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Glioblastoma grade IV

ncgrl84
Posts: 14
Joined: Apr 2012

I'm new here and I'm not quite sure how all this works. I guess I'm pretty much just looking for people I can relate with that are in similar situations. I'm 28 and as of April 6, 2012, I found out my 53 year old mother has a stage IV glioblastoma. Being very close to my mother, this has been extremely hard to swallow. Two months ago, my mother left for a typical trip to Ma. to visit her mom (we live in NC). She was perfectly fine when she left. She called me almost nightly while she was there, and about the third week in, she called me all upset because she kept forgetting and losing everything. She had just found out her mother has cancer and related it all to stress, and I agreed at the time. I went to visit her when she got back in town and that's when I realized it was much more than stress. She couldn't remember my name, much less perform her normal daily tasks. Driving was impossible... she got lost going to the grocery store she has been going to for years. I couldn't believe what I was seeing... My mother was falling apart. She knew something wasn't right, and I could see the frustration, but she just couldn't fix it. Every time she touched something, she lost it... her cup of coffee, cell phone, remote... She was a wreck, and I knew I needed to get her to the ER immediately. She's a VA patient, so I drove to the closest VA hospital that was 30 minutes away. When we got there, I explained the symptoms and they agreed to do a CT scan. After several hours of waiting impatiently, they came back with the results stating she had a tumor. They were unable to treat her there due to the lack of a neurosurgeon, and it being a weekend, they sent her home and scheduled her to visit the VA with a neurosurgeon that was two hours away that following Monday. The next day my mom was much worse. I decided to drive her to the closest hospital with a neurosurgeon on staff. They immediately admitted her and scheduled a biopsy. After several days they did the biopsy and confirmed my worst fears. They also said it's inoperable. The VA has decided to let her see doctors outside of the VA and are willing to pay for it, but it's a long process getting everything approved. Sometimes I think they are trying to kill her by making her wait, just so they don't have to pay for her treatment. She goes this week to start her radiation and she will be taking temodar simultaneously. She's still a mess and the dexamethasone is making her mean and moody as all get out. She's had a few violent spells and she's NEVER been the violent type at all. Honestly, I'm not really sure if it's the tumor or the meds. It's not pleasant, nonetheless. She cries daily and she's not the same person at all. Her personality is so different now. This has been incredibly hard on her and me. I've had to quit school to take care of her full time. I don't know what I'd do if I didn't have a husband to take care of me and support me. I can't imagine what other people go through that don't have the option of not working. I never imagined I'd be losing my mom at such a young age. She's my best friend. Most of all, I never imagined I'd have to watch her suffer like this. She's absolutely miserable and there's nothing I or anyone else can do for her. They've given her 6 months to a year... I'm assuming that's what most people with this diagnosis get. I'm terrified to see what the next 6 months to a year holds... I don't know if I can handle watching her get any worse and suffer anymore. It breaks my heart.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I am so sorry to hear about your mother.I went through GMB4 with my sister. I hate this cancer. It still seems like such a nightmare...I seem to play it over and over again in my mind. I lost my sister Oct 19th 2011. I lost that whole year, its as if life stood still and the cancer took over my world....
My prayers and thoughts are with you. This is a good site to go to. There are a lot of kind people on here that truly know how you feel.

ncgrl84
Posts: 14
Joined: Apr 2012

Can you please tell me more about the things you experienced with your sister. This is all new to me and the doctors have not been very helpful in informing me as to what to expect. How long did your sister live from the time she was diagnosed? What were her symptoms? So far it seems it's affecting my moms memory and moods. She has a lot of physical symptoms too... numbness throughout the body, headaches, burred vision, moments of "muffled" hearing. Most times it seems like she's in a daze; very zombie like. I do my best to keep her in good spirits. We go out and do as much as possible while we still can. I cherish every moment I have left with her.

