Grade 3, an anaplastic astrocytoma
Comments
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great news for all of us fighting this AA3kitkatkaz said:Anaplastic Astrocytoma stage 3 5ys out cancer free
Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.
The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.
I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.
Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat
I am glad to hear you are doing so well. It gives me hope for my son he's 18 and is still fighting and trying to find the right drug combo so it will not come back so now we are almost 2 years in and due to the fact that he had a Bone marrow transplant in 1999 for AML it seem very complex in find the drugs that will not be toxic to him. we will be at NIH for a clinical trail. so we are hopful and we keep praying this will work. his PET scan dosent light up with activity anymore so we hope this drug carboplatin will kick its butt. so we will pray for you and please keep my son J steras in your prays too....
Hopeful and greatful to hear from you
God Bless
D Steras0 -
Diagnosed October 20th, 2009oneangel said:I'm sorry for your families pain.
There is no timeline. Don't get me wrong.....it's not easy. Refuse to be negative. Dont live according to anyone's timeline. Employ the best people you can and attack from all angles. Not just medically.....try nutrition, spiritual council, accupressure......anything. But don't allow statistics to run your life. You are in my prayers....
I feel blessed to have found this discussion group. I would like to share my story, then my treatment plan with you all. I look forward to being a part of this support group.
About three months ago I started having severe headaches. I first noticed what looked like Kaleidoscope shapes in my right eye, and shortly after they would stop I would get nauseous and immediately get a severe headache. This happened again a few days later, so my Husband called our Eye Dr. because it was time for both of us new contacts. They got us in that day, and the Eye Dr. stated she felt I was having Ocular Migraines, I got a new RX for contacts as well as glasses, and we were on our way. Not even a week later I was sick again with a migraine and I went to my Regular Physician who was also a Physician that I had worked in his office over 7 years before I changed jobs. So he knows me personally, and he checked all my reflexes, etc and stated he felt they were Migraines as well; however he gave me a medicine for migraines to take as soon as I started seeing the spots so that it may help reduce the migraine pain when it came on. Then again not even a week later I'm sick and have another headache, and this time my neck is killing me as well and feels knotted up. I again make an appointment with my Personal Dr., and he examines my neck and states that I am having muscle spasms in my neck as well as Stress Migraines. He gave me meds to help with the neck pain, but I am not good on meds, and I had to work, so I only took them at night so it was not really helping that week. I took the next week off work to take the meds and relax per my Husband's instructions
That week off I was sick 3 of the 7 days. I went back to work the next week, and everytime I would stand up I felt I would pass out. I decided on the Thursday of that week I was scheduled off work that I was going to just go sit at the ER to let them do some kind of test or something because I knew something more had to be going on. That Thursday I was dressed and ready to go then said "I will sit there all day and they may not do anything" So I decided to call my Personal Dr. again, and ask him if he would just schedule me some tests. They office told me he would be out till Tuesday, but they would leave him a message. So I was waiting till Tuesday now. Well ad fate had it, Monday night my 2 year old woke up crying so I went and laid in her bed to get her back to sleep at about 3 AM. As I laid there with my arm on her getting her back to sleep I felt the worst pain in the front left side of my head. I honestly thought I was having a Brain Aneurysm, and was wondering if I should get my Husband. It eventually eased and made me feel a little less worried about aneurysm. By the time it was time to get up and get dressed; I was nauseous and could not force myself to get dressed for work. My husband said we are going to ER. He took our baby to Pre-School, and came right back and took me to the ER. This was October 20th, 2009. They got me back real quick for an ER, and had me having a CT within like 30 minutes, however ER Dr. d=said he just wanted to do that since no one else had, but he felt it was just Bilateral Migraines and we would be on our way soon. (Notice this is the third different migraine I have heard in the past couple weeks.) Well within maybe 30 minutes he comes in and says they see something in my left frontal lobe right in the front and did not look to be doing anything but lying right on top of the brain. Not entwined or anything. But that they are not sure what it is. It could be anything from an Infection to a mass. He also stated that there was quite a bit of swelling on my brain as well. He told us they will be coming to get me for an MRI and that they will know more then. About 30 minutes later they have me in MRI, and take me back to ER. No time later he comes in stating there is definitely something there that looks like a mass, and they would like to send me on over to there main facility downtown who has the Neuron Dept. I was admitted to the Main Facility, and they started Steroid immediately to reduce