anaplastic astrocytoma grade 3

momsworld
momsworld Member Posts: 135
edited March 2014 in Brain Cancer #1
Hi,
My daughter was diagnosed with AA3 in March 2010. She has had 2 brain surgeries to remove the tumor. The Dr's feel that they removed it all. Is there anyone out there who has been or is going through this with a family member or themselves? I've read alot of grim stories and I'm looking for something positive to help us get through this.
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Comments

  • NCAA XC
    NCAA XC Member Posts: 25
    Don't believe everything you read
    For the most part, all you will read are the dire things when you get on-line about this topic.
    It is important to read anything and everything you can, BUT, remember statistics mean nothing and all cases are different.

    Secondly, you'll learn that this indeed is a very small world and relating to my first point, I personally know two other GBM4 victims and one astrocytoma grade 3 victim.
    My wife is a GBM4. The two other GBM4's were much more profound and they unfortunately passed away.
    My wifes GBM4 was more localized, it was in the left frontal lobe and she had two craniotomies where they supposedly removed the entire tumor.
    She drives, goes to the store, shops on her own and her Karnofsky score is 90.
    The other two poor fellows although diagnosed with the same thing had a much more profound case...paralyzed limbs, seizures, tumor in a place that could not be operated on etc...

    So, you see ALL cases are different and don't get to down about the numbers.

    Do your research if you already have not done so..go to the best hospitals for the problem...don't stay anywhere that isn't associated with research or a university..and get a second opinion...don't let any doctor tell you that all oncologists will do the same thing and you don't need to go out of state where the best are and where they do this everyday etc....
    Of course that is why doing your homework is VITAL..just don't take the numbers as gospel.

    sorry for the rambling.

    P.S. The fellow with astocytoma cat3 sits right behind me here at work..He's the one that gave me the frantic phone call after my wife fell ill on August 26th 2009...and screamed in the phone GO TO MD ANDERSON!!!!!!
    He just celebrated his 10 year cancer free aniversary.
  • brettsmom
    brettsmom Member Posts: 1
    Anaplastic astrocytoma
    My son was fourteen when he was diagnosed, Aug 2008. He has had all the radiation and chemo available. His tumor is inoperable. He is doing really well still. Going to school. Getting all As. Got his class ring. Went to a school dance. Getting his driver's license. Had his first kiss. I try to be thankful for what we have been allowed to experience since this dreadful diagnosis. The doctors are very happy that he is doing so well. I know it is not forever, but there have been kids from his school pass away in car accidents, etc. so nothing is really forever. I would be happy to talk with you about the types of treatments, etc. I felt so negative when Brett was diagnosed, but he has been a real trooper throughout all of this!
  • Diablita
    Diablita Member Posts: 18
    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 ).
  • momsworld
    momsworld Member Posts: 135
    NCAA XC said:

    Don't believe everything you read
    For the most part, all you will read are the dire things when you get on-line about this topic.
    It is important to read anything and everything you can, BUT, remember statistics mean nothing and all cases are different.

    Secondly, you'll learn that this indeed is a very small world and relating to my first point, I personally know two other GBM4 victims and one astrocytoma grade 3 victim.
    My wife is a GBM4. The two other GBM4's were much more profound and they unfortunately passed away.
    My wifes GBM4 was more localized, it was in the left frontal lobe and she had two craniotomies where they supposedly removed the entire tumor.
    She drives, goes to the store, shops on her own and her Karnofsky score is 90.
    The other two poor fellows although diagnosed with the same thing had a much more profound case...paralyzed limbs, seizures, tumor in a place that could not be operated on etc...

    So, you see ALL cases are different and don't get to down about the numbers.

    Do your research if you already have not done so..go to the best hospitals for the problem...don't stay anywhere that isn't associated with research or a university..and get a second opinion...don't let any doctor tell you that all oncologists will do the same thing and you don't need to go out of state where the best are and where they do this everyday etc....
    Of course that is why doing your homework is VITAL..just don't take the numbers as gospel.

    sorry for the rambling.

