Hope for those w/Recurrent Astrocytoma

Hi all. My name is Deborah.

I am the girlfriend/support system cheerleader for my 32-year old boyfriend who was diagnosed in September with Anaplastic Astrocytoma Stage IIIB. Within a couple of days of his diagnosis, he was flat on his back in the operating room getting surgery. The good news is that the surgeon was able to get all of the tumor. The surgery went well albeit with some of the normal consequences of such a surgery such as confusion, slurred speech, etc. He began an aggressive course of radiation treatments within a week to ten days after surgery. He completed those in October.

In early December, he began to have headaches and nosebleeds that were reminiscent of the early symptomology of what he suffered before the tumor was originally diagnosed. His onc and neurologist decided to take an aggressive diagnosis evaluation period. A number of tests later (included the MRI) seemed inconclusive. Something was causing swelling in his head, but we didn't know what. When he failed to respond to a five-day antibiotic course, the doctor said opening him up again was really the only option. When they went in last week, they found that tumor growth had begun over the scarring tissue. It had also started to grow near the back of his optic nerve which was contributing to some of his own symptoms (blurry vision, dizziness, etc.)

I'm sharing this all with you because the doctor told my boyfriend that he has five to seven months to live. He's devastated. I am a firm believer that no human being comes with an expiration date stamped on their feet. Right now, our support base is very small. I'm hoping if anyone has had any similar experiences to this and beat the odds (like I know I've seen some of the other stories shared in the forum), they would share them. I'd like to show them to him with the goal of getting him to believe it's okay to have hope and that a positive attitude is the key to beating this because he is at the stage where he thinks he's living on borrowed time and that nothing can be done so he just wants to give up.

At this current point in time, my goals are trying to help him deal with his overwhelming feelings of despair and negativity, getting him connected to people who have been through things like he's been through so he knows he isn't alone, and then pursuing a second opinion.

Any advice, comments, or even random thoughts would mean so much to me, especially anyone who has dealt with recurrent Astrocytoma and can offer any insights.

Thank you in advance.

~Deb

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  • DebBtheGF;7609 said:
    Hi all. My name is Deborah.

    I am the girlfriend/support system cheerleader for my 32-year old boyfriend who was diagnosed in September with Anaplastic Astrocytoma Stage IIIB. Within a couple of days of his diagnosis, he was flat on his back in the operating room getting surgery. The good news is that the surgeon was able to get all of the tumor. The surgery went well albeit with some of the normal consequences of such a surgery such as confusion, slurred speech, etc. He began an aggressive course of radiation treatments within a week to ten days after surgery. He completed those in October.

    In early December, he began to have headaches and nosebleeds that were reminiscent of the early symptomology of what he suffered before the tumor was originally diagnosed. His onc and neurologist decided to take an aggressive diagnosis evaluation period. A number of tests later (included the MRI) seemed inconclusive. Something was causing swelling in his head, but we didn't know what. When he failed to respond to a five-day antibiotic course, the doctor said opening him up again was really the only option. When they went in last week, they found that tumor growth had begun over the scarring tissue. It had also started to grow near the back of his optic nerve which was contributing to some of his own symptoms (blurry vision, dizziness, etc.)

    I'm sharing this all with you because the doctor told my boyfriend that he has five to seven months to live. He's devastated. I am a firm believer that no human being comes with an expiration date stamped on their feet. Right now, our support base is very small. I'm hoping if anyone has had any similar experiences to this and beat the odds (like I know I've seen some of the other stories shared in the forum), they would share them. I'd like to show them to him with the goal of getting him to believe it's okay to have hope and that a positive attitude is the key to beating this because he is at the stage where he thinks he's living on borrowed time and that nothing can be done so he just wants to give up.

    At this current point in time, my goals are trying to help him deal with his overwhelming feelings of despair and negativity, getting him connected to people who have been through things like he's been through so he knows he isn't alone, and then pursuing a second opinion.

    Any advice, comments, or even random thoughts would mean so much to me, especially anyone who has dealt with recurrent Astrocytoma and can offer any insights.

    Thank you in advance.

