I have been diagnosed with Glioblastoma.

[MinnieTink]

I will keep you in my prayers as well.

 

[crashbb]

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.

Are we to assume that this tumour that was "cured" is different from the one your DH is currently taking medication for?

So anyway, on this recent far-east trip, he had to do one shot early, on the same day he took the cabergoline (pituitary tumor drug), which was almost a day later than he is supposed to take it (it's a once a week thing, it builds on itself or something like that, he needs to take it same day each week). Then he missed two other shots b/c he didn't want to deal with taking it on the plane, and then we absolutely and totally forgot about the cabergoline on Thursday when he got home (NYE) and it was 3/4 through Friday when we remembered!

http://www.disboards.com/showpost.php?p=34948633&postcount=100

OP - I'm sorry to hear about your diagnosis. Looking into complementary therapy is definitely a good idea. I can, however, be difficult to sift through the garbage to find the ones that are actually helpful.

You are in my thoughts and wish you luck in your journey.

 

[donnajon]

My sister'a boss and DH both had glios. She said Duke and Texas were the two best places to seek treatment. They were really the most progressive. Good luck.

 

[Pembo]

Sending strength your way as you fight this battle. My friend's brother has been living with glioblastoma for 10 years. When dx they said "a few years" was his life expectancy. He receives all his treatments at the Cleveland Clinic.

 

[nkjzmom]

I am so appreciative of all of the advice, good thoughts, and prayers. Thank you all so much. So many people have said they can't believe that something like this would happen to me...but I think "Why NOT me?" I have strong faith, a strong support system, and I firmly believe that I am not losing time...I have been GIVEN time. Any of us could be gone at any instant...I have been blessed to have TIME to get things in order and to do those things that I need and want to do.

We are still waiting for news from Dr. Burzynski's clinic.

Thank you for the website on the clinical trials. That's where we got a jump start on our research. Our local Oncologist also has nurses who specifically do research on clinical trials and they have helped alot.

 

[stacy347]

I am so appreciative of all of the advice, good thoughts, and prayers. Thank you all so much. So many people have said they can't believe that something like this would happen to me...but I think "Why NOT me?" I have strong faith, a strong support system, and I firmly believe that I am not losing time...I have been GIVEN time. Any of us could be gone at any instant...I have been blessed to have TIME to get things in order and to do those things that I need and want to do.

We are still waiting for news from Dr. Burzynski's clinic.

Thank you for the website on the clinical trials. That's where we got a jump start on our research. Our local Oncologist also has nurses who specifically do research on clinical trials and they have helped alot.

I firmly believe that your faith and positive attitude will take you a long, long way. Best wishes on whatever treatment you decide ~ many prayers are being sent up for you.

 

[Lucky4me]

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

I agree. Either Sloan Kettering or MD Anderson in Texas.
They are both so far ahead of the pack treating GBM's.
DH was treated at Sloan Kettering for pcnsl, another type of brain cancer, in 2008.
He's doing well right now.

I also agree with you nkjz, that you have been given time. DH's sister died suddenly a week ago today. She was a healthy 54 year old with no underlying health issues we knew of. They found her on the couch, tv on, remote in hand. She just went to sleep and didn't wake up.
She was one of my dearest, closest friends. I wish I could have said goodbye. Stay strong and you will do well.

I have some Brain tumor message boards and email lists if you'd like them. They are a fantastic support and wealth of information
http://www.braintrust.org/braintmrlist.htm

 

[jama]

Just thinking about you and hope your doing well.

 

[Va-bear]

Yes, I was thinking about you too. Wondering if you wnet to your Duke appt. and, if so, how it went? Or, if maybe you've picked somewhere else to be seen? I hope that whatever your course of treatment that it is going well. Know that there are many of us out here cheering you on.

 

[nkjzmom]

Thank you both for following up with me!

DH and spent all week traveling last week. We spent 2 disappointing days at Duke learning that if they had just read my report or opened one scan they could have told me I didn't qualify for any of their trials. Everything they could offer me there I can have done here locally. We feel like we wasted a trip there. Their office couldn't even run the CD with the scans on it. My husband had to do it on his laptop!