    P.S. The fellow with astocytoma cat3 sits right behind me here at work..He's the one that gave me the frantic phone call after my wife fell ill on August 26th 2009...and screamed in the phone GO TO MD ANDERSON!!!!!!
    He just celebrated his 10 year cancer free aniversary.

    Thanks
    Thanks for your reply. I have been reading more positive stories about this as I search more. we are going to Dartmouth medical center in Lebanon, NH and we are very happy with them. We have had 3 different hospitals do pathology on my daughters tumor, DHMC in Lebanon,NH, Brigham and womans in Mass and Childrens hospital in Phili and all have come back the same. Her tumor was in her cerrebellum and was a mixed cancer. It had low-grade and high-grade, the Dr's said it was rare to see that and they also told us it is rare to see in a 12 year old. Fortunetly we had a great surgeon who truely feels that she removed it all. My daughter is having 7 weeks of radiation and is on oral chemo for 42 days. She will have 1 month off and start with a higher dose oral chemo, 5 days on and 23 days off for 12 cycles. I really hope that this works. She is my only child and I don't know what i would do without her. She is a strong girl and her spirits are high and I know that, that is the first part of recovery, a positive attitude. I pray alot. I hope I can be on here someday letting someone else struggling know that my daughter just celebrated her 10 year anniversry cancer free
  • momsworld
    momsworld Member Posts: 135
    brettsmom said:

    Anaplastic astrocytoma
    My son was fourteen when he was diagnosed, Aug 2008. He has had all the radiation and chemo available. His tumor is inoperable. He is doing really well still. Going to school. Getting all As. Got his class ring. Went to a school dance. Getting his driver's license. Had his first kiss. I try to be thankful for what we have been allowed to experience since this dreadful diagnosis. The doctors are very happy that he is doing so well. I know it is not forever, but there have been kids from his school pass away in car accidents, etc. so nothing is really forever. I would be happy to talk with you about the types of treatments, etc. I felt so negative when Brett was diagnosed, but he has been a real trooper throughout all of this!

    you are right
    You are right about that, I work with 2 different people that have lost their children, 1 to cancer and the other to a car accident so you never know. It's been very hard for me to accept the fact that I may out live her. That is not supposed to happen. I want her to have her first kiss and get her drivers license, I want her to fall in love and experience all the things in life that she should. I would love to keep in touch with you to see how things are going with your son. You have already been where we are now and it's comforting to know that we are not alone. Thanks Brettsmom. :)
  • momsworld
    momsworld Member Posts: 135
    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 ).

    I hope everything will work
    I hope everything will work out for you, can I ask how old you are? I hear that the radiation and chemo is the way to go. I have read stories of people only getting one or the other, but I believe both should be used at the same time. If you are over 18, I have read that MD Anderson Hosp uses accutane along with temador and radiation and that seems to work well. I have asked my daughters doctors about that, but the trial was done on adults and not children so they are not comfortable using it in our case, but it couldn't hurt to ask yours. What keeps me going mostly is that there are new drugs and/or treatments coming out everyday. I will pray for you and keep you in my thoughts. They can send robots to Mars to collect soil samples yet they can't cure cancer. Maybe they should take the money that the goverment spends on that and put it towards cancer research. Bet they would find a cure with that kind of money.
  • patriciam
    patriciam Member Posts: 39
    momsworld said:

    I hope everything will work
    I hope everything will work out for you, can I ask how old you are? I hear that the radiation and chemo is the way to go. I have read stories of people only getting one or the other, but I believe both should be used at the same time. If you are over 18, I have read that MD Anderson Hosp uses accutane along with temador and radiation and that seems to work well. I have asked my daughters doctors about that, but the trial was done on adults and not children so they are not comfortable using it in our case, but it couldn't hurt to ask yours. What keeps me going mostly is that there are new drugs and/or treatments coming out everyday. I will pray for you and keep you in my thoughts. They can send robots to Mars to collect soil samples yet they can't cure cancer. Maybe they should take the money that the goverment spends on that and put it towards cancer research. Bet they would find a cure with that kind of money.

