Astrocytoma Grade III-Survivor

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  • momsworld
    momsworld Member Posts: 135
    katelynn said:

    survived for 10 years
    Hi! I had a grade three astro ten years ago. Alive and fine as can be. I'm forty and people think I'm thirty. I am writing a book about my dating escapades since moving to NYC 18 months ago. This is the first post I've ever written. I don't define myself as a brain cancer survivor. I just hang out in life and have a good time. I did leave my accounting job and it is great to have ssdi and the brain cancer thing is how I get the money to live my dream, which i will do!!!! and I have a lot of allergies, etc. But I would say get the best treatment possible and ignore the situation after that. My family mostly ignored the fact that I was sick, which I resented, until a friend who has mental illness said that she noticed that the kids whose parents visited them in the psych wards never got better. I also had another astro survivor telling me I would definitely live and that turned out to be true. I also have a small brain aneurysm and hell if I understand that but it's supposed to be not that dangerous and fairly simple to fix if it ever grows. Just go by the assumption she'll survive and live a long, very normal, maybe even exciting life! That's what I'd tell anyone. Treatment is not fun. I had a pretty yucky experience but that made me a philosopher so I'm sure the same will be true for your daughter! Ha!

    Hi There,
    I am so happy to

    Hi There,
    I am so happy to be reading more and more pos+ stories. My 12 year old daughter was diagnosed with anaplastic astrocytoma grade 1 and grade 3. The doctors say that it is rare to have such a mix of low and high grade cells through out the tumor. She has had 2 brain surgeries to remove the tumor which was located in her cerebellum. The surgeon said that the tumor looked like a low grade as it did not look much different than the normal brain tissue. After sending the tumor to 3 other hosp for 2nd, 3rd and 4th opinions they diagnosed her with AA3. I'm hoping that she has a better chance because of the mixed cells. Not as many high grade cells to kill. Unfortunetly they gave my daughter the same prognosis as everyone else. 35-40% chance of living 5 years. I refuse to believe that. She is doing so well. She just finished her first round of chemo and has 6 radiation treatments left. Then she will be on the higher dose of chemo for a year, 5 days on, 23 days off. The longer we can keep her tumor free the better the chances of a cure or a new drug that will help. We believe in the power of God and miracles do happen. I pray that God will heal my daughter. I'm just so happy to have read your story as even though I have faith, I also have my bad days and need something +pos. Thank You :)
  • PBJ Austin
    PBJ Austin Member Posts: 347
    momsworld said:

    Hi There,
    I am so happy to

    Hi There,
    I am so happy to be reading more and more pos+ stories. My 12 year old daughter was diagnosed with anaplastic astrocytoma grade 1 and grade 3. The doctors say that it is rare to have such a mix of low and high grade cells through out the tumor. She has had 2 brain surgeries to remove the tumor which was located in her cerebellum. The surgeon said that the tumor looked like a low grade as it did not look much different than the normal brain tissue. After sending the tumor to 3 other hosp for 2nd, 3rd and 4th opinions they diagnosed her with AA3. I'm hoping that she has a better chance because of the mixed cells. Not as many high grade cells to kill. Unfortunetly they gave my daughter the same prognosis as everyone else. 35-40% chance of living 5 years. I refuse to believe that. She is doing so well. She just finished her first round of chemo and has 6 radiation treatments left. Then she will be on the higher dose of chemo for a year, 5 days on, 23 days off. The longer we can keep her tumor free the better the chances of a cure or a new drug that will help. We believe in the power of God and miracles do happen. I pray that God will heal my daughter. I'm just so happy to have read your story as even though I have faith, I also have my bad days and need something +pos. Thank You :)

    Momsworld
    I know you've read my sister's story about her progress over the last year. We were told she has 3-7 years but she's not buying that and neither are we. My sister and I believe someday we will be old hags together. I will be a much older hag but at least we both will be old hags. LOL!! Keep the positive thoughts coming and remember that statistics mean nothing. She is an individual person and this experience is different for everyone. You and the rest of this board are in my heart and in my prayers.
  • momsworld
    momsworld Member Posts: 135

    Momsworld
    I know you've read my sister's story about her progress over the last year. We were told she has 3-7 years but she's not buying that and neither are we. My sister and I believe someday we will be old hags together. I will be a much older hag but at least we both will be old hags. LOL!! Keep the positive thoughts coming and remember that statistics mean nothing. She is an individual person and this experience is different for everyone. You and the rest of this board are in my heart and in my prayers.

