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Thread: Sad to say I'm new here...and so afraid

  1. #1
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    Sad to say I'm new here...and so afraid

    I don't know how to begin something like this, so I'll just begin. My family just got just about the worst news anyone can get, a brain cancer diagnosis for my mother. It was the absolute worst thing that I have ever heard in my life!

    About a month ago, she went into the ER with some weakness and numbness on her left side. Doctors did ekg, chest xray, etc. and ruled out a stroke. At that time, that's what I was worried about...that she had a mini-stroke.

    The next day, she was went in to get an MRI of her head, and they found a tumor. Immediately my body went into shock. As someone who used to work in oncology, my mind went into the darkest place, fearing the worst. Somehow, when we went to see the neurosurgeon my mind was put at ease because he thought it was a benign tumor.

    Fast forward to surgery day 2 weeks later. A diagnosis of stage 4 glioblastoma. How can this be? How is this happening? My mom is such a healthy person, so full of energy, no real health problems otherwise. Shes only 65, and I have a 5 year old that she needs to see grow up!

    Our appointment with the oncologist is on Friday, but I am a total mess. I'm definitely trying to keep it together, but the thought of losing my mom...how can you deal with that?? I found this forum and saw some of the topics listed under brain tumors, and I have to admit that I have my been able to open one yet, afraid of what I'll read.

    I know we are all going through the same thing, but somehow I feel so alone. I am so scared. I don't even know if my parents fully understand the diagnosis.

    I don't know what to do. I can't sleep, can't eat. I try to keep my mind off of things by tending to my son, but my mind quickly drifts. I am not sure what I am hoping to get out of this...I guess some encouragement and knowing that I am not alone.

    --zeus
    Last edited by GBMsibling; 06-05-2018 at 12:14 PM. Reason: paragraph breaks

  2. #2
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    Hello, Zeus, welcome. I'm sorry to hear of your mother's GBM.

    For a family dealing with a GBM diagnosis, the three most stressful times are the initial crisis period, the initial treatment period, and after that, the periodic MRIs. You're in the initial crisis period right now, and it is a difficult and life-changing time. For most people this seems to last about a month before the new normal asserts itself.

    Focus on the present and try not to think too much about future possibilities. Remember that even with this beast, there are various bad things that can happen but they won't all happen to your family.

    Is your mother set up to start treatment soon?

  3. #3
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    Hi GBMsibing,
    Thank you for replying. She is due to get her stitches out next week Tuesday, and I'm hoping treatment very soon there after. In speaking with the oncologist in the hospital, the treatment will consist of radiation and oral Temodar. I am going to try as best I can to push for treatment to start next week. My mom is so very strong. Although she has been pretty healthy, she has had her share of issues. She is a great cancer survivor, has had her appendix removed and also her gallbladder removed. One of the things going through her mind is, why is this only happening to her.

    I know that I should be focusing on the present, but it is so hard not to think about the worst. Thank you again!

  4. #4
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    Ah, well now you are among all the other people it is happening to! Or has happened to. The experience of being a brain cancer family can feel like living in a bubble, with the rest of the world on the outside, not understanding what we're up against. Everyone on the outside's concerns can seem so petty when you're dealing with this.

    Is she being treated by a neuro-oncologist?

    I think it's usually considered safe to wait as long as six or seven weeks after surgery to start the radiation. From what I've seen (I'm not a medical person) they only start right away if there's galloping growth after surgery, which is pretty rare.

  5. #5
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    She'll be seeing a regular medical oncologist, the will be referred to a radiation oncologist. I am not sure what a galloping growth is, but I'm hoping that's not it. I will find out more on Friday, which I am dreading.

  6. #6
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    By galloping growth I just mean very rapid growth. It's really rare. I've only seen this happen twice in many years on the forums, so it's really not anything to worry about. Just trying to reassure you that waiting to begin treatment is not usually a concern.

    If she can be seen by a neuro-oncologist, even on a consultancy basis, that would be good because they are more experienced in and knowledgeable about GBM than regular oncologists.

  7. #7
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    Thank for for the advice. I am going to see if we have one in town. Has anyone heard of any alternative treatment options? Such as natural remedies?

  8. #8
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    Faced with the prospect of chemo and radiation, it's natural to wonder what the alternatives are. However, your mother is in the fight of her life and she needs the best proven treatments in existence. At this time the best proven treatments are the ones that are being planned for her: Radiation and Temodar.

    It's important to distinguish between alternative treatments, which are used instead of standard medical treatment, and complementary treatmens, which are used at the same time.

    Complementary treatments, such as herbal medications, are discussed in this thread here:
    https://www.cancerforums.net/threads...ements-for-gbm

    They are also discussed on the Virtual Trials website, here:
    https://virtualtrials.com/index.cfm

    Any herbal supplement or other complementary treatment needs to be approved by the treating oncologists. Take the bottle in and show it to them. Some herbals (as you'll see from the thread) can actually encourage tumor growth; others can interfere with the standard treatment.

  9. #9
    Hi Zeus,

    I am so sorry that GBM has entered into your life. I remember very well the day my dad’s GBM came to light. There are so many emotions that are experienced-shock, anger, devastation, etc. You will unfortunately find your “new normal” in adjusting to having a loved one with this disease. We took my dad to the hospital where I worked and I handpicked his neurosurgeon. But, GBM to many is a fast death sentence. Two doctors gave my dad a year to live. Well, my dad was 53 at diagnosis and he looked at me and said he was not done fighting. So, we went to the University of Michigan, where my dad was enrolled in a immunotherapy clinical trial. He’s done Temodar and CCNU, which are chemo drugs. He has done radiation twice, and has had a total of three brain surgeries. But, I’m proud to report that he is almost to his two year anniversary of his diagnosis. Maybe you could get your mom into a clinical trial. Also, as GBM sibling mentioned, a Neuro oncologist would be best for leading your mom through this diagnosis. My sister secretly records every doctor’s appointment and it helps my family understand the information, since we can go back and listen to the doctor. The appointments can be overwhelming. Note taking is helpful if you can’t record. I have heard of GBM patients following a keto diet, in regards to your natural remedy question. I know this is hard. It’s unfair. And so many people simply do not understand the GBM diagnosis. Hang in there. Prayers and positive vibes are being sent your way.

 

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