Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

 

On 7/8/2008 kitina wrote:

Hi my father in law was diagnosed with glioblastoma June 16 of this year. We are all very in shock and scared. We have heard so many horrible side effects of radiation treatment that we have decided not tho go thru with it. But insted have him take natural things.
Cancerella you have said that you are "treatment-free GBMers" Did you do any treatments?
I hope we are not making a mistake by not having him not go thru chemo and radiation. If anyone has anything to say PLEASE do. I are praying and i belive that God will cure him.

 

"treatment free GBMers..."

Hi,

First off, my prayers and support go out to you and your family.  I am constantly on a soapbox for caregivers of cancer patients, ESP Chronic Cancer patients.  As far as my statement quoted above, I was referring to long term GBM survivors who, though considered long term like the rest of us (due to years/months lived), are still undergoing treatment.  My physicians make that distinction frequently, heightening my own awareness of the difference. 

I would feel hypocritical to tell someone to refuse treatment after I myself have had treatment.  The decision NOT to continue treatment beyond the initial 6 weeks was based on several unique factors, internet research, as well as my personal openness and relationship with God throughout my own survival. 

I have lived with a balance between holistic and traditional treatment.  And, research beyond what traditional or western physicians advise. Whereas I feel the Lord made us whole and complete with everything we need on this earth, I also see the world becoming more toxic with man made chemicals that wreak havoc in our bodies without us being aware of the damage.  I think man has made awesome advances in cancer treatments in that the treatment has gotten a bit more tolerable for patients.  But, with treatment being toxic to cancer cells as well as our living bodies, there also needs to be a reckoning of keeping our bodies strong to fight through this.  After all, it was our immune systems that were weakened prior to diagnosis allowing the tumor to begin taking over.  I learned early on, there is a fine line between benign and cancer.  This is why I strongly believe in nourishing/replenishing the body, ideally before, but most definitely during and after cancer (and treatment). 

I believe God gave us brains and medicine for a reason, though this gift has been greatly misused for profit.  I dont know if I was healed directly from God, or through the faithful hands of my neurosurgeon who claimed after each resection, he did what he could, now it's in Gods hands.  I would say research all available treatments, talk to several oncologists, find one that listens to you and your family's wishes.  There needs to be mutual respect.  You might not want to work with an oncologists that gives you threats of what is to happen should he refuse treatment.  Be picky.

You might want to check out Crazy Sexy Cancer on dvd.  Its a documentary of a young womens venture to healing.  She did not undergo treatment for her type of cancer.  Her name is Kris Carr, and the dvd can be purchased on Gaiam.  You can google it for the website.  I found it very inspirational, and I adopted many of her experiences into my health routine.  Has your father in law had a resection yet?  If so, how much were they able to remove?

If you have any other questions, feel free to reply.  Again, thank you for all you are doing.

 Sincerely,

Ariane 

PS- I also had prayer circles around the world from family and friends, which undoubtedly helped to bring peace to me and my husband throughout my first year after diagnosis.

Thank you for your reply. The doctor removed 98% of the tumor and he was suppose to start his radiation end of last week, but he didnt. We heard of natural ( i guess they are medicines but made out of all natural things). They are some kind of Nona medications. My sister in law knows more about them. My husband and i live in a different state. And that is so unfortunate because i talked to my sister in law today and she says he started taking these medications today BUT he is changing his face is starting to look different more swollen around the eyes and she says his speech is starting to change its hard for him to get the words out right. Im not sure what to do, i told my husband we need to go see him now but he says that dad will think he is dying. Because we (the kids) are not telling them everything. Mom and dad dont know that he is on stage 4 and that the doctor said if no treatments he has 6 months to live. I hope we are not making the mistake of not telling them. We just dont want them to be even more stress, because a positive attitude makes a big difference. He has always been healthy i mean he had headaches ever since i knew him (i have been in the family for 8 years) BUT after taking some kind of snack his headaches would go away, but other than that he has never even been in the hospital he was a healthy man. Worked really hard all his life (construction) He is 55 years old. Today my sister in law is calling the hospital oasis of hope in mexico we want to know what options are open for him there. He has always had a good relationship with God and I also believe that God created us and if we believe in him then he will do anything. BUT what if its his time? This is such a nightmare. This disease is such a monster. I pray that someone will find a cure for it soon, how many more people have to suffer from it. Again thank you for your reply it was helpful thank you. I am very glad and happy to hear that there are survivers like you out there thank God

dear judy, you are so right there are many stage 4 gbm survivors, i myself am one of them.i was diagnosed in 2001, 8 years im still cancer free.this disease is enough to scare anyone, but it has been beaten. prayer is what what got me through,because without i would have given up,but every a little glimmer of hope would feel my heart, and give me the strength to go on. my prescious husband was also a very big motivator,along with m7y 2 children.never give up,its not in our hands. stay in faith.god bless you all.    stacy survivor