    AA3
    My daughter was diagnosed Feb. 2009, AA3. She was 16, she had the standard treatment, oral chemo for 42 days, then every other month for a year. She also had 6 weeks of radiation treatments. She is doing well. She graduated from high school with honors and enrolled in community college. She was homebound from school for two semesters because she was missing too much school during raditaion treatments that those 42 days of chemo. I have faith she will do well, her tumor was removed too, all gone. She now has MRI's every three months.....from my heart to yours....a big hug for you from me.
    pm
  • momsworld
    momsworld Member Posts: 135
    patriciam said:

    AA3
    My daughter was diagnosed Feb. 2009, AA3. She was 16, she had the standard treatment, oral chemo for 42 days, then every other month for a year. She also had 6 weeks of radiation treatments. She is doing well. She graduated from high school with honors and enrolled in community college. She was homebound from school for two semesters because she was missing too much school during raditaion treatments that those 42 days of chemo. I have faith she will do well, her tumor was removed too, all gone. She now has MRI's every three months.....from my heart to yours....a big hug for you from me.
    pm

    your daughter is doing well?
    your daughter is doing well? Thats great. I need to hear these things, as you know it's hard to be strong sometimes. Where was your daughters tumor located? where did she go for her treatments? We live in NH and we go to Dartmouth Medical Center/ Norris cotton cancer center. We are lucky that we live only 1 hour away from the hospital, but the drive everyday is starting to wear on us. If you don't mind me asking?, what is the prognosis for your daughter? I don't usually talk religion to people but, I have alot of faith that God will take care of my daughter. And yours. What a crazy world huh? One minute you are living a normal and happy life and then all of a sudden, it's turned upside down and the future that you planned is so uncertain now. Thank You for sharing your story with me and I would love to keep in touch with you as we are sharing the same fears and concerns about our girls.
  • patriciam
    patriciam Member Posts: 39
    momsworld said:

    your daughter is doing well?
    your daughter is doing well? Thats great. I need to hear these things, as you know it's hard to be strong sometimes. Where was your daughters tumor located? where did she go for her treatments? We live in NH and we go to Dartmouth Medical Center/ Norris cotton cancer center. We are lucky that we live only 1 hour away from the hospital, but the drive everyday is starting to wear on us. If you don't mind me asking?, what is the prognosis for your daughter? I don't usually talk religion to people but, I have alot of faith that God will take care of my daughter. And yours. What a crazy world huh? One minute you are living a normal and happy life and then all of a sudden, it's turned upside down and the future that you planned is so uncertain now. Thank You for sharing your story with me and I would love to keep in touch with you as we are sharing the same fears and concerns about our girls.

    AA3
    I will be glad to communicate with you. Give me your email and I will email you.
    pm
  • momsworld
    momsworld Member Posts: 135
    patriciam said:

    AA3
    I will be glad to communicate with you. Give me your email and I will email you.
    pm

    do you know how I can send
    do you know how I can send you my email without posting it here? Or you can send me yours and I can email you. Tina
    p.s. Thanks
  • patriciam
    patriciam Member Posts: 39
    momsworld said:

    do you know how I can send
    do you know how I can send you my email without posting it here? Or you can send me yours and I can email you. Tina
    p.s. Thanks

    email
    HI Tina,
    Cancer sucks, right. I hate it. I created a new email so you can contact me. Email me at [email protected]

    Talk to you soon, hang in there.....I know it's hard on the heart....
    pat
  • PBJ Austin
    PBJ Austin Member Posts: 347
    patriciam said:

    email
    HI Tina,
    Cancer sucks, right. I hate it. I created a new email so you can contact me. Email me at [email protected]