the swelling on the Brain. At first they were talking surgery by the end of the week, however after no headaches at all once Steroid started they released me the second day to continue the steroid to reduce as much swelling for the operation to go more successfully. The did the surgery October 29th, 2009, and when my wonderful surgeon come out to inform my Husband, and Family (I had 49 people in surgery waiting), he stated he felt after looking at it under the microscope it was maybe a Stage 1 or 1.5 tumor. It had a cyst on the front and back of it, and he removed all three due to cyst was made out of same tissue, but they were all just on top of the brain. He stated the final reports would take a few days but he felt confident he got it all, and that it was one that may never grow back and if it did it could take my lifetime to. The MRI the morning after surgery shows he got it all! I was in ICU 2 days and in a regular room 2 days and was released to go home. We went to my follow up on November 11th, 2009, and the final report states it is Stage III. The surgeon told us he is sending me to UAB in Birmingham, AL within the next two weeks for a second opinion as well as to get a treatment plan together. He states he is still hopeful they will be like it is only a Stage 2 or even the initial thought of Stage 1 or 1.5. I have not received my appointment date as now for when I leave for UAB but will get that by today or tomorrow. I do have an appointment today with the Radiologist that will be doing the treatments her in Mobile, AL where I live. So we are still in the dark on what is about to happen as of now. I feel it was a blessing I found this site because I have people going through exactly this. Wanted to join as my adventure begins with the Lord first and Doctor's second. Look forward to sharing! 0 -
Treatment plan!chicken2799 said:Diagnosed October 20th, 2009
I feel blessed to have found this discussion group. I would like to share my story, then my treatment plan with you all. I look forward to being a part of this support group.
About three months ago I started having severe headaches. I first noticed what looked like Kaleidoscope shapes in my right eye, and shortly after they would stop I would get nauseous and immediately get a severe headache. This happened again a few days later, so my Husband called our Eye Dr. because it was time for both of us new contacts. They got us in that day, and the Eye Dr. stated she felt I was having Ocular Migraines, I got a new RX for contacts as well as glasses, and we were on our way. Not even a week later I was sick again with a migraine and I went to my Regular Physician who was also a Physician that I had worked in his office over 7 years before I changed jobs. So he knows me personally, and he checked all my reflexes, etc and stated he felt they were Migraines as well; however he gave me a medicine for migraines to take as soon as I started seeing the spots so that it may help reduce the migraine pain when it came on. Then again not even a week later I'm sick and have another headache, and this time my neck is killing me as well and feels knotted up. I again make an appointment with my Personal Dr., and he examines my neck and states that I am having muscle spasms in my neck as well as Stress Migraines. He gave me meds to help with the neck pain, but I am not good on meds, and I had to work, so I only took them at night so it was not really helping that week. I took the next week off work to take the meds and relax per my Husband's instructions That week off I was sick 3 of the 7 days. I went back to work the next week, and everytime I would stand up I felt I would pass out. I decided on the Thursday of that week I was scheduled off work that I was going to just go sit at the ER to let them do some kind of test or something because I knew something more had to be going on. That Thursday I was dressed and ready to go then said "I will sit there all day and they may not do anything" So I decided to call my Personal Dr. again, and ask him if he would just schedule me some tests. They office told me he would be out till Tuesday, but they would leave him a message. So I was waiting till Tuesday now. Well ad fate had it, Monday night my 2 year old woke up crying so I went and laid in her bed to get her back to sleep at about 3 AM. As I laid there with my arm on her getting her back to sleep I felt the worst pain in the front left side of my head. I honestly thought I was having a Brain Aneurysm, and was wondering if I should get my Husband. It eventually eased and made me feel a little less worried about aneurysm. By the time it was time to get up and get dressed; I was nauseous and could not force myself to get dressed for work. My husband said we are going to ER. He took our baby to Pre-School, and came right back and took me to the ER. This was October 20th, 2009. They got me back real quick for an ER, and had me having a CT within like 30 minutes, however ER Dr. d=said he just wanted to do that since no one else had, but he felt it was just Bilateral Migraines and we would be on our way soon. (Notice this is the third different migraine I have heard in the past couple weeks.) Well within maybe 30 minutes he comes in and says they see something in my left frontal lobe right in the front and did not look to be doing anything but lying right on top of the brain. Not entwined or anything. But that they are not sure what it is. It could be anything from an Infection to a mass. He also stated that there was quite a bit of swelling on my brain as well. He told us they will be coming to get me for an MRI