Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

 

On 5/21/2009 pebbles056 wrote:

Hi I see that it has been several years since you posted this. But my husband just beat stage 4 GMB and I was wondering if you were still looking for information?

 

On 12/23/2002 Karen C. wrote:

I would like to hear from anyone that has survived or been part of a family that had the above cancer. Thank you

I am courious to to know what you mean by beat this. Do you mean the cancer is all gone. Where did he get treatment? How old is your husband.

 

My father was diagnosed with Stage 3 in 2001, just after Christmas. He had been complaining of strange "deja vu, out of body experiences" for a few months prior. He had some X-rays done about 6 weeks before, but they were misread as mini strokes. At Christmas, his behavior grew very strange. He would talk to someone on the phone, lose his coordination and drop the phone, and yet continue talking. We took him to the ER on the 26th. 

He was diagnosed with a Stage 3 glio, and had surgery a week later. Unsurprisingly, they could not remove all of the tumor. He proceeded with radiation and chemo at Roswell Park in Buffalo. Unfortunately, I would say that my family and I have mixed feelings about our experiences at Roswell. I know it is one of the top cancer hospitals in the country and we were so fortunate to have it in our backyard. If I had cancer, it would be the first place I would go. But some (not all) of the doctors' bedside manner left a lot to be desired. The physician's assistant to his chemo oncologist was particularly rude and insensitive. My mother will never give a dime to Roswell to this day.

Anyway, Dad continued with the protocol until late May (5 months since diagnosis) when he began to take a turn for the worse. He was having more trouble walking and his body blew up like a balloon from all the steroids etc. He was admitted to the hospital (not Roswell) and just went downhill from there. He kept spiking high fevers and then became very chilled. He got all of the maladies associated with being bedridden - foot problems, bed sores, you name it. By August they discovered he had developed gall stones, and I knew it wouldn't be much longer.

He passed away at the age of 61 on August 19, 2002...almost 8 months after diagnosis and a week before my 21st birthday. By the way, there was no family history of this except for a first cousin who died of the same thing, I don't remember how old he was. Heart problems run much more rampant in my dad's family.

On 10/5/2008 kimberlya88 wrote:

THANK YOU SO MUCH. It feels so good to have words of hope. We go for the Avastin and CT11 on 10/7 (port) 10/8 I will keep you posted. Keep me posted on your wife's progress. My mother has become very argumentative and quite mean. I hope this helps?????? She is yelling at me on the phone right now. I hope the mood swings get better. She is worried her body will not accept the medication. I understand her fears and am doing my best to help her. She just seems to get angry no matter what I say or do. It is very difficult. Thank you for your support.

Kim

My wife was diagnosed with GBM stage 4 on 7-2009> she had a temporal lob canonomy immediately. surgents removed 80% if tumor. She has have 45 days of temodar. and 30 day of radiation has as well as 60 sessions of pt ot and speech> i have gotten her into a clinical trials at Lurie cancer center at northwestern hospital.. She is MGMT unmethylated and we are moving to avastin and erlotinib. there drugs are fda approved but show double mortality with mgmt turned on. she is back 100% execpt for very irritable state of mind> the purpose of this psoting... the NW docs say it is the Keppra she is taking<<< so that may also be why your mom is "mean"> ask your doctors. we are moving to Lamical as we phase out Keppra to bring back her personality> i read some ones message on insurance> if you have a pathology report that say you have GBM stage 4 you can get medicare quailified> a local social worker can help you> i did it on line and got it approved in 14 days> that means you get insurance after 24 months from the fed> dont wait the meter start run when you qualify> if you want to bet this animal you need the best tools available> my recommendation is get to a teaching hospital if you can ...With God's help and your prayer it going to happen! but even God can alway use some help. you need to work on her fear now ...attitude is very thing when you fighting bad odds we will work on your fears when she is no longer in need> simon

Hi pebbles056

Id like to hear more regarding your husbands recovery.

My mum has an inoperable Glioblastoma Multiforme Stage 4. Shes had four weeks of radiotherapy. Mum was only given 3-6 months, 4 of which have already gone!

Hope to hear from you very soon

Wendy

Caspalena 23 - Did you receive any radiation or chemo after your surgery? My husband was just diagnosed with gbm.

Please reply at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Very much appreciated.

On Jul 12, 2006 12:00 AM The_Greatest_Physician_is_God wrote:

My very healthy father suddenly had trouble reading words and was slurring his speech. He drove himself to the E.R. We were suprised to hear that he had probably had a stroke. Two days later we were wishing it was a stroke. He was told he had a glioblastoma very large and to make matters worse it is located in his speech center. He was in the E.R. on 4/29/06 and had brain surgery a week later. They were able to remove only 40% due to the location. He has undergone 40 days chemo and six weeks radiation. He has been in the hospital numerous times now. Mostly due to brain swelling and steroid toxicity. Very difficult to keep his levels under control. He has now been in the hospital for two weeks. His radiation and chemo are complete. We have been praying for some remission but he just can't seem to eat or take hardly anything by mouth. He is in for severe dehydration and now has a N.G. TUBE. It is all we can do to get his daily meds into him with applesauce. He is also on a thick liquids diet. does anyone have any suggestions? NO ONE SEEMS TO KNOW WHY HE'S NOT EATING . He has lost so much weight and in two months is now skin and bones. It is hard for him to express whats going on due to the speech center being affected. Has anyone dealt with a similar problem?

While going through this post, I am amazed that my dear father who is also very much healthy suffers from the same problem. I don't know much about this glioma first but learned through discussions with doctors and reading through the net.  My father was operated on 16-06-2009 and was discovered Grade 4. Doctor told me that he has 3 to 4 months of survival and the usual treatement of radio theropy. But listening to the experiances of others I decided not to go for it and moved towards Ayurveda. Now after about 4 and half month he is suffering from the same condition as is experienced by "The Greatest Physician is God"'s father. He is not at home and we are doing everything for him. He has N. G. Tube. He is also on liquid diet, lost much of weight and is in sking and bones. He also cannot express himself may be due to the same reason of speech centre. I don;t know what will happen to him but somehow carrying on with routine madicines and dose of ayurvedic medicines.  I would like to here from "The Greatest Physician is God" which may be helpful to me to understand my dad well in this condition.

Hi Daniel,

My husband was diagnosed August 5th, 2009, it has been a nightmare for all of my family.  So far so good and his attitude is great.  He had radiation and temodar and is now on a cycle of temodar every 21 days.  I am hoping and praying he beats the odds but it is hard. I hope you are still doing well.

Bj