    Talk to you soon, hang in there.....I know it's hard on the heart....
    pat

    Sending a private message
    Friends, there is a private message function on this board. Please click the CSN Email prompt on the left side of the page, it's in the shaded reddish area. You can find the poster you need and send a private message. I've only done this once, sorry if my instructions aren't so clear.
  • patriciam
    patriciam Member Posts: 39

    Sending a private message
    Friends, there is a private message function on this board. Please click the CSN Email prompt on the left side of the page, it's in the shaded reddish area. You can find the poster you need and send a private message. I've only done this once, sorry if my instructions aren't so clear.

    private message
    Thanks for the tip. I will give it a try.
  • sm1235
    sm1235 Member Posts: 1
    I was diagnosed March 2009.
    I was diagnosed March 2009. I had one surgery to remove the tumor. Luckily, I recovered 100%. Initially, I had motor function issues with my left hand. The radiation wasn't bad except for the hair loss, but it's finally coming back. The worst part is taking the Temodar for a year after radiation. At first I would take nausea pills, but soon discovered they were making me sicker than the Temodar. I am currently taking them once every four weeks for five days, 400 mg a night. I still make it to work everyday, but it's not easy. I was fortunate enough to see one of the best surgeons in the country at Vanderbilt. He did tell me before I left that there is a high rate of recurrence of the AA3..
  • momsworld
    momsworld Member Posts: 135
    sm1235 said:

    I was diagnosed March 2009.
    I was diagnosed March 2009. I had one surgery to remove the tumor. Luckily, I recovered 100%. Initially, I had motor function issues with my left hand. The radiation wasn't bad except for the hair loss, but it's finally coming back. The worst part is taking the Temodar for a year after radiation. At first I would take nausea pills, but soon discovered they were making me sicker than the Temodar. I am currently taking them once every four weeks for five days, 400 mg a night. I still make it to work everyday, but it's not easy. I was fortunate enough to see one of the best surgeons in the country at Vanderbilt. He did tell me before I left that there is a high rate of recurrence of the AA3..

    Hi sm1235, our doctors told
    Hi sm1235, our doctors told us that there was a significant chance of it coming back also, but I have not told my daughter that because she would give up hope and until her doctors tell me there is no hope she will not know. How far into your Temodar are you? Can you tell me where your tumor was located? The doctors said that she does have a chance at beating this because there were low and high grade cells through out the tumor which they say is rare to have both through out. I don't know. I have done some research online but it is very depressing and the thought of my only daughter, my only child dying makes me sick to my stomach. I will keep praying and believe that God will help in healing her.
  • PBJ Austin
    PBJ Austin Member Posts: 347
    momsworld said:

    Hi sm1235, our doctors told
    Hi sm1235, our doctors told us that there was a significant chance of it coming back also, but I have not told my daughter that because she would give up hope and until her doctors tell me there is no hope she will not know. How far into your Temodar are you? Can you tell me where your tumor was located? The doctors said that she does have a chance at beating this because there were low and high grade cells through out the tumor which they say is rare to have both through out. I don't know. I have done some research online but it is very depressing and the thought of my only daughter, my only child dying makes me sick to my stomach. I will keep praying and believe that God will help in healing her.

    Dont' google to much
    I know it's hard but please try to resist the temptation to google too much. A lot of what you will find on the internet is out of date. Please remember that new breakthroughs in cancer treatment are coming all the time and we must not give up hope for our loved ones, even if the doctors and web sites tell us otherwise. Back when my sister was diagnosed they were going to keep her on Temador for at least 2 years, but after just one year she doesn't need it and she has left the doctors at MD Anderson scratching their heads. Maybe the cancer will come back, maybe it won't. Personally I think those docs will be scratching their heads for some time to come.

    Hugs and prayers for you and your daughter.
  • momsworld
    momsworld Member Posts: 135

    Dont' google to much
    I know it's hard but please try to resist the temptation to google too much. A lot of what you will find on the internet is out of date. Please remember that new breakthroughs in cancer treatment are coming all the time and we must not give up hope for our loved ones, even if the doctors and web sites tell us otherwise. Back when my sister was diagnosed they were going to keep her on Temador for at least 2 years, but after just one year she doesn't need it and she has left the doctors at MD Anderson scratching their heads. Maybe the cancer will come back, maybe it won't. Personally I think those docs will be scratching their heads for some time to come.

