I have been diagnosed with Glioblastoma.

[disney1990]

Checking in!!! All is still going well. Instead of an MRI my Dr. sent me to have a PET/CT scan. The tumor's uptake was only at 4.8 which is very good...almost within the normal range which is 3-4 percent.

What a relief!!

The school year is coming to an end. I am so happy to have a more relaxed schedule with the family....we like to sleep late and stay up late to star-gaze (and Space Shuttle/Space Station gaze). Time for cookouts, water parks, and fireworks! So many things to look forward to !!!!

Thanks again for all of the thoughts and prayers!

That's fantastic!

 

[CaliforniaDreamin]

I'm glad you are doing well!

 

[sparklynails23]

Hey Amy, have a wonderful Summer!

 

[4nana]

Thx for checking in and sharing your positive news ! Know that many of your Dis friends still hold you close in thought and prayer. Hope you enjoy a relaxing summer of family bonding and lots of fun. God Bless and do keep up the good work.

CaliforniaDreamin, so sorry to hear about your friend. So sad for all involved and will keep her in my prayers also. Hope you can both hold onto that WDW trip in Dec.

 

[can84]

My sister was just diagnosed with a level 4 gioblastoma a few weeks ago and is starting chemo and radiation next Monday. I'm glad to hear that you are doing well--we are hoping for the same outcome for her.

Her birthday is towards the end of the month, about 3 weeks into treatment and I'm trying to come up with gift ideas. Was there anything that helped you get through treatments that you would recommend?

Thank you, and once again I'm glad to read about the success stories!

 

[nkjzmom]

Christi, I'm so sorry to hear of your sister's diagnosis. Can I contact you through email for more details? I'd be glad to help in any way I can.


As for an update, I'm still doing really well. My next MRI will be within the next few weeks. I'll be sure to share that report. I've developed a twitch in my right pointer finger that is really annoying me. At my visit today they didn't suspect anything but I'm anxious to see the scan. I feel completely fine otherwise. I finally met another GBM patient at my doctor's office. She is a sweetheart of a lady, 76 years old, and I've loved sitting and talking with her.

We just returned from a week in Connecticut with DH's family. We had a great time. It's so nice sometimes to have absolutely nothing to DO. We swam in the lake, ate ice cream at a hot dog place DH worked at as a teenager, played at the park.... We also headed over to Hoboken and made a visit to Carlo's Bake Shop....yummy stuff. And then we wandered around NYC for a few hours. The best part was the family dinner. DH has a fabulous Italian family and I love being with them. It was great to walk around the room and hug and kiss and visit with them all. I fell asleep every night literally counting my blessings.

My DIS friends, I appreciate the thoughts and prayers from each one of you. There is nothing like the love of friends and family. Enjoy every moment.

 

[can84]

I am so glad that you are doing well. I've PMd my email

Christi, I'm so sorry to hear of your sister's diagnosis. Can I contact you through email for more details? I'd be glad to help in any way I can.


As for an update, I'm still doing really well. My next MRI will be within the next few weeks. I'll be sure to share that report. I've developed a twitch in my right pointer finger that is really annoying me. At my visit today they didn't suspect anything but I'm anxious to see the scan. I feel completely fine otherwise. I finally met another GBM patient at my doctor's office. She is a sweetheart of a lady, 76 years old, and I've loved sitting and talking with her.

We just returned from a week in Connecticut with DH's family. We had a great time. It's so nice sometimes to have absolutely nothing to DO. We swam in the lake, ate ice cream at a hot dog place DH worked at as a teenager, played at the park.... We also headed over to Hoboken and made a visit to Carlo's Bake Shop....yummy stuff. And then we wandered around NYC for a few hours. The best part was the family dinner. DH has a fabulous Italian family and I love being with them. It was great to walk around the room and hug and kiss and visit with them all. I fell asleep every night literally counting my blessings.

My DIS friends, I appreciate the thoughts and prayers from each one of you. There is nothing like the love of friends and family. Enjoy every moment.

 

[cm8]

As for an update, I'm still doing really well.


My DIS friends, I appreciate the thoughts and prayers from each one of you. There is nothing like the love of friends and family. Enjoy every moment.

, I'm so glad that things are going well Thanks for the update!

 

[luvmarypoppins]

Amy, wonderful news and I am so glad that you had a wonderful trip. I live in NY and never go to the city. You have probably seen more than me.

Carlos sounds yummy. I always watch it on tv.

