Grade 3, an anaplastic astrocytoma
Comments
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Treatment protocolBuzzyBee1208 said:3 years
12/10/11 3 year b-day. I have read that 14 years is the new goal to beat IM working on it. Everycase is diffeent If he is doing good God is Good.... Eat cancer fighting food cut out as much red meat as possible NO NO sugar and starch. I dont know much but I am willing to share what i have learned.
I just found this discussion board and I am so inspired by the stories here. My brother was just diagnosed with a AA 3 a few weeks ago. He lives in Switzerland and is receiving treatment in Zurich. After the biopsy and scans his doctors told him they can't operate to remove the tumor, or parts of it, as it sitd in a non-ideal location. Does anyone here know if it is standard protocol to do radiation forst for six weeks, then follow with chemo, or if this is usually done concurrently? They are telling him radiation first, then a new scan then chemo if needed. But they are also offering him a clinical trial that combines the two at the same time. I'm not sure how differently doctors in Switzerland handle these types of tumors. Any information would be appreciated.0 -
hi my name is Laura i do notBuzzyBee1208 said:3-6 months Doc says
kicked him out of my room and I told him that was not enough time. Doc 2 gave me a year. My current doctor says I am doing 99% better than most of his patients. God Is Good. 3 yrs and counting.. astrocytome grade 3.
I have been told -researched a little that this type of cancer: hereditary and less than 3% are woman under 50. Anybody in my boat? Lets chat share info
hi my name is Laura i do not have cancer but my husband does we live in Canada back in 2007 my husband was diagnosed with stage 3 tumour which he was told was rare as it was growing out from the brain stem he had surgery which removed about 90% then 6mnths of radiation and almost 2 yrs of temedol.he stopped the temedol and went back to work his last MRI which was in Dec 2011showed a two cm growth know were waiting for word from the surgeon. My husband was told 5 yrs but he is not a statistic we will beat this one way or another were thinking maybe something more natural this time0 -
Diet ?!BuzzyBee1208 said:3 years
12/10/11 3 year b-day. I have read that 14 years is the new goal to beat IM working on it. Everycase is diffeent If he is doing good God is Good.... Eat cancer fighting food cut out as much red meat as possible NO NO sugar and starch. I dont know much but I am willing to share what i have learned.
My husband has Grade 3 tumor. He is goign to start Avastin in couple fo weeks. I wanted to do everyhing humanly possible. My husband loves food (sugar very much) and does not beleive in diet will have to do anything with the tumor (his theory is that if diet has any effect, the doctors would have suggested it!). Could you please share your opinion?0 -
18 year old female with Anaplastic Astrocytoma 3BuzzyBee1208 said:3-6 months Doc says
kicked him out of my room and I told him that was not enough time. Doc 2 gave me a year. My current doctor says I am doing 99% better than most of his patients. God Is Good. 3 yrs and counting.. astrocytome grade 3.
I have been told -researched a little that this type of cancer: hereditary and less than 3% are woman under 50. Anybody in my boat? Lets chat share info
Hi Buzy Bee:
My 18 year old daughter was diagnosed in Feb. 2011, she was onlhy 17 then. I feel just like Julia (I Promise) wrote earlier - just sick today from the thought of my daughter's prognosis. She had brain surgery, they got 85-90%, six weeks of radiation with Temodar and now we are doing a year of chemo. The chemo is Irinetecan, Avastin and the last infusion has Temodar.
Today on the morning news, they had a 17 year old girl who had a baby and then died from brain cancer. I was still drinking my coffee when I heard that. I have faith. Somedays, I KNOW that God has a plan for my daughter and it is all good. Other days, I know he has a plan, but I am not certain what that is. She is struggling through the chemo. She has a speech impairment from the tumor (left frontal lobe). I am going to fight like the biggest Mama bear on this planet. I claim new health on her every night. I am a praying warrior and I know that God is good. I had not heard that this was hereiditary, did you?
I don't know how she got this. This Spring, we are going to find a new neuro-oncologist because our current one is not working out for us. We need someone to champion her fight. We are going to look at MD Anderson and UCLA San Francisco unless someone knows a better hospital. I wish you the best and God Bless. Edna0 -
I am sorry to hear thatourdream said:Grade 3
My brother just made it 13 years after a grade 3 diagnosis. His has now came back.
