Living with a Brain Tumor

The Journey of a Grade 4 GBM

Anonymous — Wed, 18 Apr 2012 13:43:29 GMT

http://grade4gbm.blogspot.com/

I would love to hear back from some of you who are going through this as well... feel free to post on my blog. Thanks for listening.

Tired and cold

Sus — Sat, 14 Apr 2012 19:53:24 GMT

First, I still want to say that Bob is feeling pretty good and continues on his cabinetry project in our bedroom to finish the reno.
But...he seems to be growing more tired than normal. His body always feels cold to the touch and he complains of being cold all the time.
I can also see him becoming more and more forgetful. For instance, he will ask me a question and about an hour later, he will ask me same question.
Anybody out there have had this happening to you?

what should i do!!!!!!!?????????

Anonymous — Thu, 12 Apr 2012 23:14:09 GMT

I was 19 when they told me i had a pitutary brain tumor but i didnt need surgery it was too small then it got alittle bigger then back to small im 25 now im still losing my hair,my skin on my right breast was secreting and my skin was coming off. All my doctor wants to do is medicate me then take me off when its smaller then not follow up for a year or more. My left eye wont stop twitching and the pressure in my head feels like my eye balls are gonna pop out. Please someone tell me what can i do. I just had mri today

Research on inexpensive diabetes drug that may fight cancer

PennyL — Sun, 08 Apr 2012 06:19:27 GMT

Though this article doesn't mention brain tumors specifically, it does look interesting and promising.

http://www.cnn.com/2012/04/05/health/diabetes-drug-fights-cancer/index.html

New website

docsbydocs — Thu, 05 Apr 2012 05:47:41 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!

Wow: Stepping into a New World

Anonymous — Sun, 25 Mar 2012 02:08:57 GMT

Hi everyone,

My husband had a large brain tumor removed last November 29th. His surgeon did not expect that he would make it through, but he did. I am currently working on my masters degree in Psychology, so I understand many of the cognitive problems associated with his condition; also the neurological ones. His neurologist suggest that he should view this as similar to a person who has suffered through PTSD. This is understandable, however; is there any sort of time-frame involved in how long it takes for the brain to heal? I know this varies, so I guess what I am asking is since he had a toxic clonic seizure; due to the tumor, and is now on seizure medication, will his ability to drive come back after the 6 months of taking this medication? Is there anything that I can tell him that will help him to understand that he will get better, that can be only told from the viewpoint of a survivor? He did not have a cancerous tumor and all indications are that he will get better with time; yet he has others issues now, high blood pressure, anxiety/panic disorder, and hardening in the bottom of his heart. He just turned 50 in February and is a very Spiritual man. Any advice would be so very much appreciated. Thank you and God Bless!

Help needed for Grandpa

GPA has tumor — Sun, 18 Mar 2012 02:05:21 GMT

My Grandfather just found out he has a Brain Tumor. He is 79 yrs. old and takes care of my Grandmother who is being treated for Leukemia. After receiving the news he wanted to come home and act as if nothing is wrong. He has not had a biopsy and is very afraid to have it done. Can someone please explain to me what he should expect. Please be completely honest. I want to have as much information as possible when I go to him and explain why it is very important to find out whether it is benign or malignant.

Face rash

Sus — Sun, 11 Mar 2012 01:44:30 GMT

Hi all.
Bob is doing well and will be reaching the 6 month mark since he was diagnosed with GBMIV. He is responding well with the Temodar and each month his ON is very pleased with his progress.
Today, as he was shaving, he noticed that his left face had a some red spots. By the end of the morning, he his entire face was completely covered with this rash.
Can anyone tell me what may be going on and if anyone has had this reaction from the drugs he takes (even after 6 months).

question

valia77 — Wed, 08 Feb 2012 17:57:01 GMT

hi my name is val.. i just wanted to ask a few questions. i am 34 years old and just got diagnoesed w/ gliablastoma.i i ve been doing research but it scaring me cause it gives u survival rates. i was operated in nov 2011. the dr got about 90 % of the mass out. Is that a good thing?never had any sezures. just headaches. tomorrow is my last day of radiation and last night was my last nigjt of temadar.. my scan is march 8th how does everyone cope with the waithing????

Home Safety

Vassarri — Sun, 18 Dec 2011 14:27:51 GMT

I'll be starting my Temodar tomorrow..

But I was told by one nurse that if I have a pets that could possibly drink
from the toilet it could kill them... flush 2-3 times... yadda.