and that they will know more then. About 30 minutes later they have me in MRI, and take me back to ER. No time later he comes in stating there is definitely something there that looks like a mass, and they would like to send me on over to there main facility downtown who has the Neuron Dept. I was admitted to the Main Facility, and they started Steroid immediately to reduce the swelling on the Brain. At first they were talking surgery by the end of the week, however after no headaches at all once Steroid started they released me the second day to continue the steroid to reduce as much swelling for the operation to go more successfully. The did the surgery October 29th, 2009, and when my wonderful surgeon come out to inform my Husband, and Family (I had 49 people in surgery waiting), he stated he felt after looking at it under the microscope it was maybe a Stage 1 or 1.5 tumor. It had a cyst on the front and back of it, and he removed all three due to cyst was made out of same tissue, but they were all just on top of the brain. He stated the final reports would take a few days but he felt confident he got it all, and that it was one that may never grow back and if it did it could take my lifetime to. The MRI the morning after surgery shows he got it all! I was in ICU 2 days and in a regular room 2 days and was released to go home. We went to my follow up on November 11th, 2009, and the final report states it is Stage III. The surgeon told us he is sending me to UAB in Birmingham, AL within the next two weeks for a second opinion as well as to get a treatment plan together. He states he is still hopeful they will be like it is only a Stage 2 or even the initial thought of Stage 1 or 1.5. I have not received my appointment date as now for when I leave for UAB but will get that by today or tomorrow. I do have an appointment today with the Radiologist that will be doing the treatments her in Mobile, AL where I live. So we are still in the dark on what is about to happen as of now. I feel it was a blessing I found this site because I have people going through exactly this. Wanted to join as my adventure begins with the Lord first and Doctor's second. Look forward to sharing!
This is what I posted for my family and friends! It is hard to repeat everything on the phone to everyone.
We received a call from UAB today before we left for my Radiologist appointment and they stated that they want me there Monday the 23rd at 11:00 AM. It is a one day appointment. They will review all of my medical records and slides to see if the treatment that the radiologist Dr. Russell, who I went to see today, and the chemotherapy Dr. Becker, that I will have to also see here in Mobile on Wednesday after I return from UAB, all agree on the best treatment possible. I go back to my radiologist Thursday for them to make a mask to mark where radiation goes. They want to do a combination of radiation that I will do 5 days a week for 6 weeks, and a Chemo Pill called Temodar I will take 7 days a week until the radiation is complete. I will see the Chemo Dr. maybe once a week to monitor blood levels throughout the therapy, but they feel this is the best way to aggressively treat and keep the Cancer from returning and spreading. The radiologist is confident that this is the BEST course of action. He is glad that it is Dr. Nabor’s in UAB that will be my second opinion as well as his consultant on treatment. Dr. Nabor’s actually did a procedure on my Radiologist, treatment for something neurological and the radiologist has not had problems since Dr. Nabor’s helped him! My Radiologist has worked with Dr. Nabor's for over 15 years. The radiation treatments they state takes 15 minutes, and 10 of that is just getting me on a flat bed. The actual treatment only lasts 5 minutes. It is not enclosed, the machine is just above my head. They will put a face mask on me that has everything marked so the radiation goes the same place each time, it also holds my head very still so that I can not move it at all to be sure the radiation is only in the same spot every time. The side effects basically are that I may lose hair at the different spots where the radiation enters the skull, maybe some nausea that they can give me meds for, and that there may not be any other side effects. The chemo pill should be very tolerable as well. The Dr is also letting me come off the steroid at a more rapid pace. Yea maybe I will get some sleep. The Radiologist also mentioned he knows Davis Pilot when he noticed where I work I miss you guys, and I am very positive after meeting with the Radiologist. When I come back from UAB probably Tuesday since it is a one day appointment there, I will have to meet with the Chemo Dr. Wednesday the day before Thanksgiving, and my Radiologist said they will give me the Thanksgiving holiday off, and then start treatment. So since Radiation is Monday thru Friday I feel the treatment will most likely start Monday after Thanksgiving which will be November 30th. So 6 weeks from then I should be on the road back to me He did say that about week 2 or 3 of the combination therapy I will most likely be real fatigued and tired, but I can live with 3 or 4 weeks of feeling yucky since I had headaches for a few months and was sick everytime I turned around. It will honestly be nothing different than what I was already feeling. I will let you guys know the exact date treatment will start when we know, and we can count down the 6 weeks! 0 -
Hello Chickenchicken2799 said:Treatment plan!
This is what I posted for my family and friends! It is hard to repeat everything on the phone to everyone.