Hi:
I am sorry to hear that. I hope and pray they have a good treatment plan or surgery for him. I send God's blessings to you and your brother.
Edna0 -
radiation coupled with chemodaizee44 said:Treatment protocol
I just found this discussion board and I am so inspired by the stories here. My brother was just diagnosed with a AA 3 a few weeks ago. He lives in Switzerland and is receiving treatment in Zurich. After the biopsy and scans his doctors told him they can't operate to remove the tumor, or parts of it, as it sitd in a non-ideal location. Does anyone here know if it is standard protocol to do radiation forst for six weeks, then follow with chemo, or if this is usually done concurrently? They are telling him radiation first, then a new scan then chemo if needed. But they are also offering him a clinical trial that combines the two at the same time. I'm not sure how differently doctors in Switzerland handle these types of tumors. Any information would be appreciated.
HI:
My daughter was diagnosed with AA3 (left frontal lobe) in February 2011. She had brain surgery first in Seattle. They got 85-90%. Then she had six weeks of radiation combined with Temodar for 42 days (U of Washington). She took a Temodar pill at night during the whole radiation time period. I think it was like 120mg a day of the chemo/Temodar. Then she took a month off and then she got a port installed in her chest. She is now doing one year of chemotherapy. The chemo is 2x a month. The first infusion is Avastin and Irinetecan. The last infusion is the same but she has to take Temodar for five days beginninng on the first day of the last infusion. The Temodar is really high, 400 mg. a day, it makes her very very sick. Currently, we have lowered the Temodar for 3 months to give her a break. I send you God's blessings and want to encourage you to pray and to have others pray for your family as well.
Edna0 -
NaturopathRaani01 said:Diet ?!
My husband has Grade 3 tumor. He is goign to start Avastin in couple fo weeks. I wanted to do everyhing humanly possible. My husband loves food (sugar very much) and does not beleive in diet will have to do anything with the tumor (his theory is that if diet has any effect, the doctors would have suggested it!). Could you please share your opinion?
Hi:
We have a oncologist but we also see a nauturopath doctor. He says that cancer loves sugar because it metobolizes quickly. So, sugar is bad for people with cancer. He said that it was bad to eat sugar when you have cancer anywhere else in your body, but he was uncertain on the brain because of the blood brain barrier. The brain keeps everything out so well, that is why chemo is not as effective on brain cancer. I bet Julia (I promise) can explain it better. I am not very good at it. I do know that my daughter feels so much better on a lot of veggies, her nausea is better managed. Good luck and God Bless.
Edna0 -
saw that too...etc.alutiiqmom said:18 year old female with Anaplastic Astrocytoma 3
Hi Buzy Bee:
My 18 year old daughter was diagnosed in Feb. 2011, she was onlhy 17 then. I feel just like Julia (I Promise) wrote earlier - just sick today from the thought of my daughter's prognosis. She had brain surgery, they got 85-90%, six weeks of radiation with Temodar and now we are doing a year of chemo. The chemo is Irinetecan, Avastin and the last infusion has Temodar.
Today on the morning news, they had a 17 year old girl who had a baby and then died from brain cancer. I was still drinking my coffee when I heard that. I have faith. Somedays, I KNOW that God has a plan for my daughter and it is all good. Other days, I know he has a plan, but I am not certain what that is. She is struggling through the chemo. She has a speech impairment from the tumor (left frontal lobe). I am going to fight like the biggest Mama bear on this planet. I claim new health on her every night. I am a praying warrior and I know that God is good. I had not heard that this was hereiditary, did you?
I don't know how she got this. This Spring, we are going to find a new neuro-oncologist because our current one is not working out for us. We need someone to champion her fight. We are going to look at MD Anderson and UCLA San Francisco unless someone knows a better hospital. I wish you the best and God Bless. Edna
Hi, Edna.
I think I saw that same news story on Facebook...the girl's name was Jenni Lake. Here's the FB link to her page, jenni's journey:http://www.facebook.com/jennis.journey. It was a heartbreaker of a story. What incredible unselfishness. It made me feel sick to my stomach and started me on a crying jag that I really haven't totally gotten over.
