Astrocytoma Grade III-Survivor

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  • edslas
    edslas Member Posts: 18
    avenzor7 said:

    newly dx with AA3

    Hello everyone my name is Amy I'm 30 yrs old and just found out 2 days ago about my dx.  It all started 3mths ago when my whole left side went numb, I went to the ER thinking omg I am having a stroke at this age.   Well after an mri I found out I had a mass on my right frontal lobe approximately 3cm.  I had all the visible tumor removed on Dec 16.  After the awake crainiotomy  I was able to move my left side and the numbness was completely gone.   This was a great feeling because the surgeon had explained to us I might have the numbness for ever and also problems with movement since the tumor was so close to the motor function.  I started radiation  yesterday and will start chemo next week.   This journey has been by far the most difficult and scary one in my life.   It has also made me a stronger person. Trying to live one day at a time.   I've been very blessed because of my family and friends that have not left my side and most of all my love and faith for God has grown tremendously.   I must confess I am so happy I found this site.  Reading every one else's stories help because I know now that I'm not the only one fighting this battle.   I want to let everyone here know that I will be praying for all of us battling cancer.   For anyone that has gone through radiation and chemo, any pointers as to what to expect or what helped I would greatly appreciate any feed back. Thank you.  

    Avenzor,
    There are several

    Avenzor,

    There are several blogs out there were people detailed thier experience from Dx to survivorship. See mine, the liz army, or just goole for 'brain tumor blog. At Dx I found it very comforting to read about stories from people going through the same experience.

    Best Wishes,

    Ed

  • Jmack54
    Jmack54 Member Posts: 2
    munroe said:

    grade III AA
    I got graded a III after they said my AA was originally a II so craniotomy and complete resection was done. I have 3 year old twins and a 16 month old. I'm wondering about the stats you read, are they as bad? how is your story panning out?

    Grade 3, anaplastic astrocytoma

    I was diagnosed 20yrs ago, your not a statistic, my children where not much older than your kids are now, now my two son's are in college. You can live to see them become young adults. Keep the faith.

  • geeteebee
    geeteebee Member Posts: 1
    Help From a Survivor

    God bless you man.  I am 62 and my wife of 37 years has been diagnosed with a grade 3 astrocytoma.  We are in the early stages of treatment and I am very scared of what is coming at us as we head down the road to further treatment.  What advice would you give to a caregiver?

    Thanks for your sharing,

     

    Glen in NJ

  • BelindaDana
    BelindaDana Member Posts: 5
    javigm123 said:

    i also have a thalamic tumor
    would be great to exchange experiences, you can reach me at javig[email protected]

    AA3 in thalamus

    I also have grade III AA in the thalamus with part of it in the right parietal lobe. I was diagnosed in August, 2013 after severe vertigo. I have had bouts of benign positional vertigo for years that were improved with aurical manipulation exercises. But the severe vertigo started on Father's Day in 2013 and it was nothing like the positional vertigo I had had before. After a week, I decided that maybe I had an inner ear infection and went to an urgent care. They gave me a prescription for antibiotics which didn't help. I went to my primary care physician. She prescribed antibiotics and a steriod just in case it was an infection but during her exam, she noticed some neurological symptoms that made her order an MRI.

     

    The MRI showed two lesions; one in the thalamus and one in the right parietal lobe. A biopsy was done and the diagnosis was Grade III anaplastic astrocytoma. Because of the location, surgery was not an option but the radiation oncologist thinks that even though on MRI, it looks like two lesions, it is actually one. I had six and a half weeks of radiation therapy and chemotherapy. I tolerated these treatments well (other than hair loss due to radiation). I finished those treatments in November of 2013 and in December, 2013, I started the six months of five days on and twenty-three days off chemotherapy. The dose of temodar was over double the strength of the six and half weeks dosage I had. That floored me! I was not expecting that after tolerating the early treatment so well. But I managed but did have to stay home from work the five days that I was taking the temodar.

     

    The doctors have been very happpy with my MRIs and if they are happy, I'm happy. I would love to hear how you are doing.

  • BelindaDana
    BelindaDana Member Posts: 5
    Encouraging words (I hope)

    I wanted to share some words with everyone that my radiation oncologist said to me at my first appointment with him. He said that the hope for treatment is to take this disease from the place where it is an acute life-threatening disease to a place where it is a chronic health condition that needs routine monitoring.

    Brain research is advancing at such a rapid rate that hopefully within our lifetimes, there will be a cure. I am fortunate to work in a large university/teaching hospital setting where I also received treatment and it is very encouraging to see all the research updates.

    My tumor is inoperable and I was not eligible for many of the trial studies because there is not enough of the biopsy material left to carry out all the studies that are needed to find a fit into a trial study but I encourage everyone to talk about trial studies with your doctors.

    Take care.

  • BelindaDana
    BelindaDana Member Posts: 5
    geeteebee said:

    Help From a Survivor

    God bless you man.  I am 62 and my wife of 37 years has been diagnosed with a grade 3 astrocytoma.  We are in the early stages of treatment and I am very scared of what is coming at us as we head down the road to further treatment.  What advice would you give to a caregiver?

