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Thread: Has anyone been, or is dealing with a loved one with a brain tumor?

  1. #1
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    Has anyone been, or is dealing with a loved one with a brain tumor?

    Hello,
    My name is Natalie. My mom was diagnosed with a stage 3/4 GBM brain tumor about 3 years ago. This coming up monday she wil be going home. Since christmas 2010, she has been in the ER, and then transferred to a nursing home. Where she does not get the care she should. Hospice is being called in shortly here, we are waiting on a MRI result from monday. Im only 28, and im not ready to lose my mom. I dont know how to even put my head around this. I feel like this is all an out of body expirence. I wanted to know if any could explain what me and my family should expect from here on out. I would like to know if anyone can give me an idea of how long a person can survive with A brain tumor and no treatment. Any advice would be helpful, and much appeciated.
    Thank you

  2. #2
    Hi Natalie, I am sooo sorry to hear about your Mom. You didn't say if your Mom was able to have any of the tumor removed but I did see that she is a 3 year survivor and I have to say WOW!!! It appears that your Mom has been very strong through out all of this and I really hate to hear that she did not receive the proper care in the nursing home. Will the Hospice care be provided in the nursing home or in her own home? Hospice is a wonderful service that can really help the patient and the caregivers with so many things. I don't know what her symptoms are at this time but you may find that with the proper care and some extra TLC that she might become more stable for a time. Don't give up on her yet. I know that you are afraid, it is something that all of us feel most of the time. My husband has a frontal butterfly GBM stage 4 and was diagnosed last year in July. His tumor is very large and not operable and he continues to defy the odds. He is not currently under active treatment at this time because he is not stable enough to receive them. We are going to move forward with Avastin treatments when his condition improves. Please take the time to talk to the Hospice social worker, she will help you get some counseling for the grief and uncertainty you are feeling right now. I know that you will get good advice from this website as well because there are so many people going through the exact same thing as you, me included. Remember to breath and ask lots of questions, even if you think it is pointless. For me, knowing is better than not knowing. I will pray for you and your family. Hang in there Natalie!

  3. #3
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    Hi Natalie ~ How hard it must be to only be 28 and losing your mother. The fact that she has lived three years with a GBM is incredible as most only live one year. I have the opposite situation in that my 25 year old daughter is the one with brain cancer.

    Here is a good site as far as what you can expect for the end stages http://www.brainhospice.com/SymptomTimeline.html. Everyone is individual and unique so some things might be a little different but most are pretty typical symptoms. I cringe every time I click on this link to attach it someone because I know what it means. I pray for peace for you and your family as you go through this time.

    Dianne

  4. #4
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    Hi Natalie. I've been reading posts on this site for a while now but haven't signed up until I read yours. I'm also 28 and my dad was just diagnosed with GBM stage 4 in February, had surgery and is now starting the radiation and chemo, today. He is 55 and just retired this past summer. I know how heartbreaking it is seeing a parent go through this and feeling so helpless. I'm getting married this October and am so scared that my dad might not be there to walk me down the isle. He is so excited for my wedding and cannot comprehend what is going on with his tumor. He forgets daily what his prognosis is and my mom has to continually tell him, which is so hard. Anyway, I know what you're going through and if you ever need someone talk to, you can private message me. I'm sorry your mom is going through what my dad is. All the best to you. Christine

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    Im very sorry to hear about your husband. He sounds like he is being very stronge through this to. Because of her type of tumor and the location she could not have it removed. She did have a byopsy in the begining but with the tenticles of the tumor they could not remove it, it would have probably killed her. We just got her MRI resuts yesterday an they said there is change, whatever that means right? We are trying to get her home but now they have not approved transportation. That is the stupidest thing I have ever heard. Because of her county line they are having issues of who will transport her. And also the medical bed i no approved, i just dont understand how these small things are the only issues. So my aunt is just going to buy a bed and take her home herself. She needs to go home and be at peace you know, that all she wants. My mom has ben on avastin pretty much through all of this, she never had any side effects from it so that was good, but recently she has refused treatment and now her body will not beable to handle temador. Thank you for listening and sharing your story. I hope you and your husband the best.