The doctors that we have seen have all said that brain cancer is not believed to be hereditary. I don't know if they meant just David's tumor type: oligodendroglioma. I think they meant all primary brain tumors are not hereditary. We don't have any history of anyone in our family ever having any form of any cancer. Not one relative. And we have a huge family. The biggest health concerns in our family have been heart trouble, high blood pressure, strokes, diabetes, those kinds of things.
I am glad that you are going to find a neuro-oncologist that will fight harder for your daughter. I believe in being proactive and not settling for the nearest doctor or for a doctor that isn't doing what you want. We got our third opinion from UCSF (in 2009 when David was first diagnosed) and I really liked them. They were our second choice after OHSU. Back then, I had misgivings about having a doctor and his team treating David from a distance, but after our experience with NIH in Maryland, I discovered that it is possible to have great care from a team that isn't in your back yard. We ended up staying with OHSU partly because we wanted to participate in the BBBD clinical if David had a recurrence. That didn't work out the way we had planned, though.
About the BBBD..... I believe that David had issues with the treatment because his tumor load is so great now. And I blame the amount of tumor that he has on his insurance company. We lost valuable, irreplaceable time arguing with them about covering the BBBD clinical. When we were denied treatment by the insurance company, we went to NIH in Maryland for treatment and it didn't help. So from May to Nov. David's tumors were virtually unchecked because he didn't receive any effective treatment. After all that hassle, arguing, heartbreak, and pleading, he finally got approved for the BBBD but now he can't handle the BBBD. His tumors are taking up too much room in his head, and he can't tolerate any swelling, and the BBBD causes some swelling. I am heartsick, thinking that the delay in getting treatment for David could cost him the last few years of his life. He is fighting back from the terrible time he had with the last BBBD treatment but it hasn't been easy. He is nauseated, he has really bad bloody noses, he has blood in his stool, he has headaches, his bones and joints ache really bad, and he feels lousy in general. He doesn't want company, he doesn't want to go anywhere, he doesn't want to watch the Ducks game tomorrow with his friends....he's just worn out and he's lost most of his hope. I hate it for him. Yet he doesn't complain and he is always so kind and caring towards me...thanking me for the meals I make, taking the trash out for me, giving me hugs and telling me that he loves and appreciates me.
The doctors tried to taper off on the steroids but I could tell that David was not handling it well. His eyes and his face got puffy, and not puffy like he gets from steroids. It looked more like fluid retention. His eyes were really bleary and he seemed out of it. I noticed that he wasn't talking very much either. So we increased the steroids again. He says he feels a little better now.
New Years was really hard for us. Looking back on 2011 is so painful to me, and I am afraid of what 2012 holds for us. David and I just stayed home by ourselves all night. My husband works graveyards, so he wasn't home. David and I went to bed early but I ended up calling my older son, Dallas (David's brother) and we cried together on the phone. I felt guilty for spreading around my misery, but I rarely talk about David to Dallas. Dallas deals with David's situation by using the ostrich method. You know, burying his head in the sand. I just usually let him, but not last night.
I am going to try to work hard at regaining some measure of hope. I don't know exactly how to go about that. It would be wonderful if our next MRI showed some improvement. I will start looking for some good things and talk about those things and thank God for them. I think I've allowed myself to become too negative. I should have been more diligent about protecting and nurturing hope for David's situation.
I'm sorry that I have rambled on. Writing my thoughts like this helps me sort through my emotions. I think about you and your daughter, and about Julia and Kat, and momsworld and her daughter, and 4theloveofmysis, and Chris_W, and Raani01, and connsteele and her son David, and Girl2010, and kmponder, and Beckymarie and sonfollower, and cdolive4, and Michelle (chicken) and so many more people from this site. I pray for all of you every night. May God bless you all and bring peace and healing to you and to your loved ones.
Love and blessings,
Cindy in Salem, OR0 -
Saw that too...cindysuetoyou said:saw that too...etc.
Hi, Edna.
