Brain cancer(Glioblastoma grade 4)

goodgirl13043 said:

Hello Colleen, I have chosen your post because of similarities and our time frames. Often the posts I can relate to are older and the people are sadly no longer with us. My husband was diagnosed end of October 2014 with a tumor in right frontal lobe and underwent a 6 hour surgery on November 14. The surgeon had told us from the MRI prior to surgery that he thought a 99% chance that it was benign and had been there a long time, but somehing "woke it up, and made it angry." and it should come out asap because his ability to perform his work duties was being affected due to left side mobility and dexterity problems. When he came to the waiting room and told me it was not as he expected and was in pieces and was able to get it all working under a microscope. He spent 3 days in ICU and 2 days in a room and from there to a rehab facility to help him regain strength. A second MRI showed no new growth but a few blood clots from the surgery. The hospital's pathology could not positively diagnose it and sent the specimin to Mayo clinic where 10 days later, the report came back as a Gliosarcoma. The surgeon said it is a rare varient of GBM, primarily affecting males in 50th, 60th. and 70th. decade of life. He said it is to be treated exactly the same as Glioblastoma with the same prognosis, which is 6 months without chemo and radiation and possibly 12-15 months with, but no longer, and it WILL come back and when it does, it will be with a vengence! He is due to come home on January 6 and our journey for treatment begins.

I have contacted Vanderbuilt oncology department and will be making an appointment to drive the hour there for a consult and possibly a clinical trial if he qualifies. No way to know without another MRI, but this BEAST may already be coming back! The medications he is currently taking is Dexamethasone 3 mg. 3x a day, and an anti-seizure drug.

I would appreciate hearing from you and staying in touch. Another wife who is experiencing a similiar life altering situation is so important to me right now. We have our loving family, our pastor and church friends, but none of them can begin to relate to this horrible nightmare that life has dealt us. Additionally, we are raising a 5 year old granddaughter since she was 6 weeks old and have legal permanent custody of her. She is the sunshine in our lives, loves her Papa, and he adores her and wants to live as long as possible for her and for me.

Also a wife of Grade 4 Glioblastoma

I have just found this site.  My husband went in for a headache on January 23, found the tumor on the 24th and had brain surgery on the 26th.  50% was removed. Unfortunately the tumor is deep in the very center of his brain.  We are going to MD Anderson on Wednesday for a three day consultation and the start radiation and chemo.  I also have a wonderful family and a great support system but like you mentioned none can actually relate.  I would love to have another person to talk to that is going through the same thing.  My name is Rosemarie and we live in Virginia.  Thanks.

sonfollower said:

Diana.
I was dx 5-1-11 with
Diana.

I was dx 5-1-11 with GBM 4 and had a tumor resection on 5-3-11. I just finished my 6 weeks of radiation and Temodar. The hardest thing for me was being to tired and weak. I had to face the fact that I could not get through the days with out at least 2 naps. People would want to come over and visit and I would let them my naps are this time, and this time. You can come inbetween. Everyone was very understanding.
Its been 4.5 months now since my first surgery. I still like to lay down for a little bit in the afternoon, most of the time I just rest. But this helps me get through the rest of the day when my husband gets home from work.

I also made some friends at the radiation treatment center. That was helpful, because it gave me people to look forward to seeing and we were very encouraging to each other. I felt that by the time my treatments were over, I could not believe it had already been 6 weeks.

I hope this has been a little helpful
God bless, Lora

Dad very weak after first 5 weeks radiation and chemo
Hello Lora and everone,

I am new to this page and am so greatful for everyone here. My prayers go out to all and your families. My dad is one of the healthiest people I have ever known, so you can imagine our shock as he was diagnosed at age 64 with GBM stage 4 end of July 2015 after 2 small seizures. The tumor was successfully removed yet he was given maximum 9 months to live.

He was started on very aggressive radiation in conjunction with chemotherapy orally for 6 weeks (5 days a week) and will be finishing week 5 tomorrow. He has been lucky to be able to eat normally and don't struggle with naseau for the most part and had little fatigue. The biggest problems seemed to be slight trouble with hand-eye co-ordination, memory loss and some cognitive processes. Although he looks much better since the removal of the tumor, things seem to get tougher now.

As I understand from the Oncologist the decrease the target for radiation every 2 weeks to a smaller area of the brain to make it closer radius to the tumor. Week 5 is almost over and he seems so much weaker, more tired and struggles walking more and more. I am so much more concerned after this week. Is this normal for the last weeks of radiation to have this much of an effect?

He is starting on very intense chemo as well after this is done (I think one week a month for 3 months) and we don't have a clue what to expect. As far as I understand this chemo will be very hectic on his body. The doctors say they can only truly give an idea what is happening after 6 months so we can't do anything but wait and pray.

If anyone has some help on what we can expect through this process, please help. We are realistic yet hopeful, and would like to make this journey as comfortable as possible for my dad.

Sending a prayer for you all God bless!

