Astrocytoma Grade III-Survivor

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  • BOSBEK
    BOSBEK Member Posts: 4
    #102
    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

    Grade III Astrocytoma
    Thanks for the encouragement. My husband is being treated at Mass General Hospital. I must say that everyone there has been wonderful. Next Tuesday he will have the last of 33 radiation treatments. He has been taking a low dose of Temodar to help the radiation. He will then rest for four weeks and and begin a double dose of temodar 5 daysfollowed by 23 days off and that dosage will continue for a year. Stevens' tumor was in both the left frontal and temporal lobes. He had a partial resection. Have you had any recurrences in that time? What was your treatment regimen?
    Thanks for your help!
    Catherine
  • cushla69
    cushla69 Member Posts: 45
    #103
    I have anaplastic
    I have anaplastic astrocytoma grade 3. they tell me ill have this the rest of my life. ill be on chemo and seizure med for rest of my life. they cannot remove tumor cause of it location. will i ever be normal again, will i live long enough to see my daughter raised. this is my prayer more than anything
  • cushla69
    cushla69 Member Posts: 45
    #104
    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

    woodsymom
    I have the same as your son. got sick in june 2010, had open brain biopsy nov 9, 2010, and not long later got pathology report from JOhn Hopskins. Anaplastic oli. astrocytoma aggressive grade 3. they started me on radiation and chemo (temodat) on Dec 21, 2010 to feb3, 2011, then restarted chemo (temodar) march 3, 2011. i have to do it for 6 months for 5 days every 28 day cycle. they say they are surprised and very happy to see me doing so well. i am also on seizure med. keppra. this has totally changed my whole life, work and everything. i keep u and ure son in my prayers
  • cushla69
    cushla69 Member Posts: 45
    #105
    Fusionera said:

    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

    woodysmom
    i agree with Fusionera, my doctor told me they could not remove my tumor but could continue to give me temodar (chemo) and extend my life for a long time
  • Woodsymom
    Woodsymom Member Posts: 13
    #106
    cushla69 said:

    woodysmom
    i agree with Fusionera, my doctor told me they could not remove my tumor but could continue to give me temodar (chemo) and extend my life for a long time

    February 23, 2011 NO TUMOR!!
    On February 23, 2011, my son went to an MRI review with his radiation oncologist. At that time, he said Loren is cancer-free. Praise God. He is to have follow-ups every 3 months with a neurologist. This first follow-up all the neurologist did was ask him how he was feeling and congratulations on the status. My son has this idea that MRIs are no longer needed and probably doesn't need to see a doctor for a bit. I am going to have him ask if an oncologist needs to be a referral or what should happen to monitor his status a little more closely. No Temodor right now. No chemo. I am apprehensive my son is not staying more vigilant with medical follow-ups. He was diagnosed Stage III: Anaplastic Oliogodendroglioma 5/2010.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #107
    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

    questions on your tumor
    HI: My daughter had a left frontal tumor as well. They could not surgically remove it all. She had surgery, radiation and now chemo. Where did you have your treatment? Did they take all of the tumor?

    Also, how was your recovery? Any information and hope helps! Thanks and God Bless.
  • Tomaszrubin2
    Tomaszrubin2 Member Posts: 2
    #108
    i am 21 and i was diagnozed
    i am 21 and i was diagnozed with astro.. grade 2 in dec 2010 and i have one question to mate which is holding with it over 10 years do You smoke cannabis mate ? I am asking because i am an adict of cannabis and about 6 month before diagnoze i have stopped smoking weed and after a month since i stoped smoking i started to getting them weard fellings and tunnel vision or whatever You call it. I am just thinking is there some chance that weed had something to do with it ?

    Thank You
  • Tomaszrubin2
    Tomaszrubin2 Member Posts: 2
    #109
    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

    Do You smoke marihuana mate
    Do You smoke marihuana mate ? x
  • nailand1943
    nailand1943 Member Posts: 2
    #110
    immunization theropy
    HI,everyone, i am living in canada, one of my cousion was dignosed with stage3 anaplaastic astrocytoma earlyer this year. she is only 30,and has a cute little boy who's only 5. All my families feel so sad.

    She already got a surgery and taking chemotheropy right now. Her husband heared about this immunization theropy from one of their friend, but there was no detail supplyed. so they ask me to the search it for them, cuz they dont know English.But all I found about it are some essays.

