Astrocytomas - questions, concerns, and introduction

AlyssaB
AlyssaB Member Posts: 1
in Brain Cancer #1

Hello CSN members,

I'm brand-new to this group, so I'm kind of introducing myself as well as asking the several questions I have about Astrocytomas. My boyfriend was diagnosed with them 5 years ago (before I knew him), and the doctors found them inoperable because of where they were located. Even though I'm told he had like a 5% survival chance, he's still alive and relatively healthy, considering everything. I've been dating him for a little while now, and am always concerned about him, though I'm not always sure what's "normal" or not, because until I met him I'd never known anyone with any form of cancer.

I'm glad to have finally found a place where I can ask questions and voice my concerns, so here goes.

First, my boyfriend seems really tired all the time, and falls asleep kind of suddenly. (well, compared to me, who has had insomnia most of my life). But he's tired at any given point of the day. He also has nosebleeds, which I was very concerned about because I've never seen a nosebleed that bad, and with his tumors and everything it had me worried. He brushes these things off, but he kind of brushes a lot of things off so even though he has more experience with it than me, I like to get others' opinions too. 

On another note, he has ankle problems that are totally unrelated to everything else, but I'm bringing it up here because he frequently takes prescribed 500mg ibuprofen, (not sure if it has anything else in it, but since it's over-the-counter I'm assuming its stronger than two regular motrin). It makes him even more exhausted when he takes it, so it has me concerned that it's not something he should be taking while he has two astrocytomas!

For the record, they said at his last annual apointment that the tumors were shrinking. At one point before I knew him he took medical marijuana, but stopped after some time, though they suspected it was the cause of the tumors shrinking. His next appointment is scheduled for July this year. He and I are both under 20, and still live at home with our parents, so I'm also not certain of my place in this matter, and whether I should say anything. That's why I'm hoping that you guys could help me with this, to know whether these symptoms are serious enough to make a big deal out of.

I can try to provide any more details you need, provided I know them myself. Thanks again to the administrators for letting me join CSN, and thanks in advance to anyone who can help explain this to me!

 

Comments

  • lthenderson
    lthenderson Member Posts: 19
    #2
    Welcome to the forum. 

    Welcome to the forum. 

    It is hard to say whether they are symptoms of the cancer or not because symptoms do vary widely between persons and locations of the cancer. However, they are definitely worth bringing up to your boyfriend's cancer specialist the next checkup. Good luck.

  • espoole3
    espoole3 Member Posts: 2
    edited March 2017 #3
    Survival for almost 12 Years freeway

    AlyssaB,

    Thanks for your post about you and your boyfriend.  I had a seizure in 2005 (driving on the freeway, but thank God I was in a morning traffic jam)!  I was diagnosed with an AA III in my left temporal lobe, and just as fortunately I lived in Tampa within 15 minutes of Moffitt Cancer Center, who had performed 2,000 brain resections.  After the surgery, he was only slightly more positive than your boyfriend's, telling me that the resection went well, but even though there was no visible remains of the AA III, I would never be free of the disease.

    After my surgery, I followed up with six weeks of radiation and six months of Temodar.  I was able to go back to work and help my wife raise our daughter, who's now 21 and in collage.  Over then years I only has problems with searching for particular words or names to finish a sentience, especially when I was tired. Nevertheless, my surgeon was right, and after the first seizure after 10 years, my cancer was back.  I had a biopsy at Duke (we moved to Charlotte for a new job in 2014), and my AA III was present but not advanced to a Grade IV / GBM.  I've had 14 more rounds of Temodar, but my oncologist saw that cancer looks to be growing just outside the cavity formed by the 2005 surgery, so I've switched to CCNU, but I can only have 9 cycles of those pills (total 54 weeks). 

  • espoole3
    espoole3 Member Posts: 2
    #4
    Need to Finish This Post

    AlyssaB,

    Sorry, but I posted by mistakenly before I was done.  First, about the 5% survival rate.  His doctor might be right about the statistics on survival, but as you can see, I'm still here, so here's a big range of how long anyone makes it through an AA III.  Second, the location of the tumor and surgery are a huge factor in what kinds of problems your boyfriend's having.  I've never had a nose bleed, and maybe he's never had a problem with words.

    Third, please be focus and work on your relationships with each other and with your families.  You'll have to figure out how the two of you can move forward in your relationship, and you'll just have at some point to decide it you can handle the extra work and risk involved with his cancer.  I was a bit older than you when I started dating the woman with whom I married.  At the time, she had been dealing with the effect of a neuroblastoma in her spine since she was three months old, and when she started dating me, she was using crutches and eventually just after we married had to start using a wheelchair.  While we were dating, her disability was of course part of what defined her, but only a part.  Her grace, caring, and positive commitment to our relationship was a key ingredient of how I fell in love with her.

    So at this point, you will need to find out what you can about his treatment, and learn about the risks that are now part of your relationship together.  I'm absolutely not a counselor, but please try to find your heart the best way you can.  Take care, and bless you and your boyfriend.

  • Stephaniep2112
    Stephaniep2112 Member Posts: 2
    edited April 2017 #5
    espoole3 said:

    Survival for almost 12 Years freeway

    AlyssaB,

    Thanks for your post about you and your boyfriend.  I had a seizure in 2005 (driving on the freeway, but thank God I was in a morning traffic jam)!  I was diagnosed with an AA III in my left temporal lobe, and just as fortunately I lived in Tampa within 15 minutes of Moffitt Cancer Center, who had performed 2,000 brain resections.  After the surgery, he was only slightly more positive than your boyfriend's, telling me that the resection went well, but even though there was no visible remains of the AA III, I would never be free of the disease.

    After my surgery, I followed up with six weeks of radiation and six months of Temodar.  I was able to go back to work and help my wife raise our daughter, who's now 21 and in collage.  Over then years I only has problems with searching for particular words or names to finish a sentience, especially when I was tired. Nevertheless, my surgeon was right, and after the first seizure after 10 years, my cancer was back.  I had a biopsy at Duke (we moved to Charlotte for a new job in 2014), and my AA III was present but not advanced to a Grade IV / GBM.  I've had 14 more rounds of Temodar, but my oncologist saw that cancer looks to be growing just outside the cavity formed by the 2005 surgery, so I've switched to CCNU, but I can only have 9 cycles of those pills (total 54 weeks). 

    How old are you?  My daughter

    How old are you?  My daughter had sx 2001 low grade 2 diffuse astrocytoma partial resection eloquent area left temporal lobe no treatment just scans recurrance 5 yrs later partial resection again.. although second sx they didn't get enough tissue to clasdify and grade it so now there is enhancement on mris 10 yrs later.  This will be 3rd sx and possibilty of mutation to higher grade if it hasn't already,...

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