We received a call from UAB today before we left for my Radiologist appointment and they stated that they want me there Monday the 23rd at 11:00 AM. It is a one day appointment. They will review all of my medical records and slides to see if the treatment that the radiologist Dr. Russell, who I went to see today, and the chemotherapy Dr. Becker, that I will have to also see here in Mobile on Wednesday after I return from UAB, all agree on the best treatment possible. I go back to my radiologist Thursday for them to make a mask to mark where radiation goes. They want to do a combination of radiation that I will do 5 days a week for 6 weeks, and a Chemo Pill called Temodar I will take 7 days a week until the radiation is complete. I will see the Chemo Dr. maybe once a week to monitor blood levels throughout the therapy, but they feel this is the best way to aggressively treat and keep the Cancer from returning and spreading. The radiologist is confident that this is the BEST course of action. He is glad that it is Dr. Nabor’s in UAB that will be my second opinion as well as his consultant on treatment. Dr. Nabor’s actually did a procedure on my Radiologist, treatment for something neurological and the radiologist has not had problems since Dr. Nabor’s helped him! My Radiologist has worked with Dr. Nabor's for over 15 years. The radiation treatments they state takes 15 minutes, and 10 of that is just getting me on a flat bed. The actual treatment only lasts 5 minutes. It is not enclosed, the machine is just above my head. They will put a face mask on me that has everything marked so the radiation goes the same place each time, it also holds my head very still so that I can not move it at all to be sure the radiation is only in the same spot every time. The side effects basically are that I may lose hair at the different spots where the radiation enters the skull, maybe some nausea that they can give me meds for, and that there may not be any other side effects. The chemo pill should be very tolerable as well. The Dr is also letting me come off the steroid at a more rapid pace. Yea maybe I will get some sleep. The Radiologist also mentioned he knows Davis Pilot when he noticed where I work I miss you guys, and I am very positive after meeting with the Radiologist. When I come back from UAB probably Tuesday since it is a one day appointment there, I will have to meet with the Chemo Dr. Wednesday the day before Thanksgiving, and my Radiologist said they will give me the Thanksgiving holiday off, and then start treatment. So since Radiation is Monday thru Friday I feel the treatment will most likely start Monday after Thanksgiving which will be November 30th. So 6 weeks from then I should be on the road back to me He did say that about week 2 or 3 of the combination therapy I will most likely be real fatigued and tired, but I can live with 3 or 4 weeks of feeling yucky since I had headaches for a few months and was sick everytime I turned around. It will honestly be nothing different than what I was already feeling. I will let you guys know the exact date treatment will start when we know, and we can count down the 6 weeks!
Welcome to this board, I look forward to getting to know you and hearing about your progress. My sister (now age 26) was diagnosed in March 2009 with AA stage 3. She had one tumor removed but the other 2 tumors are not operable. She then had 6 weeks of radiation and she is now on Temador. The radiation made her very tired but she says Temador isn't bad. She is very upbeat and determined to beat this.
Please do keep us posted on your progress. We are always here if you need to talk and we are all rooting for you!! :-)0 -
PBJ AustinPBJ Austin said:Hello Chicken
Welcome to this board, I look forward to getting to know you and hearing about your progress. My sister (now age 26) was diagnosed in March 2009 with AA stage 3. She had one tumor removed but the other 2 tumors are not operable. She then had 6 weeks of radiation and she is now on Temador. The radiation made her very tired but she says Temador isn't bad. She is very upbeat and determined to beat this.
Please do keep us posted on your progress. We are always here if you need to talk and we are all rooting for you!! :-)
That is encouraging about the radiation and chemo! I am so glad she is upbeat about this! I have been staying upbeat as well, and that is what we have to do.
how is she feeling now?
I have a Brother as well, and he is taking this hard, especially since our Mom had a Stage 4 Brain tumor when I was 2 and he was 6. They gave her 6 months to live and she lived 6 years! That was 25 years ago! Medicine has come along way since then!
Thank you for being my first supporter! I will keep all informed and please do the same.
Remember to Trust in the Lord!!!0 -
You sound so good...chicken2799 said:PBJ Austin
That is encouraging about the radiation and chemo! I am so glad she is upbeat about this! I have been staying upbeat as well, and that is what we have to do.
how is she feeling now?
I have a Brother as well, and he is taking this hard, especially since our Mom had a Stage 4 Brain tumor when I was 2 and he was 6. They gave her 6 months to live and she lived 6 years! That was 25 years ago! Medicine has come along way since then!
