AA3

s77sunflower
s77sunflower Member Posts: 2
in Brain Cancer #1
I work as a caregiver to a woman who is confined to the bed with a really bad back among other things, and her husband Ted was diagnosed with AA3 just two days ago. Ted doesn't want to know what is to come other than his treatment plan...he's afraid if he is told that he will go blind that he will be "blind" tomorrow...mind over matter. Like saying your sick and then actually feeling it. He is being really strong and driven, but Holly's world has just crumbled around her. She needs to have back surgery, but that's being put on hold during this trying time for them. Ted will find out his treatment plan next week. Due to Holly being confined, she can't do alot of research without Ted knowing....so I am trying to do what I can to find out some information for her. So, here goes, alot of questions...Ted was told without treatment, he only has a few months to live and with treatment (chemo and radiation) he will have approx two years. He was told surgery wasn't an option, the tumor is located on the back side of his frontal lobe pressing on the nerve going to his left arm. Is this an average life expectancy? He was also told that chemo and radio won't kill the cancer, but will keep it from getting spreading quicker. He was also told that this cancer won't go into remission. Is this true for most people? Also, Holly wants to know what to expect....will ted loose his memories? loose bodily functions...speech, mobility, etc?? will she loose the "ted" she knows? He is going to be treated in Huntsville Alabama...does anyone know somewhere better? They would like a second opinion, I believe a family member who is a neuro onco suggested UAB... not sure though. Any info would be greatly appreciated. I need to be able to give Holly some hope for her husband. If anyone is willing to talk to her via email or phone, please give me your info and I will give it to her when Ted's gone. Thank you so much... Shannon

Comments

  • blackngray
    blackngray Member Posts: 11
    #2
    It will be okay
    I don't know how to say this without yelling, please get a second opinion from a supportive team of doctors who a trustworthy and knowledgeable of cancer and brain cancer.
    I am spewing with anger reading the what has been told to your employers, Ted and Holly. I highly recommend UAB as a great medical and learning hospital. Know that students will practicing almost 100% at UAB. I've had 2 family members' lives saved there. One for liver cancer, blood cancer, heart surgery (all the same person) and another for an aneurysm in the brain. Both alive and well from UAB. The surgeons were not students.
    As far as your questions. Please know my experience comes from having an anaplastic astrocytoma stage 3 also. Mine was removed by surgery in Florida. It was located in the left parietal occipital lobe. I have many deficits but I have not lost who I am.
    I recommend this. Depending on Ted's current age, he automatically qualifies for social security disability compassionate allowance. Which is speedy approval, compared to a 6 month wait he gets a 3 month wait.
    Also insurance.
    Now to the questions....please ignore all statistics because NONE of them apply to Ted! Not one! It angers me that any doctor in the helping profession would give a patient survival statistics, unless asked for. If you want to know what they are www.cancer.gov. They are harsh and to the point. But my point is and any good caring doctor will tell you....you are not a statistic, have hope, your body senses hope.
    Unfortunately, without treatment it is possible that Ted may not survive the tumor. When I was in my darkest moment, I actually googled, how does cancer kill the brain. It's nasty. I'd have to say its scary. I chose treatment for my loved ones more than I wanted it for myself. With treatment, Ted may out live Holly. With treatment, Ted will always have to have an MRI every month, and then every three months, and then every 6. Some survivors actually go out as far as an MRI every year. It's worth celebrating each milestone. Sometimes there are setbacks. As for me, I'm a 2.5 year survivor and I've never been over 3 months MRI but each has been slightly stable.
    The cancer will always BE there. It will never go away. So when someone says, are you cancer free, or in remission I can say yes to soothe their spirits yet I know better. The dormant cells remain. It's like being an HIV carrier, or TB carrier. The doc has to tell you truths you don't want to hear like the cancer will never be completely gone, because it won't, but the tumor itself will stop growing inside if you start a particular treatment...you see.
    I recommend visiting a website also, www.virtualtrials.com and joining a group for caregivers of brain tumor patients and it is also for patients. It can also help answer more technical questions such as the one you have about the location of the tumor. I recommend looking up a map of the brain. That's what I did, to see what I may be losing of be affected by this tumor business.
    Also the standard treatment is right. 42 days temodar (dosage based on weight) 33 days radiation and then hair falls out with plenty of tiredness!!!!!, he will need you the most during this time! And then 6 to 12 months temodar which mostly well tolerated with a prescribed anti nausea pill like zofran.
    I hope this helps you!