    Thanks PBJ Austin
    Thanks PBJ Austin, I have been trying to keep up with your sisters story. I think that the doctors give the same statistics to everyone. My neighbor has stage 4 breast cancer which has moved into her bones now. She has had 3 rounds of chemo and several treatments of radiation. To her breast, to her spine. The doctors have told her that it was terminal. well guess what? it's been 7 years and she's still here. She is on a new clinical trial med but it seems to be working well for her. So you are right, Statistics mean nothing. I will pray for your sister and you as well. :)
  • Lenuzamdk
    Lenuzamdk Member Posts: 1
    Help
    Hi, Jose, I need help, please. We live in Brazil and my mom has Astrocytoma III. She was diagnosed september last years. She had 3 surgeries and radioteraphy. Now she is going to start taking temodar. What do you think about it? How did you get the cure? Thanks, God Bless You!
  • PBJ Austin
    PBJ Austin Member Posts: 347
    Lenuzamdk said:

    Help
    Hi, Jose, I need help, please. We live in Brazil and my mom has Astrocytoma III. She was diagnosed september last years. She had 3 surgeries and radioteraphy. Now she is going to start taking temodar. What do you think about it? How did you get the cure? Thanks, God Bless You!

    Temador
    Lenuzamdk, my sister took Temador and that combined with radition worked well for her for her AA3. The radiation was tough but it only lasted 6 weeks. She had very few side effects from temador except being tired. In less than a year my sister's cancer is no longer visible on MRI's. That doesn't mean it's gone forever, that is never a guarantee with cancer. But for now it is not visible so we are celebrating. I am no expert but I believe temador must be an excellent treatment.

    Good luck, I wish the best for your mom.
  • ab293
    ab293 Member Posts: 1

    Temador
    Lenuzamdk, my sister took Temador and that combined with radition worked well for her for her AA3. The radiation was tough but it only lasted 6 weeks. She had very few side effects from temador except being tired. In less than a year my sister's cancer is no longer visible on MRI's. That doesn't mean it's gone forever, that is never a guarantee with cancer. But for now it is not visible so we are celebrating. I am no expert but I believe temador must be an excellent treatment.

    Good luck, I wish the best for your mom.

    Temador/ Radiation
    My 44 year old mother was diagnosed with astrocytoma grade III in March and had surgery to remove 80 percent of it. She has undergone six weeks of radiation that was supposed to be coupled with temador. However, her platelet counts were dropping very low so she missed a week or two of chemo and has been receiving platelet transfusions, as well as a shot to boost cell production. Has anyone had these difficulties during chemo? Also, her radiation was targetting the front of her head so she has lost all her hair in these areas. Some say that it is possible the hair will not grow back at all. Has anyone lost hair and had it grow back after radiation? She is getting quite worried about not having hair anymore. Thank you.
  • patriciam
    patriciam Member Posts: 39
    ab293 said:

    Temador/ Radiation
    My 44 year old mother was diagnosed with astrocytoma grade III in March and had surgery to remove 80 percent of it. She has undergone six weeks of radiation that was supposed to be coupled with temador. However, her platelet counts were dropping very low so she missed a week or two of chemo and has been receiving platelet transfusions, as well as a shot to boost cell production. Has anyone had these difficulties during chemo? Also, her radiation was targetting the front of her head so she has lost all her hair in these areas. Some say that it is possible the hair will not grow back at all. Has anyone lost hair and had it grow back after radiation? She is getting quite worried about not having hair anymore. Thank you.