    Thanks for your sharing,

     

    Glen in NJ

    advice to a caregiver:

    My best advice for a caregiver is to take care of yourself too. Easier said than done. Support groups are a great place to start.

  • Jmack54 said:

    Grade 3, anaplastic astrocytoma

    I was diagnosed 20yrs ago, your not a statistic, my children where not much older than your kids are now, now my two son's are in college. You can live to see them become young adults. Keep the faith.

    Chemo? Radiation?

    Hi there,

     

    My mom was diagnosed with this brain cancer last week. Did you do chemo and radiation? Thank you

  • My mother with Astrocytoma

    Did you do chemotherapy or radiation? How do you feel about the natural pathetic medicine for treating this form of cancer? My mom has been diagnosed with this form of cancer. Please let me know. 

  • BelindaDana
    BelindaDana Member Posts: 5

    My mother with Astrocytoma

    Did you do chemotherapy or radiation? How do you feel about the natural pathetic medicine for treating this form of cancer? My mom has been diagnosed with this form of cancer. Please let me know. 

    To: My mother with Astrocytoma

    Hi,

    I did 6 1/2 weeks of radiation and chemotherapy. I then had a month off and started six months of chemotherapy. This was a much stronger dose and I took it for five days and was off for twenty-three days. I tolerated the first 6 1/2 weeks of treatment well. The stronger chemo made me sick. I am allergic to many of the anti-nausea medications and relied on homeopathic remedies - peppermint, ginger and some meditation. My medical oncologist preferred that his patients take the medication in the morning but I took mine at night and that seemed to help. The doctor explained to me that there are two schools of thinking - those who think that if you are going to be sick, you may as well be sick during the day while you are awake and not disrupt your sleep by taking the medicine at night and having to be up through the night while you are sick. The other school of thought is that you may as well take the medication at night and try to sleep through the worst of it. That seemed to work for me. I was only sick the first night that I took it as compared to being sick most of the day when I took it in the morning. I took the week off each month when I took the chemo so that I could rest as much as possible.

    Good luck to your mother. Please let me know if I can answer any other questions. I am over a year into this so I may have some insight that may be useful to you and your mother.

    Belinda

  • KimLee
    KimLee Member Posts: 1
    Jmack54 said:

    Grade 3, anaplastic astrocytoma

    I was diagnosed 20yrs ago, your not a statistic, my children where not much older than your kids are now, now my two son's are in college. You can live to see them become young adults. Keep the faith.

    please share your story...

     

    My baby sister was diagnoised with an AA G3 (well just found out the results of her biopsy from the brain tumor they removed on Dec. 3rd) yesterday.  I would really love to hear your story... your journey per say... and any other helpful information you are willing to share with me.  What I read on the internet- survival rates- I didn't like at all... so would love to hear from you.

    Am so glad that you have had a successful story and am praying that our baby sister (who is 40) will have the same results.

    God Bless-

    Kim

  • bruce_c
    bruce_c Member Posts: 2
    Hi all 
    I was diagnosed with

    Hi all 

    I was diagnosed with AA in Sept. 2009 (cerebellum & brain stem, so inoperable). The initial prognosis was that I had about a year to live (at age 38). I had 6 weeks of radiation therapy early on. Until early this year (2014) the MRIs showed negligible growth.

    I have been taking several supplements, mainly from the Life Extension Foundation. (inc. Curcumin, Boswella, Reishi, Resveratrol)

    I have also been vegetarian (mostly plant-based too) for most of my life.

    Early this year, the tumour started growing slowly again. I have had 3 rounds of Temozolomide so far, which have been a little tiring, but fairly well tolerated.

    I have recently been moving to a completely plant-based diet, following information from NutritionFacts.org. I highly recommend the videos there. There's nothing like a "terminal illness" to get you motivated to change your diet Wink

    Anyway, we'll see how things have changed in a couple of months after my next MRI.

    Good luck everyone!

     

  • Stage III Brain Stem Glioma

    After a year of Temodar (Chemo) and six weeks of Proton Therapy (Radiation) I have decided to start alternative treatment. I am on TM to reduce the copper levels of my blood, have Vitamin C IV infusions weekly and take a lot of herbal suppliments to strengthen my immunse system. I alsp drink Structured water. It will be 3 years in March since my diagnosis. It's encouraging to see other SURVIVORS of what feels like a death sentence at first! Wondering if anyone else has tried naturopathy or alternative medicines and had sucess?

  • bruce_c
    bruce_c Member Posts: 2

    Stage III Brain Stem Glioma

    After a year of Temodar (Chemo) and six weeks of Proton Therapy (Radiation) I have decided to start alternative treatment. I am on TM to reduce the copper levels of my blood, have Vitamin C IV infusions weekly and take a lot of herbal suppliments to strengthen my immunse system. I alsp drink Structured water. It will be 3 years in March since my diagnosis. It's encouraging to see other SURVIVORS of what feels like a death sentence at first! Wondering if anyone else has tried naturopathy or alternative medicines and had sucess?