I think I saw that same news story on Facebook...the girl's name was Jenni Lake. Here's the FB link to her page, jenni's journey:http://www.facebook.com/jennis.journey. It was a heartbreaker of a story. What incredible unselfishness. It made me feel sick to my stomach and started me on a crying jag that I really haven't totally gotten over.
The doctors that we have seen have all said that brain cancer is not believed to be hereditary. I don't know if they meant just David's tumor type: oligodendroglioma. I think they meant all primary brain tumors are not hereditary. We don't have any history of anyone in our family ever having any form of any cancer. Not one relative. And we have a huge family. The biggest health concerns in our family have been heart trouble, high blood pressure, strokes, diabetes, those kinds of things.
I am glad that you are going to find a neuro-oncologist that will fight harder for your daughter. I believe in being proactive and not settling for the nearest doctor or for a doctor that isn't doing what you want. We got our third opinion from UCSF (in 2009 when David was first diagnosed) and I really liked them. They were our second choice after OHSU. Back then, I had misgivings about having a doctor and his team treating David from a distance, but after our experience with NIH in Maryland, I discovered that it is possible to have great care from a team that isn't in your back yard. We ended up staying with OHSU partly because we wanted to participate in the BBBD clinical if David had a recurrence. That didn't work out the way we had planned, though.
About the BBBD..... I believe that David had issues with the treatment because his tumor load is so great now. And I blame the amount of tumor that he has on his insurance company. We lost valuable, irreplaceable time arguing with them about covering the BBBD clinical. When we were denied treatment by the insurance company, we went to NIH in Maryland for treatment and it didn't help. So from May to Nov. David's tumors were virtually unchecked because he didn't receive any effective treatment. After all that hassle, arguing, heartbreak, and pleading, he finally got approved for the BBBD but now he can't handle the BBBD. His tumors are taking up too much room in his head, and he can't tolerate any swelling, and the BBBD causes some swelling. I am heartsick, thinking that the delay in getting treatment for David could cost him the last few years of his life. He is fighting back from the terrible time he had with the last BBBD treatment but it hasn't been easy. He is nauseated, he has really bad bloody noses, he has blood in his stool, he has headaches, his bones and joints ache really bad, and he feels lousy in general. He doesn't want company, he doesn't want to go anywhere, he doesn't want to watch the Ducks game tomorrow with his friends....he's just worn out and he's lost most of his hope. I hate it for him. Yet he doesn't complain and he is always so kind and caring towards me...thanking me for the meals I make, taking the trash out for me, giving me hugs and telling me that he loves and appreciates me.
The doctors tried to taper off on the steroids but I could tell that David was not handling it well. His eyes and his face got puffy, and not puffy like he gets from steroids. It looked more like fluid retention. His eyes were really bleary and he seemed out of it. I noticed that he wasn't talking very much either. So we increased the steroids again. He says he feels a little better now.
New Years was really hard for us. Looking back on 2011 is so painful to me, and I am afraid of what 2012 holds for us. David and I just stayed home by ourselves all night. My husband works graveyards, so he wasn't home. David and I went to bed early but I ended up calling my older son, Dallas (David's brother) and we cried together on the phone. I felt guilty for spreading around my misery, but I rarely talk about David to Dallas. Dallas deals with David's situation by using the ostrich method. You know, burying his head in the sand. I just usually let him, but not last night.
I am going to try to work hard at regaining some measure of hope. I don't know exactly how to go about that. It would be wonderful if our next MRI showed some improvement. I will start looking for some good things and talk about those things and thank God for them. I think I've allowed myself to become too negative. I should have been more diligent about protecting and nurturing hope for David's situation.
I'm sorry that I have rambled on. Writing my thoughts like this helps me sort through my emotions. I think about you and your daughter, and about Julia and Kat, and momsworld and her daughter, and 4theloveofmysis, and Chris_W, and Raani01, and connsteele and her son David, and Girl2010, and kmponder, and Beckymarie and sonfollower, and cdolive4, and Michelle (chicken) and so many more people from this site. I pray for all of you every night. May God bless you all and bring peace and healing to you and to your loved ones.
