anaplastic astrocytoma grade 3

2

Comments

  • j_waffles
    j_waffles Member Posts: 22
    Stay strong, all you moms!
    I love reading these, because it totally makes me think of my mom. I'm also a kid with brain cancer, and the one person who helped me though the hardest part was my mom. So here's my story as encouragement for you moms:

    Back in 1996, my dad was diagnosed with a Grade IV Oligoastrocytma. The docs only gave him a couple years to live and told my mom to get her affairs together. He had surgery and chemo (PVC). Now he's 52 and runs marathons. Though in addition to treatment, he did some holistic treatments and changed his diet.

    December 2008, I went to the ear doctor cuz I was hearing a weird noise in my ear. A CT scan that was quickly upgraded to an MRI showed a large tumor in my right parietal lobe. My mom had already been through it before, but she told me "it's different when it's your BABY who has cancer." On my way to the hospital for my surgery, she asked me what I was thinking and if I was scared. I replied, "No, I'm just worried about you. You guys will be bored in the waiting room, and I get to blink my eyes and surgery will be over."

    After my surgery, it took a while for them to get me an ICU room, and I was really chatty with the nurse -- talking about how amazing my mom is -- enough that she brought my mom back to the post-operative area to shut me up. I was SOOOO happy to see her (and loopy, haha).. and she was happy that I was being a nuisance so she got to see me early! Also, my recovery over the past year was so great that she would tell her close friends and coworkers about me, almost bragging. I knew it was because she's a proud parent. She also went to every doc appointment, helped me change my diet to match my dad's and drove me around when seizures kept me from driving.

    April 2010: We were out of town to visit my older sister, and my dad was going to run a marathon. While with my dad and me in the hotel room, she had a sudden heart attack. I frantically called 911, and both my dad and I tried performing CPR on her but to no avail. She was gone within a minute.

    Hearing your fears of your daughter dying before you makes me wonder if my mom thought that. If she did, it was probably only initially, and she never let me know. She told me that having brain cancer doesn't change me, and I'll continue to live a long life. I'll stay true to her word, even though I wish she could have seen more of my long life ahead!

    Oh, and for my progress: I've just started up on Temodar, since I changed neuro docs, and this doc (my dad's doc) thinks slow growth still needs to be treated. I'll be doing at least 24 cycles and supplementing it with holistic therapy. Although my condition might not be as bad as your daughter's... stay strong and give her hope like my mom did to me. It's really made me a strong young woman and I'll be thankful to her the rest of my life.

    Jenny

    PS- My mom's name was Cindy too.
  • aliveandblessed
    aliveandblessed Member Posts: 6
    Momsworld
    I had my first and only grand mal seizure on April 25, 09. The doctors here said it wa low grade based on the MRI and CT. They suggested leaving it and monitoring it or I could get a second opinion. I chose a second opinion from JHHU. The Neuro surgeon there thought it looked low grade but recommended surgery. The surgery was done on May 22,09 and went well (tumor the size of a plum, right frontal lobe). I did 6 weeks of a combination of radiation and oral chemo (Temodar) followed by 5 days of chemo a month for 6 months. So far all MRI's have been clear. My next one is this Friday. I feel well and do not have residual issues. Occassionally I come out with the wrong word or have to stop and think about what I was trying to say before it comes back to me. I returned to work as a teacher in Aug. 09 (2 days before my last combined radiation & chemo treatments. Contrary to my usual inclination, I did not read much about this tumor until I had completed my treatments. Now I am reading more about it and looking for survivor stories. I spent last summer reading only funny stories and I did not watch anything about death. Prayer, family & friends are the best assets when facing this giant.
    Does your daughter have any discomfort when sleeping on the area where her craniotomy was performed? I do still find that it feels uncomfortable to sleep directly on the right side of my head. As a mother myself I am glad that I am the one with this diagnosis. It is so hard to watch your child go through serious illnesses.
  • momsworld
    momsworld Member Posts: 135