I've not found any information about this afterward... I'm living with family
now and need some clarification. I was considering putting in another bathroom
for them so I'd have my own area.

mindless eating

Linda S. — Sat, 10 Dec 2011 18:46:39 GMT

I know my husband is probably bored, hanging around the house but he eats too much. I hid the choc. chips & pumpkin seeds that he makes his trail mix with (partially) and he found them & eats out of this huge 'jug'. I've tried prtioning it into baggies & he gets mad; also when I hide the big jug he gets furious. Other than that, he's pretty placid. I'm worried about the gut he has developed. Okay, so I won't buy the stuff anymore but it's making me crazy. I'm the bad guy always. Help!!!

After treatment

Sus — Thu, 01 Dec 2011 20:04:36 GMT

Good Morning.
My husband, Bob, just completed his radiation and Temodar treatments. He was doing well up until the 4th week when he hit a wall. He was tired, lost his energy quickly, kept to himself, bad taste in mouth.
Now that he finished, he is getting sick to the point of vomitting. He doesn't have any energy at all; he aches all over and has headaches. He has excessive saliva build up and an intense sense of smell.
Others, how did you handle the after treatment process? Is this normal and when will he start feeling better?
Thank you and God Bless.

Help me understand my Mom

CaitlinNicole — Mon, 24 Oct 2011 11:44:23 GMT

August 18 2011 I took my Mom to the emergancy room after a week of her falling asleep all the time and having blurred double vision. They did many tests on my Mom and after bringing her to the ICU they told me she has a brain tumor on the lower right side of her brain. My Mom has been in the hospital since then and has a biopsey and several CT scans and MRI's. They told us it was lymphoma and they needed to agressivly treat her with steroids and chemo. In the past week my Mom refuses to see any family and thinks my Dad is going to kill her. She yells at family and friends for calling her or trying to see her and acts like we did something wrong or she doesn't know us. She has since then removed me and my brother from being her power of attorney and now the nurses will not give us any information. My Mom doesn't even know who she is anymore and I can't believe they are going to listen to her. I feel like my Mom is slowing dying and I'm only 22 and I still need her and know one will help me. Please help!! Also I forgot to mention she has had to be put on a pacemaker and have a port in her chest for chemo.

Anyone else have a brain stem tumor?

Lk — Wed, 05 Oct 2011 04:10:42 GMT

I was dx with a brain stem tumor June 2010. No growth for a year. It appears to be slow growing. Weird thing is there's no mass effect but I have these crazy symptoms. Morning headaches with just feeling off balance. Usually it gets better as the day goes on. Sometimes it feels like so much effort to hold my head up and it feels like my jaw and tongue can't relax. Feel a pressure in my throat. Nobody knows much or can do much bctreat isn't really an option since it's on the brain stem Its weird though how the symptoms are worse some days than others. Is there anyone else with the same thing?!! There are so many unknowns just want to hear if anyone has a similar experience. Thanks. Ent

GBM + Driving / Auto Insurance

Anonymous — Tue, 06 Sep 2011 01:28:23 GMT

My husband had a GBM resected "successfully" on 7/27/11. He is currently taking Temodar (chemo) 7 days/week until 10/7/11 and receiving radiation 5 days/week during the same period. Never been in the hospital before---still has his tonsils. Start big, eh?

Anyway, his neurosurgeon said ten days after the surgery, when my husband got his staples out of his head and the pathology report, that he is okay to drive. Specifically said for us to go to a parking lot and have him to drive make sure his reaction time was good, etc., and, if so, he's good to drive. Every thing checked out A-OK with the test drive, and he has made a few trips to visit family, etc., withing about 6-10 miles, max. He is wanting to get out more, and go farther, and I have concerns about auto insurance, should he have an accident, even unrelated to the medical situation.

He's never had a seizure, before the surgery or since. He was on Keppra as a precaution from the time of diagnosis on 7/19/11; doseage was reduced over two weeks with him going off it completely on 8/27/11. No problems.

Does this condition and/or the medical treatment put him in a high-risk category for rates on auto insurance? We live in Missouri and have full coverage with State Farm.

Are we legally obligated (by contract as an insured) to inform our carrier of his change of health, particularly this diagnosis, or do the HIPAA laws protect us from having to disclose that kind of information? I would HOPE that with his doctor saying he is okay to drive that would be sufficient, but hope won't pay for an attorney if he gets into an accident---again, even if it's not related to the GBM diagnosis or treatments.

My concern is that if he were to have an accident that the GBM would be made into an issue by the insurance company in order to deny coverage if there was liability for property damage or injuries. You may surmise that, years ago, I worked for an auto insurance company that did those kinds of things. I just don't trust auto insurance companies or their underwriting practices. You often don't know anything is "wrong" until you have to make a claim.

Has anyone dealt with the car insurance issue?