Thank you for being my first supporter! I will keep all informed and please do the same.
Remember to Trust in the Lord!!!
You sound so good and upbeat, aditude is alot to do with feeling good. My son has gone through all that you are ready to do, summer of 2008 "he is a fashion guy and got dressed is everyday to inpress the nusres" & graduated High school in 2 years while doing the treatment. So find your nitch and do what you can, rest when you can let other people help, cuz they do want to. I think you will do fine this group has given us a lot of hope so keep up the wonderful uplifting outlook. There is a web site for cancer patients for housr cleaning services .....I can't find the email right now but I will get back to you with it's a service that they find someone in your area and the donate the time and services.Hope you have a wonderful Thanksgiving We all have so much to thankful for this year! God bless0 -
dsterasdsteras said:You sound so good...
You sound so good and upbeat, aditude is alot to do with feeling good. My son has gone through all that you are ready to do, summer of 2008 "he is a fashion guy and got dressed is everyday to inpress the nusres" & graduated High school in 2 years while doing the treatment. So find your nitch and do what you can, rest when you can let other people help, cuz they do want to. I think you will do fine this group has given us a lot of hope so keep up the wonderful uplifting outlook. There is a web site for cancer patients for housr cleaning services .....I can't find the email right now but I will get back to you with it's a service that they find someone in your area and the donate the time and services.Hope you have a wonderful Thanksgiving We all have so much to thankful for this year! God bless
Thank you for your response! I have been very positive throughout this, and I know that I can beat this if I stay positive and I believe that The Lord has a plan for me to deliver my testimony. I actually am having my testimony I gave in church Sunday put on You Tube and facebook by a friend right now. As soon as I get the link for You Tube I will put it on here to share with all. I look forward to this discussion group and learning all I can about this disease. I also look forward to just having support and helping support everyone on here!
Your son reminds me of me. I am getting dressed up to go places! Tomorrow I go to get fitted for my mask for preparation for the Radiation to begin, and my Aunt bought me a shirt that has the Pink Breast Cancer Ribbon and says "Fight Like A Girl!" on it. I am wearing that to my appointment tomorrow
Does anyone know how I can change my name from Chicken. My email address is chicken2799 and has been for years so that is the name it is giving me, but I do not want anything about being Chicken to be my name in a time as of this! My name is Michelle 0 -
It is plain to see you are no chicken.chicken2799 said:dsteras
Thank you for your response! I have been very positive throughout this, and I know that I can beat this if I stay positive and I believe that The Lord has a plan for me to deliver my testimony. I actually am having my testimony I gave in church Sunday put on You Tube and facebook by a friend right now. As soon as I get the link for You Tube I will put it on here to share with all. I look forward to this discussion group and learning all I can about this disease. I also look forward to just having support and helping support everyone on here!
Your son reminds me of me. I am getting dressed up to go places! Tomorrow I go to get fitted for my mask for preparation for the Radiation to begin, and my Aunt bought me a shirt that has the Pink Breast Cancer Ribbon and says "Fight Like A Girl!" on it. I am wearing that to my appointment tomorrow
Does anyone know how I can change my name from Chicken. My email address is chicken2799 and has been for years so that is the name it is giving me, but I do not want anything about being Chicken to be my name in a time as of this! My name is Michelle
OK then, I'll call you Michelle. :-) I don't know how to change your name, maybe if you email the administrators they can help.
Speaking as a family member I can tell you this has been very hard. My sister is quite a bit younger than me and this was not supposed to happen to the baby of the family. But there is a way you can help your brother, and it's the same way my sister helped us. Just let him know how positive you feel about the situation and that you are determined to beat this. Remind him of how far medicine has come in 25 years, and how new breakthroughs are happening all the time. I was so depressed to learn of my sister's cancer and ironically, she was the one who comforted me and made me feel better. I still hate this and I wish it would go away, but she has given me a whole new outlook on the situation.
My sister is feeling very well now. She sleeps more than most people. But when she's awake she's the same as she ever was, and except for the bald spot you wouldn't know anything is wrong with her. And besides, she's so cute even the bald spot flatters her. I will be seeing her next week at Thanksgiving, I can't wait.0 -
AA3PBJ Austin said:It is plain to see you are no chicken.
OK then, I'll call you Michelle. :-) I don't know how to change your name, maybe if you email the administrators they can help.