    So I am here to ask if someone knows anything about it?Is it been use widely? share with us plz if U have any idea or have heard anything for U doc.

    THANK U SOOOOOO MUCH
  • Flav1234
    Flav1234 Member Posts: 14
    #111
    tmiles said:

    Astrocytoma survivor
    I had a Grade 1 Astrocytoma removed from my front right hemisphere in 01/2004. I have had no reoccurrance per the last 5 MRI's. Thank God!
    I am now 5 years clear, with guilt for having survived with nothing debilitating and I am starting to have emotional problems. Anger, depression, memory recall and I don't know how to cope with it much less how to correct the problem. I live in the Riverside, Ca. and I am looking for help with the psychological side of this. Does anyone out there have some information or contacts that can point me into the right direction?

    Tony
    LNTMILES@earthlink.net

    Did you find help?
    Hi Tony

    How are you doing now? I hope you found the help you needed... because I need help now. My fiance also had the same tumor (Right Front temporal lobe) and its been 12 years and he is so far gone with Anger, depression, social problems, fatigue ... hes now mimicking many mental disorders. I have been with him for alittle over a year and I am trying to find him help and failing miserably.

    If you found a treatment facility please advise...

    thanks
    Tracy
  • Alexanderson
    Alexanderson Member Posts: 3
    #112
    Hi !
    Thank you for trying to help others !
    My mother have AA3 and she went operation now she is almost normal !
    But need to go on radiation and I want to ask you if you know some information how to fight against this terrible illness ?
    Thanks forward !
  • Alexanderson
    Alexanderson Member Posts: 3
    #113
    Woodsymom said:

    February 23, 2011 NO TUMOR!!
    On February 23, 2011, my son went to an MRI review with his radiation oncologist. At that time, he said Loren is cancer-free. Praise God. He is to have follow-ups every 3 months with a neurologist. This first follow-up all the neurologist did was ask him how he was feeling and congratulations on the status. My son has this idea that MRIs are no longer needed and probably doesn't need to see a doctor for a bit. I am going to have him ask if an oncologist needs to be a referral or what should happen to monitor his status a little more closely. No Temodor right now. No chemo. I am apprehensive my son is not staying more vigilant with medical follow-ups. He was diagnosed Stage III: Anaplastic Oliogodendroglioma 5/2010.

    Hi !
    I am glad to hear about your son ! If there is some more information how to deal with this disease please don't hesitate to write me !
    Best luck !
  • Haley75
    Haley75 Member Posts: 8
    #114
    needingmore said:

    Thanks Jose, it is my job as well, to help others who have gone through the same thing as you & I.

    Need some supportive words
    Hi I'm 33 years old andvi have 5 fantastic kids I live in wales in the uk I was diagnosed with aa111 on deb 14th this year and had my surgery on 23rd of march they managed to get 95% of it out it was top right superficial and very accessible I've then completed 6 weeks of radio with no chemotherapy yet I've got my first MRI in October since I finished treatment I'm so scared I just want to be ok .. !!
  • Haley75
    Haley75 Member Posts: 8
    #115
    dc9md80 said:

    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.

    I hope and pray that I'm as
    I hope and pray that I'm as lucky as your husband I also have aa111 and I want to see my five fantastic kids grow up ... I'm finding it all very hard I've had surgery they removed 95% of it it was in the top right superficial .. I just want to get better x
  • Haley75
    Haley75 Member Posts: 8
    #116
    ronefx said:

    sorry, it took me so long to
    sorry, it took me so long to respond, I don't check here that often. I had 6 weeks of Radiation & 6 courses of chemo. I am still doing good, just get tired here & there, so I take a nap(which I enjoy anyways) but, that could be from everyday stress, I normally don't think about the fact I had cancer, cause it has been so long.

