Astrocytoma Grade III-Survivor

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  • Finnegans Mom
    Finnegans Mom Member Posts: 12

    How are you doing?
    Hi, Nicky.

    I was looking through these older posts and I saw yours and I wondered how you and your little boy were doing. I hope that he is recovering and that things are looking better for him and for you. Please, if you get a chance, could you let me know how he is doing?

    Love and blessings,
    Cindy

    Finnegan's tumor has grown:(
    Hi Cindy,
    I'm not sure how often you check this. Finn had his third surgery in the end of Feb and after 3 surgeries they removed almost 90% of the tumor. The rest was wrapped around veins. He got a blood clot in his brain due to this surgery and has been on blood thinners since. They were holding off on chemo becuase he was on the blood thinners. His MRI in June showed tumor growth for the first time since we started all of this. We had 3 rounds of chemo and then another MRI. This past Monday we found out terrible news. The tumor is almost as big as when we started. Our doctors told us there is nothing else they can do for him. We are not giving up. Finn's info has been sent to 13 hospitals and 1 alternative center called Envita in Arizona. He is having accupuncture. I contacted a priest who has been known to make miracles happen. If you know anything at all that could help, please let me know. How is your son doing?

    Nicole Mondroski
  • CoreyandIvy
    CoreyandIvy Member Posts: 3
    Grade 2-3 Astro
    Howdy, My Wife Ivy had a Grande Mal in July 2011 , Biopsy in August, suspected grade 3 Glioma. Surgery Nov 4th 2011 and diagnosed grade 2 Glioma, oligoastrocytoma. She went from Dilatin to Tegratol. She remains REALY sore ribs, back kidneys still possibly from the july Grande Mal?? But reallY POSITIVE, and enjoys life. No other treatment to date. Holding off on Radiation for now, untill we hear more examples, although the docs recommend it, it grew 25% since March MRI. Anyone heard of the Photon Genie? or Maple syrop and Baking Soda?
    Corey, and Ivy from BC Canada
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    Finnegan's tumor has grown:(
    Hi Cindy,
    I'm not sure how often you check this. Finn had his third surgery in the end of Feb and after 3 surgeries they removed almost 90% of the tumor. The rest was wrapped around veins. He got a blood clot in his brain due to this surgery and has been on blood thinners since. They were holding off on chemo becuase he was on the blood thinners. His MRI in June showed tumor growth for the first time since we started all of this. We had 3 rounds of chemo and then another MRI. This past Monday we found out terrible news. The tumor is almost as big as when we started. Our doctors told us there is nothing else they can do for him. We are not giving up. Finn's info has been sent to 13 hospitals and 1 alternative center called Envita in Arizona. He is having accupuncture. I contacted a priest who has been known to make miracles happen. If you know anything at all that could help, please let me know. How is your son doing?

    Nicole Mondroski

    Hello
    Hi, Nicole.

    I'm sorry I haven't responded sooner. I haven't been checking csn like I used to do, and I started posting more on the caretakers and the grief and bereavement boards.

    I was so saddened and so heartsick to read about what you and your little boy have been going through. And after fighting so hard, to get such terrible news....I hate how much pain you must be in. I'm very glad that you are not giving up and that you have been trying other places. I hope that several of them can offer you some options. I will be praying for you and for Finnegan.

    Thank you for asking about David. How I wish I could give you a good report, but I can't. He's home with us, on hospice now. He can't move anything except his right hand, and he can barely do that. He's totally bedridden---can't even sit in a wheelchair any more, can't eat--- he had to have a tube put directly into his stomach for food, water, and medicines. He's totally incontinent. He can't talk or even shake or nod his head now. But I think he can understand us. He seems to be pretty aware of things, and he's very sensitive to people's emotions. I've had tears in my eyes a few times in front of him, and he stared intently at me. He seems to be interested when he has company, and when I show him pictures. We have been able to keep his pain under control, and I'm very grateful for that.

    The doctors said it's hard to know how much time he has left. Because he's young, he could linger on like this for a long item. But he could also have a catastrophic event, like a stroke, seizure, blood clot, and it could be over instantly. I am living one day at a time, and I try not to think of what tomorrow may hold for us.