    ~Deb
    Dear Deb-
    Two years ago, my son was diagnosed with the same brain cancer as your boyfriend. He had the initial tumor completely removed, underwent radiation treatment for 45 days and also started taking Temodar, which is the most effective chemo for this type of cancer (thus far). My son also has a wonderful girlfriend that I adore, so I feel that can relate to your frustration and hope. First of all, I don't mean to put down his doc, but when reading your story, I was surprised that their MRI's PET scans could not be read properly. Secondly, Temodar ( a pill that is pretty well tolerated by my son) is widely used. Secondly, to give you some more hope, my son has developed two more tumors, and each inoperable, but were treated successfully by Gamma-Knife radiation, that pinpoints just the tumor and thus reduces the amount of damage to surrounding tissue. We are fortunate to have a great Cancer Institute in town with some of the finest Docs ever. I think that is number One! I don't know where you live, but I would be glad to search for close centers that have an excellent reputation. It is key. Also, there is a ton of financial help to get him there, house him, etc. I have links for those also, so don't be afraid to go where ever you think will be best! Don't wait. My son has since then traveled to Asia and Guatemala and continues his education. He is expecting to graduate this semester despite his initial prognosis of 14 months. Don't give up and contact me anytime. God bless you both. Jo
  • Jo: God bless your son's continued perseverance through his challenge, and that he has continued his studies. He is a special guy, and if he wasn't before, he certainly is now. How is he doing, and please do tell some of his studies abroad. What are his interests? You must be so proud of him as you are anxious about his condition, Jo. How is your social support?

    John
  • Hi Deb,

    I completely second what Jo said. And I'm similar to her son in some aspects, having been diagnosed with a tumor right after I graduated college at 22.

    You almost definitely need to find a better place for treatment. If you live up in the northeast, there are tons of places. If you're more southern or central, Duke University is a great place to go, and that's where I've been getting help. And if you're out West or near Texas, there are some superb neuro-oncology facilities, with doctors who specialize in helping people like your boyfriend.

    Ok, so first of all, you are correct. There's no time stamp and for a doctor to presume that he can only live 5-7 months is ridiculous. Yes, according to their statistics and patient cases, there may be 5 months or 7 or 20 or 40 months or 20-30 years. (I'm really hoping for you and him the latter!) But regardless of the time scale, he can't just give up and say OK. It's definitely hard to fight through it, but as my doctor says, once you give up, it's all over. If he wants to live, if he truly wants to beat this damn tumor, he has to stand up to it. If he has the will to become a survivor and shut that thing down, he has to get out of bed, and move and dance and exercise his mind as much as he can. I know he may have limitations right now, but they shouldn't be mental limitations, only physical.

    Now, let's just say that he does have a short time here. I constantly feel the same way, that "I'm living on borrowed time." But I don't want to waste that time that I'm able to live by wasting away and doing nothing. I want to enjoy every second of every day with that time. If you can, remind him of this. He MUST use his time on this earth, whether he's going to live until tomorrow or for 50 years, as best as he can with people who love him and doing something that makes him happy. And you seem like such a loving girlfriend, so he's quite lucky to have you by his side. He doesn't have to go climb Mt Everest or go skydiving (if he can't) in order to regain his life, but just has to simply appreciate who's around him and whatever he's doing. And he can't give up.

    I have a possible recurrence now, but my goal is to just work through it and fight it with every ounce of energy I have. While going through treatment initially, I started working out more, got a job, got into medical school, researched as much as I could about alternative treatments (nutrition, diet, anything!) and maintained a loving relationship with my girlfriend, Why? Not because I wanted to brag about it or pretend like I'm awesome, but because I love my life and I love everyone in it. And I did not want to lose it to something like a bunch of stupid cells that felt like mutating. It's about control, and if he feels that he can take back his life and take control, then that is the first step to beating it and proving his doctor wrong.

    Good luck and all my love to you both as you go through this challenge. I hope anything I said can help, as I'm speaking from what I thought about my experience and what I think helped.

