I have been diagnosed with Glioblastoma.

[nkjzmom]

Thanks everybody!!! We got the phone call last night...I GOT INTO THE TRIAL!!!!! I feel like a kid who just into their favorite college!

We will receive detailed instructions next Tuesday but the short story is that we will be in Houston for a couple of weeks for training and to get the correct dosage. This could start as soon as Jan. 2.

We have so much to do to prepare. Please continue to keep us in your prayers as we plan. My DH is working on a post to the blog since he's the more detail-oriented one.

I appreciate you all more than I can say. I wish you all the peace and joy of this Christmas season.

 

[BeachGirlFLA]

Prayers are being said in Denver

 

[marcemc]

Thanks everybody!!! We got the phone call last night...I GOT INTO THE TRIAL!!!!! I feel like a kid who just into their favorite college!

We will receive detailed instructions next Tuesday but the short story is that we will be in Houston for a couple of weeks for training and to get the correct dosage. This could start as soon as Jan. 2.

We have so much to do to prepare. Please continue to keep us in your prayers as we plan. My DH is working on a post to the blog since he's the more detail-oriented one.

I appreciate you all more than I can say. I wish you all the peace and joy of this Christmas season.

That is great news Keeping you & your family in my prayers.

God bless you, Merry Christmas!

 

[focusondisney]

I'm sorry you continue to have to deal with this. I will keep you in my thoughts & prayers. Good luck with the new treatments. May you & your family stay strong & enjoy a happy holiday.

 

[PlutosFriend]

Prayers and hugs being sent to you Amy!! Merry Christmas!!

 

[E-P-C-O-T]

Just wanted to give you a and wish you a Merry Christmas...

 

[simplyyy]

Radiation and chemotherapy DO have side-effects. My mom did chemotherapy to remove cancer and it resulted of a hearing loss and part of the cancer stayed, then she just went with natural medicals like Junka, spirulina, then the cancer disappeared.

 

[Lucky4me]

Radiation and chemotherapy DO have side-effects. My mom did chemotherapy to remove cancer and it resulted of a hearing loss and part of the cancer stayed, then she just went with natural medicals like Junka, spirulina, then the cancer disappeared.

Good for your mom. Can't you read? The OP has been having successful treatment with few long term side effects for two years. I'm sure your Mom did not have the same type of cancer OP has. Glioblastoma multiforme cannot be cured with a bit of Spirulina. I'd say more, but this is the dis and I'll behave.


Amy, congrats on the trial! That is fantastic news. You are in great hands. This trial you are going to do now will not only help you, but many people down the road.
DH was on a phase 2 trial at Sloan Kettering three years ago that is now standard care for his type of brain cancer (pcnsl) in many countries around the world!
It's still not standard care here in the U.S. because of the stringent rules we have-his cancer was so rare there will probably never be enough people in the trial to make it standard care, but more and more doctors around the country are learning about it and using it as first line, rather than last resort. dh just had his (4x a year) mri the other day and is still in complete remission.

Your spirit and love of life show in every post. Have a very Merry Christmas!

 

[CJBaby]

Continued prayers! It's great that you got into the trial!

Merry Christmas!

 

[nkjzmom]

Lucky4me....Thanks!!! I'm so glad for you and your husband!!!! I pray he continues to stays healthy.

Each patient has to research and decide for themselves how to go about treatment. I am thankful to each one of you for your reponses and care and concern. We have learned so much over the last 2 years. I have met so many wonderful people, i.e. patients, nurses, and staff members. Our family has experienced the good and bad together. This week we ALL (7 of us!) went caroling at my Dr.'s office. We just wanted to do something nice at this time of year. One nurse talked to me today to let me know how many comments and even phone calls they'd had since then about how they enjoyed our visit. I'm thankful for the opportunities like that. I'll take all the good I can and pass it right along. That's what we're here for anyway.

Merry Christmas to you all. Love, Amy

 

[RNMOM]

Amy, that was a very creative way to share the holiday spirit with your doctor and staff. I understand what you mean about having relationships with patients. I have had a few over the years and some I keep in my thoughts as I have no idea what happened to them..the other I do know. It is so important to we healthcare workers to know we make a difference in someones life. You did good!

I lurk on your topic and try to keep up to date. I hope you new year is filled with positive events and love.

Cordia

 

[Dan Murphy]

Great news for sure, Amy, that you arei in the trial. Wonderful Christmas present!!!

And what a neat pay to pay it forward, pay it back. I am sure the staff and folks at the office were smiles, ear to ear, with you all do your caroling. How neat.

A very Blessed Christmas wish, Amy, and looking to a healthier New Year ahead. God bless.

 

[can84]

Although I was sad to read that some new growth occurred, I'm very glad to hear you made it into the trial. I hope that you continue to get better--and with your positive attitude, it's impossible to think otherwise--and that you have a wonderful Chritsmas!

 

[minnie56]

How wonderful that you made the trial!!!!!
I pray that it has HUGE success!

There is such joy in your heart, I pray for many blessings for you.

 

[Nancy F]

Thanks everybody!!! We got the phone call last night...I GOT INTO THE TRIAL!!!!! I feel like a kid who just into their favorite college!

We will receive detailed instructions next Tuesday but the short story is that we will be in Houston for a couple of weeks for training and to get the correct dosage. This could start as soon as Jan. 2.

We have so much to do to prepare. Please continue to keep us in your prayers as we plan. My DH is working on a post to the blog since he's the more detail-oriented one.

I appreciate you all more than I can say. I wish you all the peace and joy of this Christmas season.

Great News!!! God Bless you and your family in 2012.
Nancy

 

[IDoDis]

I just read through this thread for the first time. Don't know how I missed it before. Amy, you are an amazingly strong woman. I'm thrilled that you got accepted into the trial. Keep fighting! I will keep you in my thoughts and prayers and I look forward to reading your updates.

 

[nkjzmom]

It's been so many months since I updated, my apologies. But, really, in this case, no news is good news.

Some things changed during the process of getting into the trial and I wasn't able to do it. Because Dr. Burzynski has his own practice, he doesn't have the funding of large corporations and the cost rests upon the patient. We just couldn't afford it and our insurance will not cover any trials. So, I'm back to biweekly Avastin and my daily oral medications. And the news is still very good!!!

The last MRI and PET scans have shown no growth, no areas of concern. We are thrilled!!!

 

[minnie56]

Well that's just as great news!
Prayers that you keep on going as well as you have been..keeping you in our thoughts.

KEEP WELL!!!

 

[luvmarypoppins]

Amy, what wonderful news on the test results! You continue to be in my prayers. Sending you Jeremiah 29:11 and Phil. 4:13.

Blessings to you always.

 

[ccgirl]

It's been so many months since I updated, my apologies. But, really, in this case, no news is good news.

Some things changed during the process of getting into the trial and I wasn't able to do it. Because Dr. Burzynski has his own practice, he doesn't have the funding of large corporations and the cost rests upon the patient. We just couldn't afford it and our insurance will not cover any trials. So, I'm back to biweekly Avastin and my daily oral medications. And the news is still very good!!!

The last MRI and PET scans have shown no growth, no areas of concern. We are thrilled!!!

Thank you so much for updating! I am so happy and I pray that you stay healthy!!!