Wishing you all the best! Blessings to you always.

 

[nkjzmom]

Good morning my DIS friends. Wow, how time flies.

We've had nothing much to report until my MRI on the 2nd of December. Unfortunately, the tumor has grown a bit. The good news is that it grew out into the area where the resected part was located and NOT into healthy brain tissue. I am feeling no effects from the growth.

What this does mean is that we need a new plan of attack. As some of you may remember I have chosen to forego the "standard of care" and am a patient of Dr. Burzynski in Houston, TX. That leads us to more choices of treatment. My local oncologist has offered us his opinion. With the new growth DESPITE being on treatments I may now be qualified to participate in the FDA trial on Dr. B's Antineoplaston treatments. His office has submitted my information and we hope and pray that a decision will be made soon.

As we have reached the 2 year mark exactly this week I am reminded of so many blessings that we have enjoyed. Especially this Christmas week....as I returned home on Christmas Eve from brain surgery on the 22nd. What a miracle!

Here, again, is my blog for any who are interested. Thank you so much for your support through thoughts and prayers. They lift us up!!!

Merry Christmas!!!!

 

[Nancy F]

Sending Prayers {{{HUGS}}} and
Nancy

 

[Deb in IA]

Good morning my DIS friends. Wow, how time flies.

We've had nothing much to report until my MRI on the 2nd of December. Unfortunately, the tumor has grown a bit. The good news is that it grew out into the area where the resected part was located and NOT into healthy brain tissue. I am feeling no effects from the growth.

What this does mean is that we need a new plan of attack. As some of you may remember I have chosen to forego the "standard of care" and am a patient of Dr. Burzynski in Houston, TX. That leads us to more choices of treatment. My local oncologist has offered us his opinion. With the new growth DESPITE being on treatments I may now be qualified to participate in the FDA trial on Dr. B's Antineoplaston treatments. His office has submitted my information and we hope and pray that a decision will be made soon.

As we have reached the 2 year mark exactly this week I am reminded of so many blessings that we have enjoyed. Especially this Christmas week....as I returned home on Christmas Eve from brain surgery on the 22nd. What a miracle!

Here, again, is my blog for any who are interested. Thank you so much for your support through thoughts and prayers. They lift us up!!!

Merry Christmas!!!!

Great to hear from you, Amy, and best wishes for your continued health and good spirits!

Have a wonderful Christmas!

 

[vicki_c]

What this does mean is that we need a new plan of attack. As some of you may remember I have chosen to forego the "standard of care" and am a patient of Dr. Burzynski in Houston, TX. That leads us to more choices of treatment. My local oncologist has offered us his opinion. With the new growth DESPITE being on treatments I may now be qualified to participate in the FDA trial on Dr. B's Antineoplaston treatments. His office has submitted my information and we hope and pray that a decision will be made soon.

I saw the documentary on Dr. B and his anti-neoplaston work and it was really impressive. I hope you get into his trial and have some of the same amazing results as some of his other patients.

 

[minniecarousel]

Love your attitude!

Prayers for improvement and that you get into the trial.

 

[DMickey28]

HI - I just read through your whole post. Your strength is amazing. I am keeping you in my prayers going forward.

Can you post a link to your blog or send me a PM with it? I am interesting in reading more.

 

[nkjzmom]

Thank you all!

I guess it would've helped to include the link! It's not a fancy blog, or even that cute or funny. My husband started it in order to keep far-away family and friends up to date with my progress. We usually only update it with important info with regards to my health. But it does share our hope and faith and our belief in answered prayers.

www.hullsweb.blogspot.com

 

[Dan Murphy]

Thanks for the update, Amy. Best wishes with the new protocols, you remain in my prayers. Have a wonderful Christmas and a super New Year, with health all around.

 

[minnie56]

Think of you so often Amy and pray that this is just a blip on the radar screen. Sending prayers and positive thoughts that you will be accepted for the new treatment and it will have only the best possible outcome for you!

Many blessings to you and yours this season!!

 

[lucyanna girl]

Merry Christmas Amy and it is wonderful to hear you in such good spirits! I hope the Christmas is the best ever for you and your family.

Penny

 

[luvmarypoppins]

Amy, as always sending you lots of and prayers.

Remember His Mercies are New every morning.

Hope you are able to get into the new trial.

Get those fightin boots on girrl!! Gotta kick this cancer to the curb!!

Wishing you a blessed Christmas and New Year.