Astrocytoma Grade 2

mge007
mge007 Member Posts: 2
edited November 2022 in Brain Cancer #1
I was recently biopsied and diagnosed with an astrocytoma grade 2 tumor. With the exception of the symptoms that led me to my Doctor I've only dealt with the side effects of being on Decadron and more harshly of trying to be OFF Decadron. My first set of Doctors said there is no cure and to enjoy the 3 to 5 year expectancy of this type of cancer. My second opinion Doctors say that radiation is an option, but have not yet started any treatments. Does anyone who also has this diagnosis have any actual experience with having this cured or slowed? Doctors are people too, and I would hate to think that I'm just helping someone make a boat payment...

Comments

  • jen8675309ren
    jen8675309ren Member Posts: 2
    #2
    I am a survivor of an astrocytoma (WHO11) they removed mine completly and I am now cancer free. I also believe that I had the best surgeon and I would be happy to tell you who he is My e-mail address is Jen8675309ren@AOL.com He does 100's of surgeries like this every year. Where is your tumor? I was also on decadron and I hated it. I felt like I was drunk all the time. Please be sure to get a second opinion if you haven't already. I know what you are going through and if you need someone to talk to just e-mail me. Good Luck
  • Unknown
    Unknown
    #3
    Hi, I hope I can give you some insite and deffinetly HOPE. My wife was diagnosed with a grade 3 astroytoma in september of 2001, she was biopsied as you where, under went 6 weeks of radiation therapy and four cycles of chemotherapy. she is ALIVE AND WELL, she is having MRIs every 6 months to keep a watch on things and is due next week for another. She is symptom free and to date there has been no increase in the tumur size. The Decadron was probably the worst of all the drugs she had to take but a nessacary part of her treatment. Our Doctors have told her/us that she will have a long life and a good quality of life. Her tumur was in her left frontal/temporal area, she is taking dilantin dayly to prevent and siezues, --she had only one which is how we found out she was ill. After all is said and done she has a just a little short term memory loss, but nothing more than what comes with age, all her hair has even come back. miracles happen and she is one of them. You hang in there and do not hesitate to contact me if we can be of help. TIM
  • hoods1
    hoods1 Member Posts: 3
    #4
    I have a mixed case which is a combination of astrocytoma and dendroglioma, grade II. Which makes our cases very similar. I'm not sure of the severity of your case but, I was diagnosed in November of 02, had a biopsy in Dec. 02, another surgery in march to get the bulk of the tumor out, and I'm now starting my third week of radiation. I feel your pain on the Decadron. I was never addicted but I didn't like the way it made me feel. Things just weren't right. But luckily I didn't have to take that very long. What I want to tell you is yes, you can at least slow down but in some cases, completey rid yourself of cancer. People have done it in the past. When you need to decide whether or not to accept treatment, Think about your age. If you're young, do it definately. You have a big life ahead of you. If you are old-aged, the decision is a little more complicated.

    Keep your chin up..

    God Bless..
  • Earthmap1
    Earthmap1 Member Posts: 1
    #5
    I was diagnosed with a Grade II astrocytoma as well. I had surgery to remove to majority of the tumor and 6 weeks later I started a 6 week round of radiation. I am celebrating my 3rd birthday this June and I have yet to have any reoccurance of the tumor. The best advise I can give is be proactive. The sooner you act the better chances you have. Radiation therapy wasnt a bad experience and I didnt have many side effects other than hair loss. If you would like to discuss or need support please feel free to e-mail me at earthmap1@yahoo.com ~Cari
  • lfrey911
    lfrey911 Member Posts: 6
    #6
    HEY !! HANG IN THERE!! I was diagnosted in 1991. Doctors have not given up on me yet. They are all kinds of options, the GAMA KNIFE at WAKE Forest Uniververisty is the leading Cancer Treatment Center for this type of treament. I did not do well on Decadron either and there are many other drugs that are MUCH better. GET a SECOND opinion. Call the Wake Forest Baptist Univerisity Hospital in Wake Forest North Carolina. You CAN live a LONG and HEALTHY life. reach me at lfrey@triad.rr.com
  • lfrey911
    lfrey911 Member Posts: 6
    #7
    HEY !! HANG IN THERE!! I was diagnosted in 1991. Doctors have not given up on me yet. They are all kinds of options, the GAMA KNIFE at WAKE Forest Uniververisty is the leading Cancer Treatment Center for this type of treament. I did not do well on Decadron either and there are many other drugs that are MUCH better. GET a SECOND opinion. Call the Wake Forest Baptist Univerisity Hospital in Wake Forest North Carolina. You CAN live a LONG and HEALTHY life. reach me at lfrey@triad.rr.com
  • DCovington
    DCovington Member Posts: 6 Member
    #8
    lfrey911 said:

    HEY !! HANG IN THERE!! I was diagnosted in 1991. Doctors have not given up on me yet. They are all kinds of options, the GAMA KNIFE at WAKE Forest Uniververisty is the leading Cancer Treatment Center for this type of treament. I did not do well on Decadron either and there are many other drugs that are MUCH better. GET a SECOND opinion. Call the Wake Forest Baptist Univerisity Hospital in Wake Forest North Carolina. You CAN live a LONG and HEALTHY life. reach me at lfrey@triad.rr.com

    I also had Astrocytoma and have been through surgery,radiation, and chemo. I am now a 5 year survivor and am looking forward to walking my oldest daughter down the isle this summer to get married. If I can do that just think of what we all can do with God's help. David
  • miguelagon
    miguelagon Member Posts: 4
    #9
    Dont loose faith i had astrocytoma grade 2 i had surgery 4 years ago and now im going thru radiation.Change doctors,by the way mine was a brain tumor what could be more delicate than that.Email me and ill give u my doctors number and u can call him miguelagon305@hotmail.com
  • itsallgood
    itsallgood Member Posts: 5
    #10
    jen8675309ren said:

    I am a survivor of an astrocytoma (WHO11) they removed mine completly and I am now cancer free. I also believe that I had the best surgeon and I would be happy to tell you who he is My e-mail address is Jen8675309ren@AOL.com He does 100's of surgeries like this every year. Where is your tumor? I was also on decadron and I hated it. I felt like I was drunk all the time. Please be sure to get a second opinion if you haven't already. I know what you are going through and if you need someone to talk to just e-mail me. Good Luck

    Hi I am a fighter of astrocytomas I now have my 3rd I am 29 I had my first removed at 19 my 2nd at 18 and I had a biopsy on ny 3rd at 26. I am doing well and i figure and always have hey I'm alive I can hear see, walk have thhe sensation of touch and can speak I am lucky. So if u look at life like this you'll be fine and doctors only hurt to make u better. This seems a pretty cool site look forward to chatting
  • JN123
    JN123 Member Posts: 2
    #11
    can u give me the doctors
    can u give me the doctors info please anyone who can help witha astrocytoma grade 2 feel free nicholenye@yahoo.com
  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #12
    JN123 said:

    can u give me the doctors
    can u give me the doctors info please anyone who can help witha astrocytoma grade 2 feel free nicholenye@yahoo.com

    Check the dates
    JN123,
    These posts are nearly 6 years old, it would be better if you started a separate thread ;)
    stayingcalm
  • i4heynow
    i4heynow Member Posts: 1
    #13
    stayingcalm said:

    Check the dates
    JN123,
    These posts are nearly 6 years old, it would be better if you started a separate thread ;)
    stayingcalm

    2010 still here.
    September 9th will be 10 years since I had the tumors removed.It was around the left temparol lobe- hippocampus.I talked to 2 surgeons that wouldn't do the surgery, because of where it was. Then I found Dr Fullagar and he went in and saved me.
    I had to relearn things, so now I know it can be done. I went back to school and became a lead teacher in an after school program. I have to be on seizure meds for the rest of my life. Last grand mal was 3 years ago. before that I went 6 years seizure free. I still have to have MRI's and EEG's. I think about it everyday. I get scared if I have any weird aura feeling. I just lost medicaid because my daughter turned 18. I half to find a way to get these things that are keeping me alive.
    I hope you are still alive and in no pain. I love to here stories about others who are going through this.It helps to talk about it.
  • scia65
    scia65 Member Posts: 5
    #14
    JN123 said:

    can u give me the doctors
    can u give me the doctors info please anyone who can help witha astrocytoma grade 2 feel free nicholenye@yahoo.com

    I went thru a few drs. I
    I went thru a few drs. I have a astrocytoma glioma grade 2 right temporal lobe. I had a biopsy and two weeks later back to back surgeries to resections 2 of them, and to find out I still have the tumor. I then did 32 treatments of radiation, temadar for 9 months. At this point tumor is still there I chose to take a break from temadar as i was on 7 days a week no breaks I was sick all the time. Lost way too much weight and continue to lose. So I go for my scans every 2 months and wait for the worst. I still take my seizure meds and my antidepressents. So I take it a day at a time
  • scia65
    scia65 Member Posts: 5
    #15
    I have been on chemo, and
    I have been on chemo, and have had to resections also radiation, my drs say it could be a few years or 20 no one knows. I have met people that have had one and its 10 years later and they are doing great..Just stay strong. I am one year into it
  • nikibmama
    nikibmama Member Posts: 2
    #16
    Earthmap1 said:

    I was diagnosed with a Grade II astrocytoma as well. I had surgery to remove to majority of the tumor and 6 weeks later I started a 6 week round of radiation. I am celebrating my 3rd birthday this June and I have yet to have any reoccurance of the tumor. The best advise I can give is be proactive. The sooner you act the better chances you have. Radiation therapy wasnt a bad experience and I didnt have many side effects other than hair loss. If you would like to discuss or need support please feel free to e-mail me at earthmap1@yahoo.com ~Cari

    I know you posted this
    I know you posted this several years ago, but how are you doing? My husband was diagnosed in November with a grade 2 astrocytoma in the left frontal.
  • Javier
    Javier Member Posts: 1
    #17
    jen8675309ren said:

    I am a survivor of an astrocytoma (WHO11) they removed mine completly and I am now cancer free. I also believe that I had the best surgeon and I would be happy to tell you who he is My e-mail address is Jen8675309ren@AOL.com He does 100's of surgeries like this every year. Where is your tumor? I was also on decadron and I hated it. I felt like I was drunk all the time. Please be sure to get a second opinion if you haven't already. I know what you are going through and if you need someone to talk to just e-mail me. Good Luck

    Hello, Jen! I'm so happy to learn so good news. I wonder if the tumor you suffered was interior or peripheric. Till now, I assume that extraction of inner head tumor is not possible, though there is stereotactic radiosurgery as a fine alternative for many cases. Thank you and congratulations, again. Take good care of yourself, thank so much (this is for a friend suffering from astrocytoma grade 2).

  • Ozz_Nixon
    Ozz_Nixon Member Posts: 1 *
    #18

    MAY 2022 - SURVIVOR!

    Oct 23rd 2021, I wake up in the living room, eyes closed, but, my head was registering something was not right, my head was bobbing like I was head banging - well, that experience lasted for just under 30 seconds. I could not speak, blah blahh blah is all that came out, I mentally thought, ****, I had a stroke. But, as I said, 30 seconds later, I could talk, and I could get up and stand - so I took my morning shower, had lunch, and nodded back to sleep and woke up in the recliner doing the same thing. This episode lasted just under 10 seconds, same issues, speech was all messed up, and decided, call 911. EMT's accessed it as sleep Apnea issue. Was taken to Crestview Florida hospital - but, they did not have the correct equipment, put me in another ambulance and sent me to Fort Walton Beach HCA hospital - where I was told things like "we don't need to do surgery, we will just send you home" (the lead surgeon). Well, Dr. Converse took my case, had them MRI me, CT me, and said "there is a mass on your right front lobe". So, he did a biopsy - which took Florida University over 6 weeks to report astrocytoma - with a bunch of letters after it. Basically, I was told I had Grade 2. Now, to the scary ****:

    Oct 26th/27th, I am on the 3rd floor in recovery with others who were not so lucky. One lady could only scream like she was demonically possessed. 3 others that went in for the same procedure as me, died on the table - so, being a computer guy, I am like 1/4th - that is my gamble in life, I am done!

    Well, I met with a Radiation Doc in Crestview - he said, "I want you to go to University of Florida/Jacksonville for Proton Radiation treatment. Well, I am unemployeed, and though I am legally disabled, I have no insurance, no income, and UoF won't do Proton for free. So, I relayed this to my radiation Doc who said, well, let's send you to Ascension Sacred Heart of Pensacola. I met with Dr. Aldway, who basically said - "no, we are going to do surgery and get this removed before we do Radiation/Chemo". He scheduled me to meet with Dr. Maria Toledo, who does at least one of these "resections" a day. She was very humble, but, understood my disdain about someone going in again. She did have enough cockiness to make me listen, and she talked me into giving her a chance.

    May 25th 2022 - I go in, and 2 weeks later, I do my follow-up - she says, "we do not like to use the term cured", however, she had removed it. I still have to do what everyone here has mentioned - follow-up Chemo/Radiation for a 6 week treatment. I tried to detail this enough for the next person that comes along like I did, and assure them - if it is operable - you find someone that is a rock-star in removal, and get it removed! As someone else said, remember, the surgeons are human. I was never diagnosed with a "timeline"... actually, I was told my Biopsy reported basically Grade 2. However, this last pathology reported it as more aggressive Grade 3.

    If you (or anyone else) wants to talk about astrocytoma, the stupidity of SSA/SSI and being disabled and getting ignored, etc. my email address is ozznixon @ gmail (dot) com. Enjoy life, appreciate those in your life, and remember, it could also be worse! (that last part is what I have to remind myself everyday - it's a **** applying for a job 5+ times a day for 6 months now, and basically getting told you were not selected. In my line of work (computer programmer), I am the rock-star, have worked for multi-billion dollar companies, and many startups... now I am at the point of I work in a food truck so I have food (literally) on the plate).

    Best Regards,

    Ozz Nixon

  • jinjee
    jinjee Member Posts: 2 *
    #19

    Thanks for sharing your story, Ozz.

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