Beckymarie
Posts: 358
Joined: Aug 2009

Sorry to hear about your mother. I lost my husband to GBMIV in 2010. It was a very hard 15 months (from time of diagnosis until he past). Please try to take care of yourself. This is a very emotional, exhausting time.
Becky

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

My sister lived 3 days shy of 8 months. She felt a few odd dizzy spells before diagnosis. Then one day passed out. That was the day we went to the ER and heard the ugly words brain tumor. From that day on she wasnt the same. She was totally with it pretty much to the end. She started to get forgetful, but I thought it was the stress of it all, because I was doing the same thing.
Her personality changed, but who wouldnt knowing your going to die. My sister and I were very close and she pulled away. She would get angry at me and I could not reason with her. Im a nurse and anytime I would said something as a nurse she acted like I didnt know what I was talking about. Decadron I think had a lot to do with the moods.
Radiation, chemo, low platlet, infections, sepsis and multi hospital stays is how it went for us. Riding a roller coaster was how it was for me, and I dont like them. Nothing went right.
But every tumor is diffrent and no story is the same.
It crazy scary and the worst thing ever. But for some reason its what you to are now having to face. Take it one day at a time. I remember feeling a little better once the treatments started because we were doing something about it. Love her and make every minute count.
Come on this site and vent, cry, screem or what ever you need, we have all been there.
Take care
Brenda

ncgrl84
Posts: 14
Joined: Apr 2012

Thanks for sharing that with me. I'm not ready to lose my mom and I hate knowing I have no control over this. Some days it doesn't seem real. She's all I have left and I'm scared to death of living without her. It's hard knowing I'm going to lose my best friend. A part of me hopes she goes quickly so she doesn't suffer, but the other part of me is selfish and wants to keep her as long as I can. All I can think about is how every holiday wont be the same. I've always spent every Christmas and Thanksgiving with my mom. It's driving me crazy.
To make things worse, I don't think any of the other family understands how bad this really is. Maybe they just don't care. I have an older brother that I haven't spoken to in years due to his drug and drinking habits... I thought he should know our mom is dying... I wish I had never told him. Now, not only am I caring for mom, but I have to deal with his stupid crap too. Ok, I'm done venting for now. :)

Fight56
Posts: 12
Joined: May 2012

ncgrl, I relate so much to you! I am 25 and haven't spoken to my older brother in years because he is manipulative and emotionally abusive. Only a few years ago, for a few years he would throw out all my mum's food because he had developed a "sensitivity" to the smell of it (he hadn't). My mum would cook in the garage to avoid pissing him off! Even using the microwave was a nightmare. This was only one of the things he did at this time. I ended up getting therapy and taking antidepressants that I use to this day. He only stopped terrorizing my family after he moved out cuz my parents bought him a house.

Suddenly he is back in my life with my mum's GBM diagnosis and I am trying to get along with him and it's so hard! He says he has changed, but my gut says no. His manipulative and abusive nature is still there, only under the guise of caring for my mum. He criticizes anyone who doesn't agree with him as "not caring for mum" or having no faith. He is especially harsh with my dad, who is already very fragile right now. I am scared my brother is going to take over the treatment decisions for my mum. It feels like this is becoming about him, and not my mum. It is hard to cope.

ncgrl84
Posts: 14
Joined: Apr 2012

Fight56, I swear you just described my brother exactly! My brother is also very manipulative and he's very violent. I feel like I have to walk on egg shells, or he'll explode and go crazy! I absolutely hate it!!! I hate living in fear when I'm around him... wondering what I'll do or say that will set him off. The best way I can describe his personality is narcissistic. My brother has been homeless or in prison most of his life because of his drug/alcohol habit and he EXPECTS hand outs from people. When he doesn't get what he wants, he gets violent and mouthy. I too took antidepressants for years and went through therapy. I finally figured out that I do great when I disappear and he can't find me. I was able to come off all the meds and lead a normal life again. Now that he's back, he tried to make me feel guilty because he doesn't have a place to stay or a ride to come see his dying mom... I have no pitty for him. My mom is my #1 concern, not him. I've even promised myself that if he shows up and shows his butt anymore, that I will call the cops. I don't have to worry about him making any decisions because I got a lawyer to make me power of attorney and she had a will made as well. I'm in control of everything because I know he doesn't have her best interest at heart. You and your father should make everything legal so your brother has NO say in what happens. Be strong for your mom; protect her from him. So when was your mom diagnosed? How's she holding up? Was she able to have the tumor removed?

Fight56
Posts: 12
Joined: May 2012

Mum was diagnosed mid-April. It was unoperable because of location (got a second opinion from Duke, they agreed). She starts Temodal + radiotherapy next week. She has been getting zero sleep since on the dexamethasone (I didn't know), so we went to the doc to get her sleeping pills today. Hope that helps with her fatigue. If she is too weak, she won't be able to take the chemo.