    Much love,
    Mike
  • draym104draym104 Community Member
    Glad to have run into this forum, and on these posts. Thank you especially for yours Mike -- it's so hard to fall into the trap of negativity with all of the doctors and statistics out there for us brain cancer patients. Just started my fight with glioblastoma multiforme (grade 4), 2 more weeks of chemoradiotherapy to go. The unknown is brutal.. but I just keep trying to remind myself that so long as I am here, my life is not over.

    Mike (or anyone else for that matter dealing with or with knowledge on brain cancer), have you unearthed anything worth exploring when it comes to nutrition/diet/complementary treatments? Most of the research I've done is coming up either not specific enough to brain cancer, or not founded enough for my taste. So far, I've been focused on eating and living better in general, trying to avoid foods that promote inflammation and cutting out the sugars/foods high on the glycemic index. If anyone has more to share, I (and I'm sure many others) would greatly appreciate it :)

    This is war, and we will be victors.
    Denis
  • draym104;8501 said:
    Glad to have run into this forum, and on these posts. Thank you especially for yours Mike -- it's so hard to fall into the trap of negativity with all of the doctors and statistics out there for us brain cancer patients. Just started my fight with glioblastoma multiforme (grade 4), 2 more weeks of chemoradiotherapy to go. The unknown is brutal.. but I just keep trying to remind myself that so long as I am here, my life is not over.

    Mike (or anyone else for that matter dealing with or with knowledge on brain cancer), have you unearthed anything worth exploring when it comes to nutrition/diet/complementary treatments? Most of the research I've done is coming up either not specific enough to brain cancer, or not founded enough for my taste. So far, I've been focused on eating and living better in general, trying to avoid foods that promote inflammation and cutting out the sugars/foods high on the glycemic index. If anyone has more to share, I (and I'm sure many others) would greatly appreciate it :)

    This is war, and we will be victors.
    Denis
    Hey Denis- One of the best resources that my son and I found was a book by David Servan-Schreiber. It's title: Anticancer- A new way of living. David was a neuroscience researcher that was diagnosed with brain cancer. He decided to use his skills to find ways to "ward off" future cancer cells. It's a pretty good read. I also was talking to a Dad (that is a physician with a son with brain cancer) through Immerman's Angels (Another resource for you) and he also thought that this was one of the best books out there. Jo
  • Hi Jo! Thanks for the response. I have read Anticancer and really appreciated it- I'm already making some changes to my nutrition accordingly. I'm now currently reading "Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About" by Ben Williams, which so far has been a great source of empowerment when it comes to my treatment. Though this author's experience was with a diagnosis of Grade IV GBM, it may be useful to others in the Brain Cancer boat. I'll be starting a regime of supplements in a week (my oncologist insists on my waiting until after the chemo/radiation before starting any supplemental treatments, as he worries for the side effects). I'm hopeful to extend my life to at least a few more years by being proactive...
  • draym104;8581 said:
    Hi Jo! Thanks for the response. I have read Anticancer and really appreciated it- I'm already making some changes to my nutrition accordingly. I'm now currently reading "Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About" by Ben Williams, which so far has been a great source of empowerment when it comes to my treatment. Though this author's experience was with a diagnosis of Grade IV GBM, it may be useful to others in the Brain Cancer boat. I'll be starting a regime of supplements in a week (my oncologist insists on my waiting until after the chemo/radiation before starting any supplemental treatments, as he worries for the side effects). I'm hopeful to extend my life to at least a few more years by being proactive...
    Hey Denis- I think that you are on the right track and I agree (and I know my son does also) that the information regarding nutrition/ supplemental treatments is severely slim. My son has been trying to be proactive also and has used quite a bit of different supplements, used a nebulizer with silver, grows his own wheat grass, uses juicer with all organic veggies daily. While we were at his treating hospital (which is a Cancer Institute), we stopped to grab some tea at the "Dunkin Doughnuts" stand in the lobby. Dunkin is a big sponsor of the hospital, but yet we noticed that everything they sell has sugar in it! My son and I discussed how little information on nutrition the hospital provides to it's patients. I suggested to my son that he create a packet and presentation based on what he has found about the importance of nutrition and see if he can get more info out there to patients and employees. He agreed and will prob start on this project. I love your idea of sharing info. I will post stuff as I become aware. Looking forward to hearing more about what you discover as well!

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