    Hi Girl_Least_Likely
    I

    Hi Girl_Least_Likely

    I haven't tried naturopathy. I've been feeling quite a bit better from following the (Whole Food Plant Based) recommendations from NutritionFacts.org, so I suggest you try that out. The guy who does the videos (Dr. Michael Greger) is a GP who has been learning from the latest nutrition research papers for years. His site is not trying to make any money, and does not accept donations from companies. I have learnt SO much in a few weeks. It is not just what you don't eat, but what you do as well. He shows which foods are best for lots of ailments, including various cancers, based on nutrition studies.
    Here is an example: which are the top anticancer vegetables?

    http://nutritionfacts.org/video/1-anticancer-vegetable/

    Good luck!

  • Dinakaran
    Dinakaran Member Posts: 5
    Jmack54 said:

    Grade 3, anaplastic astrocytoma

    I was diagnosed 20yrs ago, your not a statistic, my children where not much older than your kids are now, now my two son's are in college. You can live to see them become young adults. Keep the faith.

    Good to hear

    My BIL has anaplastic oligodendroglioma grade 3, and docs hav already threatened us about life expectancy....

  • tammysgirl
    tammysgirl Member Posts: 1
    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

    Treatment

    Hey rabbit, Tongue Out I'm so glad to here you are doing well and you are correct, God has you here for a reasonLaughing I would like to know what your treatment was and how long. I am faced with the question as to whether to continue Temodar or quit. I have been taking it for a year now.

  • Ash85
    Ash85 Member Posts: 2
    Does anyone know a person who

    Does anyone know a person who is cured of Anaplastic Astrocytoma grade III? I was diagnosed with a 'Neoplasm of the brain, problable Glioma' on the 10/10/15, no history of seizures, drove that morning, run 30 km a week, I pushed hard to get an MRI as the symptoms I had were a constant headache for about a year and an incident where I lost my speech for 6.5 hours and was treated for a migraine in hospital, then numbness on two fingers for about 20 minutes, treated for a migraine again, I just knew something was wrong, I just didn't know what - other than that it wasn't a migraine, 30 y.o female, left frontal lobe, about the size of an egg, full tumour removed via craniotomy on 21/10/15, post op MRI revealed cancer cells still present in 'buffer' zone, still awaiting confirmation from Melbourne Neurosurgeon, probable Anaplastic Astrrocytoma Grade III. I have had ONE panadol after surgery and literally NO negative side effects to medications like steroids/MRI contrast didn't give me a metallic taste or anything, or pain at all. I literally feel that this is the BEST thing that has happened to me in my life and I know that there is something special about me. I KNOW there is something in me that is going to lead to the cure for this awful disease. This is the most surreal experience ever - I would call me a liar if i didn't have the physical scars and photographic evidence to prove that I had been through this. I can't find ANYONE who has recovered like me anywhere in the world - not for lack of trying. In all the research I have done, they say there is a 2% cure rate - I'm looking for the 2% baby - I am willing to do what ever it takes to be in it! I am the strongest and most determined I have ever been and it is getting better every day since surgery. I have found gears that I didn't even know were possible. I am going to beat this, I KNOW it! P.S. I am in Australia, however, the site wouldn't flick the boxes so I've signed up as an American haha

     

     

  • Ash85
    Ash85 Member Posts: 2
    I'm looking for someone who

    I'm looking for someone who is in the 2% that is 'Cured'. Are you?

  • michan
    michan Member Posts: 2
    Anaplastic astorocytoma

    My name is Tsuneo Konishi living in Japan.
    New to this groop.

    My wife has fighted anaplasric astrocytoma from 2002.

    ●Medical History

    Diagnose Anaplastic astorocytoma

    April 2002 Reduction of right frontal robe.
    January 2004 reccurence at right frontal robe.
    Reduction.

    April She start to receive chemotherapy at Kyoto university hospital.,
    Protocol is vincristin+ACNU+carboplatin+interferon.
    September 2004 recurence at LEFT frontal robe .
    She started temozolomide treatment(sttup regimen)
    August 2005 Hyperthermia for left frontal robe at Nijgata university hospital.
    She is stable after Hyperthermia
    Autum2006 She started WT1vaccine treatment at Osaka university hospital.
    Autum2007 She got brain surgery for cyst.
    Diagnose is radiation necrocis
    Autum2007 She got brain surgery for cyst,too.
    Diagnose is no evidence of malignancy
    From now She is stable

  • shahjf
    shahjf Member Posts: 1
    Hello,
    Hope you are doing

    Hello,

    Hope you are doing well.

    My brother is diagonised with grade 3 AA, and he is 26 years old.  He got tumor removed through surgery, gross otal resection, Currently he is undergoing chemo and radiation.

    He is trying to be strong but losing hope, how can I help him to stay strong during this period.  What all precautions you took?  And what is your advice for him reagarding reading, food, exercise or other.

     

    Thank you

    Jalpa

  • harrisgupte
    harrisgupte Member Posts: 1
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    MADAN CAN I GET YOUR NUMBER,

    MADAN CAN I GET YOUR NUMBER, I WANT TO TALK TO YOU. MY PHONE NUMBER IS +918876695713 email id [email protected]