    I don't know of anything to tell you to try to help you--but I want to encourage you to keep on fighting like you are doing. And I'd like to suggest that you contact NIH in Maryland. They were so good to us, and they paid for everything. Even our cross country plane fares, hotels, and a food allowance. For both me and David. They might have a clinical trial that could help your little boy. (NIH is the National Institutes of Health.)

    I cry so much, and in my heart, I cry out, "My baby, God! My baby!" David is 29, but in my mother's heart, he's still my baby, my son that I love with all of my being. When I think of how little your baby is, and how you can't even tell him why you are doing the things that you have to do, I can't imagine how much your heart must be broken. I will keep praying for you and for Finnegan.

    Love and blessings,
    Cindy
  • maggie65
    maggie65 Member Posts: 4
    Inoperable Anaplastic Astrocytoma Grade 3

    Jose, I write to you in hopes your still a survivor of anaplastic astrocytoma grade 3 and can somehow help us shed some light to this nightmare we have been enduring since October last year, well to begin my husband and I both first true love since the ages 14 and 13 years old we both each had children in our previous marriages and divorced we just had celebrated our 2nd anniversary in October 13, 2012, my husband was diagnosed with a brain tumor October 25, 2012 just bearly a week later this brain tumor is called Anaplastic Astrocytoma Grade 3 after he left home to work plumbing in the city that never sleeps Manhattan the big apple felt what is called a charlie horse on his left leg as he drove his company vehicle truck the charlie horse quickly shot up his left side causing several seizures he was rushed by ambulance to The New York Presbyterian Cornell Hospital located on E. 68th Street near York Av four blocks from Hunter College, we have'nt had a piece of mind since nor any days of rest since this began, I been by my husband hospital bed side since this began spending 18 days, 7 days, 5 days, 4 days and most recently 12 days and then rehab in Baker Pavilion 17 floor at NYPCH we where told beforehand that my husband had a fighting chance being he was young, healthy and strong, didnt have any bad habits as he quit smoking cold turkey but after spinal tabs, blood analysis, MRI's CT Sacns. sonograms clinical trails of 30 days of radiation and 45 days of chemo therapy pills called temodar it has been a roller coaster ride to hell for us because let me say since the tumor we where told so many positives options then suddenly his tumor which is inoperable we where told has rapidly grown and he is now experiencing alot of dificulty spasms to his left arm, pain feeling sunburn sensation to his face, arm and leg, his allegic to morphine so his given all kinds and  types of pain nacotics medications to somehow ease his pain but this is causing him problems with bowel movments constipation and he takes nerve muscle relaxer, along with steroids and insuline as his blood glugose rise due to the intake of steroids. My husband is only 45 years old and because he married late in his 30's he has a son of 11 years old and a daughter only 10. I just became a grandmother, I have two sons and would love if my husband can recover from this illness and we can live at piece but thats just my faith and hope which I pray each day while in tears. I hope for a miracle and Im sure many on this broad will agree for their love ones to be cured. God bless those who are going through this hurtle of difficulties and somehow have lived to talk about it. Please if anyone else here has experience a miracle to this horrible disease please kindly share as we all here need some hope of faith. Take care

  • BenLenBo
    BenLenBo Member Posts: 145
    Hello,
       I just read your

    Hello,

       I just read your story, my heart goes out to you all.  In reading about your husbands condition, I was wondering

    have you gotten a second opinion, from say John Hopkins, being you are so close.  My son, was diagnoised with

    Oli Grade III, left frontal lobe, 1p19q deletions and 99% of his tumor removed.  6 weeks radiaton, along with

    chemo at the same time.  Benjamin, has had no side effects from any of the treatment.  An has been Cancer

    free since 9/2011.  When initial chemo, radiation was completed, he started a 6 month of a higher dose.  Still,

    no side effects, doctor had him take anti-nausea pill one hour before Temodor and do this at bedtime.  His story is

    on this site if you want to follow.  Benjamin suffered a severe headached, and then a grand mal seizure in the

    the emergency room.   He was in surgery right away, doctors from Mayo removed 99%, sent sample tissue

    to Mayo, John Hopkins, and he is being treated at Roger Maris Cancer Center.  They all have been wonderful

    to work with, but he also, had three major facilities working together.  Second opinions are not bad, just

    comforting.  Remember to stay strong and fight with everything you have.  This site is great for helping one

    understand what is happening and where you may be headed in the future.