  6. #6
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    I cant imagine how it is to have your daunghter going through this. Thank you for the site. I hope you and your family the best, you will be in my thoughts.
    Natalie

  7. #7
    Experienced User DeborahR's Avatar
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    Hi Natalie. I'm sorry to hear of your mom's cancer. I know this has been hard. My 51 y/o brother was diagnosed on 1/27 of this year with a GBM IV tumor. He tried one week of chemo & radiation, but it did not improve the tumor at all and caused seizures. Therefore, the doctors pretty much said there was nothing else they could do. (His tumor is inoperable.) On 2/22/11 the doctor told us he would probably live 2 weeks to one month. However, he is still with us. He is now in a hospice house being cared for. He can no longer talk or walk. We are not sure how much he understands, but we know he knows that he is very sick. He has been in some pain lately, so they give him meds for that, which makes him sleep. Therefore, he sleeps much of the time. His appetite is still good, tho. He wakes up enough to eat and then goes back to sleep. We do not know how much longer he has. We are still praying for a miracle, but if one does not come, then we will do our best to keep him comfortable and wait for whatever comes. Hospice care is wonderful. The nurses and fantastic. I will say a prayer for your mom and the family. This is a hard thing at any age. I know it is even more difficult at your age. Bless you.
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  8. #8
    Hi Natallie,

    Sorry to hear about your mom's condition. It is hard to have a love one with the disease, and not much you can do to fix it. My 15 years old daughter has been diagnosed with a low grade brain tumor, so I know exactly how you feel.

    Don't know what kind of treatments your mom has received and what the docs are planning for her now. However, I've read that the FDA has recently approved a new non-invasive device (Novocure's NovoTTF-100A). The claim is that it can slow down GBM through magnetic interference. Below is the link to the article about the device. You may want to discuss that with her doc.

    EP

    http://www.virtualtrials.com/newsarticle.cfm?item=5008

  9. #9
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    Iam sorry to hear of your daughter. I appreciate your advice, but in my moms case we have stopped treatment. Hospice was called this week. Her body just cannot handle anymore, and it has also become active so fast already. She has a gbm IV. There is only so much doctors can do, and she has survived 3yrs which is unheard of for her tumor. I just want her to be comfortable at home and be at peace. I knew this was a terminal disease, but no one can prepare you for what is to come. She has been bed ridden for 3 months. Her memory is very bad now, my family just wants to be there for her now since it will probaby be only a few months.

  10. #10
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    Hi there,
    I'm only 23 and my father had his GBM IV tumor removed in late March. He's now on Temodar and undergoing radiation. I lost my mother to breast cancer when I was thirteen so my father is all I've got left. I can only pray we'll be lucky enough to have 3 years. i fear it will be much less with my father. Its so difficult and I hate reading article after article telling me about this death sentence. I'm REALLY not ready to lose my last remaining parent. Its so unfair to all of you that you and your loved ones have to go through this. Its a terrible disease! I don't even know what to think anymore. My dad is super depressed and all I want him to be right now is happy. I will say this though, my friend lost her father to cancer last year and she said hospice was the best decision she made. It just made everything go "smoother". I know its a very difficult time and i miss my mother everyday. Feel free to email me if you need a vent or someone to just listen.

  11. #11
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    Hi -

    I was diagnosed with a pineal germinoma, a really rare brain tumor in the very center of my brain, in spring of 2008. I finished treatment in the fall of that year, and so far, so good. I've been blogging about the experience for a while now in an effort to help others understand what it's like. Maybe that'll help. Maybe not. Either way, I wish you and your family the best. I know how scary it can be. Hang in there.

  12. #12
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    Hi
    My Dad was diagnosed with a grade 4 brain tumor in December 2006, he was 58. They were unable to remove any of the tumor as it would of probably have left him unable to walk. My dad lived for over 4 years with this condition and passed away 3 weeks ago today at the age of 62 just 2 days before his birthday. He has left such a massive hole in my life but I am so glad he is now out of his suffering. He also went into 2 nursing homes, but was injured in one and ended up with a dislocated shoulder but the second one he was in for 3 months nursed him as well as could be expected. My dad's tumor did respond to treatment and for 2 years he still had a fairly good quality of life except for the seizures he had which would effect his left leg and often left him unable to walk for a few days after. I think my dad lived longer then expected (they only gave him months) due to his positive thinking and the love for his family who he did not want to leave. My dad also responded to radiotherapy and this stopped the tumor growing for 7 months. He then had 6 rounds of chemo which also stopped the tumor growing for a period of time. I totally understand what people are going through who have a loved one with this condition, I was only 27 when my dad was diagnosed and he was my rock in life. I am slowly coming to terms with it as I did try and prepare myself when we knew he was getting worse. My heart goes out to anyone who has this disease in their family. My only consolation I can tell you is my dad died very peacefully and even though I got to the hospital 9minutes too late my mum was with him when he passed away.
    Vanessa x

  13. #13
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    Hey there,

    I know exactly how you're feeling. I'm 18 and loosing my mom to grade 4 Glioblastima multiforme. She is in her last couple of weeks now before she's expected to pass away. After 4 years of her being sick, I think she has gotten to a point where she just wants to die. It has become so bad now it's actually cruel. I think the two most important things to do, is to keep God close, and just BE there for her as much as you can. I fall to sleep with my mom most nights and just let her know I am there. Talking to her even though she can't reply. There's not much to say really, I hope you find some peace in your mom's illness. I have, and it has helped a lot, though it seems so unfair.

 
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