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Brain Cancer Awareness - from a Patient's Perspective

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Brain Cancer Messages
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Valerie Dale

I am presently living with Brain Cancer Glioblastoma Multi Forme. Have had 1 surgery, just finished radiation and low chemo. Waiting 30 days for another chemo run. I am feeling good, but am finding myself so frieghtened by the unknown. Thank you for your stories, they are so comforting and give me hope and peace.

   
Posted Date: 12 October 2009     

Milana Trachtenberg

To whomever this message reaches-

I found this journal randomly several years ago and found it absolutely fascinating. I'd remember it every few months and check in to see David's progress, and I found his story to be incredibly inspiring.

Tonight something reminded me of this and I decided to check back. It had been over a year since my last visit, and I was curious to see what was going on.

I was saddened to hear about David's passing. His story amazed me and continues to keep me in awe of his progress and his ability to fight back against the odds.

Know that David was a really magnificent person who shared his story with the world, and it reached out and touched people in some of the most unlikely places.

I hope you all have come to peace with his passing. He was an inspiring human being.

   
Posted Date: 9 October 2009     

Missi Welch

Big old hug to Samantha & Nicole..........2 more butterflies to his garden

   
Posted Date: 7 October 2009     

Samantha Northcraft

I miss you David. I have been thinking about you a lot lately. I am finally doing the Cadets to make you proud.

   
Posted Date: 4 October 2009     

Nicole

Hi David,

Missing you ... keep thinking we just have to wait until next summer to see you and then I remember,

Much love to you and your family!

   
Posted Date: 30 September 2009     

Moia

For Karen

I am a survivor of an Anaplastic Astrocytoma Grade III. I had surgery with complete removal of the tumor and implanted Gliadel Wafers,external radiation (mine was 6 weeks) and took Temodar at a lower dose during radiation. Then, I took Temodar, at a higher dose than during radiation, monthly for 13 months. I think my doctor wasn't quite sure what to do with me either. In 2006 when I was diagnosed, there weren't many published long term studies which would help to make an informed choice. I felt so crappy that I decided I was done with chemo so I didn't take Temodar any more.

I have an MRI every three months and according to my doctors, will continue to have them every three months up to 5 years. At that point, we'll decide how far apart we will go between MRI's. The last 5 or so have been stable with no sign of active disease. I feel very blessed.

David's situation was different because he was unable to have his initial tumor removed completely and he and his doctors continued on with the Temodar past the limit that was typical at the time.

David was always an advocate of having the proper members on his medical "team" to help make appropriate decisions. Perhaps if you are able, you might consider seeking a second opinion.

Best wishes to you.

   
Posted Date: 22 September 2009     

Candy

oops - sorry, Karen, I neglected to give you the URLs for the websites:
http://www.jerrykline.com/
http://www.caringbridge.org/ca/kate/

   
Posted Date: 18 September 2009     

Candy

to Karen, who asked about Temodar: You might want to check the websites of Jerry Kline and Kate Burke, both long-term glioma survivors, and ask them about their Temodar regimens. Also, if you haven't yet, go to the Musella Brain Tumor website at http://www.virtualtrials.com/musella.cfm. It's incredibly helpful.
Take care...

   
Posted Date: 18 September 2009     

Karen

09/17/09 I had a tumor removed in May 2008. It was an astrocytoma III. The doctor said they removed the complete tumor. I had a month of radiation and began Temodar. After that month, I started taking Temodar pills (300 mg nightly for 5 nights/month). Now the doctor wants me to stop taking Temodar. I have no clue if this is a good idea or not. I get an MRI every three months to check for tumors. What I want to know is, how do you know when to keep taking them or stop taking them? I don't think the doctor even knows this answer. He said a lot of people stop at 6 months or a year. If I stop taking it will the cancer come back faster? My doctor seems to believe that if I continue taking it, the Temodar will lose it's "power" (like antibiotics do when bugs get resistant), or I will get some kind of infection that could make me very ill or worse. Does anyone really know what to do, or is this just new to everyone?

   
Posted Date: 17 September 2009     

Dusty Ayala

Dearest David and Family,
You are still in my daily thoughts and prayers - no matter if you are here or in Heaven. I'm in the background, always.

Love
Dusty

   
Posted Date: 15 September 2009     

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