Recurrence

The word we don't want to hear. We heard it, this afternoon. The MRI yesterday showed some growth. I don't know much more right now. We'll meet with the NO on Monday morning. Andy was having a headache and so we called for a report and yes... Recurrence.

I asked the nurse if we could have the results before Monday because of the headache. She said she couldn't tell us but that she'd call the NO and see what he said to do. I guess based on the headache and out of compassion he told her to tell me. And I told Andy out of respect for his life. Not the time for holding this to myself, believe me. The truth is what we all deserve, until the day comes when we can't understand it. But this sweet boy totally understands. It's heartbreaking.

They basically said, "We're so sorry. Take some decadron for the headache and we'll talk about options on Monday."  I mean, a nice compassionate nurse, but don't you think we had a little breakdown after that call? : ( Sure did. He was in total freakout. Klonopin to the rescue.

I told Andy that he'll probably hear about options like gamma or CPT11 or another craniotomy. Not to give up. This isn't the end. But it sure is a ****ing lousy turn of events. And on we go.

Love, Sarah

mother of Andy 27 dx gbm/pnet 1/09

Hello Sarah,

No words can express what my heart is feeling for you and Andy. My only thought is ' DON'T GIVE UP!.

You have given support to so many people on this website! Let us give back to you some support now.

I will keep you, Andy and your family in my prayers!

God Bless!

Sheryl

Son 34  dx Mar 08 AA

Dear Sarah,

You said it - This is not the end!  You and Andy are just beginning to fight this.  I know you must be in shock, but once you have more information on Monday, you can both focus on a plan and move forward.  You have been such a pillar for many on this site and now you need propped up too.  Getting the plan in motion will do a world of good for both of you I believe. 

We have had nothing but lousy news lately, but today my husband started radiation again (spine) and that felt good mentally.  Somehow you just keep going.  I know you'll both get through this.

Thinking of you, K

I was so sorry to read your post today.  Praying for you this weekend . . . the waiting is the hardest!

Cris

I'm really really sorry to hear the news.  Nothing ever prepares you for those words even if you might suspect it.  It's like being kicked in the stomach. 

I wish for you a good plan that will provide you with the hope that you need to hold onto.

My prayers are with you and Andy!

Jennifer

Sarah,

OMG, I hate hearing this news.  Please don't despair.  I know what it felt like when Rob's MRI showed more going on in July,   It knocks the wind right out of your sails. There are other things to try, one after the other.  They may suggest the radiation boost if its a new area that received no radiation.  That seemed to shrink the one new spot Rob had.  Is Avastin out of the questons?  Have you checked the vituraltrials.com site recently I now it's updated now.  Grasping for straws for anything to offer comfort and I can only cry.  My love and prayers to you and Andy.  Will be waiting to hear after monday.

Donna, Rob's wife.

I think, knowing our NO, it will be CPT-11 and Avastin. But very sadly it means that Andy probably can't move back to Asheville for the winter and have even a short stretch of 'normal'.

Thanks for your goodness. Be well.

Love, Sarah

So sorry to hear this news about Andy. We will surely pray for you and your family. This is a tough time but stay strong and believe in the power of prayer. It has done more for my family than any medicine has ever done.  be sure to keep us posted an a y updates.

I am a nurse and so I have lived on both sides of the fence. As a nurse I try to comfort and heal. I am also the typre that doesn't want to wait, I want to get things in motion and quickly. I have had to learn to be patient with others who aren't as anxious to get things done and some times it seems like it takes to long to get the ball rolling. Or at least longer than I would like. As  I have had to switch to the family member mode, I am really convinced that some medical people take way to long to take action. I have promised my self to never "waste" time for my patients and I get frustrated when other healthcare professionals do exactly that.... It took them over a month from the time my brother was diagnosed with "a tumor" in the brain before they removed it and started treatment. the whole time people told him that chances were that it wasn't cancer. then he has surgery and they come back and say this is very fast growing cancerous tumor..... gee, why did we "waste" a month to get it out.... kicker of it all, at the time he had no insurance....

sorry to ramble on about my issues when you are the one in need. Stay on their butts to get the ball rolling...

Praying for you guys!!!

On 10/2/2009 heart and soul wrote:

I think, knowing our NO, it will be CPT-11 and Avastin. But very sadly it means that Andy probably can't move back to Asheville for the winter and have even a short stretch of 'normal'.

Thanks for your goodness. Be well.

Love, Sarah

 

Sarah,

I'm sorry to hear about the reoccurence.  My heart goes out to you. I'm not sure if you read about this treatment.  NovoCure, Ltd., a privately held medical device company focused on developing the Novo-TTF device, a non-invasive portable medical device for the treatment of cancer. 

The Novo-TTF device is a unique cancer treatment that uses specially tuned, low intensity electrical fields (Tumor Treating Fields or TTFields) to disrupt cell division. Rapidly dividing cancerous cells are affected by the TTFields , causing them to either break apart or not divide properly, while healthy, non-dividing cells are not affected, yielding a targeted treatment with minimal side effects. The fields are applied to the tumor region using non-invasive, insulated electrodes placed on a patient's skin. The electrodes, which look like bandages, are attached by wires to a battery operated, portable device that generates the fields.

INITIATION OF CLINICAL TRIAL FOR NEWLY DIAGNOSED GBM

The Novo-TTF device has been tested in more than 175 patients with various types of cancers including recurrent and newly-diagnosed glioblastoma multiforme (GBM), breast cancer and lung cancer.

NovoCure recently completed enrollment of a 236-patient, multi-center, randomized Pivotal clinical trial studying the safety and efficacy of the Novo-TTF device treating patients with recurrent GBM compared to standard-of-care chemotherapy.

Details about the newly diagnosed GBM trial including trial locations can be found on the NovoCure website (www.novocuretrial.com). 

Sister GBM since 7/09