    Momsworld
    I had my first and only grand mal seizure on April 25, 09. The doctors here said it wa low grade based on the MRI and CT. They suggested leaving it and monitoring it or I could get a second opinion. I chose a second opinion from JHHU. The Neuro surgeon there thought it looked low grade but recommended surgery. The surgery was done on May 22,09 and went well (tumor the size of a plum, right frontal lobe). I did 6 weeks of a combination of radiation and oral chemo (Temodar) followed by 5 days of chemo a month for 6 months. So far all MRI's have been clear. My next one is this Friday. I feel well and do not have residual issues. Occassionally I come out with the wrong word or have to stop and think about what I was trying to say before it comes back to me. I returned to work as a teacher in Aug. 09 (2 days before my last combined radiation & chemo treatments. Contrary to my usual inclination, I did not read much about this tumor until I had completed my treatments. Now I am reading more about it and looking for survivor stories. I spent last summer reading only funny stories and I did not watch anything about death. Prayer, family & friends are the best assets when facing this giant.
    Does your daughter have any discomfort when sleeping on the area where her craniotomy was performed? I do still find that it feels uncomfortable to sleep directly on the right side of my head. As a mother myself I am glad that I am the one with this diagnosis. It is so hard to watch your child go through serious illnesses.

    Hi,
    My daughter does not

    Hi,
    My daughter does not have any discomfort at all where they did her 2 surgeries. The tumor was in her cerrebellum and the size of a golf ball, so I guess yours and hers were around the same size just different area. She just finished her radiation and chemo combo. We are now on a month break where we will be taking her on a well deserved vacation. When we come back she will be on Temodar 5 days on and 23 days off for 1 year, Hoping for the best.
  • aliveandblessed
    aliveandblessed Member Posts: 6
    momsworld said:

    Hi,
    My daughter does not

    Hi,
    My daughter does not have any discomfort at all where they did her 2 surgeries. The tumor was in her cerrebellum and the size of a golf ball, so I guess yours and hers were around the same size just different area. She just finished her radiation and chemo combo. We are now on a month break where we will be taking her on a well deserved vacation. When we come back she will be on Temodar 5 days on and 23 days off for 1 year, Hoping for the best.

    Enjoy your vacation and your daughter momsworld
    My husband and I took a cruise after I completed the 6 week radiation and chemo combo and before starting the 6 months of Temodar. It was great. I did go to bed early because I was tired and didn't have the stamina to stay up with the night owls. Although it is not something people talk about alot, the biggest problem I had during the 6 months of chemo was constipation (senokot or the generic of it) helped that. I took a nap every afternoon after work. I was able to work the whole way through it with only a few days missed when I got bronchitis. When you work in a classroom full of children with special needs, it is hard not to get a few bugs even without a suppressed immune system.
  • aliveandblessed
    aliveandblessed Member Posts: 6
    j_waffles said:

    Stay strong, all you moms!
    I love reading these, because it totally makes me think of my mom. I'm also a kid with brain cancer, and the one person who helped me though the hardest part was my mom. So here's my story as encouragement for you moms:

    Back in 1996, my dad was diagnosed with a Grade IV Oligoastrocytma. The docs only gave him a couple years to live and told my mom to get her affairs together. He had surgery and chemo (PVC). Now he's 52 and runs marathons. Though in addition to treatment, he did some holistic treatments and changed his diet.

    December 2008, I went to the ear doctor cuz I was hearing a weird noise in my ear. A CT scan that was quickly upgraded to an MRI showed a large tumor in my right parietal lobe. My mom had already been through it before, but she told me "it's different when it's your BABY who has cancer." On my way to the hospital for my surgery, she asked me what I was thinking and if I was scared. I replied, "No, I'm just worried about you. You guys will be bored in the waiting room, and I get to blink my eyes and surgery will be over."

    After my surgery, it took a while for them to get me an ICU room, and I was really chatty with the nurse -- talking about how amazing my mom is -- enough that she brought my mom back to the post-operative area to shut me up. I was SOOOO happy to see her (and loopy, haha).. and she was happy that I was being a nuisance so she got to see me early! Also, my recovery over the past year was so great that she would tell her close friends and coworkers about me, almost bragging. I knew it was because she's a proud parent. She also went to every doc appointment, helped me change my diet to match my dad's and drove me around when seizures kept me from driving.

    April 2010: We were out of town to visit my older sister, and my dad was going to run a marathon. While with my dad and me in the hotel room, she had a sudden heart attack. I frantically called 911, and both my dad and I tried performing CPR on her but to no avail. She was gone within a minute.

    Hearing your fears of your daughter dying before you makes me wonder if my mom thought that. If she did, it was probably only initially, and she never let me know. She told me that having brain cancer doesn't change me, and I'll continue to live a long life. I'll stay true to her word, even though I wish she could have seen more of my long life ahead!

