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GBA IV

melissam123
Posts: 2
Joined: Feb 2013

Hi everyone

I am bedside myself atm and dont know where to go for help my dad was diganosed with GBA IV today he is only 54, iy has benn removed and he starts treatment soon but they said it will  grow back and he has roughly 18mths I refuse to give up and believe that I want to help him what can I do? any alternative therepies please please help me I cant loose my dad.

jalu
Posts: 58
Joined: Jan 2013

...with my Mother.  I can't lose my Mother to this awful disease.  It hurts and I am devastated.  I do believe that our time left is a matter of months.  I cry daily.  It is hard to sleep.  The posts on this site have been very helpful, but the reality is -- BRAIN CANCER KILLS.  A horrible death for so many.  The doctors offer surgery, chemo, radiation, more surgery, more chemo, more radiation and the treatments are harsh.  The drugs are harsh.  The side effects are unbelieveable.  And NONE of these treatments offer a CURE -- they buy time -- NOT quality time -- they buy suffering time I'm convinced.  

TODAY, my Mother is up, feeling well, active and independent.  The brain cancer has caused many symptoms, but so far, she has been able to work around them.  The doctors now are recommending Whole Brain Radiation Therapy (WBRT).  WBRT will be harsh on a little woman who is very sensitive to steriods and anti-convulsants.  The treatment often causes nausea and vomiting.  She WILL lose her hair.  Fatigue will be extreme.  And WBRT is NOT a cure.  It may buy you more time, but I'm not sure that it will be any time but time suffering in bed.  So these treatments can extend her life -- not cure the cancer, but extend her life.  An extended life, sick in bed and suffering?  

And so, I hate it for you.  One suggestion:

Be sure you research the approach your doctor is recommending going forward.  How long will it take him to recover from the treatments?  WILL he recover from the treatments?  AND, what are the common side effects.  Our doctor recommended WBRT as the next line of attack for my Mother, but said NOTHING about side effects, the drugs or life after WBRT.  If we had just accepted his recommendation, I don't think we would have been AT ALL prepared for the reality of WBRT.  That knowledge and research has been invaluable.  I do not think the doctor felt the need to tell us all the implications of WBRT because either way -- with or without WBRT, the end will not be pleasant.  

My Mother wants to fight it, but has been depressed to understand that either way -- she will die of brain cancer.  She is not sure at this time if she wants to fight for more time if the additional time is spent in bed (or in the hospital or a hospice) suffering.  Ultimately, we will support her either way.  It is her decision, but we have to make sure that she makes the decision KNOWING the realities.  

You have a lot of decisions ahead, I'm sure.  Ultimately, it should be your Daddy's call, but you can help him with research and knowledge.  

I do so understand your cries for help.  The loss of a parent is so hard.  My dad is gone, my Mother is all I have left and I love her with every ounce of my being.  How can I lose her?  Why this awful disease?  What is ahead for her?  Will it be fast?  Will it be horrible?

I've just been doing what I can for her.  In every way, I have to be there for her.  I'm hoping I can handle all the care until the end -- no hospitals -- no hospice -- she deserves to die at home in her space.  Do everything you can for your Daddy.  Be there for him.  Support him in every way.  And create some enjoyable memories.  There is still time for that.   

I'm in the same boat with you.  Your daddy will be in my prayers.  Miracles do happen...

 

melissam123
Posts: 2
Joined: Feb 2013

Miriclaes do happen and I am hanging in to that, he is lucky tey have removed it all now so justthe treatment and praying and belirf taht it will not come back rememeber new treatments everyday out there :)

rmp1399
Posts: 2
Joined: Apr 2013

Hi - Our family is currently going through the same situation. My mom is 64 and was diagnosed in January 2013.  She is almost complete with her 6 weeks of radiation/temodar.  Then she will take a month off and have an MRI in May.  She is carrying on as normal, other than feeling mad, sad, anxious, scared at times. She is a very strong christain woman and prays a lot, as we all do.  I would research some clinical trials. My mom will be starting one next week once she is finished with her radiation.  It is CDX-110. She has also changed her diet completely.  She tries to eat all organic, no meat just fish, and no sugar.  She tries to stay as active as she can which she says helps with her fatigue. 

There are many people out there that live with this!  We are hanging on to those stories and will never give up.  It is very important to just try to be happy and smile everyday.  Keeping a positive attitude is huge for us and for the health of my mom. You see, my mom's tumor bled and she had a stroke.  This is how we found out about the GBM. I live about 9 hours from her and I thought I was never going to talk to her again on my drive to her.  The bleed on her brain was massive and she almost did not make it.  I tell her everyday is a good day. It really is and she and I are thankful she is here to be with us and her grandchildren, even if she does have to live managing this crazy cancer.

I would love to hear if there is anyone else paticipating in any clinical trials.

Praying everyone is doing well

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

Hi All,

My dad just turned 55 this January and has GBM IV in his left temporal lobe-inoperable.  I am 27 years old and 38 weeks pregnant with my first child.  I am praying my dad will be around to see his grandson.  He was diagnosed April of 2012 and originally they gave him 6 months of survival.  Well, clearly they were wrong.  The last two MRI's however showed growth and now he is having a difficult time completing a thought, before it was just a word...now a whole sentence.  He gets very tired, but he is fighting and I'm still praying it might still shrink.  I feel for anyone having to go through this.  There's no other way to describe it other than it "sucks."

arun04072
Posts: 5
Joined: May 2013

Hi, very sorry to hear about your Dads disease.  GBM is a bad unpredictable type of tumor. Difficult to say how much chemo and radiation will benefit, even though it benefits the chances of recurrence is quite high and prognosis is not good. I am not trying to scare you but i am saying this of a personal experience. Mu uncle was diagnosed with GBM and underwent surgery followed by chemo and radiation. Initially he was okay but there was recurrence of disease, he was practically given very less hope. Chemo and radiation didn't help much. He went for a new treatment "SPMF" and it really benefitted him. Its been amost 4 yrs since the SPMF treatment and he is doing well and going to office. I feel you should try out this treatment for your dad as it will give him chance to fight cancer. You can visit the website for more details .

www.sbfhealthcare.com

links :

www.sbfhealthcare.com/research.html

www.sbfhealthcare.com/images/published/asno.pdf

www.sbfhealthcare.com/images/published/17.pdf

www.sbfhealthcare.com/images/published/Carcinogenesis.jpg

Hope it helps you........... Good Luck.

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