We flew immediately from Duke to Houston to visit Dr. Burzynski's clinic and what a difference. We mentioned that Duke had trouble opening the CD and the nurse told us, "We have our own IT dept. for just such problems." We spent quite a bit of time with Dr. Burzynski himself also. We just received the blood work results and will begin treatment with his office after radiation is done in 6 weeks.

I am off in a few minutes to begin being fitted for radiation treatments. I am praying that I don't suffer the side effects the doctors have warned about. Please, if you don't mind, join me!! I will update when I can.

Thanks again for the prayers and advice.

 

[Dan Murphy]

....I am praying that I don't suffer the side effects the doctors have warned about. Please, if you don't mind, join me....

Having joined you in the past, Amy, I continue to do so. Continued best wishes for healing and remission.

 

[minniebeth]

I continue to be with you in spirit on your journey...you are in my thoughts and prayers~

 

[minnie56]

Keeping you in my prayers and thoughts as you make this journey. Keep your faith!!! It will see you through...

 

[rie'smom]

Amy, you are in my prayers.

 

[luvmarypoppins]

Amy, sending continued prayers your way. Remember He is Faithful and His mercies are new every morning!! I am glad you have a treatment plan you are happy with. Fight tough!! I am so happy you have a great faith (that is what is helping me through all of this too) and a great support system. We dont really have an extended family so our church family is our greatest support to us too. Your positive attitude is great too.I told my surgeon at the beginning that I am a fighter and I am going to fight. So keep up that fighting spirit dear Amy.

 

[zalansky]

Prayers from Florida too, Amy. We'll be cheering you on through the treatment!

 

[3prettyprincesses]

Oh, I was just thinking of you the other day and wondering how you were doing but didn't see an update!! So sorry to hear Duke wasn't able to offer you anything else. But great news about the Burzynski Institute. Keep up your positive attitude and rely on your strong faith. That is going to be 1/2 the battle. I am thinking of and praying for you. Please keep us posted! Good luck with the radiation fitting too!

ETA: There is another blog I read about a wonderful, faith filled woman who is battling an anaplastic astrocytoma. She is uplifting and encouraging. Her struggle is very honest and transparent. It's been 3 years since her diagnosis and she is doing wonderfully, no recurrence of her tumor. I realize it's not the same type of tumor you have, but if you'd like, I can pm you the link.

 

[nana2tots]

Dearest Amy
Was just reading your post, and i am so sorry that you are having to go through this. It is a long long journey, i should know, but just be strong and put your faith in God. This was a hard journey on not only for the person suffering, but the entire family, and it takes a lot of Love and Support from everyone.
I will be Praying that Chemo and Radiation will work for you, but please be aware that you will be having a lot of bad days after these treatments. I hope there are still some Clinical trials out there that will accept you. Sometimes these trials make it worse on the patient, but you have to try whatever is out there.
If you ever need to talk , i will, as you know this is what my Daughter had. So , please feel free to email me.
Prayers out there for you.
Nana

 

[nkjzmom]

I am normally a very private person and I know this is "just" a Disney board but I am very touched by all of your posts. You all are such a strength to me. Thank you!

Well, I can cross off another experience of life from my list....that of being fitted with an odd plastic mask. That was a unique experience for sure! The plastic was warm and soft when they pulled it over my face. The nurses then fanned it until it was mostly dry. Then I had a CT scan which will be combined with a few of my MRIs so that they will have an exact picture of where to place the radiation.

I hope to begin treatments the first week of March.

 

[4nana]

Amy sweetie, know that you're in the hearts and prayers of your many Dis friends here . I am so sorry you and your family are facing one of life's greatest tests, sadly I'm aware of the toll the beast takes on families. Family, faith, courage, a postive outlook, will all play a big part and you're obviously blessed with these. Keep fighting the beast with every ounce of fiber in your body, heart and soul!

Best wishes in your radiation treaments dear, also with Dr. Burzynski's therapies, and please do keep us updated. Godspeed, I will pray for your guardian angel to be right by your side at all times.