    Oh, and for my progress: I've just started up on Temodar, since I changed neuro docs, and this doc (my dad's doc) thinks slow growth still needs to be treated. I'll be doing at least 24 cycles and supplementing it with holistic therapy. Although my condition might not be as bad as your daughter's... stay strong and give her hope like my mom did to me. It's really made me a strong young woman and I'll be thankful to her the rest of my life.

    Jenny

    PS- My mom's name was Cindy too.

    J_waffles Stay strong moms
    I am sure your mother would be so proud of you. She obvoiously was a great mom. I am a mom and will become a first time grandmom next year but I still needed my mom to help me through my surgery and following treatments. She only used the word cancer when telling family and friends the first time (she told them that was the only time she would use the word). You were blessed to have such a great mom and she will continue to live on through you. I think it is easier to be the survivor that it would be for me to deal with one of my children going through this. What type of diet are you and your dad on? Keep fighting and God bless you.
  • aliveandblessed
    aliveandblessed Member Posts: 6
    j_waffles said:

    Stay strong, all you moms!
    I love reading these, because it totally makes me think of my mom. I'm also a kid with brain cancer, and the one person who helped me though the hardest part was my mom. So here's my story as encouragement for you moms:

    Back in 1996, my dad was diagnosed with a Grade IV Oligoastrocytma. The docs only gave him a couple years to live and told my mom to get her affairs together. He had surgery and chemo (PVC). Now he's 52 and runs marathons. Though in addition to treatment, he did some holistic treatments and changed his diet.

    December 2008, I went to the ear doctor cuz I was hearing a weird noise in my ear. A CT scan that was quickly upgraded to an MRI showed a large tumor in my right parietal lobe. My mom had already been through it before, but she told me "it's different when it's your BABY who has cancer." On my way to the hospital for my surgery, she asked me what I was thinking and if I was scared. I replied, "No, I'm just worried about you. You guys will be bored in the waiting room, and I get to blink my eyes and surgery will be over."

    After my surgery, it took a while for them to get me an ICU room, and I was really chatty with the nurse -- talking about how amazing my mom is -- enough that she brought my mom back to the post-operative area to shut me up. I was SOOOO happy to see her (and loopy, haha).. and she was happy that I was being a nuisance so she got to see me early! Also, my recovery over the past year was so great that she would tell her close friends and coworkers about me, almost bragging. I knew it was because she's a proud parent. She also went to every doc appointment, helped me change my diet to match my dad's and drove me around when seizures kept me from driving.

    April 2010: We were out of town to visit my older sister, and my dad was going to run a marathon. While with my dad and me in the hotel room, she had a sudden heart attack. I frantically called 911, and both my dad and I tried performing CPR on her but to no avail. She was gone within a minute.

    Hearing your fears of your daughter dying before you makes me wonder if my mom thought that. If she did, it was probably only initially, and she never let me know. She told me that having brain cancer doesn't change me, and I'll continue to live a long life. I'll stay true to her word, even though I wish she could have seen more of my long life ahead!

    Oh, and for my progress: I've just started up on Temodar, since I changed neuro docs, and this doc (my dad's doc) thinks slow growth still needs to be treated. I'll be doing at least 24 cycles and supplementing it with holistic therapy. Although my condition might not be as bad as your daughter's... stay strong and give her hope like my mom did to me. It's really made me a strong young woman and I'll be thankful to her the rest of my life.

    Jenny

    PS- My mom's name was Cindy too.

    J_waffles Stay strong moms
    I am sure your mother would be so proud of you. She obvoiously was a great mom. I am a mom and will become a first time grandmom next year but I still needed my mom to help me through my surgery and following treatments. She only used the word cancer when telling family and friends the first time (she told them that was the only time she would use the word). You were blessed to have such a great mom and she will continue to live on through you. I think it is easier to be the survivor that it would be for me to deal with one of my children going through this. What type of diet are you and your dad on? Keep fighting and God bless you. Sorry, I guess I pressed the submit button twice.
  • j_waffles
    j_waffles Member Posts: 22

    J_waffles Stay strong moms
    I am sure your mother would be so proud of you. She obvoiously was a great mom. I am a mom and will become a first time grandmom next year but I still needed my mom to help me through my surgery and following treatments. She only used the word cancer when telling family and friends the first time (she told them that was the only time she would use the word). You were blessed to have such a great mom and she will continue to live on through you. I think it is easier to be the survivor that it would be for me to deal with one of my children going through this. What type of diet are you and your dad on? Keep fighting and God bless you. Sorry, I guess I pressed the submit button twice.