Love and blessings,
Cindy in Salem, OR
You were mentioning Brain Cancer being hereditary. My Mom passed away in 1984 due to a Stage 4 Glioblastoma. When she was diagnosed they gave her 6 months to live, and she lived for 6 years. I believe she held on to see me and my brother get to an age that we knew her, and understood that she was sick. I don't think she wanted to leave us without us understanding that she loved us and wished she could be here for us! I was 9 days shy of turning 8, and my brother was 11 when she passed away. When I went to UAB (Birmingham) for my 1st appointment, I let my NO know this, and we asked could it be hereditary. He said that there is no evidence that it is, but that the room he came out of before he came into my room had a Mother who was just diagnosed. Her son had died of a Brain Tumor not even two weeks before she was diagnosed. I spoke with that woman while we were waiting on our MRI's, and she said that she had taken care of her grown son through this, and now she was going through the same thing. My Brother and I participated in a research thing they were doing at UAB, but never heard anything from it. I will ask them when I go for my follow up on the 18th. The NO said he still does not feel it is hereditary, but that going from one room to the next had him questioning things. I hope and pray every day that it is not hereditary. I will be sure to let you know what they say after my follow up on if they think it could be or not!
Always in my prayers!0 -
Brain tumor being hereditary?chicken2799 said:Saw that too...
You were mentioning Brain Cancer being hereditary. My Mom passed away in 1984 due to a Stage 4 Glioblastoma. When she was diagnosed they gave her 6 months to live, and she lived for 6 years. I believe she held on to see me and my brother get to an age that we knew her, and understood that she was sick. I don't think she wanted to leave us without us understanding that she loved us and wished she could be here for us! I was 9 days shy of turning 8, and my brother was 11 when she passed away. When I went to UAB (Birmingham) for my 1st appointment, I let my NO know this, and we asked could it be hereditary. He said that there is no evidence that it is, but that the room he came out of before he came into my room had a Mother who was just diagnosed. Her son had died of a Brain Tumor not even two weeks before she was diagnosed. I spoke with that woman while we were waiting on our MRI's, and she said that she had taken care of her grown son through this, and now she was going through the same thing. My Brother and I participated in a research thing they were doing at UAB, but never heard anything from it. I will ask them when I go for my follow up on the 18th. The NO said he still does not feel it is hereditary, but that going from one room to the next had him questioning things. I hope and pray every day that it is not hereditary. I will be sure to let you know what they say after my follow up on if they think it could be or not!
Always in my prayers!
Reading your post, I'm wondering too if brain tumors are hereditary. Our son (age 34, two brain tumor dxs: first one was a medulloblastoma, diagnosed in 1985 at 8 years old; then in April 2011, diagnosed with AA3 at age 34.) His paternal grandfather died of a brain tumor in 1968. This was before I had met my husband but from what his mom has told me, the surgeon just opened his dad up, saw that it was bad, and closed him back up. No treatment or anything. Of course, back then, I don't know how much they were able to treat brain tumors. His mom doesn't even know what kind it was. Maybe today, he could have had treatment and lived longer than 9 months.
I wonder if instead of being hereditary, it's some environmental factor(s) that family members were all exposed to... drinking the same water or living close to a toxic waste site or radiation exposure from some unknown source?0 -
Connsteeleconnsteele said:Brain tumor being hereditary?
Reading your post, I'm wondering too if brain tumors are hereditary. Our son (age 34, two brain tumor dxs: first one was a medulloblastoma, diagnosed in 1985 at 8 years old; then in April 2011, diagnosed with AA3 at age 34.) His paternal grandfather died of a brain tumor in 1968. This was before I had met my husband but from what his mom has told me, the surgeon just opened his dad up, saw that it was bad, and closed him back up. No treatment or anything. Of course, back then, I don't know how much they were able to treat brain tumors. His mom doesn't even know what kind it was. Maybe today, he could have had treatment and lived longer than 9 months.
I wonder if instead of being hereditary, it's some environmental factor(s) that family members were all exposed to... drinking the same water or living close to a toxic waste site or radiation exposure from some unknown source?
You know my Brother and I were talking, and there are different types of chemical, concrete, etc. plants around our area. They had us send in Water Samples from our homes. I can name 6 people that I know including myself and my Mom that was diagnosed with a Brain Tumor in our area. Really makes you wonder... They did this research back in 2009 when I was diagnosed, and I really never thought of it till I read the posts about it being hereditary. I am definitely going to ask them when I go back.
