Please help.. Survival date

cindysuetoyou said:

hello
Hello, Julia and Tracy.

I've been reading your posts and remembering vividly how I felt when my son David was diagnosed in 2009. The absolute shock and the knowledge that our lives would never be the same. We went through the fear of David's brain surgery and what it would do to him, the agony of seeing different doctors and getting different opinions on treatment options...the weight and the uncertainty about what direction to go....it was all an absolute nightmare. I know what you guys are going through, and I am so sorry for this road that you are on, and so very sorry for your pain and grief. I remember it like it was just yesterday.

However, once we decided on which doctor we were going to see, and what treatment we were going to pursue, and got started on treatments, things got better. I believe that better days are ahead for you and your loved ones. I don't know what treatments your sister, Julia, and your husband, Tracy, will be getting, but I will tell you what David has had, and maybe it will help a little to know what to expect.

First, David had a craniotomy the day after his MRI showed a mass in his right frontal lobe. We were terrified at the thought of brain surgery, and were very afraid of what the surgery would do to David, but he has no deficits from the surgery at all. His tumor was deep down, in his corpus callosum. As they wheeled him out of the surgery room, he was talking to the nurses and he was texting friends with his iPhone shortly afterwards. He had a total resection, which meant that they got 100% of the visible tumor. Our NO (neuro-oncologist) told us that even though all the visible tumor was removed, there were still microscopic tumor cells left that could not be surgically removed.

After David recovered from surgery (about 6 weeks), he had radiation treatments---5x a week, for 6 weeks. He also took a chemo called Temodar, and a steroid called Decadron (dexamethasone) . Radiation made David very tired and he lost his hair. He also gained weight from the Decadron. (When I say "very tired" from the radiation, I mean...totally wiped out. Talking was too much effort for him. He was 26 and in great shape, played college basketball, worked out, etc. and yet the radiation really wiped him out.) David's hair grew back and he lost all the weight he gained while on radiation.

After radiation, he started on a higher dose of Temodar. He took it for 5 days every month. It took him about four months to get over the fatigue from the radiation. As far as we can tell, he doesn't have any side effects from the radiation or the surgery. He did have trouble concentrating and he felt like he had some short term memory loss, but we don't know if i was from the treatment or the chemo. He did notice that he had more trouble concentrating when he took the Temodar, but that went away when he wasn't taking Temodar.

David went two years and five months without any tumor recurrence. He pretty much went back to all of his normal activities. He went back to college, worked for Apple, went to the gym, rode his mountain bike, golfed...did pretty much everything he wanted. He did get tired easier, and he's struggled with stomach trouble, but overall, he's really doing well.

This last July, David had two seizures, five days apart. His NO told him to go to the emergency room, and they did an MRI which showed "disease progression." That means...tumor growth. We were very disappointed (devastated) to hear this news. But we rallied and now we are currently taking part in a clinical trial at NIH (the National Institutes of Health) in Betheseda, MD. David has only been on this experimental chemo for two weeks, and we have no idea if it will work or not. They will do an MRI in Sept. to see if it's helping. We are flying out to NIH on Thursday but it's just for bloodwork and cognitive tests.

I will share just a few things that helped me, and I hope that it will help you also. Please be careful about googling all over the internet. So much of the information is outdated and is statistic-driven. It made me an emotional wreck to do too much on the internet.

I read any negative information just once, and then no more. At first, I found myself reading the bad stuff over and over again....I think I was in shock and couldn't believe what I was reading. The positive stuff---I copy and paste it in a file and read it over and over again. I practically memorize it, and I share it with my family and friends.

I had (have) a hard time with the top neuro-oncologists' differences in opinions on treatments, etc. I believe it's because brain tumors are tricky and unpredictable. I consider the unpredictability as something in our favor. I don't like what the doctors predict anyway. I have noticed that every NO we have seen have agreed on a few things: 1) each tumor is genetically unique to the person who has it. So what treatment doesn't work for one person may work for another. 2) A positive attitude is a huge help in the fight against a brain tumor. That's why I make it a point not to dwell on the negatives and I try to fill my mind with every good thing that I can. And I always tell David all the positives that I hear and read about. I even wrote some of the positive things on sticky notes and hung them on my bathroom mirror and I read them over and over while I get ready in the morning. My husband thinks it's a little odd but it helps me.


My son David has a different type of tumor--an anaplastic oligodendroglioma. I've posted a lot on this site (CSN) and I will give you a link to David's blog so you can get a feel for where we are at in his battle. Here's his link: http://web.me.com/davidwebb21/Trusting_in_God/Blog/Blog.html


Here is a link to a website with some posts from brain tumor survivors: http://www.virtualtrials.com/survive.cfm This site helped me when we were just starting out.


This website (CSN) has been a huge strength, comfort, hope, and an encouragement to me. This is the only place where I feel that people understand what I am going through, and how I feel. I hope I haven't written too much in this post...I have good intentions...I want to help you, even if it's only a small help.

I keep in touch with a guy that's the same age as my son, who was diagnosed with an AAIII the same week as David, at the same hospital. About a year and a half after his diagnosis, our doctor thought he saw something suspicious in his follow-up MRI. They were talking about another craniotomy and a different chemo. He went to Duke and that dr. (Dr. Friedman) wasn't so sure that the MRI showed tumor. Duke had this guy stop chemo and take a wait and see approach. I think it's been almost a year with no changes in his MRI. I believe he is a premed student at Tulane....he just recently got married and he's doing good.


David is still doing really good. All of his cognitive tests are great. He does get some pretty bad headaches. We think that may be from the new chemo. No more seizures...he's on Keppra for those. He is still planning on finishing college in the fall, and he just went golfing last weekend. We are very grateful for how well he's doing. We have learned to take it one day at a time.....


I will be praying for both of you, and for your sister, Julia, and your husband, Tracy. Please post whenever you can and let me and the others on this site know how you guys are doing.

Please remember, there are people who beat brain tumors. Never give up, and hold on hard to hope!

Love and blessings,
Cindy in Salem, OR

PS Julia, I read your sister's blog. She writes so well...about such a difficult subject.

I_Promise said:

It helped me to read your post Cindy
My sister is still continuing to post.
There is so much I want to say but can't. There is so much I want to scream but can't.
I love her so so much.
I keep dreaming about my other life, when this diagnosis did not exist. Evenings are worst for me. Mornings, usually I full of hope.
I want to hear that I cure has been found. Now. Not in fifty years.
Thank you Cindy for your long post.

Julia

unknown said:

Thank you for your positive, hopeful posts
Cindy,

I just registered for this site, although I have been reading the posts for a few months. My husband was diagnosed with a GBM in March 2011, and it has been quite a roller coaster ride. We have appreciated the insight we have gained from being able to hear from others in similiar situations. I grew up in Oregon and it's still our favorite place to visit - we love all of the greenery and, of course, the coast. ;-)

I wondered if I could contact you somehow and ask you a private question. My email address is cdolive4ataol.com (to protect it from the spambots out there trolling for emails). Thanks, from Cindy in Texas