    Thank you
    You're right, she was a great mom and wonderful person to all those around her. I've learned a lot from her, even after her death.

    Our change in diet consists of cutting out processed sugars completely and still watching the natural sugars we take in (including fruits). The American Brain Tumor Association posts on their website that studies show a sudden peak in insulin (produced when we have sugars) encourages pre-cancerous cells to become cancerous. What that basically means... cells around a tumor will turn into tumor cells more quickly when we consume sugary things.

    We also avoid red meat, pork and processed meats as these have been known to also promote cancer growth.

    My general doctor who has a good understanding of nutrition gave me this link recently:
    http://www.aicr.org/site/PageServer?pagename=recommendations_home
    It's very interesting and I believe it applies to pretty much all cancer.
  • momsworld
    momsworld Member Posts: 135

    Enjoy your vacation and your daughter momsworld
    My husband and I took a cruise after I completed the 6 week radiation and chemo combo and before starting the 6 months of Temodar. It was great. I did go to bed early because I was tired and didn't have the stamina to stay up with the night owls. Although it is not something people talk about alot, the biggest problem I had during the 6 months of chemo was constipation (senokot or the generic of it) helped that. I took a nap every afternoon after work. I was able to work the whole way through it with only a few days missed when I got bronchitis. When you work in a classroom full of children with special needs, it is hard not to get a few bugs even without a suppressed immune system.

    You deserved to go on that
    You deserved to go on that cruise. I can't even stay up late, that just comes with age-LOL-. So far my daughter hasn't really had any side effects other than hairloss. During her radiation and chemo she was taking Zofran for nausea, but the day after her last treatment she was fine. She still has alot of energy. She is 12 and we are not. We'll see how she feels once she starts the higher dose of chemo. I will pray for you and everyone else on this site that God will take care of you. I get nervous about all the germs in school when she goes back. The school nurse and I have been in touch and she said that she will send a letter home the first week of school letting parents know that there is a immune comprimised child and if there child has any symptoms of cold,flu etc to call her before sending them to school. If there happens to be some sort of cold/flu/strep throat breakout I will have to keep her home until it's under control. Good luck and lets keep in touch.
  • aliveandblessed
    aliveandblessed Member Posts: 6
    momsworld said:

    You deserved to go on that
    You deserved to go on that cruise. I can't even stay up late, that just comes with age-LOL-. So far my daughter hasn't really had any side effects other than hairloss. During her radiation and chemo she was taking Zofran for nausea, but the day after her last treatment she was fine. She still has alot of energy. She is 12 and we are not. We'll see how she feels once she starts the higher dose of chemo. I will pray for you and everyone else on this site that God will take care of you. I get nervous about all the germs in school when she goes back. The school nurse and I have been in touch and she said that she will send a letter home the first week of school letting parents know that there is a immune comprimised child and if there child has any symptoms of cold,flu etc to call her before sending them to school. If there happens to be some sort of cold/flu/strep throat breakout I will have to keep her home until it's under control. Good luck and lets keep in touch.

    Momsworld
    I took all the vitamins that are supposed to boost immunity B-complex,C, Pro-Biotics, echinacea. I am not sure how much they actually helped but I felt a little better taking them (like I was doing something) and my counts stayed good. I also carried masks to school in case someone in the class was sick (very few parents keep their children home for a cold). I wore baseball caps until my har grew back. It's curlier now than it ever was. It your daughter has a decrease in energy it will just mean you will be able to keep up with her a little better. My sister-in-law's mother is a breast cancer survivor of about 20+ years. Her prognosis was not so good at the time. She kept reading all kinds of articles (pre-internet) and sharing them with her doctor. I like her doctors answer to the added info. He told her "you are not a statistic, you are a person." This site is great. I wasn't ready to go looking until after I had completed my treatments, now I read up on all I can. I think attitude has alot to do with recovery. Every year that we keep the cancer at bay is a year that medical science has been able to make new discoveries.
  • aliveandblessed
    aliveandblessed Member Posts: 6
    j_waffles said:

    Thank you
    You're right, she was a great mom and wonderful person to all those around her. I've learned a lot from her, even after her death.