Speaking as a family member I can tell you this has been very hard. My sister is quite a bit younger than me and this was not supposed to happen to the baby of the family. But there is a way you can help your brother, and it's the same way my sister helped us. Just let him know how positive you feel about the situation and that you are determined to beat this. Remind him of how far medicine has come in 25 years, and how new breakthroughs are happening all the time. I was so depressed to learn of my sister's cancer and ironically, she was the one who comforted me and made me feel better. I still hate this and I wish it would go away, but she has given me a whole new outlook on the situation.
My sister is feeling very well now. She sleeps more than most people. But when she's awake she's the same as she ever was, and except for the bald spot you wouldn't know anything is wrong with her. And besides, she's so cute even the bald spot flatters her. I will be seeing her next week at Thanksgiving, I can't wait.
Hi,
My 17 year old daughter has AA3. She was diagnosed at 16, reminds me a lot of your experience. She went to the eye doctor, medical doctor twice, then we took her to ER. That is where they found the tumor. She has had 6 weeks of radiation and 42 days of Temador. Now she is on her 5th cycle of Temador and CCNU. She tolerates it well with the help of Zofran. You are not alone in this horrible tumor. She did have surgery in Feb. 2009 and after the surgery, the doctor told us the same thing he told you, probaly grade 1, will never come back. Two days later we got the news it was grade 3. God bless you.
pat0 -
PBJ AustinPBJ Austin said:It is plain to see you are no chicken.
OK then, I'll call you Michelle. :-) I don't know how to change your name, maybe if you email the administrators they can help.
Speaking as a family member I can tell you this has been very hard. My sister is quite a bit younger than me and this was not supposed to happen to the baby of the family. But there is a way you can help your brother, and it's the same way my sister helped us. Just let him know how positive you feel about the situation and that you are determined to beat this. Remind him of how far medicine has come in 25 years, and how new breakthroughs are happening all the time. I was so depressed to learn of my sister's cancer and ironically, she was the one who comforted me and made me feel better. I still hate this and I wish it would go away, but she has given me a whole new outlook on the situation.
My sister is feeling very well now. She sleeps more than most people. But when she's awake she's the same as she ever was, and except for the bald spot you wouldn't know anything is wrong with her. And besides, she's so cute even the bald spot flatters her. I will be seeing her next week at Thanksgiving, I can't wait.
You do not know how much you sound like my brother! I too have been the one telling him I will be ok! All he can say is, "I want it to be me because I cannot be here without you!" I too am the Baby, it is only me and him, and we are so close. He is 4 years older than me. He runs a very large Ranch here in Mobile, Al, and gets so upset that he cannot be with me every second of the day. He is 15 minutes from me and I try to explain that, but I hear it each time I speak with him! I am so positive about this, and tell him all the time, but he is taking it very hard even with the positive outlook. I am glad that you have shared with me being in his exact position.
We are leaving Sunday morning to head to UAB in Birmingham, AL, and he is not able to come due to they are working a lot of cattle right now. My appointment is for second opinion and recommendations for treatment that will most likely start November 30th. I tried to tell him that my appointment is a one day appointment on Monday, and I will be right back in Mobile, AL Tuesday 15 minutes away again.
I will show him this post and show him he is not alone!
Thank you PBJ!0 -
Patpatriciam said:AA3
Hi,
My 17 year old daughter has AA3. She was diagnosed at 16, reminds me a lot of your experience. She went to the eye doctor, medical doctor twice, then we took her to ER. That is where they found the tumor. She has had 6 weeks of radiation and 42 days of Temador. Now she is on her 5th cycle of Temador and CCNU. She tolerates it well with the help of Zofran. You are not alone in this horrible tumor. She did have surgery in Feb. 2009 and after the surgery, the doctor told us the same thing he told you, probaly grade 1, will never come back. Two days later we got the news it was grade 3. God bless you.
pat
This is the best site that has ever happened to me! I Have been so positive, and that is all any of my friends and family can talk about. It has raised their spirits as well, and to know how great your daughter is doing has made this positive attitude even stronger! Thank you for your shared experience! You will all be in my prayers!
Love
Michelle0 -
AA3chicken2799 said:Pat
This is the best site that has ever happened to me! I Have been so positive, and that is all any of my friends and family can talk about. It has raised their spirits as well, and to know how great your daughter is doing has made this positive attitude even stronger! Thank you for your shared experience! You will all be in my prayers!