    Hugs and prayers for you and your daughter.

    Thanks PBJ Austin
    You are

    Thanks PBJ Austin
    You are always so positive and I love that. Everytime I read one of your posts it always cheers me up. I try to stay positive most of the time, but sometimes it's hard. I believe that IF this comes back there will be something new out there whether its a new treatment or medication that will help her and everyone else who has to deal with this. I have just made a promise to myself that I will try to stay as positive as you. THANKS.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    momsworld said:

    Thanks PBJ Austin
    You are

    Thanks PBJ Austin
    You are always so positive and I love that. Everytime I read one of your posts it always cheers me up. I try to stay positive most of the time, but sometimes it's hard. I believe that IF this comes back there will be something new out there whether its a new treatment or medication that will help her and everyone else who has to deal with this. I have just made a promise to myself that I will try to stay as positive as you. THANKS.

    To momsworld
    Hi, Momsworld.

    I have a 26 year old son who was diagnosed with an anaplastic oligodendroglioma. I have 3 other children, and he's not exactly a child any more, but I know how you feel about the possibility of life without your child. He will always be my little boy. My heart goes out to you, and I am so sorry that you and your daughter have this road ahead of you. But there is hope!

    Here's our story: Out of nowhere, my perfectly fit, never sick, healthy son David started having migraines and then double vision in April of 2009. An MRI showed a mass in his brain. We were terrified. David had brain surgery on May 8th, and the surgeon said that they got 100% of his tumor. David's oncologist was quick to inform us that he is postive that there is still tumor there...in microscopic form. After David recovered from surgery (and after we got two more opinions regarding treatment protocols), he started radiation treatments with concurrent chemotherapy--Temodar. After six weeks of radiation and chemo,he started a much higher dose of Temodar--five days on, twenty-three off. He has an MRI every 3 months to see if a tumor is growing back.

    David's pathology report showed that his tumor did not have the gene deletion that would indicate more sensitivity to treatment. The doctors gave us such a poor prognosis. It's crazy...they stress how important a good attitude is and then they take away any hope. I am not exaggerating when I say that I cried every day for almost a full year. So here we are, over one year later. No sign of tumor growth. David is doing really, really good. He works part time, works out at the gym, does stuff with friends and family. He says that his short term memory isn't as good...big deal. Neither is mine. He does have headaches which terrified me at first, but a nurse told me that it takes a while to recover fully from brain surgery, and it seems reasonable to have headaches for a while after an ordeal like that. He gets sick from the chemo....stomach problems and nausea, insomnia and headaches, but he is learning how to cope with that. It's not pleasant, but it's so much better than other forms of chemo. Our oncologist says that David should stay on Temodar for as long as four years.

    When we go in for those 3 month MRIs and checkups, I feel like the oncologist and his staff are kind of surprised that they haven't found anything. I love surprising them.

    Please fight hard to hang on to hope. Don't let the statistics, the internet info, the doctors, etc. take your hope away. There are lots of people who are still going strong, who the doctors thought would not be around for very long. I just met an older guy at our last MRI appt. who was given 6 weeks to live....five years ago. He looked great. I have a good friend who was told to go home and get his affairs in order....that he had 6 months at the most. TEN YEARS later, he's still at our church, totally fine, going strong, with no sign of any cancer anywhere. He had pancreatic cancer, one of the very worst kinds to have. He told me that his doctor (a new one, not the one who said he had 6 months) said that there are a lot of people who the statistics show should be dead...and they did not die. And the doctors cannot say why....they just...didn't die.

    It's super hard, but as moms, we have to be so brave and so positive for our kids. I think it would be terrible to be a cancer patient trying to fight and not having anyone stand with you and believe with you that you can beat it. I do believe it can be beaten and I am committed to fighting and praying with every ounce of strength that I have in me.