    It was a ride for me. I'm still on it. I'm a social worker as well. So I tried to include details that I felt you may need. I wish them all three of you journey of strength and recovery.
  • JudyBug
    JudyBug Member Posts: 1
    #3
    blackngray said:

    It will be okay
    I don't know how to say this without yelling, please get a second opinion from a supportive team of doctors who a trustworthy and knowledgeable of cancer and brain cancer.
    I am spewing with anger reading the what has been told to your employers, Ted and Holly. I highly recommend UAB as a great medical and learning hospital. Know that students will practicing almost 100% at UAB. I've had 2 family members' lives saved there. One for liver cancer, blood cancer, heart surgery (all the same person) and another for an aneurysm in the brain. Both alive and well from UAB. The surgeons were not students.
    As far as your questions. Please know my experience comes from having an anaplastic astrocytoma stage 3 also. Mine was removed by surgery in Florida. It was located in the left parietal occipital lobe. I have many deficits but I have not lost who I am.
    I recommend this. Depending on Ted's current age, he automatically qualifies for social security disability compassionate allowance. Which is speedy approval, compared to a 6 month wait he gets a 3 month wait.
    Also insurance.
    Now to the questions....please ignore all statistics because NONE of them apply to Ted! Not one! It angers me that any doctor in the helping profession would give a patient survival statistics, unless asked for. If you want to know what they are www.cancer.gov. They are harsh and to the point. But my point is and any good caring doctor will tell you....you are not a statistic, have hope, your body senses hope.
    Unfortunately, without treatment it is possible that Ted may not survive the tumor. When I was in my darkest moment, I actually googled, how does cancer kill the brain. It's nasty. I'd have to say its scary. I chose treatment for my loved ones more than I wanted it for myself. With treatment, Ted may out live Holly. With treatment, Ted will always have to have an MRI every month, and then every three months, and then every 6. Some survivors actually go out as far as an MRI every year. It's worth celebrating each milestone. Sometimes there are setbacks. As for me, I'm a 2.5 year survivor and I've never been over 3 months MRI but each has been slightly stable.
    The cancer will always BE there. It will never go away. So when someone says, are you cancer free, or in remission I can say yes to soothe their spirits yet I know better. The dormant cells remain. It's like being an HIV carrier, or TB carrier. The doc has to tell you truths you don't want to hear like the cancer will never be completely gone, because it won't, but the tumor itself will stop growing inside if you start a particular treatment...you see.
    I recommend visiting a website also, www.virtualtrials.com and joining a group for caregivers of brain tumor patients and it is also for patients. It can also help answer more technical questions such as the one you have about the location of the tumor. I recommend looking up a map of the brain. That's what I did, to see what I may be losing of be affected by this tumor business.
    Also the standard treatment is right. 42 days temodar (dosage based on weight) 33 days radiation and then hair falls out with plenty of tiredness!!!!!, he will need you the most during this time! And then 6 to 12 months temodar which mostly well tolerated with a prescribed anti nausea pill like zofran.
    I hope this helps you!

    It was a ride for me. I'm still on it. I'm a social worker as well. So I tried to include details that I felt you may need. I wish them all three of you journey of strength and recovery.

    I'm with you both....I have AA3 As well
    Hi, My name is Judy; I had a craniotomy in June, 2012; Diagnosed with Anaplastic Astrocytoma here...No chemo, no radiation; going to go for my first MRI soon, since surgery....Since chemo and radiation cause so many problems and do not cure this brain cancer, I had some wise doctors tell me NOT TO DO THE TREATMENT...I agree. I am just living. I want to know if ANYONE has any statistics on AA3 patients that do not do treatment; prognosis? My doctors say I have 1 1/2 to 2 years to live...I am choosing not to believe them. SCARED about how this will take over. Appreciate all feedback I can have and how this will take me down eventually..slowly or quickly? THANKS...any help will be appreciated and I LOVE YOU ALL! XO

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