Grade III: Anaplastic Oligodendroglioma lifespan?

momsworld

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.

aldworth6306
I love your Moms thinking

KAZUKOchan

Grade 3
Hi I hope all is well I would just like to tell you my daughter has the same grade 3 oligodendroglioma they took the size of a tennis ball and a half out then radiation and temodar that was in 2006 three weeks later she was back at work she was 29 years old everything was fine until just before her 4 year mark ,she has had the gamaknife done back on temodar and also avastin this last jan 26 was her 5 year mark she is having some problems had to give up work her leftside doesnt work so good but still is living life . She lives with us with her 7 year old son everyday is a blessing . IT was hard in the beginning her husband left her and thier son, any thing we help with please let me know. God bless

cindysuetoyou

KAZUKOchan said:

Grade 3
Hi I hope all is well I would just like to tell you my daughter has the same grade 3 oligodendroglioma they took the size of a tennis ball and a half out then radiation and temodar that was in 2006 three weeks later she was back at work she was 29 years old everything was fine until just before her 4 year mark ,she has had the gamaknife done back on temodar and also avastin this last jan 26 was her 5 year mark she is having some problems had to give up work her leftside doesnt work so good but still is living life . She lives with us with her 7 year old son everyday is a blessing . IT was hard in the beginning her husband left her and thier son, any thing we help with please let me know. God bless

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

lclydes

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.

sadinholland

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

I am new to this site. My
I am new to this site. My husband did not have a seizure, he had headaches that the doctor kept putting off as due to high blood pressure. Finally the doc requested an mri that the insurance denied. He didn't try to get the insurance to approve it,as he was still thinking blood pressure. I called to get it approved, thinking my husband may have a stroke if they don't do something for him. 45 minutes after the mri, we get a call that they found something significant. We weren't expecting them to say a 4.5 X 6 brain tumor! At first they thought it was the glioblastoma and said he may have 6 months to live.This was just by looking at the mri. Admitted in the hospital the same day, July 2,2010 and given meds for swelling, and many test to rule out cancer in other parts of the body, we left there on July 10 for a second opinion appt on July 15. Went to Cleveland Clinic for second opinion and possible surgery and was admitted and had surgery on July 15. Results came back as a grade 3 anaplastic olio. Better than what they thought but still bad. Had 6 months of chemo/temador and radiation, after one month break, started the 5 day temador. Mri in April showed something, according to doc, unsure if it is from the radiation or something new so started 21d temador and now waiting for June to come to see what's happening on the next mri. That's my story. I tried to make it as short as possible. My husband is working and driving and doing very well. It is me who is constantly on edge. Watching, wandering, crying, trying to be strong in front of him and the kids. Thinking what right do I have to be like this, he is the one going through it. Everyday I worry. I feel like I'm going crazy sometimes not knowing from day to day. I have a strong relationship with God and I pray that we will beat this thing, beat the odds. I have visited another site, and there is one person on there that lifts my spirits when I get down. I thank God for that person. I praying for everyone that has this dreaded cancer and ask that you too try to keep the faith. We all need to live our lives to the fullest. Nothing is promised to any of us.

Beckymarie

sadinholland said:

I am new to this site. My
I am new to this site. My husband did not have a seizure, he had headaches that the doctor kept putting off as due to high blood pressure. Finally the doc requested an mri that the insurance denied. He didn't try to get the insurance to approve it,as he was still thinking blood pressure. I called to get it approved, thinking my husband may have a stroke if they don't do something for him. 45 minutes after the mri, we get a call that they found something significant. We weren't expecting them to say a 4.5 X 6 brain tumor! At first they thought it was the glioblastoma and said he may have 6 months to live.This was just by looking at the mri. Admitted in the hospital the same day, July 2,2010 and given meds for swelling, and many test to rule out cancer in other parts of the body, we left there on July 10 for a second opinion appt on July 15. Went to Cleveland Clinic for second opinion and possible surgery and was admitted and had surgery on July 15. Results came back as a grade 3 anaplastic olio. Better than what they thought but still bad. Had 6 months of chemo/temador and radiation, after one month break, started the 5 day temador. Mri in April showed something, according to doc, unsure if it is from the radiation or something new so started 21d temador and now waiting for June to come to see what's happening on the next mri. That's my story. I tried to make it as short as possible. My husband is working and driving and doing very well. It is me who is constantly on edge. Watching, wandering, crying, trying to be strong in front of him and the kids. Thinking what right do I have to be like this, he is the one going through it. Everyday I worry. I feel like I'm going crazy sometimes not knowing from day to day. I have a strong relationship with God and I pray that we will beat this thing, beat the odds. I have visited another site, and there is one person on there that lifts my spirits when I get down. I thank God for that person. I praying for everyone that has this dreaded cancer and ask that you too try to keep the faith. We all need to live our lives to the fullest. Nothing is promised to any of us.