I think my brother does care for my mum, but he is so mentally unbalanced it can make things much more difficult. My parents always wanted the best for him, but they end up enabling him. That crap he pulled with my family, he would never dare do to other people.

It wouldn't be so bad if he at least kept the arguing away from mum, but he starts arguments while she is there (then tells her not to listen to negativity...). It can bring my dad to tears.

He's helped a lot with researching anti-cancer supplements and getting mum to take them. He was pissed yesterday when we met the oncology dietician and she said we need to stop all the supplements (except calcium + vit D) when mum starts the radiotherapy + chemo. He said all this stuff on the ride back home. How the supplements were the reason she was getting better. How the chemo was going to destroy all her cells, both cancerous and healthy ones. How she was going to turn into a zombie (I kid you not). Like terrifying my mum is going to help her :/ I get the feeling that he paints himself as the savior, and the rest of the family are bystanders. Maybe our brothers should meet lol...

We still need to write up an Enduring Power of Attorney. My dad wants me to help with it. I guess I've been avoiding it because of all the implications that go with it.

ncgrl84
Posts: 14
Joined: Apr 2012

My moms is also inoperable due to the location. We just found out today my mom also has lung cancer as well. They are going to biopsy it, but the doctor seems certain it's stage 4 as well. He says it will be hard to treat because it's a different kind of cancer than her GBM. He explained every cancer has to be treated differently and since she's about to start her chemo and radiation, that he can't do surgery on her lung... She's been crying non-stop since we left the doctor, I feel so bad for her. She's terrified and there's nothing I can do... I do my best to comfort her.

Unfortunately, your brother is somewhat right about the chemo. Chemo is designed to stop cells from dividing (cancer cells are nothing more than rapidly diving cells). The chemo cannot discern the difference between normal cells and cancer cells, therefore, it will affect all the cells in her body. I don't know much about the side effects of chemo, other than what I've read. It affects everyone differently. Some people handle it really well, while others do not. I've read it can weaken the immune system, cause nausea, vomiting, weakness, constipation, fatigue, and headache. I'm not sure what kind of supplements he's giving her, but I imagine they won't do much good. If there was a miracle supplement that cured cancer, everyone would know about it. In fact, I've read that Temodar can react will Vitamin E and a few other things. It's best to follow the doctors orders precisely for the best outcome.

You're right, scaring your mom definitely is not going to help the situation at all. My step-dad does the same thing to my mom. I try to shelter her a little and only talk about the positive things... then he comes along and tells me not to "blow smoke up her a**". I feel telling her some of the negative things serves no purpose except for depressing her and she's already depressed enough. He makes me so angry when he tells her stuff she doesn't need to know. I'd rather talk to her about her treatments instead of reminding her that the doctors told her she's going to die in a year or less... but he feels the need to constantly remind her of that. I feel he just adds fuel to the fire. He has no compassion and yells at her about crying too. He absolutely hates it when she cries and he'll tell her to shut up and he doesn't want to hear it. I've tried to get her to move in with me to get her away from it, but she won't. I guess she's dealt with him for 17 years, she figures she can't leave now.

Feel free to email me anytime at sunshine_blueskyz@yahoo.com I can't always get on this site, it gives me problems. Just let me know who you are in the email. :)

sippican
Posts: 6
Joined: May 2010

NCGRL, I just want to say , Stay Strong!! it sounds like you have your mom's best interests at heart and none of the other family members do-each with their own agenda. You are doing all that you can for your mom and you can live with yourself always knowing that you did the very best for her. Hold your ground-especially legally-you can make the others feel they are contributing with their research-they want to feel needed but may not be sound decision makers when it comes to the legal matters. Do you have a friend who can be a supporter and advocate for you?The hospital may have a supportive care services or palliative care who can help you meet others in caretaker positions like yourself or put you in touch with community resources. My husband has had GBM4 since Nov 09 with a recurrence in Sept 11, both operable tumors but similar personality changes as your mother-cannot deal with personal finances etc .very overwhelming to him, acts mean on decadron, loss of interest in those around him, severe short term memory problems, not wanting to let go of control-we are in foreclosure and I have had a lot on my plate taking over everything. I am proud of him for continuing to go to work every day-I don't know what I would be like if I were in his shoes. This has been a marathon of trying to stay positive for our family- I hope you have a faith in Christ that you can lean on. Without faith in His plan it is just too hard to understand why this is all happening. I pray everyday to stay strong and ask for guidance-that is my prayer for you.