CJ

My KnightWarrior

My husband had a severe seizure on New Years Eve, Dec 31, 2016.  He ended up in the hospital and being told he had a tumor which was later diagnosed as a Grade IV Glioblastoma Malformatio.  Let me back up a bit.  In Oct 2016, he wasn't feeling well and had metal taste in his mouth and felt as he was going to pass out.  We took him to our local hospital where he was diagnosed with Encephalitis in his brain.  Anyway he had his surgery on Jan 3, 2017 in which they removed 80-85% of the tumor.  They couldn't remove all of it because some of it was too close to the stem of his brain.  He's done 6 wks of intense radiation along with low dose of chemo.  In April for 5 days he started a high dose of chemo (Temodar) and on the 17th of this month he will go to a highest dose for 6-12 months.   He's extremely exhausted and wants to sleep most of the time.  I'm just looking to see if anyone else has recently gone through this and is it normal for him to be so fatigued.  I also have to admit there are time when I'm so exhausted and have given up on taking care of myself.  This is the first I've spoken about this.  I keep most of what we are going through to myself.  Would appreciate if anyone out there could tell me this is normal.  I don't even cry anymore. 

my father's GBM stage IV

my 77 year old father has a GBM stage IV diagnosed on January 21st 2015. He has done it all, surgery (twice), Radiotherapy, Temodar, Avastin, colonoscopy, etc. He's been what you can call "stable" but he hasn't sleep in two days now and wont stop talking.he had a shot of decadron yesterday but he remains the same. 

has anyone gone through something like that?

my husband

my husband suffers from stage 4. im frustrated with his behaviour. its been 4 and 1/2 years and one surgery where they coild only remove 20% safely. we have 3 children and im scared. they gave him 5 years and the tumor is stable but his behaviour is not. i dont know wat to do. im a believer and just need encouragemwnt on how to help him get thru this easier? please anyone offer any suggestions im in need.

Ilovemymomjoe said:

Mom

My mother has been diagnosed with stage 4 brain cancer since August I need help the doctor said the swelling has got worse and there is no other options she can't get surgery what should I do ? Can anybody help me? you can give me a call to at 708-539-0018. I do not what to do next I am just praying.

hows everything with your mom

hows everything with your mom? 

JCM2468 said:

GBM Grade 4
Hi,
My father was too diagnosed with Glioblastoma Grade 4 he has since radically changed his diet.
We have followed lots of other diets of people who have had same tumour, One guy who got rid of it, and also didn't do much treatment as he hated it.
We have my father eating
Organic Cottage Cheese with one tablespoon of Flaxseed Oil (very high in Omega 3) Lots of brain tumour victims use Flaxseed Oil in their food (Salads, Yoghurts, Cottage Cheese etc)
So my father eats that once a day,
Whilst also taking the following
Inner Health Plus capsules
Hi-Strength Coenzyme Q10 Capsules
Betacarotene vitamins
Magnesium Forte 4000 Capsules
Fish Oil Capsules
Vitamin C Powder (In Juices, Smoothies Etc)
Super Greens Powder also in Juices etc.

We also follow good diets out of a book called Shattering the Cancer Myth Which has about 10 Pages of Different Foods, Drinks etc which are good for cancer.
My father is also getting into meditation
After having his tumour removed 100% He has not been as active as he is now in about 15 years and He hasn't started Chemotherapy or Radiation Yet and Isn't very keen too,

Here is an article of the man who's diet we are following.
http://www.healingcancernaturally.com/brain-cancer-cure-testimonials.html

Hope this helps!

Hi- I am wondering how you

Hi- I am wondering how you father is doing? Is he still living? Did he get rid of the cancer through diet change? My dad has recently been diagnosed with stage 4 glioblastoma and he isn't doing chemo or radiation. He has changed his diet and is taking a ton of vitamins. Thank You!

SPMF therapy for GBM (Grade 4)

Hi,

My father has been diagnosed with Grade IV Glioblastoma (GBM). He has undergone a surgery for tumor removal. Now we need to start with the therapies. Can you please let me know how effective is SPMF therapy in this case?

Should we go for radiotherapy+chemeotherapy or SPMF?

I'll be really grateful if anyone can share their advice on this.

Thankyou!!

Hello. Difficult times. My wife, age 72 had Glioblastoma, terminal, no cure. About same size as your friend. The wife had hers removed June 17th. Radiation just 5 weeks, Chemo until doctors stop. They never tell you how long, they can only guess. Most just last at the best only 18 months or less. Not much on Glioblastoma online. It is a difficult. I started this awhile ago. Was afraid to enter it. We are Canadian. We are lucky to have a great Healthcare system. Now into I believe 3rd chemo session. The part of my wife's brain, was the area for cognitive thoughts, speech, writing, reading, numbers, etc. She used to read 2 books a week. Can't anymore. She was on her tablet daily on Facebook. Can't, write to Can't do that. Can't drive, in hospital 4 times, total 5 weeks, causing her to lose her walking ability. Just walking with a walker now. No energy. Sleeps 20 hours a day. Chemo does that. Luckily not sick. The cognitive issues are so difficult. Sometimes I think maybe no radiation and chemo would have been better? Without that she would have passed already (4 months tops). The treatment will help, but the suffering mentally is beyond belief. All the things she can't do is done, will never come back. They say maybe a little more time, no one knows. The crying, the hurt from all the negatives, writing, speaking, logic, thoughts etc, etc. She will die, it is terminal. They know that. They don't know when. Tops maybe a year? Lucky no physical pain, yet. Had blood clots and in hospital 8 days..very painful. They say more things will happen. The wife signed MAiD and now is saying...too much sorrow, crying, lack of abilities, will cause her to stop chemo, not sure, yet. Life is too difficult expensive ($7000) per month in retirement home with all meals, nurses, psw, etc etc. I am sorry that I can't help much in anything for you. We are opting for MAiD, that is another while of suffering. Please get professional help in your decisions