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.

sadinholland

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.

Thank you
I have been going for walks lately since our weather has finally decided to break! My husband doesn't have another MRI until June, it's every 2 months, if I haven't stated that already. Meanwhile I can't sleep, I "stress" eat and I am a nervous wreck. I just read the side effects of dex. That was NEVER told to us. His is taking a small dosage right now, 1mg but now I am scared about that. I am trying to keep the faith, I really am. Good to hear about people surviving longer than 3 years with this horrible thing!

sadinholland

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.

Now this is what I love to
Now this is what I love to hear! I am so glad you are doing well. I pray you will continue to stay on that path!

imprezagm4

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.

I recently found out about a
I recently found out about a gentlemen in town (Bend Oregon) who is at the 8 year mark (oligo) and had no treatment (aside from surgery) until just this year. I saw him at the oncology center. He is doing fantastic it seems.

I don't understand where this 2-3 or 3-5 year number is coming from. Nobody (be it a patient or family member) I have spoken to has succumbed to this type of tumor that quickly.

MeaganShane

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.

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.

sadinholland

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.

21 day cycle of temodar,anyone else?????
I hope all will be well for you and your husband as well Meagan. My husband was the same way when he came home from all the surgery,radiation,a chemo in Sept. He slept most of the time, hardly ever getting out of bed. I was so scared and worried, He went back to work in November and his whole outlook changed. I think he needed to go back to work to keep his mind off of his illness. They told us the same thing, they treat it like a stage 4.He did his 6 weeks of radiation and chemo pill after his surgery, off for a month and then started the 5 day chemo pill. He is still working and doing OK. I just worry about the MRI in June, since they increased his temodar, and wondering if what they saw was something to worry about or radiation effects! I have not read where anyone is on 21 day cycle of chemo. If there is anyone out there, please respond. I pray that everyone on here continues to be strong and lean on the Lord! God Bless!

Bodrul

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

hope your son is well
Hi Cindy,

I almost forgot I was registered on this site. Thanks for your kind message. I wanted to know how your son is doing? I was 26 in January when I was diagoned. 27 now. i'm going through the same thing. your son is the only case I've found similar to mine. I have the same tumour and grade and the treatmentsand were almost the same age. How is he doing?




Bodrul

Bodrul

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

hope your son is well
Hi Cindy,

I almost forgot I was registered on this site. Thanks for your kind message. I wanted to know how your son is doing? I was 26 in January when I was diagoned. 27 now. i'm going through the same thing. your son is the only case I've found similar to mine. I have the same tumour and grade and the treatmentsand were almost the same age. How is he doing?




Bodrul

swankor

cindysuetoyou said:

Thank you to all who replied
I haven't been on this site for a while. I am so encouraged by all of your messages. Thank you so much for taking the time to write.

David is doing great. He's working and getting ready to go back to college. (He skipped a year of college while dealing with surgery, radiation, chemo.) He works out at a gym, plays basketball, does whatever he feels like doing. He is still taking Temodar, and his dr does not have any plans to discontinue Temodar as long as David can continue tolerating the treatment. His dr says that he's kept people on Temodar for as long as four years. I don't know how I feel about that. Three more years seems like a long time, but on the other hand, I've always wanted to fight with every weapon at our disposal, for as long as we can use that weapon. Temodar makes him feel pretty sick, but we know that he could have had to take a much harder chemo, and we are glad that he can take and tolerate Temodar.

