Glioblastoma

GBM IV, inoperable, REAL TALK!

Goldfish — Tue, 15 May 2012 13:31:06 GMT

Hi! I am new to this community, but I've noticed that we all seem to have similar stories and questions. I appreciate all of the positivity, but like so many of you, I just don't know what to expect. I guess I'll give you my story...

In November '11 my mom, 55, started having seizures. The first neurologist was one of those "don't get me started" stories... she wanted to wait to do an MRI until she wasn't having seizures any more! Thankfully, a medical professional in our family stepped in and got us in touch with a real neurologist, and long story short, she was admitted to a hospital in January '12. After tons of tests, a biopsy was our final option, and we found out that it was a Stage IV Glioblastoma, and it would not be possible to operate. Mom is a bright, sweet, lively person, so her initial reaction: "I'm going to beat it!" We all supported her, and still continue to encourage her positivity.

Unfortunately, like the rest of you, we (my father and I--the main caregivers) have the internet. While we are aware that there are tons of exciting treatments out there, and appreciate the dozens of e-mails we've gotten about vaccines and whatnot, however we can't help but notice that all of the cured/survivor stories start with, "After the surgery..." and we are realizing more and more that we were just not dealt a winning hand in this game.

Mom remains positive. We have an amazing support network of family and friends, are on lots of prayer lists, and we have done a reasonable job of shielding her from the sad truth of her illness. Her main symptoms include:

-Right sided weakness--which I've noticed is common, does anyone have left-sided weakness? Is there a reason that I'm noticing more right than left in these forums?
-VERY HIGH ANXIETY-- to the point that we can't talk loud or have more than one conversation or activity happening in the room and she becomes exhausted and gets tremors from too much stimulation
-Memory loss-- this is inconsistent. Some days we hardly notice at all.

She finished the standard 6 weeks of Temodar and radiation, and the MRI was inconclusive. She is now in a clinical trial testing 14 days of temodar per 28 day cycle with a couple other drugs. We go back for an MRI next week, and while I'm somewhat nervous, our oncologist seems to understand that she simply does not want to know the severity of her issues, but what he "doesn't say" leaves the rest of us with a lot of questions.

I guess our main questions are as follows:

- Has anyone else had to have "the talk" with a previously ignorant (for lack of a better word) loved one? We are afraid that she will soon realize that her condition is not improving, and aren't sure what we will say to her when that realization dawns on her.
- What do you think is appropriate to tell friends and family about her condition? I try to stay positive and upbeat, but I also feel that it is necessary to tell the truth and give them a full lowdown on her situation.
- Is anyone else involved in the trial that tests the cancer-fighting effects of drugs traditionally used to fight malaria, alzheimers, and diabetes? I'd like to hear how you think it's going for your loved one.

Thanks so much, I will do my best to post updates. I'm so thankful to be a part of this community. Please message me if you ever need to talk, I'm happy to listen and commiserate! All my best, GF

Blood Clots?

mattoxj — Fri, 11 May 2012 14:36:29 GMT

Our son, 38 yo GBM IV Feb. 10 2012, has had a craniotomy and after cellulitis with subsequent leg biopsy, now has developed a blood clot in his chest. 1) Is this common? 2) would his continuing to smoke affected this? 3) Any suggestions for "preventing" the next one? 4) any questions/answers that we have not thought of?

John
Tampa, FL

Glioblastoma 4

Amslone — Thu, 10 May 2012 01:16:54 GMT

My mom was diagnosed 4yrs and 1 month ago. I just wanted to say she is 70yrs old and lives a normal healthy life. Don't let doctors scare you to death with their prognosis. We have been there! Mom was told she would have less than a year. All I can say if you have a loved one that is diagnosed with this terrible cancer, your most important part... Is the surgeon! He needs to be the best or one of them. This will determine your outcome. The more that is removed the better the outcome. Moms treatment is temodar 5 days then off 24. Then all over again. She has been on it 4 years so far. She has a MRI every 6 -8 weeks since she was diagnosed . Mom still drives, walks , does everything. I know everyone's outcome is different, but there is hope !

