Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

Hello Dana,

 It would be good if I could contact you some other way but I hope you get this.  My mum is doing OK at the moment, we had a bad episode where her brain swelled and she had too much fluid on her brain, it was very frightening but after a hospital stay it all seems to be under control again.

 I do believe there are survivors out there, and I know my mum will be one of them! So you must fight for your dad too. It's so hard but we have very little help from the hospital so I am looking in to alternative therapies which offer so much more light in this abyss.  My mum is takig glyconutrients and I am making sure she has lots of good foods to keep her vitamin intake up and make sure her immune system is doing as well as possible.  I do hope your dad is doing ok?  We are also going to a Brandon Bays weekend, don't know if you've heard of her but she cured herself of a basketball sized stomach tumor with no western therapies - and as they say 'anything you can do we can do better'.  I am absolutely sick of all the negativity of the doctors, all they ever do is quote dreadful statistics at my mum - SHE IS NOT A STATISTIC!!!! I would love to know how you are doing,

 Best wishes too you all,

Lisa x

Hi,

 My sister was diagnosed with Glioblastoma Multiforme Stage IV in May 2006.  She underwent surgery, chemotherapy and radiation treaments n addition to steroid therapy.  Unfortunately, her husband did not tell us the grim news or the type of brain cancer she had.  Her family, including me, were all under the impression that she would be back to herself within a year and she was going to be A OK.  Well, her husband dropped dead of a heart attack in June 07.  One week later is when we were told the truth about her condition.  Right now, the doctors say she is clear of cancer, however; they have told us that it will return and when it does, it will return with a vengence.  They basically said there is no hope for her and told us to go and see her now as they do not believe she will be here at Christmastime.  I am going to see her this weekend. She lives in the South.  I'm frightened to see her and yet I am also anxious to see her.  I feel so overwhelmed by all of this.  How do you get through these array of emotions?

On 6/15/2007 Lisey07 wrote:

Hello Dana,

 It would be good if I could contact you some other way but I hope you get this.  My mum is doing OK at the moment, we had a bad episode where her brain swelled and she had too much fluid on her brain, it was very frightening but after a hospital stay it all seems to be under control again.

 I do believe there are survivors out there, and I know my mum will be one of them! So you must fight for your dad too. It's so hard but we have very little help from the hospital so I am looking in to alternative therapies which offer so much more light in this abyss.  My mum is takig glyconutrients and I am making sure she has lots of good foods to keep her vitamin intake up and make sure her immune system is doing as well as possible.  I do hope your dad is doing ok?  We are also going to a Brandon Bays weekend, don't know if you've heard of her but she cured herself of a basketball sized stomach tumor with no western therapies - and as they say 'anything you can do we can do better'.  I am absolutely sick of all the negativity of the doctors, all they ever do is quote dreadful statistics at my mum - SHE IS NOT A STATISTIC!!!! I would love to know how you are doing,

 Best wishes too you all,

Lisa x

On 8/27/2007 Amy Lynne wrote:

Hi,

 My sister was diagnosed with Glioblastoma Multiforme Stage IV in May 2006.  She underwent surgery, chemotherapy and radiation treaments n addition to steroid therapy.  Unfortunately, her husband did not tell us the grim news or the type of brain cancer she had.  Her family, including me, were all under the impression that she would be back to herself within a year and she was going to be A OK.  Well, her husband dropped dead of a heart attack in June 07.  One week later is when we were told the truth about her condition.  Right now, the doctors say she is clear of cancer, however; they have told us that it will return and when it does, it will return with a vengence.  They basically said there is no hope for her and told us to go and see her now as they do not believe she will be here at Christmastime.  I am going to see her this weekend. She lives in the South.  I'm frightened to see her and yet I am also anxious to see her.  I feel so overwhelmed by all of this.  How do you get through these array of emotions?

