Grade III: Anaplastic Oligodendroglioma lifespan?

aldworth6306 said:

After 14 years I still get
After 14 years I still get terrified everytime MRI day approaches. I'm sick to my stomach all morning waiting for the results.

A friend wrote this to me when we got the bad news a couple days ago. I've been hearing her words over and over again in my head. Her mom had breast cancer.

"When my mom was first diagnosed with cancer and the outcome didn't look so good, she and I had a conversation about how you can't stop planning for good things in your life. She said something to me about how while this moment was horrible, terrible, and not part of her plan, she get through it because she knew there was another side and she would come out the other side eventually. But she couldn't stop planning for good things in the future... because if she just threw up her hands and just expected the worst or gave up hope in any way, then that was tragedy. Just because bad things happen, it doesn't mean good things won't happen. You can't pick what happens to you, but you can decide if you are robbed of your hope. You have to imagine the life you want and truly believe you will get there."

You can't pick what happens to you, but you can decide if you are robbed of your hope. I keep telling myself that. As hard as it is right now, I've got to keep hoping. Can't stop planning for good things in the future.

I hope David's MRI is clear on the 6th. Good things ARE in his future. Keep telling yourself that. Imagine the life you want for him, and truly believe he will get there.

cindysuetoyou said:

thank you
Thank you for writing and telling me about your daughter's situation. I am so sorry to hear that your daughter has had a recurrence. It is so hard to see our children fight such a terrible disease. I will be prayng for your daughter and for your family.

David's MRI on April 6th was clear. No changes at all. We were so thrilled and grateful to get such a great report. I asked our doctor what would happen when David quit taking Temodar. Would the tumor grow back? My understanding of Temodar is that it puts the cancer cells into a hibernative state--it doesn't kill the cells. When you have to stop taking Temodar, then what? Our doctor said, "Let's wait and see. Our goal is to keep your son intact as long as possible. I would be willing to keep him on Temodar for seven years if he would be willing to take it for that long. And in the meantime, in the next two or three years, there could be some new developments in treatments and medicines." At first I was appalled at the thought of SEVEN YEARS of Temodar. But then I remembered that our doctor had originally told us that David's median life expectancy was 3 to 5 years, and it could be shorter, like 2 years. Now he is saying that there's a possibility of seven years. That was a big encouragement to me.

I am hoping and praying with all of my heart that David can beat this, with God's help. Even though this is like a nightmare for me, I have to say that things really going good for David. He has a rough time with the chemo, and it's so hard to live as a cancer patient, but he's doing great, going to college and getting great grades, working part time, working out at his gym, doing stuff with friends and family...I never thought back when he first was diagnosed, that he would be doing so good two years later. Here's a link to his blogspot if you'd like to read some stuff that he wrote:

http://web.me.com/davidwebb21/Trusting_in_God/Blog/Entries/2011/3/30_Mounds_of_Blessings.html

Thank you again for writing. I hope that you and your daughter and your family will stay strong and keep fighing and praying hard.
Love and blessings,
Cindy

Beckymarie said:

Caregiver
It is extremely difficult being the spouse of someone who is fighting this horrible cancer. Your job becomes managing his cancer, being the cheerleader, the stoic one. Meanwhile you feel like your world is coming down around your ears. The waiting is very anxiety provoking. We did this for 15 months with my husband when he was diagnosed with a GBM in March 2009. I went to counseling and went onto anti=depressants. Hated taking them but had to admit they helped. Try to get some form of exercise, even a quick walk can help give you a reprieve. I am sorry for what you are going through...you are in my thoughts.

lclydes said:

My Three Year MRI...
For Stage III Oligodendroglioma (with gene deletion) is Friday. (4/30/2008 hospitalized for seizure). I don't believe they've ever said mine was anaplastic - but I wasn't awake a lot those days... Anyway, I have continued to thrive after brain surgery for biopsy, 33 days radiation and Temodar, then weekly or biweekly chemo with three different IV types and the same Temodar treatment 6 days on - 28 off. Two hospital stays totalling 15 days.

I'm hopeful now, but I still have extra anxiety right this minute - the MRI results are painful to wait for. Luckily, my neuro-oncologist has access to the results by the time I get back to his office from the MRI lab in Swedish.

I'm going for 10-15 years, and will be thrilled for each day I wake for the rest of my life!!! I have learned to live through pain, then the fear, then the hope, and more other feelings than I would care to mention, but I'm here, and I don't give up easy! Don't you, either.