Michelle
Mobile, Al0 -
sending good thoughts and love to you and Davidcindysuetoyou said:saw that too...etc.
Hi, Edna.
I think I saw that same news story on Facebook...the girl's name was Jenni Lake. Here's the FB link to her page, jenni's journey:http://www.facebook.com/jennis.journey. It was a heartbreaker of a story. What incredible unselfishness. It made me feel sick to my stomach and started me on a crying jag that I really haven't totally gotten over.
The doctors that we have seen have all said that brain cancer is not believed to be hereditary. I don't know if they meant just David's tumor type: oligodendroglioma. I think they meant all primary brain tumors are not hereditary. We don't have any history of anyone in our family ever having any form of any cancer. Not one relative. And we have a huge family. The biggest health concerns in our family have been heart trouble, high blood pressure, strokes, diabetes, those kinds of things.
I am glad that you are going to find a neuro-oncologist that will fight harder for your daughter. I believe in being proactive and not settling for the nearest doctor or for a doctor that isn't doing what you want. We got our third opinion from UCSF (in 2009 when David was first diagnosed) and I really liked them. They were our second choice after OHSU. Back then, I had misgivings about having a doctor and his team treating David from a distance, but after our experience with NIH in Maryland, I discovered that it is possible to have great care from a team that isn't in your back yard. We ended up staying with OHSU partly because we wanted to participate in the BBBD clinical if David had a recurrence. That didn't work out the way we had planned, though.
About the BBBD..... I believe that David had issues with the treatment because his tumor load is so great now. And I blame the amount of tumor that he has on his insurance company. We lost valuable, irreplaceable time arguing with them about covering the BBBD clinical. When we were denied treatment by the insurance company, we went to NIH in Maryland for treatment and it didn't help. So from May to Nov. David's tumors were virtually unchecked because he didn't receive any effective treatment. After all that hassle, arguing, heartbreak, and pleading, he finally got approved for the BBBD but now he can't handle the BBBD. His tumors are taking up too much room in his head, and he can't tolerate any swelling, and the BBBD causes some swelling. I am heartsick, thinking that the delay in getting treatment for David could cost him the last few years of his life. He is fighting back from the terrible time he had with the last BBBD treatment but it hasn't been easy. He is nauseated, he has really bad bloody noses, he has blood in his stool, he has headaches, his bones and joints ache really bad, and he feels lousy in general. He doesn't want company, he doesn't want to go anywhere, he doesn't want to watch the Ducks game tomorrow with his friends....he's just worn out and he's lost most of his hope. I hate it for him. Yet he doesn't complain and he is always so kind and caring towards me...thanking me for the meals I make, taking the trash out for me, giving me hugs and telling me that he loves and appreciates me.
The doctors tried to taper off on the steroids but I could tell that David was not handling it well. His eyes and his face got puffy, and not puffy like he gets from steroids. It looked more like fluid retention. His eyes were really bleary and he seemed out of it. I noticed that he wasn't talking very much either. So we increased the steroids again. He says he feels a little better now.
New Years was really hard for us. Looking back on 2011 is so painful to me, and I am afraid of what 2012 holds for us. David and I just stayed home by ourselves all night. My husband works graveyards, so he wasn't home. David and I went to bed early but I ended up calling my older son, Dallas (David's brother) and we cried together on the phone. I felt guilty for spreading around my misery, but I rarely talk about David to Dallas. Dallas deals with David's situation by using the ostrich method. You know, burying his head in the sand. I just usually let him, but not last night.
I am going to try to work hard at regaining some measure of hope. I don't know exactly how to go about that. It would be wonderful if our next MRI showed some improvement. I will start looking for some good things and talk about those things and thank God for them. I think I've allowed myself to become too negative. I should have been more diligent about protecting and nurturing hope for David's situation.