David has an MRI and oncology appt on Thursday, Oct. 30th. We are hoping and praying that we get a good report. These appointments scare me so much, but David considers them to just be routine checkups. Overall, his mental outlook is incredible. He just says that he will not allow this to take over his life, and he doesn't talk about it much or act like he's worried. He told me that he does not believe that he is going to die anytime soon. I think that his positive, strong, fighting mental outlook has helped him a lot to stay healthy.

I thank God every single day for how good David is doing. I believe with all my heart that it's God's hand on David that is making the difference.

I pray that you and your loved ones are fighting hard, staying strong, and are doing well.

Love and blessings to you all,
Cindy in Salem, OR

David's progress...
Cindy, so glad to hear that David is doing so well!!! This may sound crazy, but did you work at Secure Horizons in January of '99? I think I may have worked with you...

cindysuetoyou

swankor said:

David's progress...
Cindy, so glad to hear that David is doing so well!!! This may sound crazy, but did you work at Secure Horizons in January of '99? I think I may have worked with you...

Hello!
Hi!

No, I never worked at Secure Horizons. I've been teaching at a private school for over 25 years. Are you in Salem also?

Love and blessings,
Cindy

cushla69

ssaia2 said:

anaplastic astrocytoma
I was just recently diagnosed (thursday) with anaplastic astrocytoma. I have been on temodar since dec 23 and if anything have more energy then before. I will start radiation the week of jan 10th. the best i could find was a 5 year life expectancy so far. but my take on it is that God will have us on this earth as long as he wants us here. God has the plan, not us. if i have 5 years then blessed be me. God is great.

I was diagnosed Last june
I was diagnosed Last june 2010. I have the same belief as you. It's all in Gods hands. My doctor just told me yesterday that htis is something i will have for the rest of my life. i will take temodar and seizure meds for life also. They can never remove it. he does not give life span, he says thats up to God, not him, but says some people can live many years. this was not good news to me that it would be with me for life. i was a school bus driver and loved my job, this has totally changed my life. I just pray every nigh for at least 5 more years to watch my daughter grow up.

dave f

Hi from across the pond!...
Hi Cindy

I am a patient here in the UK fighting a Grade III Oli in my right temporal lobe. I was originally diagnosed in 1998 (when I was 34 and had 1 child with 2nd due in a few months)following a grand mal in the middle of the night. The powers that be decided to leave it at the time... and i had no other problems for 7 years until October 2005. Then it heamorrhaged. I was taken into hospital and had surgery to take out 95% ('size of a lemon') of the tumour. It was now graded IV.
I had radiotherapy followed by chemo (temozolimide) which seemed to have minimal impact on me and i continued to work in central London. In Oct 2008 it came back and i had further surgery, gliadel wafers and then PCV chemo treatment. This time it had a bigger impact on me and it has taken some time to get back to 'decent health' (for a brain cancer patient!) again. - Now i am cycling, walking, swimming to help recuperate and build muscle and doing pretty much most things. Although I am not allowed to drive (past 2.5 years) which is a real drag!
I am not working - i spend 100% of my time with my family looking after myself and getting myself stronger.
I am now 47 (13 years on from original diagnosis - girls now 15 and 12!). I am on regular 2/3 month scans (MRI and PET) and there is something the consultants are keeping an eye on and will want to treat although until my next scan in sept. So I have the summer to look forward to which is great! Onwards and upwards! :-)

So - be positive, be strong and we can win this fight!

Hope this is of some help,
Kindest regards
David

cindysuetoyou

dave f said:

Hi from across the pond!...
Hi Cindy

I am a patient here in the UK fighting a Grade III Oli in my right temporal lobe. I was originally diagnosed in 1998 (when I was 34 and had 1 child with 2nd due in a few months)following a grand mal in the middle of the night. The powers that be decided to leave it at the time... and i had no other problems for 7 years until October 2005. Then it heamorrhaged. I was taken into hospital and had surgery to take out 95% ('size of a lemon') of the tumour. It was now graded IV.
I had radiotherapy followed by chemo (temozolimide) which seemed to have minimal impact on me and i continued to work in central London. In Oct 2008 it came back and i had further surgery, gliadel wafers and then PCV chemo treatment. This time it had a bigger impact on me and it has taken some time to get back to 'decent health' (for a brain cancer patient!) again. - Now i am cycling, walking, swimming to help recuperate and build muscle and doing pretty much most things. Although I am not allowed to drive (past 2.5 years) which is a real drag!
I am not working - i spend 100% of my time with my family looking after myself and getting myself stronger.
I am now 47 (13 years on from original diagnosis - girls now 15 and 12!). I am on regular 2/3 month scans (MRI and PET) and there is something the consultants are keeping an eye on and will want to treat although until my next scan in sept. So I have the summer to look forward to which is great! Onwards and upwards! :-)

So - be positive, be strong and we can win this fight!

Hope this is of some help,
Kindest regards
David

Hello!
Well, hello, David!

Your message helps me so much! I am always so happy when I hear of a victory story like yours! So happy for you, and so encouraged about our situation!

It's been a little over 2 years since David was diagnosed, and he's doing so well! I can feel hope building in me for David's future. I still am battling the fear, but mixed with that is a growing hope that David can beat this, with God's help. I do believe with all of my heart that David is doing this good because of God's hand on his life.

Thank you again for your so very welcome post! I really appreciate your note and your encouragement!
Love and blessings to you,
Cindy in Salem, OR

mirjo

I was diagnosed in 1998 with
I was diagnosed in 1998 with a right frontal lobe oligo when I met with the surgeon, he offered a best-case of a 10 year survival rate. The radiation oncologist offered five. Neither was acceptable to me since I had two small children at the time and couldn't bear the thought of leaving them to grow up without me. Fortunately, I was referred to a brain tumor treatment center that didn't offer numbers, just good long-term survival rates with that particular tumor and the treatment regimen they used. Chemo & radiation turned out to be the one-two punch it was promised to be and I have been in remission since 2000. Everyone is different and therefore responds differently to medications, but medicine is really a whole lot of guesswork, backed by a little but of science. If you think about it--all the things we know to be medical facts now, came to be because someone took a chance on a wing and a prayer and determined it to be so.

Temodar came on the market near the end of my chemo cycles, so I was never given it. Don't ever be afraid to seek a different doctor,if you feel you aren't getting what you need from the one you have. I don't mean you should doctor shop for the diagnosis you want, but they all have different opinions about which meds to use or try. Temodar, which seems to be the preferred option these days, may not be effective for everyone. There is no reason you can't pose that question.

I wish the best for you and your son.

cindysuetoyou

mirjo said:

I was diagnosed in 1998 with
I was diagnosed in 1998 with a right frontal lobe oligo when I met with the surgeon, he offered a best-case of a 10 year survival rate. The radiation oncologist offered five. Neither was acceptable to me since I had two small children at the time and couldn't bear the thought of leaving them to grow up without me. Fortunately, I was referred to a brain tumor treatment center that didn't offer numbers, just good long-term survival rates with that particular tumor and the treatment regimen they used. Chemo & radiation turned out to be the one-two punch it was promised to be and I have been in remission since 2000. Everyone is different and therefore responds differently to medications, but medicine is really a whole lot of guesswork, backed by a little but of science. If you think about it--all the things we know to be medical facts now, came to be because someone took a chance on a wing and a prayer and determined it to be so.

Temodar came on the market near the end of my chemo cycles, so I was never given it. Don't ever be afraid to seek a different doctor,if you feel you aren't getting what you need from the one you have. I don't mean you should doctor shop for the diagnosis you want, but they all have different opinions about which meds to use or try. Temodar, which seems to be the preferred option these days, may not be effective for everyone. There is no reason you can't pose that question.

I wish the best for you and your son.

Thank you!
Thank you so much for your post. I can't tell you how much it helps me and encourages me to read posts like yours. When I feel terrified about the future, I re-read these posts and it helps me to regain my strength and hope.

We are thanking God for David's continuing good reports and are beginning to have hope for a long life for David.

Thank you again--love and blessings to you,
Cindy in Salem, OR