I have been diagnosed with Glioblastoma.

[CJBaby]

I hope everything is ok. Still praying!

 

[sissybells]

Thoughts and Prayers are with you and your family.

 

[4nana]

Hope you're doing ok Amy . Wanted to let you know I think of you often and am keeping you in my prayers. Godspeed

 

[nkjzmom]

I apologize for not updating in such a long time.

I'll start with my last MRI. We had shrinkage and some necrosis (cell death)!!!! The tumor went from 35mm to 32mm!!! From what I understand this is rarely heard of in this type of tumor. My local oncologist's face was priceless. He had always stated that our goal was just to keep it from growing.

Unfortunately I had another difficulty come up. I had a cyst on my tailbone that had to be removed and treated surgically. It was extremely painful and is still healing. It has slowed me down. I also had to stop all of my treatments for surgery and recovery. I just started back on Herceptin and Avastin 2 weeks ago. We are nervous about what might have happened while I was off treatment. All of this pain has also thrown off my sleeping and raised my stress level. I keep wishing that I ONLY had the tumor to think about if you can believe that!

Big Bad Wolf...do you have experience with Dr. Burzynski? I'd love to know more.

jeminni...How is your Mother in Law? Did the tumor respond at all to the chemo?

Thank you all so much for your uplifting comments, your thoughts, and prayers.

 

[minnie56]

Oh I am so sorry that you had yet another hurdle to get over. They say for 'every door God closes-he opens a window' I say yes and sometimes 'he forgets and leaves the screen in'!! Just a bump in the road...but painful and frustrating.

Prayers that things stayed in limbo while you were off treatment and the tumour stayed the size it was and you go only forward from here.

Hugs to you...and always many prayers. I did tell you about my friend didn't I diagnosed with a Glioblastoma 5 years back now?

He's still here! As I pray the same for you

 

[nkjzmom]

I just went back and read through all of the posts.

Wolf....I reread your story.

Minnie, I also reread about your friend. Do you think they would be willing to email me? I'd like to talk to someone who has positive news with this tumor.

 

[Dan Murphy]

Continued good wishes, Amy, along with continued prayers. Wishing you better days ahead. 's

 

[BellvilleDad]

I wish you the best, Amy, and will pray for you.

Just FYI, my brother is walking around with one of my kidney's, too.

 

[minnie56]

I just went back and read through all of the posts.

Wolf....I reread your story.

Minnie, I also reread about your friend. Do you think they would be willing to email me? I'd like to talk to someone who has positive news with this tumor.

I am sure he would..PM me your email?

He just had another MRI ( he has them every 4 months I believe) and his results are the same. No change. Best news every time!!!

 

[holycow]

hugs to you! I can't help you with the Dr. but I will send out prayers and good wishes in your behalf.

I hope you find the information you are looking for!

 

[arminnie]

My best friend from college and ex-roommate was diagnosed with this a years ago. She has been going to Duke. She did not have surgery as an option, but has had major radiation and ongoing chemo.

I was able to see her in June at her son't wedding. She is weak, but still has the same wicked sense of humor. I do think the entire crowd (about 100) lost it when she danced with her son.

I was maid of honor at her wedding. Hearing her son makes those vows for "better or worse, sickness and health" and seeing her and her husband live through these vows was very moving.

Wonderful news received yesterday. There has been major shrinkage in the tumor. It will never be gone, but for now is being managed.

I now of two women who have had stage IV ovarian cancer (another bad one) for over 15 years. No it is not gone, but they still manage to have meaningful and enjoyable lives.

 

[luvmarypoppins]

Amy, so happy to hear about the tumor shrinkage! That is good news.

Sorry to hear about your bump in the journey. I pray you will heal quickly from that.

Hang in there and keep fighting strong! I always say cancer is tough and we have to fight tougher!! Sending you 1 Peter 5:7 and Jeremiah 33:3.

My thoughts and prayers are with you. Blessings always.

 

[alliecats]

Hey Amy! I am glad to hear about some tumor death (Take that, tumor! Lie down and stay down!!) I will continue to keep you in my prayers!!

 

[ChrizJen]

Amy, I'm so sorry you're dealing with this. I think your positive attitude and willingness to face it head on are inspiring! I will keep you in my prayers.

I've read your updates, but I haven't read a whole lot of the responses. I wanted to mention that we have a cancer center here in St. Louis, Sitemen Cancer Center. They're affiliated with Barnes-Jewish Hospital/Washington University School of Medicine. They're a top-ranked medical facility, and have won numerous awards for their diagnosis and treatment of cancer.
Here's a link the their website. There's a search for clinical trials that are starting or are under way. It might be worth looking into.
http://www.siteman.wustl.edu/FindProtocol.aspx

Good luck to you, and keep your head up. I know that a positive attitude and a willingness to fight are two things that can make a huge difference. (AND the power of prayer, which you've got as well)

 

[donnajon]

http://www.virtualtrials.com/survivematt.cfm

I hope this link works. This is a story of a guy who survived two decades with a glio. My DS's husband died several years ago from this but his was caught late. Glad to hear it was shrinking!

 

[CJBaby]

Thank you for updating! I am keeping you in my prayers.

 

[nkjzmom]

Thank you all again! I am cheered everytime I read through this thread. I am going in for an MRI tomorrow morning. I assume we'll have the results within a day or two at most. I hope it's quick...I don't think I could wait until next week. We will be heading to visit Dr. Burzynski in November.

Here's hoping and praying there's been no new growth!!! I'll update as soon as I have news.

 

[minnie56]

Sending prayers that there's no growth! Stay strong...we're all praying for you!

Hugs

 

[jeminni]

Good luck Amy.

My MIL is going for hers on Monday. The one she had in September showed too much scar tissue to see if there was any growth. This one should be clearer. We are praying it will be good.

 

[disney11fan]

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 will pray for you often.. Power of prayer is great. God bless and keep you and your family.