I have been diagnosed with Glioblastoma.

[3prettyprincesses]

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.

Aw sweetie, you're welcome! Yes, this is just a Disney board but what you're going through is such an ordeal that it puts things in perspective. I can understand your being a private person, I am myself. But there are 6 pages here of people that are praying, hoping and following along with you! Keep up your positive spirit! I've already subscribed to this thread and will look forward to your updates. I'm so very sorry that you have to deal with something so awful but you really seem to have the right perspective and I'm sure that your family and friends are there for you too! I'll be thinking of you as begin your treatments that 1st week of March! Blessings to you!!

 

[ugadog99]

I have not posted but have read this thread constantly. I have some experience with glioblastoma. I'm sending you my prayers and positive thoughts.

 

[Hillbeans]

Just wanted to send along some good thoughts and prayers your way.

 

[lucyanna girl]

Amy, I too will be thinking of you and praying for you and for your family. I believe your attitude will be a tremendous weapon in this battle. Faith and love are two of the strongest emotions.

Please keep us updated.



Penny

 

[TheBigBadWolf]

Amy, you are in my thoughts and prayers. Your faith and positive outlook will take you far in your battle. God bless you.

 

[Jewel1310]

prayers and positive thoughts being sent your way Amy for you and your support network. What an amazing attitude!

 

[sparklynails23]

Just saw this thread. Prayers and positive thoughts for you and your family. Take some time to do some nice things for yourself.

 

[lilmissbehaved]

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?

No advice.. some hope maybe though? My husband who was 28 at the time began having seizures and was diagnosed w/ a stage 3 glioma that was growing FAST.. he had surgury right away and they said they did get most of the tumor.. he's now 35.. He wasn't expected to make it a year.... still has some seizures because of scar tissue.. but otherwise doing well! will keep you in our thoughts!

 

[ead79]

Amy, I just now saw your post and I will keep you in my prayers. Specifically I will pray for no side effects from the radiation as you mentioned that is a big concern. I will also pray for the Lord's comfort, strength, and peace for you during this time of trial.

 

[nkjzmom]

Thanks again all my friends here!

Today is the day. The first of many days of radiation treatments. Yesterday was my final fitting with the mask and the actual machine that will be doing the radiation.

I learned a few things...I will be treated on the same machine with the same technicians all six weeks. That was reassuring. It will be nice to get to know them. They will go in at 7 different angles. Plus, I knew that I would lose my hair in those spots but I assumed that, as with chemotherapy, it would grow back in. It won't!!! I sound very vain but I'm not ready to have 7 bald patches in my hair!!! I need to find some cute new hairdo's!!

 

[Laura]

I hope the radiation kicks some butt in there.

And if you lose your hair, just buy some wigs. A new hairdo every day!

 

[nkjzmom]

Alrighty...one treatment down, only 29 more to go!!! I had a genius thought this afternoon...I'm thinking about making a Mickey-head countdown!! What a way to pass the time, huh? I wish there was a Disney trip at the end though!

My family is/was planning a WDW trip in January 2011. DH even ordered the newest Passporter for me to read in my down-time in waiting rooms. We're not sure what to do now. We want to see how the treatments affect me and how I'll be feeling in a year's time. It will be our first time back in five years.

 

[Dan Murphy]

Make plans for that trip, Amy, you guys are going. Continued good wishes with prayers for a good, successful treatment.

 

[3prettyprincesses]

Alrighty...one treatment down, only 29 more to go!!! I had a genius thought this afternoon...I'm thinking about making a Mickey-head countdown!! What a way to pass the time, huh? I wish there was a Disney trip at the end though!

My family is/was planning a WDW trip in January 2011. DH even ordered the newest Passporter for me to read in my down-time in waiting rooms. We're not sure what to do now. We want to see how the treatments affect me and how I'll be feeling in a year's time. It will be our first time back in five years.

I was just thinking of you today! So happy to hear that 1 treatment is down! Totally make a Mickey head countdown! Do it! Is there a way for you to bump your up trip then? Seems like a perfect reason to celebrate and might be nice to have something exciting to look forward. I'm sure your kids would agree! The Passporter is such a good read while planning. Another favorite of mine is the Complete Walt Disney World. It's awesome and lots of pics too. I'll put a link to it at Amazon below. I'm still thinking and praying for you. Thank you for updating too. Keep up the good work!

http://www.amazon.com/Complete-Walt...=sr_1_1?ie=UTF8&s=books&qid=1267667303&sr=8-1

Forgot to add something. My dear Aunt had breast cancer and she lost all of her hair. Let me tell ya, she LOVED wearing wigs! In her words, her hair was always perfectly styled! We all took turns wearing her wigs and taking pics, it was hilarious! Don't worry about your hair honey! I know that's easy for me to say, right?

 

[jamimb]

Just wanted to let you know I was praying for you!

 

[Lucky4me]

My prayers have been with you too, Amy. I'm glad you had better luck at MD Anderson. It was a toss up between Dr. Burzynski in Houston and Lisa De'Angelis at Sloan Kettering for dh's treatment. We chose Sloan only because it was a few thousand miles closer to our home. If he relapses, it's off to Houston we go.
From all my research, MD Anderson is #1 in the country, Sloan, #2. You are in excellent hands.

I believe you have the two most important things covered. First, the best hospital, second, a great support system in place. Those two things are what made it a lot easier for dh.

 

[luvmarypoppins]

Amy - Hooray for making it through your lst treatment. I am sharing my favorite verse with you as an encouragement, Phillipians 4:13.

Love your Mickey countdown idea.

Definetely plan that trip. I had my lst cancer surgery last January and after the 7 operations, coma, radiation etc. I was in Disney World with my dh in December. I had to be in the wheelchair most of the time, but we WERE there! Of coruse we cried alot of the time!!

Blessings to you always.

 

[Va-bear]

Congrats on one down - hope the other 29 pass quickly and are not too too bad....I know it's no fun, but it's for a good cause!

I that your DH got you a Passporter - great idea! I'm with the poster who said I'd plan a trip for right after your chemo/radiation is done - or after whatever phase of treatment has a 'break' in it. What a great way to celebrate and a very well-earned treat.

Take care good care - we are all thinking about you.

 

[luvmarypoppins]

Amy, sending you continued thoughts and prayers. Keep fighting tough!!

 

[nkjzmom]

Thank you all for the prayers and thoughts. I am still overwhelmed when I log on and read your responses.

Today was treatment #11. So far I'm doing great. None of the negative side effects yet. I've also begun my oral chemo regimen. I'm taking Tykerb.

As of right now the only bad thing I'm experiencing is a terrible outbreak on my face and in some areas on my scalp. I have sensitive skin already but I've never broken out like this. It may or may not be related to the Tykerb. I meet with my local Oncologist tomorrow so we can discuss it. It's just that my whole face hurts from it. I feel like I did as a teenager...yuck.