My husband was diagnosed with Glioblastoma IV 5/3/06.  He had a surgery that removed 80%, gave him 6 months and that was only with the oral chemo & radiation.  We heard about clinical trials at the Brain tumor clinic at Duke University in Durham, NC.  Dr. Alan Friedman was able to remove 100% "of what he saw" on 6/8/07, as these tumors have fingers that infiltrate the brain.  He was tested for 2 clinical trials, but did not qualify.  So we came back home and he had 33 radiation treatments & 42 straight days of oral Temodar.  After this around end of Sept 2006 we went back to Duke and they started him on CPT11, which is a clinical drug + IV avastin. Nothing they did worked.  He started having Grand Mal seizures on Tues after Thanksgiving.  He had 12 seizures within 4 days, and all they did was add another anti seizure med to his Dilantin.  They never even seemed concerned enough to put him in the hospital.  Everyone else I have spoken with has been hospitalized after only a couple seizures.  But he went from being bed bound, to wheelchair, to walker, to walking on his own, then being my dance partner again. (We were country dance instructors).  He sprang back so well, and did great.  But then on Valentine's Day 2007 he got up as my sweet Bill and went to bed a Bill I hardly knew.  By the time he passed away on 3/29/07 he had 7 tumors.  He was only 57 and we had only been married for 8 1/2 wonderful years.  He had his last treatment on 3/8/07 and was due for another treatment on 3/22/07 and I stopped them.  Duke would have continued to keep giving this Avastin until I said stop, when they knew he was dying.  He died 7 days after the last appt that he was scheduled but I cancelled.  Unfortunately I do not know anyone that has lived longer than 18 months.  3 people have died that I know (actually met in our area during this horrible ordeal).  2 of them horribly.  Fortunately, my Bill was put into a hospital bed & catherized 36 hrs before he passed.  He just went to sleep and never work up, so he did not suffer.  But I tell you this man had the faith to move mountains.  His personal testimony and the way he would witness to others, brought more peace to those.  So many came to cheer him and they left in tears because he brightened their day.  I know he is in heaven and I am quite envious as I know he has seen the face of our Lord.  I live everyday to the fullest as the best Christian I can, as I know this way I will someday see him again.  He was not only my spouse, but truly my best friend.  And to go from having him to the next day without him has been devastating to me.  I had never heard of this disease and I am quite astonished at how many are suffering thru this.  God bless all of you and your loved ones who are going thru this.  I pray for a cure for all of you.

Debi in Charlote, NC

Deb,

 I am so sorry for your loss.  Losing your best friend has to be very difficult.  I hope time is helping and the fact that you know he is no longer in pain and he is now with our creator is bringing you comfort.

 My sister was also diagnosed in May 2006.  They could only remove about 80% of her tumor as well. She has developed two more benign tumors since then.  The doctors say, right now she is in remission from the cancer (at least that is what I'm being told by other family members). The doctors say that when the cancer returns, it will return with a vengence.  I have not seen her since her diagnosis.  I know she was put through chemo and radiation and steroid therapy.  I will be going to see her this weekend (Labor Day). Her birthday is September 3rd.  She will also be 57.  I have been told so many conflicting stories and when my sister's husband dropped dead the end of June 07 from his heart attack is the first I heard she was terminal.  I don't know what to expect when I see her.  I'm bringing our mother to see her.  I am almost positive the family in Georgia is sugar coating this situation to get our elderly mother there.  Arlene, my sister with the brain cancer, cries for her mother every day.  So, I am making sure I get mother there.  I have been told so many conflicting things so I am trying to sort out the sugar coating from the actual hard cold truth.  That's why I am on this message board tyring to talk with others who have already gone through this.  One of the things I have been told is that one doctor told a family member she would definately not be here at Christmastime.  Some things stick with me and that was one of them. Arlene is at 15 months from diagnosis at this time.

Thank you for responding.  I appreciate it very much.  And, again, I am sorry for your loss.