My husband was just diagnosed last week. Highlighted areas showed up on his MRI back in January when he first started having seizures. No one knew what they were and waited until 7-1 to do a biopsy.  When a few more highlighted spots started showing up. We have been told he is inoperable.They still have not been able to get his seizures under control. He is very healthy other than that. He has very limited short term memory. Sometimes I think its selective. (humor for myself) He is 43 and we have six children, three biological and three adopted.   

We go into UCSF on Tuesday to hear all the statistics and treatment plans. We have told him he has a tumor but I think that is one of the things he doesn't want to remember, so now I just tell him he's fine (praying he will be). I will be letting the doctors know he does not want to be in the room for the meeting. He wants to sit outside and look at the view. I guess the reason I am writing is I want to know everything there is to know about survivors. (In fact right after we were told of this the only question I could think of was has anyone survived? Then I got stubborn and didn't want to hear any more at the time.) But I would like to know what kind of medicines, foods, exercise, vitamins, whatever there is out there that could help, but more so, did help. Please let me know. I found this site to look for hope. I have found some. But I need more.

Thank you,

Stefanie 

 

 

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 have survived GBM for 14 year now in 2008. was Dx in1194 had surgery, chemo, stem cell transplant and radiation in seattle, WAyou can contact me 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--

 if you have any questions. Wish you luck

 

 

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

 

hi my name is logan, i am 26 yrs. old and d/s oct.07,almost 1 year ago.have had 2 surgeries. lots of siezures,falls and fractured bones. i have done 2 rounds of radiation trying second chemo drug (cpt11)with avastin, the first one i did was temodar which is a pill form. i hope everything works out for you all. take care!

 

On 5/29/2008 askray wrote:

Just so everyone has hope. My wife Diane was diagnosed in May of 2000 with Grade 4 GBM. She has surgury to remove most of the tumor. This was followed by 6 weeks of radiation (with a boost on the last week), then chemotherapy (temodar). She had done frequent MRI's since then and is still STABLE 8 years later. She is a miracle and goes to show that cancer is not a death sentence!!! She was treated at UCLA medical center and we still have regular visits every 5 months.

Hi Ray and Diane,

 my sister joan was diagnosed in april 15 2008, grade 4 gbm. They also did a debaulking and got a lot of the tumor and then they did 43 radiation also with a boost at the end and at the same time she took temodar 140 mg. she is doing great as well but the temodar she takes now is stronger 250mg and it really makes her tired. I am so happy to hear that Diane is still stable after that length of time as the prognosis we were told was not very hopeful. Is there anything you can share that she has been doing that will be helpful, Joan is only 50 had a promising career ,a new grand child and so much to stick around for. she also has an MRI every 2 months and sees a doctor at U.C.S.F.

    THANKS LYNNE
 

 

hi my name is stacy and i am a gbm stage 4 survivor.in 2001 i was diagnosed with gbm , today i am cancer free by the grace of god. write back soon. survivor, stacy       god bless you and yours

 

On 8/21/2008 stacyloveslester wrote:

hi my name is stacy and i am a gbm stage 4 survivor.in 2001 i was diagnosed with gbm , today i am cancer free by the grace of god. write back soon. survivor, stacy       god bless you and yours

 

 

On 8/21/2008 stacyloveslester wrote:

hi my name is stacy and i am a gbm stage 4 survivor.in 2001 i was diagnosed with gbm , today i am cancer free by the grace of god. write back soon. survivor, stacy       god bless you and yours

 

Stacy, I am so uplifted by your news.  I was dx'd on 6/25 with a GBM stage 4 brain tumor.  Surgery on 6/27.  I am currently finishing my last 2 weeks (6 weeks protocol) of rx treatment & temador.  I was in a clinical trial, but was only able to complete 1/2 of the course (12 treatments out of 24).  I was too weak & had reactions & had to be hospitalized for a fever.  I am feeling pretty good.  I do get tired & try to keep up with things in the house as best I can.  Your good news has empowered me.  "Yes I can live with this!"  Regina