    AA3 / Radiation treatments
    Hi ab293.
    Yes, the hair grows back. My daughter lost patches on her head during treatment, but it grew back. She was on temador during treatment and was low in her blood counts too, and had to skip a few weeks before starting again, but she never needed transfusions.
    Good luck to you and your mom.
  • tusya7823
    tusya7823 Member Posts: 2
    katelynn said:

    survived for 10 years
    Hi! I had a grade three astro ten years ago. Alive and fine as can be. I'm forty and people think I'm thirty. I am writing a book about my dating escapades since moving to NYC 18 months ago. This is the first post I've ever written. I don't define myself as a brain cancer survivor. I just hang out in life and have a good time. I did leave my accounting job and it is great to have ssdi and the brain cancer thing is how I get the money to live my dream, which i will do!!!! and I have a lot of allergies, etc. But I would say get the best treatment possible and ignore the situation after that. My family mostly ignored the fact that I was sick, which I resented, until a friend who has mental illness said that she noticed that the kids whose parents visited them in the psych wards never got better. I also had another astro survivor telling me I would definitely live and that turned out to be true. I also have a small brain aneurysm and hell if I understand that but it's supposed to be not that dangerous and fairly simple to fix if it ever grows. Just go by the assumption she'll survive and live a long, very normal, maybe even exciting life! That's what I'd tell anyone. Treatment is not fun. I had a pretty yucky experience but that made me a philosopher so I'm sure the same will be true for your daughter! Ha!

    So happy to have found this
    So happy to have found this blog and see so many survivors. I have a diffuse astrocytoma grade 2 in my brain stem and growing to the left lobe so my right side is affected. Trying to cope with that, don't know what to expect... Haven't undergone any treatment yet. And surgery is impossible. Is there anybody with similar conditions?
  • tommybear
    tommybear Member Posts: 111
    tusya7823 said:

    So happy to have found this
    So happy to have found this blog and see so many survivors. I have a diffuse astrocytoma grade 2 in my brain stem and growing to the left lobe so my right side is affected. Trying to cope with that, don't know what to expect... Haven't undergone any treatment yet. And surgery is impossible. Is there anybody with similar conditions?

    Hi there....
    I have a grade II astrocytoma in my left temporal lobe...wasn't specified whether it was a diffuse or not, but from the description, I believe that is what it is. I also have issues on my right side, among some other things.

    I did have a partial ressection in August of last year and stereotactic radiosurgery in December. The doctor was only able to remove about 25% of the tumor during surgery - so it was really just a biopsy, and was told that the tumor has extensions that are unable to be removed because it is reaching into healthy brain tissue. Was told that the stereotactic radiation could take a year or more to make any difference, and the tumor has not changed over the last six months. From what I have read and heard, chemo doesn't have much affect on stage II tumors. So, now I just have to wait and see if the radiation has done anything. My doctor seemed pleased that the tumor has not grown, but I am not real pleased that it hasn't shrunk either.

    It is difficult coping with having a brain tumor. I don't always communicate with other survivors, but do read the discussions....This is a good place to be....

    Take care,

    Michele Stevens
  • green_carbon07
    green_carbon07 Member Posts: 3

    Hospitals, doctors please...
    Hello Quilmes, Hello Everyone,

    I am from Asia. My fiance has been diagnosed of Grade 3 Astrocytoma last January 2009. He underwent operation February this year to remove the tumor. However, it was unsuccessful. It was the doctor's fault...

    We are planning to go to the US (or to wherever country) to have his medication. Can you suggest a good hospital or doctor? Please recommend...

    I would appreciate your replies....

    I have been reading posts in this website, and finally decided to be a member. I see hope by reading your posts. I hope you could help us...by suggesting, or by prayers...

    Thank you,

    Angela

    Angela, not sure if you are still looking, but...