Love
Michelle
Hi Michelle,
Good to know you are doing well. Expect there to be bumps along the way, but everything will work out at the end. My daughter is doing well. Still has headaches, but nothing like she used to have. She is living a normal life, going back to school in January. She is a real sweetheart and doesn't like us to worry about her. Her MRI's are clear since her surgery in February. She still tolerates the oral chemo with the help of Zofran. I tell her to Live her Life like she will live until she is an old old lady.....she likes that. She won't let her cancer or fear of it returning stop her from living. God bless.
Pat0 -
You have given me some hope!!kitkatkaz said:Anaplastic Astrocytoma stage 3 5ys out cancer free
Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.
The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.
I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.
Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat
I am going thru NOW what you have already done. This gives me hope.I am 6 months out of surgery....radiation/chemo. combo and went back to work in 3 months...I am taking the "best" chemo pill for stage 3 brain cancer for a year....Temodar.My cancer was enclosed in a massive frontal lobe tumor and my nureosurgeon says he got 99.99% of it.I have had 7 MRIs with all clear results. I do my 5 days on of temodar,kytril,ativan,xanex.I work full-time as a bartender and take my temodar right before bed, so i dont feel sickly. Its just a ruff week.
I know you are looking for someone further out than you....but YOU are further out than me.....so you are HOPE for me.
Thank you.
Be Strong, Live Strong, Pray Strong.
Heather D.0 -
glad to hear this...PBJ Austin said:Hello Chicken
Welcome to this board, I look forward to getting to know you and hearing about your progress. My sister (now age 26) was diagnosed in March 2009 with AA stage 3. She had one tumor removed but the other 2 tumors are not operable. She then had 6 weeks of radiation and she is now on Temador. The radiation made her very tired but she says Temador isn't bad. She is very upbeat and determined to beat this.
Please do keep us posted on your progress. We are always here if you need to talk and we are all rooting for you!! :-)
Soooo glad to hear your sister isnt havent much trouble on Temador.I am going on my 4 th round soon and I have had no problems! Slight bellyaches.I work while taking it.I take it right before bed.I also stay way upbeat and pray every moment.
Be Strong. Live Strong.Pray Strong.
Heather D.0 -
AA3patriciam said:AA3
Hi Michelle,
Good to know you are doing well. Expect there to be bumps along the way, but everything will work out at the end. My daughter is doing well. Still has headaches, but nothing like she used to have. She is living a normal life, going back to school in January. She is a real sweetheart and doesn't like us to worry about her. Her MRI's are clear since her surgery in February. She still tolerates the oral chemo with the help of Zofran. I tell her to Live her Life like she will live until she is an old old lady.....she likes that. She won't let her cancer or fear of it returning stop her from living. God bless.
Pat
I had my bump the day before Thanksgiving. I started having seizures that Wednesday night, and it took them a week to get them under control. I was in the hospital for a week and a day, but am now back at home. It was a small bump along the way, and they had already warned us that seizures were likely. I am starting week 4 of radiation Monday, and have lost all the hair on the left side of my head. My husband shaved my head last night, and it feels weird, but at least it will all grow back the same length. I am still very positive because this is the side effects we must face to reach remission. I still trust the Lord will help me through, and we are halfway through. Like you told your daughter I am gonna live life as though I will live to be an old lady...
Thanks for your reply,
Michelle0 -
Yes, I agree....have faith and hold on to hope!charlie said:Have Faith
Hey
My husband was diagnosed with anaplastic oligoastrocytoma grade III in May of this year. He had surgery, radiation, and chemo as well. He is 34 years old and a principal of a middle school. He has not missed many days of school, so we are extremely blessed. He is not very positive about this disease. I try to encourage and tell him to have Faith. Easy for me to say, I guess. The reason I am writing is there is a great book called, Healed of Cancer by Dodi Osteen. It is a great book about healing. Also check out carepages.com for other people that are dealing with brain cancer. Our oncologist and radiologist are christians and have said many times that the attitude and faith of the patient goes a long way in determining survival.
Hello!
Our 25 yr old son David, who is an athlete in prime shape, playing college basketball, starting having migraines in May of 2009. When he started having double vision, his primary care doctor ordered an MRI which showed a large mass in his brain. We were terrified and shocked. He was referred the next day to Oregon Health Sciences University, and he had a craniotomy the next day. His surgeon and the entire operating team were wonderful...they removed all of the visible tumor and the encapsulating cyst. But the pathology report was bad...grade III anaplastic oligodendroglioma. No chromosome deletions so it would be less sensitive to chemo. The doctor told David and us that the median life expectancy is 3 to 5 years. We were beyond devastated. But I'm sure you all know how we felt. David's dr is a huge research dr, well-respected in the brain cancer field, but he lacks in the human relations dept. A total hope-destroyer. But we believe in God and would far rather trust in God than in human predictions. This is fact...the doctors DO NOT KNOW when someone will live and when someone will die. They are wrong so many times. They look at case histories and at statistics and then they make the best GUESSS that they can. The last time we saw that dr., he asked us if we had any concerns or questions or comments and I told him that we were okay but we needed him to not take away our hope. He acted surprised and said that there is a lot of hope. Quite a switch from when he first told us that David had brain cancer.