Poohtie99's picture
Poohtie99
Posts: 5
Joined: Mar 2012

Sweetie, believe me...I know your pain..my own family is going through, this same ordeal with me...I was just diagnosed on March,27th, this year, one month exactly from my 52nd birthday. The best I can ask is,she a strong woman? If she isn't...she is going to need all the support she can get. The key to SURVIVING this is treatment...NO STRESS,good nutrition and keeping a VERY positive attitude, it's okay to be scared. I would recommend to get in touch with someone, that HAS and is a long time survivor...yes, there are women that have and still do survive this and I, myself, have made this my person challenge to be one of these people. sure, I can't drive right now, but, that don't mean that in September, 6 months after surgery to take a 3X 4cm mass from my brain, that I won't try again. I was then, the woman that was going 280 mph with my hair on fire and my rear catching, now I am allowing myself to heal and recover...that's my plan now.

Scottgri
Posts: 44
Joined: Mar 2012

I just had a bunch of 1 year anniversaries: GBM diagnosis, surgeries, and first sign of hope! I am back to work and living life as normal again, but I really do know how lucky I am. I found hope at Duke University. They got me enrolled in a trial that is working for me. No sign of any kind there is more/new tumor growth.

2011 was a roller coaster year, from initial doc telling me 9 months, I found a new doc, to feeling normal again...with a lot of scary stuff in between. The past 4 months have been really good, but some of the treatment was really hard on me about 6 months in.

I am NO expert, but there are a lot of variables that can make a difference. I think your outlook is the most critical. I was lucky they found it, lucky they could get to it, lucky to be sitting here typing this. Hard to believe a guy that used to have a grade 4 GBM considers himself lucky, but I sure am. My family and I had some really hard times in the beginning, now we barely mention it because I am back and winning the fight!!!

Poohtie99's picture
Poohtie99
Posts: 5
Joined: Mar 2012

Yes, we that stand and fight and shake our fists at this illness,are lucky and we will survive and prevail!!!...go get em, Tiger!!!!

Scottgri
Posts: 44
Joined: Mar 2012

Double guns to you GBM!

granddaughterofGBM4
Posts: 2
Joined: May 2012

I am also new here and I am so sorry to hear about your mother. This is a (I know I don't have to tell you) but such a monstrous disease. My grandmother (who basically raised me) was diagnosed Feb 4 with a GBM 4 after much of the same symptoms. We actually took her in because I thought she was having a stroke, her left side went completely paralyzed and she had been forgetting things for a months or so. She is 74 so the doctor's assumed it was age related memory issues. When we were in the ER, they performed a CT which showed a large tumor in the parietal lobe, they initially told us it looked like an abcess but I know they knew that wasn't the case. The doctor came in on the 4th and told us what he suspected it was, prior to biopsy, and that most people would just go home and get their affairs in order. My aunt and I COULD NOT accept that as the end. I began calling MD Anderson Cancer Center as well as Moffitt Cancer Center. By Monday Feb 6, I had her appointments with both cancer centers for 2nd and 3rd opinions. On Wed Feb 8, Moffitt gave us a LOT of hope, stating that their were many 4,6,8 year survivors. Our appt with MD Anderson of Orlando was Thursday Feb 9 and we met our angel here on earth, Dr. Nick Avergopolous. He really is a leader in his field and a man among men. He took us in and we felt like my grandmother was his only patient. He got us in with an exceptional (although not quite as sweet) Neurosurgeon there in Orlando and her surgery was set for Valentine's Day February 14th, 2012. Surgery went well and they got 100% of the tumor. We all felt like we had already beat the odds because they had told us they rarely are able to get 100% of the main tumor. However, we were lucky due to the location of the tumor and the Lord blessing us with great doctors!!
She was discharged from MD Anderson of Orlando on Feb 17 due to cruising through surgery so well. This is where our frustration began. We live 6 hours from Orlando so daily radiation treatments were going to have to be done closer to home. The doctors in Tallahassee (while some of them are VERY nice), do not have a sense of urgency even in the case of such a terrible cancer. It took weeks to get the appointments we needed. Dr. Nick in Orlando was upset with the amount of time it was taking to get everything started in Tallahassee to the point that he was ready to tell us to come down to Orlando to do it. Nevertheless, after many phone calls and visits to the office and one very important phone call from Dr. Nick, we finally had appointment set to see both the Neuro-oncologist and the Radiation Oncologist. We are now on treatment #17 of 32 total Radiation treatments. Her hair has mostly fallen out, the nausea has reached a peak, and she is in a lot of pain(ie headaches and such), She is ready to give up. She keeps reading online of how so many do not survive. I keep telling her every positive thing I can think of, but I cannot imagine how this makes her feel. It is just so frustrating, I do not want to push her to keep doing this treatment that makes her feel so sick but I am not ready to give in to this cancer!!
I will be praying for your mother. MD Anderson doesn't talk to you in numbers, in terms of prognosis so we haven't been given a 6 months to year but we are in our 3rd month of this awful diagnosis and I can certainly empathize with all you are going through. Oh and thank you for allowing me to vent...lol, I sort of rambled there for a bit.