    My 23 year old fiance was diagnosed with a Grade 3 Oligoastrocytoma in December 2008, and his operation was successful. Our surgeon was Dr. Wade Mueller at Froedtert Hospital in Milwaukee, WI, USA, which is associated with the Medical College of Wisconsin. Dr. Mueller did a fantastic job, as did the neuro-oncology and radiology staff. They continue to take good care of my fiance.
  • green_carbon07
    green_carbon07 Member Posts: 3
    ab293 said:

    Temador/ Radiation
    My 44 year old mother was diagnosed with astrocytoma grade III in March and had surgery to remove 80 percent of it. She has undergone six weeks of radiation that was supposed to be coupled with temador. However, her platelet counts were dropping very low so she missed a week or two of chemo and has been receiving platelet transfusions, as well as a shot to boost cell production. Has anyone had these difficulties during chemo? Also, her radiation was targetting the front of her head so she has lost all her hair in these areas. Some say that it is possible the hair will not grow back at all. Has anyone lost hair and had it grow back after radiation? She is getting quite worried about not having hair anymore. Thank you.

    My 23 year old fiance had hair loss when he received targeted radiation along with Temodar, but the hair did grow back, and quite thickly! The only place where he still has a patch that is a little thin is the area where they had to place the drainage tube during surgery, in the back of his head. It took a little while, but it did come back in less than a year. I hope your mother does well!
  • jady
    jady Member Posts: 1
    MY BEST FRIEND
    My best friend has astrocytoma grade 4 and i was just wondering what treatment anyones has had or wheather you no ov any treatments that might help her she has already had radiotherapy last june and she had it debloked in may and now on her second lot ov kimo now we will find out in 2 weeks weather the kimo has work as all the others havent i would be really gratfull if you no ov antthing 2 help us many thanks jady xx
  • lmars
    lmars Member Posts: 1
    lawslegal said:

    My son is recovering from an astrocytoma
    Hi, I am happy that your daughter is doing well.

    Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

    I wish your daughter and your family the best.

    Sincerely, Laura, Michael's Mom

    My son and relapes
    Laura,

    My son was diagnosed with stage III /giloblastoma. He enjoyed 3 years of stability. Can you tell me if your son had any relapes. Charlie had 2 resection back to back and then a shunt put in. He had radiation /chemo / temadar. He suffers from poor vision and cognative effects. I really am trying to find people who have had relapes.

    Linda
  • dc9md80
    dc9md80 Member Posts: 4
    kmd1019 said:

    Astrocytoma
    Jose,

    This friday it will be 4 weeks since my 90% resection of my Astrocytoma Tumor. Yesterday I met with the Oncologist to get the next step. I found out that the next step will be 6 weeks of radiation and chemotherapy. I am trying to be strong and not doubt. Everyday I wake up and say that I am going to beat this thing.
    I am 28 years old and my husband and I just celebrated our 6th wedding anniversary on the 19th.
    What lead you to your tumor discovery? How did you cope with the times of doubt? My surgeon has been amazingly positive so I try to cling to that, but still get discouraged.
    I pray that all is still well with you, and if you could please fill me in on your journey.

    Thank You,
    Kara

    Hang in there
    My husband was 35 when he was diagnosed and he is a 21 year survivor! He believed from the start that he could beat the cancer and he did, with a lot of prayers and great medical care. Not to say it has been all a picnic, there have been rough spots, especially now as he gets older. His neurosurgeon once told him that his brain age is about 15 years older than his real age because of the radiation. So that presents challenges, but he was able to see both of his children grow up, attend college, marry and have their own families. It can definately be done! He had a grade 3 Astrocytoma.
  • rokaren5
    rokaren5 Member Posts: 14
    I'm new here
    Hi Jose,
    I'll just give you a quick rundown of my situation, but it sure would be nice to have someone to ask questions to as I walk this road.

    In 2007 I had some really mild "zone out" type activity. It only happened a couple of times and then went away. When I mentioned it to the doc he said, "If it comes back we have to look into it". Well in April of 2010 they came back. It only happened 3 times in 1 week and went away. Friends & family said, "Just go get it checked." and so I did. I aced the physical exam. I showed absolutely no physical indicators. My neurologist said, "I fully expect to see a normal brain." Well the MRI was abnormal.
    I was diagnosed with level III glioma. I don't have a well defined "tumor" It's more like a "star field" ..... just random abnormal cells throughout the brain. It's mostly in the right temporal lobe, but the cells are really scattered throughout the brain.
    I had surgery on 8/6. She took out some of the right temporal lobe and did a resectioning.
    I just finished week 2 of radiation & chemo (temodar). We're fighting it like a level 4.