We have a friend who was told he would die in 6 months from pancreatic cancer... a different kind of cancer, I know, but a very deadly one too. That was 10 years ago, and he has been cancer-free all this time. He has really encouraged me a lot. I have also read lots of survivor stories at http://sites.google.com/site/glioblastomamultiforme/survivorlinks and there are lots of people who have brain cancer and who beat the odds.
Just some info about David. He had the surgery to remove the tumor. Made an amazing recovery. You would have never known he'd been sick. No deficits or handicaps from the surgery or the tumor. After he recovered from the surgery, he had 6 weeks of chemo and radiation. He was very weak and tired from the radiation and he lost his hair, but other than that, he tolerated that treatment pretty well. He says that he doesn't feel as sharp as he used to, and that he doesn't remember details like he used to, but I think some of that is from the stress he feels. He is a computer expert and he's always helping me with stuff, and he's lightening fast and very smart.....I don't think he has any problem with memory or learning stuff.
David had his last radiation treatment in July. Now he takes chemo (Temodar) 5 days a month. It's a much stronger dose than when he took it during radiation. His hair grew back and he's doing really good. His issues right now are stomach trouble from pain medication, bad headaches, insomnia, and nausea when he takes the chemo. He is seeing a headache specialist right now and hopefully she will be able to help with the headaches.
David will stay on Temodar for the rest of his life, or until (IF) the tumor comes back. He has had 3 MRIs since his surgery and there is no sign of a tumor growing back. His drs are all very pleased. David is working and playing basketball and golfing and riding his mountain bike. He's skinny and he's lost a lot of his muscle, but if you met him, you'd never know that he's in a fight for his life.
God has been so good and so faithful to David and to our family. We are praying for David and holding on to hope. Our God is an awesome God...no matter what the outcome is.
My friend with the pancreatic cancer said that his oncologist told him that some people, according to all the statistics, should die but are still living and are doing good...and the doctors do not know why. They just are. And that dr also told him that as long as someone is breathing and is alive, that there is hope. And I believe that is so true.
We are not even one year into this, so I don't know how encouraging our story will be to people. I hope that there will be some seeds of hope planted in you by my note or by the notes of others. I am glad that I found this website. I need all the encouragement I can get.
love and blessings,
Cindy in Salem, OR0 -
thoughts
I was diagnosed with grade 2-3 astrocytoma in 2002, a diagnosis later changed to ogilodendrocytoma. We were told in the beginning that I had 3-5 years - if I could handle the treatment plan. It was hard, very hard, but I made it through. Now it's been almost 8 years; although disabled from the impact of the cancer and the treatment. the "alien" as we call it, does not appear to have spread.
My husband was deployed just 2 weeks after we learned just what was wrong, before we even knew what treatment I would undergo. Our church family joined my own family and friends to care for me as I went through treatment, their prayers and practical help an amazing and humbling gift.
I am willing to talk - email or whatever - if there is any way you think it might be helpful.0 -
Hi Janet
Hi Janet, lovely to get your mail and that you are so understanding. Well I was diagnosed with a Gr 3 8 years ago. Same treatment really. I am very happy to say I think he will be fine. Im 55 yrs now and when it occured they said I had maybe 12 months to live. As I said that was 8 yrs ago. Mine was in the left occipitalm lobe area and with 95 percent resexted and then 6 weeks radiation. So I feel really positive for your Nephew in Law. Hes young and strong and has all that going for him. Good look in the future. Hugs and kisses, Gerard.0 -
Hallo therekitkatkaz said:Anaplastic Astrocytoma stage 3 5ys out cancer free
Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.
The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.
I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.
Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat
Hi Kit Kat, just a short note after just reading your mail. Well DONE. I am nopw free from this horible thing after been diagnosed with a Gr 3 in 2001. At that time thry told me I would live maybe 12 months. Well they is no sign of it now and all is going well. So mate cheer up its all in front of you. You sound very positive and thats just brilliant. Keep up the good work. Youll be fine.
Ger.0
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