    Our change in diet consists of cutting out processed sugars completely and still watching the natural sugars we take in (including fruits). The American Brain Tumor Association posts on their website that studies show a sudden peak in insulin (produced when we have sugars) encourages pre-cancerous cells to become cancerous. What that basically means... cells around a tumor will turn into tumor cells more quickly when we consume sugary things.

    We also avoid red meat, pork and processed meats as these have been known to also promote cancer growth.

    My general doctor who has a good understanding of nutrition gave me this link recently:
    http://www.aicr.org/site/PageServer?pagename=recommendations_home
    It's very interesting and I believe it applies to pretty much all cancer.

    J_waffles
    Thank you for the diet info. I love sweets and am trying hard to keep sugar out of my diet now. I am glad that your dad is doing well. The good news about Temodar is you don't lose your hair from that like from radiation. God Bless you and your family!
  • Big Sister
    Big Sister Member Posts: 1
    momsworld said:

    You deserved to go on that
    You deserved to go on that cruise. I can't even stay up late, that just comes with age-LOL-. So far my daughter hasn't really had any side effects other than hairloss. During her radiation and chemo she was taking Zofran for nausea, but the day after her last treatment she was fine. She still has alot of energy. She is 12 and we are not. We'll see how she feels once she starts the higher dose of chemo. I will pray for you and everyone else on this site that God will take care of you. I get nervous about all the germs in school when she goes back. The school nurse and I have been in touch and she said that she will send a letter home the first week of school letting parents know that there is a immune comprimised child and if there child has any symptoms of cold,flu etc to call her before sending them to school. If there happens to be some sort of cold/flu/strep throat breakout I will have to keep her home until it's under control. Good luck and lets keep in touch.

    Brother AA3 at Dhmc, Lebanon
    First time at this site even though my brother was diagnosed with an aggressive AA3 in January 2003. He was 55 at the time. Has been followed all along by neuro-oncology at DHMC, Lebanon, NH. He is a single guy without a wife or kids, so I am his 'primary' support person. His tumor was inoperable due to location and his treatment options included radiation and chemo (Temador). He did seven weeks of radiation but declined the chemo.

    We have been very, very pleased with the care he has recieved at DHMC and have only the best things to say about the facility and its doctors...they are gifted and caring medical professionals who have done everything for my brother.

    What I want you to know is that my brother is still with us...seven and a half years later!

    My best to you...my love and support...
  • cbrowne1976
    cbrowne1976 Member Posts: 1
    new here
    Hello,
    My 15 year old daughter was also diagnosed this January with the same form of cancer. We found out "by accident"; she had 2 brain surgeries in December to remove what they thought was a benign cyst in her right temporal lobe, believed to be causing her Epilepsy.
    When the pathology reports showed it was an AA3, no one believed it...her Neurologists and Neurosurgeon at Thomas Jefferson University Hospital were beyond shocked, as were we.
    After another pathology test at the Childrens Hospital of Philadelphia, it was confirmed for sure.
    Although it appears that luckily the whole tumor was removed, she underwent the standard 6 week course of oral chemo (Temodar) and radiation treatments.
    Now we are on the 5 days a month oral chemo maintenance therapy - on month 3.
    The first month was very difficult for her, as the dose of Temodar is double than that of which she had been on during the chemo/radiation course.
    However, it seems that she is "used" to it now, though we still deal with fatigue and nausea.
    We go back for an MRI soon, so we hope it shows nothing.
    I am glad I joined this forum...I know I am not the only parent out there caring for a child with cancer, but being able to read others' stories is helpful.
    For everyone here caring for a loved one with cancer, I wish all the best for you and yours.
  • scia65
    scia65 Member Posts: 5
    Hi I have a astrocytoma
    Hi I have a astrocytoma glioma grade 2, I have had 2 surgeries to remove it and have done 32 treatments of radiation and have been on temodar also. Its a rough road but I am still here by the way my tumor is still here. But I function
  • momsworld
    momsworld Member Posts: 135
    scia65 said:

    Hi I have a astrocytoma
    Hi I have a astrocytoma glioma grade 2, I have had 2 surgeries to remove it and have done 32 treatments of radiation and have been on temodar also. Its a rough road but I am still here by the way my tumor is still here. But I function

