentioned the guy I linked to above, and DH contacted him. He facilitated DH contacting others, and with the other peoples' help he healed 100%. It was all out of pocket, including the followup MRIs, because he had no insurance at the time, but inside of 6 months the tumor was already starting to shrink. He never had any chemo or radiation.

I'm NOT saying that it will be the same situation, I'm just giving DH's experience.

It's worth contacting the guy (he does charge a one time fee, from what his website says) to see if he has seen anything that helps and if he has any referrals for you.

I will also tell you...though the world has changed since the early/middish 90s, it was scary scary for DH to tell people that he was rejecting the western medical treatment. People HATED him for it. Even though it worked, some of his friends still have problems with it. And if you find some alternative treatments that you do in conjunction with the western stuff, people will poo-poo it if you tell them. So be strong.

 

[Green Tea]

Have you looked into Duke? I think it this is the type of tumor they are
leading the vaccine research on.

I am realy sorry and wish you well.

 

[PoohsFriend1]

My sister was diagnosed with glioblastoma stage 4. Well that was in 2003! She underwent surgery & radiation and still is on quite a drug regimen, but doing fairly well. She still as some issues with siezures, but they are usually minor. Stay focused on recovery! Best of luck to you

 

[Disneylover79]

I will keep you in my prayers...also please keep us updated

 

[DawnCt1]

I will be thinking and praying for you every day Amy. Best of luck in your research and in the treatment you chose.

 

[luvmarypoppins]

So sorry you had to hear this and for all you have gone through so far.

I always say, cancer is tough and we have to fight tougher!! So put on your boxing gloves and shoes

I know another posters husband went to Duke. And the doctor you are mentioning was he on tv once for thinking "out of the box?".

Probably there is so much to think about and your head is spinning and going crazy. Just take it one day at a time. Because it can get really overwhelming.Have a jounal/notebook to write things down, information etc. etc. Dont be afraid to ask your dr. any question, even if you think its strange or crazy. My cancer is a rare agressive variant of the normal stuff, so its just watch and wait and keep testing. If mine comes back I think I will ask about going to Sloan Kettering since I live in NY. I used to live in Texas so I know MD Anderson has a good rep.

If you want to hang out with the breast cancer survivors here on the dis, they are a great source of encouragment. (I dont have breast cancer but they have adopted me, we take anyone over there Just look for the thread on the comm. board.

Wisihing you all the best. Sending prayers and good thoughts your way.

 

[RadioNate]

Actually, Duke has set up an appt. for us next week. We are first hoping to get into Dr. Burzynski's clinic but if not we will visit Duke. We've spent 2 days this week just getting my medical information sent to all of these places.



After that Doctor treated me for sinusitis with no changes we left him for an Internal Medicine specialist. Our new Doctor sent me for an MRI immediately and within 2 weeks I was having the surgery. I'm so thankful we changed.



Thank you for sharing her story. I will read more!



If you don't mind I'd love to hear more about their experience. Thank you so much for replying!

Thank you everyone for the offers of prayers and good thoughts. As I was recovering in the hospital I just kept praying that I could return home to be a whole wife to my husband and a whole mother to my children. They are my life. We were able to come home Christmas Eve! The side effects that my Neurosurgeon thought were possible (weakness and vision problems on my left side) have not been a problem at all!

I will ask my cousin when I talk to her. I know that they didn't go to Dr Burzynski until conventional treatment was exhausted. Many traditional Oncologists think he is a complete quack. She was VERY ill when she saw him (cancer in the breast, bone, lungs, liver and brain.) Under his care she was able to see both her daughters married and travel extensively.

I'm so happy your were finally diagnosed correctly and that the surgery was as successful as possible.

It may take a few days for me to get in touch with her. I will PM you when I do.

Since your Duke appointment is next week. I would also see them. Exploring all your options is important.

I know my Aunt regretted not talking to renowned cancer centers in the beginning. She just saw the oncologist at her local hospital.

A friend had great treatment from MD Anderson in Houston.

 

[Meriweather]

Amy....so sorry to hear this.
No help with the medical part, just wanted to say I'll be thinking of you and your family and wishing you the best medical care and outcome.

 

[RitaZ.]

Hugs to you. I wish you the best.

OP, what part of the brain is the tumor located?

 

[autumnpalm]

I don't have any experience with Glioblastoma but I wanted to send my prayers. I pray for not only healing but peace and comfort for you and your family. Keep us updated and I wish you nothing but the best. Miracles happen every single day.

 

[aprilgail2]

I would recommend going to Sloan Kettering in NYC- no better place to go!

 

[cantwaitvaca09]

May God Bless You and watch over you and you family.
I will pray for you!

 

[The Mystery Machine]

 

[minniebeth]

I will keep you in my thoughts and prayers and wish for you to find the best treatments possible! One day at a time!

 

[imabrat]

I'm sorry. I lost a good friend last April from Glio, and it hurts every day. I do a few other people who've beaten Glio, though. It's a very strange disease. Duke is top notch from what I heard.

 

[jel0511]

I would recommend going to Sloan Kettering in NYC- no better place to go!

Actually the best place for Brain Cancer is Duke University and the OP has an appointment there scheduled. They are WONDERFUL there, I know someone who currently is a patient there and receiving their chemo from their local oncologists. You will most likely receive the standard protocol first, than after that they consider clinical trials and alternative treatments. The person I know currently under the care of Duke was diagnosed with the same thing as you in April of last year and currently has a "clean" MRI. They are the best for a reason.... They believe there is a cure for brain cancer. Dr Friedman is AWESOME!!!!!!

 

[nkjzmom]

Hugs to you. I wish you the best.

OP, what part of the brain is the tumor located?

The exact quote from my report states that it was in the right mesial temporal lobe extending to the atrium and the ventricle.

I'm sorry. I lost a good friend last April from Glio, and it hurts every day. I do a few other people who've beaten Glio, though. It's a very strange disease. Duke is top notch from what I heard.

I'm so sorry about your friend. It definitely is a tough one to conquer. If you feel like talking about your friend I'd love to "listen".

Actually the best place for Brain Cancer is Duke University and the OP has an appointment there scheduled. They are WONDERFUL there, I know someone who currently is a patient there and receiving their chemo from their local oncologists. You will most likely receive the standard protocol first, than after that they consider clinical trials and alternative treatments. The person I know currently under the care of Duke was diagnosed with the same thing as you in April of last year and currently has a "clean" MRI. They are the best for a reason.... They believe there is a cure for brain cancer. Dr Friedman is AWESOME!!!!!!

Thanks for the confidence boost. Hearing that my cancer would likely not be as responsive to the Temodar (chemo) has really saddened me. That's why we are really pushing for something more than the "standard of care".

 

[JerseyJanice]

Wishing you much luck in battling this illness. It is a tough one.