Amy

Good morning Amy - (and all)

I'm the primary caregiver for my 76 yr old mother, who was diagnosed in June of this year.  We had a normal, happy Memorial Day vacation, but by the following week she complained that she could not read... see the letters, but could not make sence of them.  This was her only complaint.  A week later we had the MRI (tumor in left Occiptial Lobe), and 3 days later she had the resection, and we received the devistating news... 3-4 mo without treatment, 8-9 with.

Her recovery from surgery went well, and she is now begining her 6th and final week radiation + Temador.   There has been nausea with this, but Zofran is controlling it well.  While she started out fairly strong, there was a marked decrease in her stamina and capability last week.  Her Onchologist ordered a new CT scan yesterday.  Still waiting on the results (simple brain swelling, or newly advancing tumor).

Hardest part?  Trying to stay positive, and not just simply slide down the depression slope.  On the surface, we tell ourselves to "make the most of everyday we have".  Underneath however, as I'm sure all of you know, it's a real struggle.  Just looking for some words of advice, and others in a similar situation to talk to. 

Thanks-  Dennis

Hi Deb, Dennis and everyone,

 I just got back from seeing my sister.  She was diagnosed in May 2006 with Glioblastoma Multiforme Stage IV.  I told you guys I would get back to you after I saw her.  Well, it was actually worse than I thought it would be in some ways and better in other ways.  Its been 15 months since her diagnosis and well over a year since her surgery and chemotherapy.  She did not come out of it unscathed.  She shuffles when she walks.  She uses a cane.  Her speech is impaired.  Her face looks similar to someone who has had a stroke.  Her eyes are not the same and one corner of her mouth is droopy.  She has no short term memory.  Her long term memory is pretty good.  All she wants to eat is cereal.  She fell out of the shower when my mother was with her alone.  She fell on the floor and hit her head.  She said she slipped on the rug, but I actually think she may have had a mini seizure.  I had to bathe her and she started crying because she could not sit down in the tub.  It was too difficult for her to get down in there so we sat her on the side of the tub and I washed her.  All the while she was crying.  I told her we would get her a chair for the tub and a long shower head so she could spray herself.  I had to hold her on the side of the tub because she started to faint.  She fainted in my arms twice.  She looked at me and started crying telling me I needed to move there because she was going to be gone.  She was depressed alot.  Her husband dropped dead of a heart attack in June and she is grieving his loss so I had to talk to her about death and dealing with her loss.  That was hard - believe me.  I had to tell my mother the truth about her condition because she asked me.  She said, "Arlene isn't going to get better is she?"  So, I told mother I would not sugarcoat this and I told her about this support group and what I have learned about this disease and none of it is positive.  In fact, it's grimm.  Mom took it well but had nightmares all night long.  Mother is too old and too frail to take care of my sister.  My older brother is there as her caregiver since her husband died and it may even be too much for him.  I am encouraging him to look into hospice care.  Sister won't go into a care center.  She refuses and it scared her so no one is going to force her to go into one.  I'm concerned about what is going to come next.  She doesn't seem to be doing all that well to me at this point.  How do you know when its time to bring in hospice?

Thanks.

Amy

Hello Everyone .. My brother in law had his 3rd surgery because of hte Glio Aug. 17, he is recovering in a nursing home.

2005 he was given a year... Today, almost 2 years later, although he is not in teh best shape, he is with us.  We love him very much and we pray everyday for a better tomorrow for him and ALL those suffering from this dreadful illness. God Bless YOU each and every day and give you all the strength and faith to believe that everyday someone out there is finding a better way for our loveones to deal with this non pejudice decease, and that every second of everyday brings us closer to a cure!  You are all in my prayers.  God Bless!!!

Mari

I just got diagnosed last week with a glioblastoma IV I'm 26 and I'm wondering how treatment is going for you friend. What type of treatment is she on?  They told me mine is inoperable and they want to do termodar and radiation.  I would like to get a second a opionion...does anyone have any information?  Or heard any good information on sergeons?

Any information would be great....I'm very overhelmed trying to find the best decision for myself.

 Thank you,

Shannon