    Hi there
    My daughter was diagnosed in march 2010 with AA3, she has had 42 days of temodar and 35 radiation treatments and had just started on her 2nd round of temodar when her MRI came back with changes. She just had her 3rd surgery because the tumor came back. They are diagnosing it the same,but are really unable to tell because of radiation to that area. They think it is now glioblastoma. The doctors told me that my 12 year old daughter was going to die. We are not ready to accept this yet, so we are going to another hosp where thay are doing clinical trials and hopefully offering other treatment options. best of luck to you. I will pray for everyone on this site.
  • PBJ Austin
    PBJ Austin Member Posts: 347
    momsworld said:

    Hi there
    My daughter was diagnosed in march 2010 with AA3, she has had 42 days of temodar and 35 radiation treatments and had just started on her 2nd round of temodar when her MRI came back with changes. She just had her 3rd surgery because the tumor came back. They are diagnosing it the same,but are really unable to tell because of radiation to that area. They think it is now glioblastoma. The doctors told me that my 12 year old daughter was going to die. We are not ready to accept this yet, so we are going to another hosp where thay are doing clinical trials and hopefully offering other treatment options. best of luck to you. I will pray for everyone on this site.

    second opinion
    Hello momsworld, I am sorry to hear of this setback but you are doing the right thing to get another opinion. When my kid sister was first diagnosed they told her both tumors were inoperable. At my father's insistence she went to MD Anderson and Dr. Sawaya disagreed with the diagnosis of inoperable. She had the operation and the larger tumor was removed. I hate to think where we would be w/o that second opinion. If there is any way you can get her to MD Anderson in Houston please do so.

    I hope with all my heart the other hospital will be able to help. Please keep us posted, you and your family will be in my thoughts, along with everyone else on this board.

    Pam
  • momsworld
    momsworld Member Posts: 135

    second opinion
    Hello momsworld, I am sorry to hear of this setback but you are doing the right thing to get another opinion. When my kid sister was first diagnosed they told her both tumors were inoperable. At my father's insistence she went to MD Anderson and Dr. Sawaya disagreed with the diagnosis of inoperable. She had the operation and the larger tumor was removed. I hate to think where we would be w/o that second opinion. If there is any way you can get her to MD Anderson in Houston please do so.

    I hope with all my heart the other hospital will be able to help. Please keep us posted, you and your family will be in my thoughts, along with everyone else on this board.

    Pam

    Hi PBJ Austin
    I wish I could get to MD Anderson, but we live to far away. I live in NH. We are going to go to Dana Farber/The jimmy Fund Clinic. We have left the other hosp that we were being treated at because I feel that they do not have enough experience in this type of cancer. Dana Farber is in Boston MA. They may tell us the same thing, but I can't just accept what DHMC has said to us. They were cold about it too. They looked at me and said " the pathology is back and the diagnosis is the same because it is almost impossible to read after radiation, might have gone up a grade but we do not know. Your child is going to die from this" Just like that. I went numb and said to myself there has to be something else. Anyway, we are not giving up yet. We have God on our side and are praying for a miracle.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    momsworld said:

    Hi PBJ Austin
    I wish I could get to MD Anderson, but we live to far away. I live in NH. We are going to go to Dana Farber/The jimmy Fund Clinic. We have left the other hosp that we were being treated at because I feel that they do not have enough experience in this type of cancer. Dana Farber is in Boston MA. They may tell us the same thing, but I can't just accept what DHMC has said to us. They were cold about it too. They looked at me and said " the pathology is back and the diagnosis is the same because it is almost impossible to read after radiation, might have gone up a grade but we do not know. Your child is going to die from this" Just like that. I went numb and said to myself there has to be something else. Anyway, we are not giving up yet. We have God on our side and are praying for a miracle.

    Still trying to get the hang of this network
    I cannot believe that I didn't see these posts a lot sooner. I don't know how I missed them. I wish I was responding in a more timely manner.

    Momsworld, I'd like to kick your doctors right in the butt. Our dr is cold that way too--he told us in a cold, factual way, totally devoid of emotion--almost inhuman. We were blown away and almost could not believe what he was saying because the words did not match his demeanor. I think that some of these drs have brilliant minds but are totally handicapped and retarded when it comes to people and their feelings. You have a battle ahead of you but please don't let your doctors rob you of hope. I have been browsing on this network, reading lots of accounts of people who have had doctors say stuff like that to them, and they have gone on and lived for a lot longer. They are still alive, in fact, since they were writing on this network. One person said that the drs told his/her parents that he/she was "terminal" but the parents didn't have the heart to tell their young child. The person said that if they had said that he/she was terminal, he/she would have probably given up and died. But instead he/she fought and is still alive today...many years later. I believe that one of the most important things we can do for our kids is to hold on to hope with them. How terrible would it be if no one believed with you that you had a chance to beat it? I always tell my son that I believe he is going to get married and have a family and wind up an old man. He had a lot of doubt at first, but now he believes it too.