    I am getting hit pretty hard with some side effects of the chemo. I deal with some excruciation back pain, but I have a massager that I lay on for a long time and it loosens me up. I'm wondering if I should ask the doc for some muscle relaxers because truly I'm just so tight when the pain comes on. It feels like a heart attack. Had that all checked out. Heart's good.
    I'm getting regular massages, but it's obvious that this back pain comes with the chemo.
    I also have a really itchy rash mostly on my arms but it's on my torso & legs too. I'm using a calendula cream non stop and it helps. It's just frustrating.

    But here's the deal: I get it. This is my life. I have a brain tumor. And I'm going to live with it. Like my husband with his heart issues I will have to chase this tumor and keep it under control. But I'm gonna live.....a long long time. I just think of my tumor like a person who is fighting any condition.... diabetes, heart disease.

    Am I crazy? I still show no physical effects of the tumor. Now it's all side effects and meds. My radiation oncologist & my surgeon both believe that I will return to work when the 6 week rotation is over. I work in live TV in NY, and I do have EVERY intention of returning to my crazy live show.
    After the 6 week rotation I'll take a few weeks off to recover then I'm going do a double dose of chemo for 5 days. That we'll repeat every month for 6 months.
    I would really love to hear some input from someone who is much farther along living with this disease.
    Thank you so much,
    Karen
  • Woodsymom
    Woodsymom Member Posts: 13
    Grade III: Anaplastic Oligogendroglioma
    My son was diagnosed in June/2010. He has undergone a Craniotomy at the temporal lobe July 16, 2010. He got married 8/14, 2010. Now we are preparing for Radiation Therapy with our first appt on 9/7/10.

    Astrocytoma, as I understand it is a very aggressive cancer as well. We are approaching radiation with the hope that it will put the tumor to sleep. Hopefully, chemo will not be necessary right away. We have heard you do not want to use everything at once because it limits your options later.

    What was your strategy for success?

    Thanks for any and all info you provide.
    Woodsymom
  • Woodsymom
    Woodsymom Member Posts: 13
    rokaren5 said:

    I'm new here
    Hi Jose,
    I'll just give you a quick rundown of my situation, but it sure would be nice to have someone to ask questions to as I walk this road.

    In 2007 I had some really mild "zone out" type activity. It only happened a couple of times and then went away. When I mentioned it to the doc he said, "If it comes back we have to look into it". Well in April of 2010 they came back. It only happened 3 times in 1 week and went away. Friends & family said, "Just go get it checked." and so I did. I aced the physical exam. I showed absolutely no physical indicators. My neurologist said, "I fully expect to see a normal brain." Well the MRI was abnormal.
    I was diagnosed with level III glioma. I don't have a well defined "tumor" It's more like a "star field" ..... just random abnormal cells throughout the brain. It's mostly in the right temporal lobe, but the cells are really scattered throughout the brain.
    I had surgery on 8/6. She took out some of the right temporal lobe and did a resectioning.
    I just finished week 2 of radiation & chemo (temodar). We're fighting it like a level 4.

    I am getting hit pretty hard with some side effects of the chemo. I deal with some excruciation back pain, but I have a massager that I lay on for a long time and it loosens me up. I'm wondering if I should ask the doc for some muscle relaxers because truly I'm just so tight when the pain comes on. It feels like a heart attack. Had that all checked out. Heart's good.
    I'm getting regular massages, but it's obvious that this back pain comes with the chemo.
    I also have a really itchy rash mostly on my arms but it's on my torso & legs too. I'm using a calendula cream non stop and it helps. It's just frustrating.

    But here's the deal: I get it. This is my life. I have a brain tumor. And I'm going to live with it. Like my husband with his heart issues I will have to chase this tumor and keep it under control. But I'm gonna live.....a long long time. I just think of my tumor like a person who is fighting any condition.... diabetes, heart disease.

