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Glioblastoma Grade IV

espurl
Posts: 4
Joined: May 2009

5-30-09
My sister was recently diagnosed with Glioblastoma and we are wanting to know as much as possible on treatment options, effects of , and alternative therapies. We understand it is important to educate ourselves but then to decide what our own journey will look and feel like. We know the power of thoughts and how thoughts manifest. Please help us to shine even more light today.. Comments please

IamLaLi
Posts: 2
Joined: Sep 2012

Hello ..

Looking for 2nd opinions.
We live in Phila.

Who are Glio experts you can recommend .. and why?

Thank you for your replies!

Jaxees
Posts: 14
Joined: Sep 2012

this thread seems to have stopped in February you may want to post in a more recent thread or start your own....

IamLaLi
Posts: 2
Joined: Sep 2012

Who here has actually been to the clinic? I am looking for your experiences & progress report since you have returned.

Thank you for sharing!

rqueenjr
Posts: 2
Joined: Oct 2012

We did a lot of research on this guy - A LOT. I don't know where the "highly successful" comes from. Do your homework. There are many private pay physicians with "highly successful" alternative programs. Most of them will waste your time and take your money - lots of it. Please talk with patiens and survivors before anyone goes down this road.

melevy
Posts: 5
Joined: Feb 2013

Do not go to burzynski. He is a fraud and a quack. Do some research, his treatment is not approved and it is dangerous.  

Checkout his site first

http://theotherburzynskipatientgroup.wordpress.com/

 

rqueenjr
Posts: 2
Joined: Oct 2012

I was diagnosed in 2003 with an ATRT, Stage 4 Brain Tumor. (much like glioblastoma) I was supposed to live 3 to 6 months, at the most. I submitted to the medical treatments (rejecting some) I also meditated with prayer daily with a focus on removing the bad cells and replacing them with healthy ones. Do not accept the negative projections you may hear. Stay strong, convinced and do everything you possibly can to defeat this enemy. My battle with cancer lasted about 3 years. One month they did the regular cerebral spinal fluid test, and there were zero cancer cells. We were shocked! Maybe it was a miracle, maybe it was medical (although doctors repeated many times that then could only improve my quality of life and maybe extend my time slightly). Whatever the reason, I have been cancer free for about 6 years. I am married and have three daughters. Going to my first daughter's wedding this weekend.

bugs_mommy
Posts: 24
Joined: Dec 2012

i, my husband was diagnosed with this aweful cancer in april 2011, had a surgery but they didn't get it all, so he has done radiation, and took chemo pills (temadol), well september 2012 he took 8 seizures in a row and didn't wake up..plus he had more in the ambulance...they found the tumor growing so they did another surgery, this time his speech was different, he had a hard time to  say what he wanted or explain what he wanted, he was so shaky,and his walking was a bit off. Well we had a great christmas, but dec 25th I noticed my husband was getting bad headache and vomiting, he was more shaky and he was walking poorly he had his MRI dec 28th and the 29th he was doing so bad that our nurse sent us to the hospital so here we r today, the result of his last MRI showed it grew so large and fast! so instead of his regular 4mg.of decadron he is getting 12mg to get the swelling down..now my question is, is it worth doing another surgery, or let it run its course as his doctor says...his doctor will talk to us more but just need opinions and advice thank u :) oh we have a beautiful 3 year old together and a beautiful 9 year old step daughter 

miskha
Posts: 3
Joined: Jan 2013

HI there. my my father (54 ) is diagnosed with grade 4 glioblastoma.he had a surgeon 8 years ago and radiotherapy and chemo.. but now it came back more maligant. we cant't have an operation because the tumor is in the basic gaglia. we only had cyber knife and temondal.  the predictions are bad but we stay optimistic so far.  i read about a doctor from kosovo. i would like to have some further information about him. tommorow he is going to have his MRI and i'm terrified.

 

miskha
Posts: 3
Joined: Jan 2013

HI there. my my father (54 ) is diagnosed with grade 4 glioblastoma.he had a surgeon 8 years ago and radiotherapy and chemo.. but now it came back more maligant. we cant't have an operation because the tumor is in the basic gaglia. we only had cyber knife and temondal.  the predictions are bad but we stay optimistic so far.  i read about a doctor from kosovo. i would like to have some further information about him. tommorow he is going to have his MRI and i'm terrified.

 

fell free to contact me at my personal email: evitavitavita@gmail.com

 

miskha
Posts: 3
Joined: Jan 2013

HI there. my my father (54 ) is diagnosed with grade 4 glioblastoma.he had a surgeon 8 years ago and radiotherapy and chemo.. but now it came back more maligant. we cant't have an operation because the tumor is in the basic gaglia. we only had cyber knife and temondal.  the predictions are bad but we stay optimistic so far.  i read about a doctor from kosovo. i would like to have some further information about him. tommorow he is going to have his MRI and i'm terrified.

 

fell free to contact me at my personal email: evitavitavita@gmail.com

 

shiva_miracle
Posts: 2
Joined: Jan 2013

Dear All,

I need some help, my nephew 11 years old has been diagnosed with stage IV tumor in the  brain stem. He has undergone a surgery here in India on 08th Jan 2013 and now we are advised to undergo raidiation and chemo.

We are skeptical whether to go for such therapies as we feel it will be more of a torture for a small kid and would seek help to know what if we dont go for such therapies.

 

Even if we go for radiation or chemo the survival rate is almost "0", we are scared what kind of trauma the child and the family will undergo in the times to come.

Please share your experiences so that we get some more insight on the above issues.