    I pray all the time that God would do a miracle for David and heal him. I believe with all of my heart that God's hand is on David and that He is the One who is preseving David's life. I am grateful for the doctors and their knowledge and the chemo and all the treatments, but I know that it's God who is making the doctors and the chemo effective. In the meantime, I am taking it one day at a time and thanking God for each day, each moment, that we are given. It's a hard way to live, but it's okay.

    Love and blessings and peace to you,
    Cindy
  • momsworld
    momsworld Member Posts: 135

    To momsworld
    Hi, Momsworld.

    I have a 26 year old son who was diagnosed with an anaplastic oligodendroglioma. I have 3 other children, and he's not exactly a child any more, but I know how you feel about the possibility of life without your child. He will always be my little boy. My heart goes out to you, and I am so sorry that you and your daughter have this road ahead of you. But there is hope!

    Here's our story: Out of nowhere, my perfectly fit, never sick, healthy son David started having migraines and then double vision in April of 2009. An MRI showed a mass in his brain. We were terrified. David had brain surgery on May 8th, and the surgeon said that they got 100% of his tumor. David's oncologist was quick to inform us that he is postive that there is still tumor there...in microscopic form. After David recovered from surgery (and after we got two more opinions regarding treatment protocols), he started radiation treatments with concurrent chemotherapy--Temodar. After six weeks of radiation and chemo,he started a much higher dose of Temodar--five days on, twenty-three off. He has an MRI every 3 months to see if a tumor is growing back.

    David's pathology report showed that his tumor did not have the gene deletion that would indicate more sensitivity to treatment. The doctors gave us such a poor prognosis. It's crazy...they stress how important a good attitude is and then they take away any hope. I am not exaggerating when I say that I cried every day for almost a full year. So here we are, over one year later. No sign of tumor growth. David is doing really, really good. He works part time, works out at the gym, does stuff with friends and family. He says that his short term memory isn't as good...big deal. Neither is mine. He does have headaches which terrified me at first, but a nurse told me that it takes a while to recover fully from brain surgery, and it seems reasonable to have headaches for a while after an ordeal like that. He gets sick from the chemo....stomach problems and nausea, insomnia and headaches, but he is learning how to cope with that. It's not pleasant, but it's so much better than other forms of chemo. Our oncologist says that David should stay on Temodar for as long as four years.

    When we go in for those 3 month MRIs and checkups, I feel like the oncologist and his staff are kind of surprised that they haven't found anything. I love surprising them.

    Please fight hard to hang on to hope. Don't let the statistics, the internet info, the doctors, etc. take your hope away. There are lots of people who are still going strong, who the doctors thought would not be around for very long. I just met an older guy at our last MRI appt. who was given 6 weeks to live....five years ago. He looked great. I have a good friend who was told to go home and get his affairs in order....that he had 6 months at the most. TEN YEARS later, he's still at our church, totally fine, going strong, with no sign of any cancer anywhere. He had pancreatic cancer, one of the very worst kinds to have. He told me that his doctor (a new one, not the one who said he had 6 months) said that there are a lot of people who the statistics show should be dead...and they did not die. And the doctors cannot say why....they just...didn't die.

    It's super hard, but as moms, we have to be so brave and so positive for our kids. I think it would be terrible to be a cancer patient trying to fight and not having anyone stand with you and believe with you that you can beat it. I do believe it can be beaten and I am committed to fighting and praying with every ounce of strength that I have in me.

    I pray all the time that God would do a miracle for David and heal him. I believe with all of my heart that God's hand is on David and that He is the One who is preseving David's life. I am grateful for the doctors and their knowledge and the chemo and all the treatments, but I know that it's God who is making the doctors and the chemo effective. In the meantime, I am taking it one day at a time and thanking God for each day, each moment, that we are given. It's a hard way to live, but it's okay.

