Brain cancer(Glioblastoma grade 4)

Nas

Gliosarcoma -a varient of GBM

Dear All,

 

My friend (37 years old) was diagnosed with GLIOSARCOMA two and a half years ago.

 

This is a quick rundown on what happened:

- He is 37 (35) then.

- He was in good health until this incident

- about 2.5 years ago one day after lunch he complained about headache.

- the headache became severe and by evening he was in serious pain.

- we rushed him to the nearest hospital.

- CT showed severe heamorrage in the brain.

- emergency surgery was performed. 

- the surgeons found a bleeding tumor, the bleeding was stopped and the tumor removed.

- the tumor was on the left parietal lobe. 

- the pathology report stated the tumor was GLIOSARCOMA - a very deadly varient of GBM

- he lost partial sight in his right eye

- he suffered various problems typical of left side paralysis 

 

----- he had radiation therapy

----- But with various other therapies he got better. 

----- His wife googled and found the Budwig diet.

----- She put him on the Budwig diet and he has been following it ritually.

 

He has had MRIs taken in 3 to 4 month intervals. There was no sign of recurring tumors, although they found very tiny changes which the doctors said could be due to post-op changes. 

 

Last MRI was two months ago.  Once again they found a couple of 3 mm size ?? Questionable particles. They did not call them as growth. Once again the doctor said that it was probably post op changes.....POST OP CHANGES AFTER TWO YEARS!!

 

Anyway, two weeks ago he had similar symptoms to what he had 2.5 years ago. Headache, vomiting etc. Once again he was admitted, they found blood in brain and he was operated on immediately. 

 

The new pathology confirms presence of DORMANT NEW TUMORS, but all tiny - 2 mm to 9 mm.

 

He is much better in two weeks. He seems to be returning to Normal.  He is walking with help today (19. Feb 2015)

 

Doctor says the bleeding could have been from new tumors or from the old radiation site. Still, the prognosis is not that great.  The doctor says he is lucky to have dormant tumors, which could flare up sometime in future.  They are considering giving him TEMADOR.

 

The wife is reluctant for him to go for chemo. She believes what is protecting him is the Budwig diet. 

 

Now the question:

Has anyone on here experienced similar stories? Has anyone heard of DORMANT TUMORS which are tiny - our understanding is that both GBM and GLIOSARCOMA comes back with a vengeance and it grows to 20 mm size in a very short period (three months). 

 

The family thinks perhaps he does not have the aggressive varient, has anyone heard about this?? They are happy that the tumor has not come back aggressively and wonder if the pathologist could have made a mistake In his reading of the slides. But then this is the second biopsy, and we had sent the sample to another hospital for second opinion and the independant lab too confirmed the tumor to be GLIOSARCOMA! 

Please help, let me know if there is anyone here who has survived this illness for three years or more. 

Thank you. 

 

rjstaggs

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.

G_I_Jane

rjstaggs said:

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.

Hello Rosemarie and SteveD

My name is Stephanie. I was diagnosed with a stage 4 glioblastoma at the age of 28 they did surgey and were not able to remove it all. I went through 3 months of aggresive radiation and chemo 5 days a week mon-fri with sat and sun off. I was warned I only had a 25% chance of the treatment working and at that point they gave me a 6 month life expectincie. after I beat all odds and surpassed the 6 months I got phenomia then was givin another 3-6 months and yet still I am here, I was told 99.9% chance I would never see my 30th birthday, I am now 33 I have been fighting this for 5 yrs but I am still here. Grant it it has not been easy at all Considering this type of cancer is considered non cureable, my oncologist says I have beat all odds. He seams to think I am a walking miracle. That being said I have continued to reseach just exactly how lucky I am. It turns out the general amount of people with the same type and grade of cancer I have responded best to the aggressive treatment in the begining if you are strong enough to even be considered for it.  Be at mind sweetheart this is my expirience, everyone reacts different to the treatment. I now do chemo 2 weeks a month with Temodar. In the begining they had me doing the same chemo just through IV now I am taking it Orally at home but I do go in for IV fluids and nausea meds IV before starting my oral chemo from home,which is much more comfortable. I do have several after effects from the treatments but your husband/ friend has a while before  these things if he has them at all. my point is dont loose hope, be very supportive and opptimistic.My thoughts and prayers are with you both and if you have any other questions feel free to ask. best of luck! Stephanie

ceejay5

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

michelleos69

My mother was diagnosed as

My mother was diagnosed as well with stage four glioblastoma and had a craniotomy. Her tumor was the size of a small orange. The surgery was in September followed by chemo in the morning and radiation in the afternoon. Seven weeks later she wouldn't wake up and was taken to the hospital where they gave her a scan and saw the tumor had returned bigger than than the first tumor. They gave her steroids to wake her up and control swelling and sent her to hospice with no further treatment except for pain management. I'm so sad that nothing else can be done.

KnightsWarrior

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. 

ar2017

high grade brain cancer

My father was diagnosed with brain tumor and he had a surgury about 8 months ago. He finished the radiotherapy process to complete the treatment in December 2016. Unfortunately he got an intestain issue during the January 2017 which enforced him to experience an intestain surgery. Fortunately, once he got the anesthesia, his intestain started to work properly and he started his recovery without any surgury. The anesthesia process affected him negatively and he became so week. Recently (two weeks ago) we checked his brain again and the MRI result was disapointing. His doctor said that he is so weak to experience either surgury or radiotherapy and here is the exact summary of my father's current situation report:

There is avid enhancing massin right basal ganglia /thalamus and brain stem with peripheral vasogonic edema cause mild line shift. Those are suggest high grade brain tumor. The mass show high signal ADC and iso signal in DWI suggest high cellularity.

It means the tumor is back!! and he is now so weak to get the radiotherapy or surgury. Please if anyone had such experience let me know what can I do for him. I really want to do something but I do not know how. God bless you all and thank you so much.

michelle colon

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?

Ilovemymomjoe

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.

ellie1982

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.

ellie1982

KnightsWarrior said:

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. 

wow...i came home to my

wow...i came home to my husband passed out from having a seizure due to this tumor at the time we had no clue. he did surgery after 2 years and he did the chemo and radiation where he was tired and had no real appetite. its hard 

ellie1982

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? 

teresa alari

ellie1982 said:

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.

my mom too

Hi ellie, My mother was diagnosed glioblastoma multiforme, she is always so angry with everyone and criticizing all we do for her... is for me hard to manage this because since I was a child I was never enough to her and now... well is kind of more I doo less I am. I manage it well inside me, because is a battle that I have fight and I'm really well with my self steem, but I'm not able to listen how she is bad with my tafher that is doing all his best to her, just it hurts me. I don't know what is the matter with your husband, but I believe is part of the dissease the personality change, and it might not go back as it was before. The main thing is you let your children understand what is going on and you try to manage to tell him that there are things in his head working different because of the dissease (difficult, right?) if he hust could accept...

When my mother hurts me speaking bad things of my father I just try to tell her how much good things my father is doing, and I try not to listen what she say. if you have any idea let me know

 

 

amhoop

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!

Vipul

Query regarding SPMF therapy

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?

Please provide your opinion and your uncle's experience regarding this. I'll be really grateful if you can provide your advice on this.

Thankyou!!

Vipul

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!!

Werdog

My closest friend has Glioblastoma Grade 4. Complete removal of tumor. Just started radiation and Quimo. 23 sessions in total has been prescribed.

She is 62.

What to expect? Life expectancy ? Planning to visit her and no not know if after the 23 sessions she will be up to. How can I help her ?

Randydandy65

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