    Am I crazy? I still show no physical effects of the tumor. Now it's all side effects and meds. My radiation oncologist & my surgeon both believe that I will return to work when the 6 week rotation is over. I work in live TV in NY, and I do have EVERY intention of returning to my crazy live show.
    After the 6 week rotation I'll take a few weeks off to recover then I'm going do a double dose of chemo for 5 days. That we'll repeat every month for 6 months.
    I would really love to hear some input from someone who is much farther along living with this disease.
    Thank you so much,
    Karen

    Grade III: Anaplastic Oligogendroglioma
    My 26 year old son has been diagnosed in June/2010. Graduated from college June/2010. Craniotomy/temporal lobe July/2010.Some aphasia but recovered. Short-term memory is poor but manageable. Married August 14, 2010. We are beginning radiation 9/7/2010. No chemo yet.

    It sounds like you, in that he really had no symptoms except something that appeared like anxiety attacks, was treated with anxiety medication but when they increased in frequency an MRI was done and it was determined that what he was having was focal seizures due to a tumor. Medicine has them under control as well as the removal of 95% of the tumor with 'tentacles' still in his other parts of brain. That is where the focus of radiation will be.

    He has returned to his part-time job but is wanting to get radiation over with so he can begin a search for a 'real job' and support his new wife. Told to increase calcium because radiation can cause thinning of the bones. Fatigue and some hair loss will be a side effect.
    We are not sure what to expect except the provision of God's grace every day. Because he is only 26, we have been told this is very unusual sooooo......besides putting on weight, from the steroids used to reduce swelling. He is back to fairly normal activity. Maybe we can travel the path together and compare notes?
  • Fusionera
    Fusionera Member Posts: 10
    Woodsymom said:

    Grade III: Anaplastic Oligogendroglioma
    My son was diagnosed in June/2010. He has undergone a Craniotomy at the temporal lobe July 16, 2010. He got married 8/14, 2010. Now we are preparing for Radiation Therapy with our first appt on 9/7/10.

    Astrocytoma, as I understand it is a very aggressive cancer as well. We are approaching radiation with the hope that it will put the tumor to sleep. Hopefully, chemo will not be necessary right away. We have heard you do not want to use everything at once because it limits your options later.

    What was your strategy for success?

    Thanks for any and all info you provide.
    Woodsymom

    To Woodysmom re Anaplastic Oligodendroglioma
    Dear Woodysmom,

    I would not delay the chemo at all, especially if he can start Temodar. This is NOT something to fool with, as I know from personal experience. After I finished radiation therapy, my grade III appeared to be gone. I was put on PCV chemo as a "preventative measure" since the tumor bed looked clear on the MRI at the end of 1995. Within 2 months the MRI had changed and in April of 1996 I had a second surgery. I was then put into the Temozolomide clinical trial. The drug saved my life. The radiation only temporarily held the tumor at bay...Grade IIIs are best treated as aggressively as possible.

    Talk to his doctor about the options available. Everyone reacts differently to different therapies, and some are effective on some people and not on others. Best of luck to you.

    Johanna
  • Toshy
    Toshy Member Posts: 24
    30 + years!
    Adding my support and encouragement :)

    I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem (Astrocytoma on floor of 4th ventricle). I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

    I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!
  • BOSBEK
    BOSBEK Member Posts: 4
    Grade III Astrocytoma
    I am grateful to know that you are a ten year survivor! My Husband was just diagnosed and has had a crainiotomy with patial tumor rsection. Hi stumor is in the temporal and frontal lobes and was the size of golfball. He origionally presented with only having his strange flowery smell fom whch he could not escape. After undergoing ebery test or cardiac issues in the ER he was finally given an EEG which showed abnormal spikes in the frontal lobe. From there we have gone to MRI, diagnosis (Anaplastic Astrocytoma III). He is now in his third week of radiation along with Temodar. This is quite the journey! Would love to hear from those oing through this as well.