    Love and blessings and peace to you,
    Cindy

    Hi Cindy,
    Thanks for your

    Hi Cindy,
    Thanks for your story. I believe that it is hard for any parent no matter the age of thier child to go through something like this. However, I am surprised that his doctors want him on Temodar for 4 years. That seems like a long time. Where was his tumor located?
    our doctors gave us a poor prognosis also, but as I read and research more, I am finding more and more positive stories of people living longer that the statistics. Like you, I believe in the power of prayer and I believe that Gods hand is on my daughter also. Just a quick story about my daughters 1st surgery. Before her surgery we had a priest come and give her the anointing of the sick blessing, the surgery was supposed to take 4-5 hours and it took 8 hours. When she was brought to the PICU she was just starting to wake up. A few hours went by and she was talking and moving in her bed. The doctors told us that she would probably come out of surgery looking like she had a stroke, which would be temporary, but she was fine. My daughter had asked me why I was touching her head, I told her that I was not touching her head. She then asked me who it was that was touching her head, and I told her there wasn't anyone touching her head. I asked her why she was asking this question and she told me that she felt someones hands on her head. To me, it was Jesus touching her head and starting the healing process. I know that this may sound a little wierd, but there have been many little signs that are showing me that God is with her, with us. She just finished her radiation yesterday and in 1 month will start the

    stronger Temodar. Same as your son, 5 days on and 23 days off. She will be on that for 12 cycles(1year). I have faith that this will work. I have also been checking in to see if there are any clinical trials going on now and there is one at Mass General hospital. The trial is for children with brain tumors that the traditional treatment did not work. So we always have options if this awful thing comes back. Luckily, Mass General is only about 1 hour away from us. Thanks for listening. My thoughts and prayers are with your son and the rest of your family as well.
    Take care and God Bless
    Tina
  • PBJ Austin
    PBJ Austin Member Posts: 347
    momsworld said:

    Hi Cindy,
    Thanks for your

    Hi Cindy,
    Thanks for your story. I believe that it is hard for any parent no matter the age of thier child to go through something like this. However, I am surprised that his doctors want him on Temodar for 4 years. That seems like a long time. Where was his tumor located?
    our doctors gave us a poor prognosis also, but as I read and research more, I am finding more and more positive stories of people living longer that the statistics. Like you, I believe in the power of prayer and I believe that Gods hand is on my daughter also. Just a quick story about my daughters 1st surgery. Before her surgery we had a priest come and give her the anointing of the sick blessing, the surgery was supposed to take 4-5 hours and it took 8 hours. When she was brought to the PICU she was just starting to wake up. A few hours went by and she was talking and moving in her bed. The doctors told us that she would probably come out of surgery looking like she had a stroke, which would be temporary, but she was fine. My daughter had asked me why I was touching her head, I told her that I was not touching her head. She then asked me who it was that was touching her head, and I told her there wasn't anyone touching her head. I asked her why she was asking this question and she told me that she felt someones hands on her head. To me, it was Jesus touching her head and starting the healing process. I know that this may sound a little wierd, but there have been many little signs that are showing me that God is with her, with us. She just finished her radiation yesterday and in 1 month will start the

    stronger Temodar. Same as your son, 5 days on and 23 days off. She will be on that for 12 cycles(1year). I have faith that this will work. I have also been checking in to see if there are any clinical trials going on now and there is one at Mass General hospital. The trial is for children with brain tumors that the traditional treatment did not work. So we always have options if this awful thing comes back. Luckily, Mass General is only about 1 hour away from us. Thanks for listening. My thoughts and prayers are with your son and the rest of your family as well.
    Take care and God Bless
    Tina

    momsworld and cindysue
    momsworld, your kind words put tears in my eyes. This board has done so much for me I am overjoyed to have helped even one person.

    cindysue, HOORAY for David!! Your story is additoonal proof the docs, as great as they are, simply do not know everything. Stats mean nothing as we are all individual people. Your son is doing well, my sister is doing well, and I have faith momsworld's daughter will beat this too. Hugs and prayers to all.