    I hope to be like you
    I hope to be like you one day .. People like you give me so much hope x
  • ktubby
    ktubby Member Posts: 4
    #117
    lmars said:

    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

    Hi. I read your blog and I was wondering how your son is doing. My husband was diagnosed July 2010. He had surgery and radiation and also took temodar. July 2011 the MRI showed the tumor is back on left side and also on the right side. What treatment did your son undergo after recurrence? Thanks Kathleen
  • sadinholland
    sadinholland Member Posts: 248
    #118
    Woodsymom said:

    February 23, 2011 NO TUMOR!!
    On February 23, 2011, my son went to an MRI review with his radiation oncologist. At that time, he said Loren is cancer-free. Praise God. He is to have follow-ups every 3 months with a neurologist. This first follow-up all the neurologist did was ask him how he was feeling and congratulations on the status. My son has this idea that MRIs are no longer needed and probably doesn't need to see a doctor for a bit. I am going to have him ask if an oncologist needs to be a referral or what should happen to monitor his status a little more closely. No Temodor right now. No chemo. I am apprehensive my son is not staying more vigilant with medical follow-ups. He was diagnosed Stage III: Anaplastic Oliogodendroglioma 5/2010.

    Woodsymom,
    I am so happy to
    Woodsymom,
    I am so happy to read your post as my husband is fighting the same tumor. He did however, have radiation and chemo. Last does will be the end of this month.Your story makes me feel so much better, knowing there is hope when you have been dx with a anaplastic olio. grade 3.
  • cushla69
    cushla69 Member Posts: 45
    #119
    kitkatkaz said:

    Anaplastic Astrocytoma stage 3 Survivor- 5+ yrs
    All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
    however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

    That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

    Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

    Healed and whole in the name of Jesus. Drug Free, Cancer Free.

    If I can help in anyway please let me know
    God Bless Kitkatkaz

    kitkatkaz, i also have AA 3.
    kitkatkaz, i also have AA 3. I have radiation and chemo pill temodar from dec21, 2010 to feb 3, 2011. then restarted chemo pill march3, 2011. Had open brain biopsy on Nov9, 2010. They just started me on Chemo Iv on aug 1 , 2011 and I am also still taking temodar for 5 days every 28 day cycle. After my radiation, they did MRI and it showed my tumor had grown instaed of shrinking. thats when they decided to start the IV. Thank God you are doing well in your fight, praying for you to stay cancer free. i pray for a cure everynight. Please just add me to your prayer list.
  • cushla69
    cushla69 Member Posts: 45
    #120
    Quilmes said:

    Yep it was in the frontal lobe, now it's dead. It's considered a small cyst, that will not reoccur. In addition yes I have short term memory lost, and sometimes date and time problems. What is your story please share it with me.

    I have AA3 also. Mine is in
    I have AA3 also. Mine is in between the frontal and temporal lobe, deep down in the crease. They say it is inoperable. They did do open brain biopsy on NOv 9, 2010 though, but surgeion said it was too big a chance to go back in, said he would if he knew he could get it but knows he can't so doesnt wanna take away from me the chance that i can enjoy my daughter as i can now. i have short term memory loss too ans i am so forgetful its unbelievable. I was a school bus driver prier to this. I could remember 150 kids names and 2 entire bus routes everyday and i was a s healthy as can be, i was a kidney donor in 1999 and had always been extremely healthy. i first got sick with a strange sour taste all over body on march 3, 2010, second time on June 4, 2010. i was rushed to hospital this time with seizure activities, which took my driving job. i loved my job. started me on radiation and chemo pill temodar on dec21, 2010, then restarted temodar on mar3, 2011 for 5 days every 28 day cycle, now they have started me on chemo IV on august1, 2011 and i am still taking temodar as before.
  • Wendywoo44
    Wendywoo44 Member Posts: 1
    #121
    Quilmes said:

    Yep it was in the frontal lobe, now it's dead. It's considered a small cyst, that will not reoccur. In addition yes I have short term memory lost, and sometimes date and time problems. What is your story please share it with me.

    I am a 30 year old newly diagnosed brain cancer patient from/in New Zealand. I had a 90% debulking from my right frontal lobe on 31 August 2011 and am halfway through my 6 weeks of radiation and chemo (Temodal). So far apart from being substantially bald in the treatment area I have managed to avoid any fatigue or nausea thus far.

    I had a Anaplastic Astrocytoma, which I'm told is a grade 3 and reasonably agressive so will do ANYTHING to get rid of this 10% that remains. I am having doubts about how effective radiation is - should I expect it to be gone, or smaller or show no change in my next MRI? I'm so new to this and don't know what to expect so any advice would be greatly appreciated!

    My blog details my journey thus far and is at www.wendywoo44.blogspot.com

    I look forward to hearing from you

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