I'm sorry that I have rambled on. Writing my thoughts like this helps me sort through my emotions. I think about you and your daughter, and about Julia and Kat, and momsworld and her daughter, and 4theloveofmysis, and Chris_W, and Raani01, and connsteele and her son David, and Girl2010, and kmponder, and Beckymarie and sonfollower, and cdolive4, and Michelle (chicken) and so many more people from this site. I pray for all of you every night. May God bless you all and bring peace and healing to you and to your loved ones.
Love and blessings,
Cindy in Salem, OR
Hi Cindy Sue:
Thanks for sharing your journey. It does help to learn what others are doing and also just knowing that someone else really really understand our situations. Sarah had her MRI in December. Seattle left me a voice message saying it was good. But, later on the NO called and said they do have two spots they are watching, the same ones they have been watching. After I spoke with her, I did not feel like the MRI was good. She has thrown in the towel and we are not even done with the race. That is what has caused us to watch to search again. Our plan is to stay the course on the current treatmet but have future plans. Like you said be proactive.
My heart hurts for you and David when I read your posts. And sometimes I am full of fear - what does 2012 bring for all of us? 2011 was a doozey for us. My father-in-law passed away in December. My first born was all set to graduate with honors was diagnosed with Brain Cancer on Februay 4, 2011. The worst day of my life. I will never get over that night.
The one good thing is my faith has grown tremendously this year. I have faith!
I know what you mean about the ostrich. My ostrich is Julia my middle daughter. She is 16. She is running so far and so fast from this whole situation. But - it is quite painful for Sarah because she missed her sister's company. I am thinking that we should do MD Anderson. Have you heard anything about them?
We say prayers every night for everyone suffering from brain cancer, all cancers. I DO believe 2012 will be better. I know that God has something good planned for all of us. I am claiming it Cindy Sue. Happy New Year. I am happy that David improved so much.
Edna0 -
hereditarychicken2799 said:Saw that too...
You were mentioning Brain Cancer being hereditary. My Mom passed away in 1984 due to a Stage 4 Glioblastoma. When she was diagnosed they gave her 6 months to live, and she lived for 6 years. I believe she held on to see me and my brother get to an age that we knew her, and understood that she was sick. I don't think she wanted to leave us without us understanding that she loved us and wished she could be here for us! I was 9 days shy of turning 8, and my brother was 11 when she passed away. When I went to UAB (Birmingham) for my 1st appointment, I let my NO know this, and we asked could it be hereditary. He said that there is no evidence that it is, but that the room he came out of before he came into my room had a Mother who was just diagnosed. Her son had died of a Brain Tumor not even two weeks before she was diagnosed. I spoke with that woman while we were waiting on our MRI's, and she said that she had taken care of her grown son through this, and now she was going through the same thing. My Brother and I participated in a research thing they were doing at UAB, but never heard anything from it. I will ask them when I go for my follow up on the 18th. The NO said he still does not feel it is hereditary, but that going from one room to the next had him questioning things. I hope and pray every day that it is not hereditary. I will be sure to let you know what they say after my follow up on if they think it could be or not!
Always in my prayers!
When we went to my sisters first appt. The doctor listed off some conditions that would make it hereditary. Which we didnt have.He said that the hereditary link were to those conditions. They said a blow to the head or expose to some chemicals, or it just happens they dont know why.0 -
Dear Alutiiqmomalutiiqmom said:I am sorry to hear that
Hi:
I am sorry to hear that. I hope and pray they have a good treatment plan or surgery for him. I send God's blessings to you and your brother.
Edna
I am sure that you posted the information before but could you please remind me why your daughter is on the infusion of both avastin, irinetecan and temodar? Is it that Duke is being more aggressive than the regular treatment of just surgery, radiation, temodar? I am curious.
And as far as the sugar, I agree with your naturopath. My sister eats very rarely anything that has sugar.
Julia0 -
AA3nrmbenz said:Brother with AAO 3 in left frontal lobe -
My brother was diagnosed with an anaplastic oligoastrocytoma WHO Grade III two weeks ago. Intraoperatively they did not take it all as they were afraid of permanently damaging his motor cortex leaving him speechless. So tumor remains (they also thought it was a GBM Grade IV on cold path in surgery). Anyway - we have just seen the oncologist two days ago and now she says they have decided on whole brain radiation - which I do not understand as this is usually reserved for metastatic cancers - I was under the assumption that they would use fractionated focal radiation and Temodar (which he will start).