Care at home

CCox — Fri, 04 May 2012 14:34:14 GMT

Hello, I am trying to understand the progress of this disease and what will be needed down the road, both physically and financially. I am looking for information on how people handle caring for a spouse when they can't walk, swallow or even communicate. Is this the point hospice comes in? What if the doctor says he has more thatn 6 months at that time and we are not eligible for Hospice? Who pays? My insurance company says they pay 80% of allowable fees. I thought Hospice was free. Also, if the things I need to help my husband are more self care than skilled nursing how is that handled? I can't lift him and we can't afford private nursing care. Do I ask family members to help? I don't think my insurance covers nursing home care either. It is all so confusing to me and I want my husband to think I am in control, because that greatly eases his mind, but I don't feel in control when I don't know how I can physically help him or pay for someone else to help him. What do people do? Also, is anyone out there scared to death of their loved one dying in the house? Maybe that is irrational but my 15 year old daughter doesn't want to sleep in her own room. This disease is so very scary. My husband has GBM 4 and was not offered surgery. He just completed the chemo and radiation. Waiting now for a month to start the 6 rounds of Temodar.

husband given a few weeks to live

catmother (arlene) — Sat, 28 Apr 2012 04:51:41 GMT

originally he was given a diagnoses of low grade glioma, but after a few weeks he completely lost his memory. couldn't understand anything. neuro surgeon said to bring him to ER. the MRI showed a glioblastoma. said he has a few weeks to live. that was 2-1//2 weeks ago. with steroids the swelling in his brain has gone down and he can communicate -- still can't find words -- he was in hospice for 10 days, but they considered him stable. monday he was moved to assisted living. one thing he hasn't forgotten is how much he loves me. last week he didn't know my name -- this week he does. i'm wondering what to expect. he's very positive and thinks he's going to get well. anyone know what symptoms he'll experience when the end is near? he's getting a lot of visitors from work -- just about every day. i'm wondering if god has given him this time to say goodbye.

My husbands battle is over

Nancy — Thu, 26 Apr 2012 00:32:36 GMT

My husband Jim went home to be with the Lord last Wed. He was at home where he wanted to be, with hospice care. Hospice was wonderful. He passed peacefully and we kept him pain free. It was a long hard 8 months, he lost the battle but won the war as a child of God and he is the lucky one now. Thanks to all of you who prayed for him and us. Keep on fighting this beast and lean on God and each other and accept all the help you are offered. Praying for a cure someday.

Novocure?

tbnick — Fri, 20 Apr 2012 10:06:28 GMT

My husband was dx with GBM April 2010. He had the standard treatment, and was in a clinical trial for a while. Most recently, he's been on Avastin for about 6 months. His recent MRI's looked good, but he had seizures on Easter. His NO looked back at his MRI's for the last few months, and realized that there had been slight changes from one to the next, which added up to more than a slight change when you looked back at two or three. It seems that he is having tumor growth, possibly with increased radiation effect necrotic cells, which he has a history of having. So, the Avastin is either slowing the progression, or not working. I'm trying to see if there are other options, or if we are coming to the end of treatment.

Has anybody done the Novocure treatment? I've looked at the results of the phase III clinical trial, and it doesn't actually look that promising to me, but I wondered if any one here had first hand experience with it.

Thanks!

Terri

Grade 4 GBM

Anonymous — Wed, 18 Apr 2012 14:18:09 GMT

grade4gbm.blogspot.com

Here is our personal story... If you relate please read and share your thoughts, hopes, and fears on our blog. We love to hear from others going through this :)

Mum's dx - how do you try to live normally?

Fight56 — Wed, 18 Apr 2012 01:29:38 GMT

Mum got diagnosed with GBM (they think it is IV) in the past week. Everything has happened so fast (~2 weeks since initial symptoms of weakness on left side). I found this forum hoping to see uplifting messages - I feel like I am more scared than ever. My mum is only 56 and I'm 25. I want to be strong for her, and my dad, and my brothers. But I'm so up and down. Sometimes I think we can beat this. Other times I'm just crying and crying. It scares me so much to think of life without her.