    (((Hugs)))

    Carol

  • amyd47
    amyd47 Member Posts: 7
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    yes I have

    I've woken in the middle of the night and remember just kinda my thought process at the time....: "Whats going on, what is this..? sleep!? ok so im awake now, what do I do? is there something Im supposed to do? aahhh wait this is fimiliar,...i know this feeling??"  I hope this explains it, I know it makes close to NO sense but I try. Other than that I've had issues where Im talking to someone and take maybe a drink of something but by the time I attempt to finish the story/explination etc Its just gone.

  • amyd47
    amyd47 Member Posts: 7
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    yes I have

    I've woken in the middle of the night and remember just kinda my thought process at the time....: "Whats going on, what is this..? sleep!? ok so im awake now, what do I do? is there something Im supposed to do? aahhh wait this is fimiliar,...i know this feeling??"  I hope this explains it, I know it makes close to NO sense but I try. Other than that I've had issues where Im talking to someone and take maybe a drink of something but by the time I attempt to finish the story/explination etc Its just gone.

  • amyd47
    amyd47 Member Posts: 7
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    yes I have

    I've woken in the middle of the night and remember just kinda my thought process at the time....: "Whats going on, what is this..? sleep!? ok so im awake now, what do I do? is there something Im supposed to do? aahhh wait this is fimiliar,...i know this feeling??"  I hope this explains it, I know it makes close to NO sense but I try. Other than that I've had issues where Im talking to someone and take maybe a drink of something but by the time I attempt to finish the story/explination etc Its just gone.

  • amyd47
    amyd47 Member Posts: 7
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    Me Too!

    I am just finishing radiation and chemo..same location, left frontal lobe. What was your treatment and treatment results like?

  • amyd47
    amyd47 Member Posts: 7

    chemo drugs?
    Hi Chicken2799:

    My daughter is currently completing the chemo phase for her Anaplastic Astrocytoma. She also had surgery and radiation. Do you mind telling me what drugs you took? Did you have a port? Sarah is doing Irinetecan and Avastin 2x a month via infusion. Then on the beginning of her last infusion for the month she takes Temodar for five days. Her main neuro-oncologist wanted to stop the Temodar because she gets so sick from it. It seems like I read other people blogging that it works though. Did you take Temodar? I am happy for you and your family. God Bless you. Thanks for sharing.

    Edna

    Im Not sure if this helps...

    I have AA3 (left frontal lobe).. just finished with my 6week radiation and chemo treatment on 26mar 2013. The chemo I took was Temodar. I just started taking it again yesterday (120mg) for 5 more radiation treatments im getting on a different machine. It does "floor" me me too. I feel very neasous and drained the whole time and have little to no appitite. I dont have a port or anything like that. I take it now at 8pm everyday and I sleep through most of the "yuckness". What I am hoping helps is that I take 8mg of Ondansetron (zofran whichever you know it by) and it does help me ALOT!

  • amyd47
    amyd47 Member Posts: 7
    corry1964 said:

    AA3 Survivor
    Your story sounds exactly like mine. I was diagnosed with a brain tumor in October 2007. My Dr. believed it was a low grade tumor. It was located on my right frontal lobe. I chose to have surgery a soon as possible. October 31, 2007 I had the tumor removed and a week passed and the day I got my staples out the Dr. called me with the news. Grade 3 Anaplastic Astrocytoma. I had 42 radiation treatments and approx. 12 weeks of chemo (Temodar)All my MRI's since have shown all clear. I can relate to the kaleidoscope vision you had. It was so hard to explain the sensation I was feeling. I had that symptom for many years before I finally tried to explain it to my wife or Dr. It would happen when I was trying to focus on a conversations with a client, converstions with my wife. It just kept happening more and more frequent. It also happened while I was driving. I have explained it as tunnel vision, I was able to function, and I knew it would stop in a few seconds. My doctor said I was having mild seizures. I had major neck pain, muscles knotting up, constant trips to the chiropractor, which didn't help. I have made several bad decisions over the last several years which resulted in divorce and alienation from my children. I remarried 1 year before my diagnosis, and my life could not be better. All things happen for a reason and I see why I went through what I did. I am a better man today because of my cancer. I wouldn't trade my experience for anything. I have not seen my son since he was 12 and he is now 20. I am however walking my beautiful daughter down the isle this July 7th. Our relationship is so strong and I love her so much. Cancer has changed me in so many good ways. I will never question why me. Why not me. Thanks to GOD and Columbus, Ohio Riverside Methodist Hospital and all the doctors and nurses that cared for me for giving me the rest of my life.

    AA3

    I am just getting used to the site and reading some other stories. Im not sure I had any warning before the sezuires but the kaleidoscope seems to ring a bell. Can you tell me what you mean?

  • Khayzee0210
    Khayzee0210 Member Posts: 1
    Hi.. I'm kristine, the doctor

    Hi.. I'm kristine, the doctor told us earlier that my brother have a astrocytoma and he don't know yet what grade is it. me and my family are so afraid for my brother. We don't know what to do. He already undergo in his second surgery to his head. But we don't know yet what exactly result to his test. i want to know also if it's normal after his operation, we can't talk to him normal. He tell story that we don't understand. We think he really depressed. we don't know yet what is the next medication they will do for my brother. Please help my family to pray for my brother. He just 30 years old to suffer to this kind of disease. Thank you

  • goshenfire72
    goshenfire72 Member Posts: 3
    Diagnosed with grade 3 astrocytoma 30yrs old

    I was diagnosed with a grade II-III astrocytoma on April 20 2013. I underwent surgery at the Cleveland Clinc on 5/22/2013, they removed "most" of the 3.5cm tumor. I am going back to cleveland in a couple of days for a folow up and game plan. I am hoping they hit me with everything they have! My wife and I have a 21 month old daughter and a baby due to be born in two and a half weeks!! I just want some positive stories to keep me motivated. I know I can beat this and help other people. My surgery was only two weeks ago and I feel great, back to normal! The surgeon could not get all of the tumor due to functional loss of my left hand during surgery, but its fine now. My tumor is on the right frontal lobe. I just want survival stories to keep me positive so I can keep y family positive as well.

  • sadinholland
    sadinholland Member Posts: 248

    Diagnosed with grade 3 astrocytoma 30yrs old

    I was diagnosed with a grade II-III astrocytoma on April 20 2013. I underwent surgery at the Cleveland Clinc on 5/22/2013, they removed "most" of the 3.5cm tumor. I am going back to cleveland in a couple of days for a folow up and game plan. I am hoping they hit me with everything they have! My wife and I have a 21 month old daughter and a baby due to be born in two and a half weeks!! I just want some positive stories to keep me motivated. I know I can beat this and help other people. My surgery was only two weeks ago and I feel great, back to normal! The surgeon could not get all of the tumor due to functional loss of my left hand during surgery, but its fine now. My tumor is on the right frontal lobe. I just want survival stories to keep me positive so I can keep y family positive as well.

    My husband goes to Cleveland

    My husband goes to Cleveland Clinic. We are very pleased with them.

  • kullapa
    kullapa Member Posts: 1
    My Best Friend with Astrocytoma Grade III

    Hello all;

    I am an international  student living in Ohio. My best friend who I am living with is diagnosed with anaplastic astrocytoma grade III about three weeks ago. Our world collapsed and everything has been changed. We are quite depressed because we are away from home so there is just a handful of people to turn to. My friend is working as a postdoctoral researcher and she has about half year left to go. She had a breast cancer two years ago and finding out this nasty brain tumor is such a burden. I feel so derperate but I have to be strong for her.