He is 43 and has 1 11 yr old son. Unfortunately he made his living talking and has slurred speech now.
Does anyone have experience with whole brain radiation in these cases? And how do you all feel after your chemo and radiation starts - I do not have any experience with Temodar - how well is it tolerated - what can I tell him to expect? All advice / information appreciated. Has anyone had to move forward and use self-directed tumor vaccines made from their own tumor? They have held his tissue for this purpose.
Thanks - I am caring for him for the next 2 weeks from out of state - do most of you resume normal life and jobs during chemo/XRT?
I got missdiognosed in 2000 I was 30 I was sent to a specalist with my scans,,I forgot to say I was having seizures.when I went to this so called specialist he tells me he's got good news n bad news.He says the good news it's an aracnoid sist the bad news is we don't know what's cauasing the seizures.I tell him I boxed as an amateture he replieis that could be it.I asked what now more tests?He rtells me half the people your age that start having seizure out of the blu like you are go throught the rest of there life not knowing why they just controle it with meds.I looked at it like I always knew this was gonna happen to me some day partying like a rock star like i was.So i had to take 500mg of dilanton every day n 7 years later I find myself in prison for manufacturing marijuana.Long story short I get properly diagnosed had 2 surgeries the fisrt went fine but they only got 30% of it a week later they went in and got the rest after that I wound up paralized couldn't even speek but all the scans shwed no sing of tumor after 6 week of radiation+Temedor so I cntinude to take thr Temedor.At this point I though I had it beat only to find when I got out that there's no beating this type of cancer I have and every med. I take my body eventually become amune to.So after taking the Temedor all sort of diffenent ways i went on to intovenouse chemo what seems to work Evaston it's now 2012 n I haven't had a treatment in a good three monnths that's just me evston is working for I seem to hadnle all the meds. they through at me including the Temedor I never lost my hair or anything.0 -
anaplastic astrocytoma grade IIIBuzzyBee1208 said:3-6 months Doc says
kicked him out of my room and I told him that was not enough time. Doc 2 gave me a year. My current doctor says I am doing 99% better than most of his patients. God Is Good. 3 yrs and counting.. astrocytome grade 3.
I have been told -researched a little that this type of cancer: hereditary and less than 3% are woman under 50. Anybody in my boat? Lets chat share info
i'm going on 4 years plus and my mri's are totally clean. don't listen to any diagnosis just plan on being around like everyone else. i'm 43 and going strong -you got this0 -
aa3cushla69 said:christy i was diagnosed with
christy i was diagnosed with AA3 in Nov 2010. ure statements r very true. would like to talk to u. Imma still alive and kickin also. Got to, my lil girl depends on me.
Hi Christy,
My dad was also diagnosed with AA3 in july 2010. Of course his prognosis was also poor but after surgery ,radiation and temodar he is cancer free. My question to is that his doctor still have him on monthly temodar it seems be causing several side effects. Do you take temodar also?
Thanks,
Sandi0 -
temodar questionpapa joe said:aa3
Hi Christy,
My dad was also diagnosed with AA3 in july 2010. Of course his prognosis was also poor but after surgery ,radiation and temodar he is cancer free. My question to is that his doctor still have him on monthly temodar it seems be causing several side effects. Do you take temodar also?
Thanks,
Sandi
Hi:
My 18 year old daughter was diagnosed with AA3 in February 2011. We are still finishing her 12 month treatment plan. It includes Avastin, Irinetecan and Temodar. She also had brain surgery and radiation. I am curious how long they plan on keeping him on Temodar? Where does he get treatment? We are thinking of going to MD Anderson for a second opinion, well a back up plan in th event of a reoccurrence. Right now, her MRI's are stable. I have read other posts of other people taking Temodar like a maintenance drug. I send you God's blessings!
Edna0 -
thank youmykos said:anaplastic astrocytoma grade III
i'm going on 4 years plus and my mri's are totally clean. don't listen to any diagnosis just plan on being around like everyone else. i'm 43 and going strong -you got this
HI:
Thank you for keeping HOPE alive! We need to hear that on this website. God Bless you.
Edna0
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