ncgrl84
Posts: 14
Joined: Apr 2012

I'm ecstatic that you're grandmother was able to have the tumor removed. I really hate hearing she's having a tough time tolerating the treatments. Continue being supportive and let her know how much she means to you and how much you love her. Tell her how strong she is and remind her how far she has come! I've learned that you (as a supporter) have to be strong and uplifting when they are not able to see the positive or good in anything anymore. You may not see it, but a few kind/positive/uplifting words and actions go a long way.

Feel free to ramble and vent anytime! Lord knows, I've done plenty of it myself!!! This is not an easy thing to deal with and nobody should have to do it alone. I wish the best for your grandmother. I truly hope she pulls through this treatment and gets better. Also, feel free to email me anytime at sunshine_blueskyz@yahoo.com. Sometimes I have a hard time getting on this site.

siobhan1234
Posts: 2
Joined: May 2012

Hi,I'm so sorry to read about your mums illness,it is a devastating time and so hard to deal with the ever changing symptoms and emotions. I lost my mum to GBM4 11 weeks ago,she was my best friend and we shared life together. She was also hugely important to my 2 little girls,taking care of them since they were babies and just always just simply being there. It was the scariest,most anxious filled time of my life when I heard the diagnosis and did research online.It is an exhausting,stress filled time and it is so hard to juggle everything. We also shared some beautiful times together in December and January and I cherish those memories. The site that was invaluable to me in educating myself on what to potentially expext was www.brainhospice.com Please remember though that the symptom timeline varies from person to person and isn't supposed to be taken as definately what will happen. however,it definately prepared me and helped me see key stages and phases and prepared me with questions for doctors and medics. My heart goes out to you,I wish you courage,strength and beautiful moments amid the heartache and this awful disease.

siobhan1234
Posts: 2
Joined: May 2012

I hope you have found some support through family and friends,it's vital.

alexyj23's picture
alexyj23
Posts: 7
Joined: May 2012

I am 26 about to be 27 and we found out early April that my dad has stage 4 Glioblastoma Misfortune (or however you spell it). His is not operable and he was given 6 months to live. Please stay in touch with me and let me know how you and your mom are doing. The slightest thing will set me off crying. This is such a hard thing to deal with with loved ones. One day I will be hopeful and the next my mind drifts and I start thinking about the end. I would love to hear from you. Stay strong, that's all you can do.

auntnita611
Posts: 3
Joined: May 2012

I can feel every one's pain but I can also pull from every one's strength, My 12 year old nephew was dx;d with glioblastoma stage 4 by second opinion yesterday. I am a health care professional and did a long stint in Hematology Oncology at the University of PA; However I have never worked with children only adults and I've seen the best prognosis and I've seen the worst. I've been looking for ways to deal with this the best I can BUT this is the hardest test I've ever been giving even with my mother passing away on my lap I don't know how to accept this. His tumor was removed before he was diagnosed, which the doctors say was the hardest part in attacking this cancer , but I've seen what chemo and xrt does to adults so I can not imagine what it can put a child through. I stand strong on my faith as well as his parents but yet and still this is very scary; and we haven't even been able to tell him what's wrong with him because he's just to happy and full of life NO side effects of the surgery other than migraines here and there from the craniotomy. I read so much about this illness and I don't want to believe more than half of it. Is it anyone out there that could share some coping skills hat I can utilize and pass on to my family?

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