     

    We were told by the first hospital we went when she fell down that her tumor is inoperable. So we are trying to get a second opinion at University Hospital in Cleveland. Dr.Andrew Sloan, the Neurosurgeon, said he can do something with this tumor but we have to make sure it is not pressing on her speech center. Tomorrow we will go up there to have functional MRI. The major problem is that English is not her native language and we are very worry how good the data will be. Anyway I will be positive and keep expecting for miracles.

     

    My friend is the sweetest girl I have ever met in my life. It never be easy to realize what she has to go through.

    I am sure all of you are such a sweet and nice people. Thank you for sharing a precious opinoin and experience. I am one of your people. You are all in my prayer. I and my bestie will fight with all we have.

     

    KC

  • goshenfire72
    goshenfire72 Member Posts: 3

    My husband goes to Cleveland

    My husband goes to Cleveland Clinic. We are very pleased with them.

    I am very pleased with

    I am very pleased with Cleveland as well, these people know brain tumors well. Who are your husbands Doctors?

  • goshenfire72
    goshenfire72 Member Posts: 3
    kullapa said:

    My Best Friend with Astrocytoma Grade III

    Hello all;

    I am an international  student living in Ohio. My best friend who I am living with is diagnosed with anaplastic astrocytoma grade III about three weeks ago. Our world collapsed and everything has been changed. We are quite depressed because we are away from home so there is just a handful of people to turn to. My friend is working as a postdoctoral researcher and she has about half year left to go. She had a breast cancer two years ago and finding out this nasty brain tumor is such a burden. I feel so derperate but I have to be strong for her.

     

    We were told by the first hospital we went when she fell down that her tumor is inoperable. So we are trying to get a second opinion at University Hospital in Cleveland. Dr.Andrew Sloan, the Neurosurgeon, said he can do something with this tumor but we have to make sure it is not pressing on her speech center. Tomorrow we will go up there to have functional MRI. The major problem is that English is not her native language and we are very worry how good the data will be. Anyway I will be positive and keep expecting for miracles.

     

    My friend is the sweetest girl I have ever met in my life. It never be easy to realize what she has to go through.

    I am sure all of you are such a sweet and nice people. Thank you for sharing a precious opinoin and experience. I am one of your people. You are all in my prayer. I and my bestie will fight with all we have.

     

    KC

    I would check with the

    I would check with the Cleveland Clinic, it's right next door to the University Hospital. Cleveland Clinic has a team of surgeons, oncologists, radiologists, nurses etc. that do nothing but brain tumors, they do not deal with any other type of cancers. They have a tumor board meeting twice a week that consists of 40 doctors, NP's and RN's that reveiw and discuss every case. I have been very pleased with thier succsess and bed side mannors. Also Indiana University and Duke University have outstanding programs as well for brain tumors. I do think the University hospital is good as well. Since you are in cleveland I would most definetly check out the Cleveland Clinic, they are truly world class in brain cancer. I wish your friend much luck and will pray for her.

  • a09082038828
    a09082038828 Member Posts: 5
    Mom's AA3

    Hi. Mi mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there.

  • a09082038828
    a09082038828 Member Posts: 5

    chemo drugs?
    Hi Chicken2799:

    My daughter is currently completing the chemo phase for her Anaplastic Astrocytoma. She also had surgery and radiation. Do you mind telling me what drugs you took? Did you have a port? Sarah is doing Irinetecan and Avastin 2x a month via infusion. Then on the beginning of her last infusion for the month she takes Temodar for five days. Her main neuro-oncologist wanted to stop the Temodar because she gets so sick from it. It seems like I read other people blogging that it works though. Did you take Temodar? I am happy for you and your family. God Bless you. Thanks for sharing.

    Edna

    Hi Edna !

    hi edna ! i've seen some of your post here at csn. You serve as an ispiration to me because you're a very positive person.  My mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there.

  • serenefhf
    serenefhf Member Posts: 1
    Help Jose!

    How do you survive this? I went to do a research and I know that anaplastic astrocytoma haloves survival rates and can only live for 3-5 years.

     

    what did you do to survive?

    how long has it been since your diagnosis?