    Waffles/Jenny....I am so grieved to her that your mom, Cindy, passed away. She left an amazing legacy...you, her brave daughter. I hope that her memory brings you strength and comfort. And I hope that I am to my son David, what your mom was to you. Not all people who are battling cancer have moms who stand in the gap and fight hard with them.

    David had his regular 3 month MRI and oncology appt. on Thursday 9/30 and I am very grateful to God that I can say there was no change and no tumor growth whatsoever. It's been a year and a half since diagnosis. We are staying on the same treatment protocol....Temodar for 5 days, then 3 weeks off. The dr is very pleased with David's status. I'm pretty sure that the dr is surprised that there is no visible tumor present. I hope and pray that we can continue to surprise him.

    Love and peace and blessings to you all,
    Cindy
  • tommybear
    tommybear Member Posts: 111
    momsworld said:

    Hi PBJ Austin
    I wish I could get to MD Anderson, but we live to far away. I live in NH. We are going to go to Dana Farber/The jimmy Fund Clinic. We have left the other hosp that we were being treated at because I feel that they do not have enough experience in this type of cancer. Dana Farber is in Boston MA. They may tell us the same thing, but I can't just accept what DHMC has said to us. They were cold about it too. They looked at me and said " the pathology is back and the diagnosis is the same because it is almost impossible to read after radiation, might have gone up a grade but we do not know. Your child is going to die from this" Just like that. I went numb and said to myself there has to be something else. Anyway, we are not giving up yet. We have God on our side and are praying for a miracle.

    Wow...
    I cannot believe that you were spoken to like that! That is the most inhumane thing!

    There is always hope, there are miracles, good things do happen. How sad for someone to actually be a doctor and respond to you like that.

    I had stereotactic radiosurgery in December 2009 and now am having some issues with swelling and the tumor appears to be enhanced, but my doctor said that is not abnormal. He told me that normally the swelling and fluid buildup will reduce within a few months - I am on steroids right now to help. So, yeah, it might not be possible to see exactly what is going on with the tumor right now, but that doesn't mean that it has been "upgraded".

    And, with your daughter being so young, I am sure that she has got to be so much healthier and energetic than some of us "old-timers" (I'm 39!)

    Wishing you peace and hope and encouragement....

    Michele S.
  • Carrie King
    Carrie King Member Posts: 48
    momsworld said:

    Hi PBJ Austin
    I wish I could get to MD Anderson, but we live to far away. I live in NH. We are going to go to Dana Farber/The jimmy Fund Clinic. We have left the other hosp that we were being treated at because I feel that they do not have enough experience in this type of cancer. Dana Farber is in Boston MA. They may tell us the same thing, but I can't just accept what DHMC has said to us. They were cold about it too. They looked at me and said " the pathology is back and the diagnosis is the same because it is almost impossible to read after radiation, might have gone up a grade but we do not know. Your child is going to die from this" Just like that. I went numb and said to myself there has to be something else. Anyway, we are not giving up yet. We have God on our side and are praying for a miracle.

    MomsWorld -- HOPE
    I wish I could say that I am shocked about the cold way you and your family were spoken to. We were told my husbands tumor was "in-operable" and we should "observe".

    I am here to tell you that 4.8cm tumor was reduced to 5mm and he has been back to work since Aug 11, 2010. No neuro deficits whatsoever. So much for "in-operable".

    God is the ultimate physician and healer.

    I pray for you all (I have a 12 yr old daughter also). I truly believe the patients attitude is 75% of the battle.

    Carrie
  • Hopekathy
    Hopekathy Member Posts: 4
    Diablita said:

    My AAIII
    I have an inoperable Anaplastic Astrocytoma Grade III, the doctors have already removed some of it and will try to remove a little bit more this month, but we are not sure yet, they'll try to do it with radiation and Chemo ( that's how they do it with other people )They say it works and we hope it will work with me ( actually that would be one of my only chances, since my tumor can't be removed with surgery ).

    my son was just diagnosed
    my son was just diagnosed with AA III but they were not able to remove it all. I noticed this was posted in May- how are you doing now?