I have been diagnosed with Glioblastoma.

[pigletgirl]

Many many prayers are headed for you and your family.

 

[RadioNate]

Hi Amy -

I talked to my cousin about Dr. Burzynski. She thinks it is a wonderful clinic. According to her they couldn't help her mom much because she was so ill when she went there and she wasn't willing to make all the lifestyle changes that she needed to.

I do know that it gave her more time and that time was good.

Don't discount Duke, they are doing amazing work. But if you are looking for options in addition to the traditional treatments, they had a good experience with Burzynski Clinic.

 

[minkydog]

No advice, just some hugs. I'm sorry you are having to endure this, but so glad you got the right diagnosis finally. It ain't over til it's over so keep on seeking. I hope your interview with Duke goes well. My father was at Duke when he had mesothelioma. It was an aggressive cancer but they managed to help him to remain active and have good quality of life up to the last 6 weeks. I have nothing but good things to say about Duke.

 

[C.Ann]

I have no information to share, but wanted to let you know that you will be in my thoughts and prayers..

Best of luck to you..

 

[DisneyKT]

I just wanted to say I will be sending out good thoughts and prayers to you and your family..Stay Strong.

 

[Eeyores Butterfly]

No advice, just prayers.

 

[alliecats]

I am so sorry that you are going through this. My brother in law had a GBM. He started at Robert Wood Johnson, had surgery twice at Johns Hopkins, went to MD Anderson but did not qualify for any trials there, and finally ended up at UAB in a clinical trial. This is a tough diagnosis but there are stories of people who beat this.
I will pray for you and your family. I hate this disease and I pray for the day when there is a cure.

ETA: It's been nearly 7 years since we lost him so I may have some of the spellings/names wrong but I think I just remembered some of his treatments. Temodar and BCNU chemo and one surgery to debulk also put in some Gliadel (?) wafers, which I think put the chemo directly in the tumor. I believe that was at Hopkins. I am not sure what they did at UAB in the clinical trial. I hope that helps.

 

[zalansky]

Op, so sorry to see the news. Many hugs to you. I am sure you are planning to fight the good fight, and we're here for you!

 

[Abbie]

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.

I don't want to derail this thread but this post and the accompanying link is the biggest bunch of baloney I've ever seen. This guy, who is not a physician, charges $250 for a telephone "healthcare consultation". From his website: "He understands all types of cancer: breast cancer, lung cancer, colon cancer, skin cancer, cervical cancer, liver cancer, pancreatic cancer, bone cancer, testicular cancer, bladder cancer, stomach cancer, thyroid cancer, brain cancer, kidney cancer, throat cancer, uterine cancer, mouth cancer and other types of cancer. He is the preeminent and authoritative voice of alternative medicine and can mentor you as you work to heal your body.

In addition to cancer, Burton also advises patients on heart disease, diabetes, arthritis, stem cell therapy treatments, depression, anxiety, panic disorder, autism, addiction and many other healthcare concerns and therapies."

Good heavens, he sounds like a regular miracle worker! People like him who prey on folks who are scared and in search of real help are scum. As far as your DH, I'm having trouble understanding how he was given 6 months when he had a "benign" tumor? Makes no sense.

OP, I apologize for the rant. I am so sorry you've gotten this diagnosis but as a pp said, it's tough and you have to be tougher! I hope you are able to get into an appropriate trial and am wishing you all the best!

 

[aprilgail2]

I don't want to derail this thread but this post and the accompanying link is the biggest bunch of baloney I've ever seen. This guy, who is not a physician, charges $250 for a telephone "healthcare consultation". From his website: "He understands all types of cancer: breast cancer, lung cancer, colon cancer, skin cancer, cervical cancer, liver cancer, pancreatic cancer, bone cancer, testicular cancer, bladder cancer, stomach cancer, thyroid cancer, brain cancer, kidney cancer, throat cancer, uterine cancer, mouth cancer and other types of cancer. He is the preeminent and authoritative voice of alternative medicine and can mentor you as you work to heal your body.

In addition to cancer, Burton also advises patients on heart disease, diabetes, arthritis, stem cell therapy treatments, depression, anxiety, panic disorder, autism, addiction and many other healthcare concerns and therapies."