MeaganShane said:

G'day from Australia, I
G'day from Australia, I understand exactly what you mean about how hard it is to be the spouse of someone who is fighting Cancer. My Journey has just began and I am already feeling the strain. My husband was diagnosed with Grade 3 Anaplastic Astrotoma and Oligod on the 5th of April 2011. (My husband had to make sure that if he got anything he had to make it an extra special one and get two types of Cancers). My Husband went to hospital November last year and was told that he had high blood pressure and to go home and see his local GP what the hospital didn't pick up was that he had his first mild seizure. At the end of November we went back to the hospital with again the mild seizure plus he had a pain in his stomache. He was rushed into emergency surgery as they belived his appendix was going to burst. He has the appendix removed and we thought that was the end of our trouble. Flash forward to April 04 2011 my husband experienced another mild seizure. He beged his local GP for a Cat Scan as he knew that their was something extremely wrong with him. We attended the Cat Scan imaging on April 05 2011 we where told to go directly to the Local Dr's ASAP. I knew straight away that something major was about to start. I was crying all the way to the Dr's. The Local GP started to say "I am so glad you brought your wife with you, I afraid I have some bad news" I think this Dr has worked all his life to deliver such a traumatic phrase as this one. We were told to go to the hospital ASAP my Husband has a really large tumour. My husband handled the first part of this news extremely well, I on the other hand did not. I also new that I had to break the news to my Children both boys aged 16 and 9 (this was extremly hard i must say). We rushed my husband to the hospital and they said they couldn't tell us much as they would have to do an MRI on him. We waited until the next day. My Husband had a 4cm tumour growing on his right frontal lobe. 5 days later my husband went into surgery where they removed most of the tumour they were not able to get the full tumour as the tumour was in a very hard position. My husband made a remakable recovery the neurosurgen believed the tumour would come back as a stage 1 tumour. My husband was struck down with an extremly bad headache on day 4. 6 days later the lab results where back and of course the news was not great. He was was diagnosed with a grade 3. My husband was released from Hosptial two days before Easter. Since my husband has been home he hasn't really been the same. He has had some short term memory loss and he unable to get himself of a really bad funk. I guess the news since coming out of hospital hasn't really been that good. We saw the Oncologist on the 3rd of May and he advised us that he has not seen my husband type of cancer before as the tumour is sitting in a very strange place, the oncologist is not sure on how to treat him. He thinks he will trial him on Radiation and Chemotherapy together as this is how they treat stage 4. We see the Oncologist tomorrow to see if my husband has the 1 19 deletion rate. Fingers crossed. I guess tomorrow we will find out on how they are going to treat him. So I will update with the news. I hope he does have the 1 19 delation as from what i have read this will help with the oligod tumour. I am glad that his website is available as we do not have one in Aussie Land. I have tried to get as much information on this type of Brain tumour but i guess the information is very limited. I have been going through the rollercoaster motions and I am hoping this website will help me in my ways. My children seem to be okay with what is going on and I am trying to keep them informed to my best abilities. Hope all is well with yourself and your partner.

cindysuetoyou said:

Thank you
Thank you, Bodrul, for taking the time to write to me.

I am so sorry to hear about your situation and to hear that you are going to have to tell your mom what the statistics say about your life expectancy. My heart so goes out to your mom. Our family--me, my husband (David's dad), David's two sisters--we all were with David at the doctor's office when they told David. There has never been such a bad time in any of our lives...nothing that any of us has ever experienced comes close to how bad that day was. I know that of course it was the same for you and your family.

But....here we are, over a year and a half later, with clear MRIs and no major side effects. Yes, David has headaches, and his stomach bothers him. He has trouble concentrating when he's taking Temodar. But his life is so much better that we ever thought it would be when they first told us about the tumor.

I believe that the doctors look at statistics and they try to predict outcomes based on those statistics and past situations. But they still are making guesses. They really can't know these things for sure. I have read posts on this site and other places where people are living much longer than the doctors predicted. I know people who were given a worse prognosis than David's and yours and they are still alive and doing well. So you are right--there is always hope.

I would love to stay in touch with you and know how you and your mom are doing. If your mom would like to talk to me, please pass my email address on to her. It's cindysuetoyou@hotmail.com. For us, the very beginning of this road was so hard. We were shocked and terrified. I wish I'd known then how much better it would be a little further down the road....maybe knowing that would help your mom a little.

David doesn't want the cancer to define who he is or take over his life, so he doesn't talk about it except with family and closer friends. It's his way of dealing and I never try to interfere or make him talk about it. He talks to me about it pretty freely, but he does not dwell on it. He totally believes that he is going to kick it and he has a huge fighting spirit and he's very grateful for how good he is going. You can visit his blog: http://web.me.com/davidwebb21/Trusting_in_God/About_Me.html

Thank you again for your post. Please keep us updated. I believe that you and my son both can beat this. Please fight hard and hang on to hope.

Love and blessings,
Cindy in Salem, OR