She starts chemo on Thursday. After a few weeks, radiotherapy for 6 weeks. My parents both want me to keep going to work. I just want to quit. I have money saved up. It's data entry, not a career. It hurts...I want to spend as much time as possible with her.

Insurance for GBM'ers?

Julie V. — Thu, 12 Apr 2012 01:50:33 GMT

My family has a problem we have not been able to find a solution to, so I wondered if I could ask the group for suggestions? Do any of you know of any way a GBM patient can get decent insurance so he can keep good doctors and hospitals?

Situation: My adult son with GBM has a family and has had a change in his insurance. The new insurance offered him is not acceptable (does not offer the regional cancer center, has a "gatekeeper," and no cap on prescription deductibles). His state has a high risk pool, but he does not qualify for it (since he has a job with insurance). Until the insurance change, he was going to his regional cancer center plus was able to get second opinions from a major cancer research hospital, which he expects the "gatekeeper" will not allow. How can a patient get decent insurance to keep top doctors and hospitals? I believe my son could pay perhaps even $18,000 per year, if he could only keep his good doctors and have a decent cap on costs.

Is there any insurance that you know of for GBM patients???

We are lost for a solution. Any comments or suggestions you could make would be appreciated!

Thanks!

Julie V.

New here

mattoxj — Wed, 11 Apr 2012 12:12:22 GMT

My step-son developed a GBM in February of this year. Had surgery and is now undergoing Chemo and Radiation. He was a bit of a character before surgery, now he is very difficult to deal with. Tried living with us, didn't like our treatment of him so moved in with his sister, husband and 5 kids. Got into an arguement with them and WALKED at midnight 5+ miles back to his house. This is where we are right now. I think 2-3 weeks of chemo/radiation to go. We get up at 5am (4 for my wife) take him his 6/8 meds. Wife (Mom) goes over to take him to chemo/radiation about 9am. I run around getting medicine etc. Back to his house with overnight meds at 10pm. Start all over again the next morning. Resperidone (2x daily) seems to be helping the "rage," but there are times when he will not stop repeating the same liar, cheater, name calling unexplained paranoia about his "stuff." There have been times when he has almost been lucid (can't seem to get vocab right, but...) and almost capable of a real conversation.

Thanks for letting me vent. Guide me where to put these comments.

John

BKM120 Clinical Trial phase 11

Bubbasgirl — Mon, 09 Apr 2012 00:40:43 GMT

Has anyone been in this trial.. they are putting my boyfriend in this trial. the chemo wasnt working that well... his 1st tumor had shrunk and within 6 weeks another one has grown underneath it. any info would be helpful. thank you

My cousin passed yesterday...

JuanML — Fri, 06 Apr 2012 23:20:24 GMT

Hi everyone! The most horrible news from Buenos Aires.
My cousin died yesterday. It just so painful.
He was 32 years old and starting a family with his wife. They got married just 2 years ago.
He was loved... So loved.
Thank you everyone in here for your support.

Refusing treatment

slpin — Fri, 06 Apr 2012 02:48:25 GMT

My mother was recently diagnosed with glioma grade 4 -- glioblastoma. We go to the doctors to discuss treatment tomorrow, but she might refuse treatment if it isn't a cure. Does anyone have experience with this and what it will be like for her if she does opt to go without treatment. Thank you.

New website

docsbydocs — Thu, 05 Apr 2012 05:38:23 GMT

Hello, to everyone on this forum. I am a neuro-oncologist, and I see patients every day in my clinic with brain and spine tumors. I wanted an outlet to provide my own content on brain and spine tumors, and so I created a website, docsbydocs. I am writing content for our site at the moment, and will recruit others in the field of neuro-oncology to do the same. If you are looking for specific, topic-driven content for brain and spine tumors, please check out my site at www.docsbydocs.com. It's completely free. We also take requests for articles that we would write and post to our site. You can reach us at info@docsbydocs.com, on Twitter at @docsbydocs or on Facebook. I hope we can help provide all information that you may seek.

Thanks!