Good heavens, he sounds like a regular miracle worker! People like him who prey on folks who are scared and in search of real help are scum. As far as your DH, I'm having trouble understanding how he was given 6 months when he had a "benign" tumor? Makes no sense.

:

You have to take this from the source-- she believes no dr's are good other than chiropractors...any medicine makes her homicidal or deathly ill etc....not one I would take ANY medical advice from!

 

[Va-bear]

Have you tried Duke Hospital in Durham, NC? A neighbor is going through the samething right now and Duke has given him the best treatment. His doctor is the sameone who treated Ted Kennedy.

Allen Friedman and Henry Friedman at Duke have had some amazing outcomes.

I am very sorry to hear of your diagnosis.

 

[Va-bear]

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.

Just seeing this - so gald you are going there. DO you know who your docs are? (They are all good..._)...Yes, Im biased, I worked in the brain tumor research lab there (and elsewhere) for years and Dr. Friedman was my spine doctor - but they really are amazing.

Look at this story:
http://www.davidmbailey.com/ (especially the bio and treatment part)


Good luck and hope the visit goes well.

 

[4greatboys]

Last month I was diagnosed with stage 4 Glioblastoma. I had surgery during which the surgeon was able to remove almost all of the tumor. The Doctors suggest radiation and chemotherapy to treat but they also say this is a cancer that does not go into remission. It is more a matter of WHEN not if it comes back.

I am looking into alternative treatments and am interested in what I've heard of Dr. Burzynski in Houston, Texas. Is anyone familiar with him?

I'm so sorry to hear this. I used to work in an imaging center that scanned a lot of his patients. It was 10 yrs ago but I can try to answer any questions I can.

 

[handinpocket]

Keeping you in my prayers.

 

[TheBigBadWolf]

I'm so sorry you are having to go through this. I will keep you in my prayers.

If I were in your shoes, I would go see Dr. Burzynski, especially if you are not given a good prognosis with conventional medicine. Most of the patients Dr. Burzynski gets are people who have NO other hope left, and go to him after every other treatment has failed. When my nephew was being treated at M.D. Anderson in Houston, my brother met two people who were taking their children to Dr. Burzynski (after they had been sent home from Anderson with no hope left). One child had Ewing's Sarcoma and the second child had a brain tumor (sorry it's been ten years and I can't remember what type brain tumor she had). I do remember Dr. Burzynski was able to shrink her tumor 93% but the child still lost her battle due to pneumonia. Her father called my brother from England and asked that he please tell parents about the wonderful job Dr. Burzynski had done with his daughter, even though she had lost her battle. The parents of both these children sing the praises of Dr. Burzynski.

There are a lot of former patients of Dr. Burzynski that you can contact through his website. www.burzynskipatientgroup.org I hope you are able to find a cure here and I wish you the best of luck.

 

[teskak]

Some further reading for you.

Dr Charles Teo trained in the USA in the minimally invasive surgery and is revolutionising it in Australia. I think the story also refers to some USA sites, but basically it is a technique to have several operations rather than just the first to maximise life expectancy.

http://www.abc.net.au/rn/healthreport/stories/2009/2755425.htm

 

[j's m]

My thoughts and prayers are with you.

 

[minnie56]

I am not familiar with that Dr but I can tell you that a friend of ours was diagnosed with the same type of tumour. He had imediate surgery to remove as much of the tumour as was possible and then underwent Radiation and Chemo for approx one year. His prognosis after the surgery was not good and they gave him 12-15 months.

He decided, even when the conventional treatment began, to try homeopathic as well. His Dr's tried to discourage him but he was determined to do all he could. So there has been some weird and wonderful stuff (mistletoe injections, weekly massive Vit C infusions etccc) and today, the tumour is still there, same size since post surgery but he is coming up to 5 years later! It might even be 6...hmm.. NOW his Dr's are asking "Tell us again what treatments you had"?!?!?!

GOOD LUCK! Will send prayers for you too!

 

[Kitty 34]

I will be praying for you.

 

[Dan Murphy]

Hi Amy.

I am not familiar with this diagnosis and have no medical alternative suggestions. You certainly are in my prayers going forward, Amy, my very best wishes for a remission. I believe in miracles, they do happen.

Also, please do maybe research this site, not sure if it has been posted yet. http://www.cancer.gov/clinicaltrials It is a wonderful source.

God bless, Amy. 's


Dan