 

Thanks in advance

Shiva

maria isabel
Posts: 19
Joined: Dec 2012

hi shiva,

we had the same problem as you as the neurosurgean and oncologist gave my mum little hope (3 to 12 months) but she had surgery and it went brilliant, SURGERY IS A MUST then the only hope to neutralised the cancer cells is radiotherapy and chemeotherapy......I feel that if you do not go through this stages you are throwing the towel....also you can then help with nutricion, Tumeric is great, water ph 7.5, NO SUGAR, lots and lots of fresh vegetables, no red meat.....

We can only try, the effects of the radiotherapy is not as bad as we think.....get advice from a different doctors, children are stronger that adults.

 

good luck and do not lose hope.

m. isabel

maria isabel
Posts: 19
Joined: Dec 2012

hi there,

my mum was diagnosed on the 3rd of december, she has had surgery succesfully and tomorrow we will start radiotherapy with chemeotherapy all toguether, the chemeotherapy orally, 7 days a week the radiotherapy 5 days a week. We are also giving my mum lots of natural suplements and we have cut off all sugars and yeast from her diet, she walks when she can to keep her blood oxigenated and we try to lead a normal life. When she was diagnosed the doctors told us that 3 to 12 months and I wanted to die. I think that medicine is not precised so I am just focusing that she is going to cope brilliantly with radio and chemeo and that we might feel rotten for a bit but then we will see the light at the end of the tunnel.....

Sending you strength and we are not alone .... we can all help each other.

Does anyboy knows how to get the best out of the radiotherapy and the chemeotherapy? the oncologist has just told me to give my mum the chemeo at home when is best for me but I wonder when is best? night? morning? they said empty stomach she has radiotheray in the morning, is the chemeo better before the radio or after?

the oncologist is such a nice man but does not talk a lot and he seems completely against natural therapies while I am open to everything, diet, supplements, meditation..... hometopathy ... anything in such a desperate situation so anybody can help please email me. 

thankyou 

maria isabel

manwithnoname
Posts: 408
Joined: Jun 2012

to search for Ben williams, google his name and GBM

shiva_miracle
Posts: 2
Joined: Jan 2013

Thanks Maria,

I am from India and we hope that there are some natural therapies / homeopathy that works well under such situations.

We have still not started with it however exploring such options, will definitely share if something comes up.

 

Cheers

Shiva

maria isabel
Posts: 19
Joined: Dec 2012

Hi Shiva

just to let you know that my mum has had a whole week of treatment now, radiotherapy 5 days a week and oral chemeotherapy 7 days a week and she has not been skick at all, only a bit tired, I am also feeding her just fruit, veg, fish and pulses....no meat and lots of roots and alkaline water.

she looks very well, i cant beleive it and I think that we can neutralised this horrible illness if we are persistant....but I also beleive that an agressive treatment is a must .

good luck and dont lose your hope.

m isabel

scorpio79
Posts: 25
Joined: Nov 2012

Hi Shiva

 

Very sorry to hear about your little niece...where in India do you live...my brother in law 28 years old had brain cancer...he did not survive and passed away a week ago...I know some good homeopathy treatments...but remember this cancer is very brutal...dont expect miracles...my whole family is depressed after losing him...

 

Hope you and your family stay strong...keep me posted if you need anything...

 

D

maria isabel
Posts: 19
Joined: Dec 2012

hi shiva, how is your nephew, my mum has finished her radiotherapy and her quimeotharapy, 30 and 49sessions! and she is doing so so well, only sick one day and we now have a lot more chances to survirval, the treatment has not been agressive she is doing normal life!

can you get Temodal in india??? let me know in case we can help

isabelx

maria isabel
Posts: 19
Joined: Dec 2012

hi shiva, how is your nephew, my mum has finished her radiotherapy and her quimeotharapy, 30 and 49sessions! and she is doing so so well, only sick one day and we now have a lot more chances to survirval, the treatment has not been agressive she is doing normal life!

can you get Temodal in india??? let me know in case we can help

isabelx

melevy
Posts: 5
Joined: Feb 2013

Hi all,

I was diagnosed with a grade IV GBM on Dec 31, 2012. Great way to start the new year, huh? Fortunately, unrelated to the tumor, I had a minor accident, and my Dr, thought I had a concussion and ordered an MRI. The tumor was only 3CM, which I understand is rather small for an initial finding. It was located in an easily accessible location, and I had a 2 hour  surgery Jan 8 2013. The surgeon reported that he got all of it, including a small margin to ensure there was none left behind. I start temodar & radiation on Feb 7. My Neuro-oncologist says that "everything looks as good as it possibly can" at this time, and he has people in his practice at 15, 17, and 26 years post-diagnosis, so I guess he knows what he's talking about.

I'm a 55YO male, and I live in the Chicago, IL area.

maria isabel
Posts: 19
Joined: Dec 2012

hello there,

how are you? how are you doing? my mum so far is responding good to the radiotherapy and to the temodar!

she is really strong, she feels tired some days more than others but thats all!

I am giving her lots of different multivitamins, and vegetarian diet, tons of fist and fruit....

I hope you are doing well too. 

love

m isabelx

 

maria isabel
Posts: 19
Joined: Dec 2012

hello there,

how are you? how are you doing? my mum so far is responding good to the radiotherapy and to the temodar!

she is really strong, she feels tired some days more than others but thats all!

I am giving her lots of different multivitamins, and vegetarian diet, tons of fist and fruit....

I hope you are doing well too. 

love

m isabelx

 

missy 1994
Posts: 8
Joined: Feb 2013

Hello, I do not know if I am writing on the correct post but in mere panic and desperation I have signed up for this site.

First off I know that this is an American site, I am currently living in the UK but let me tell you a little about myself.

Both my Ma and pa died, my brother and my grandma and the only person who is looking after me now is my grandpa- one day he was acting real weird and asked me if the "tv was melting" and just started speaking real funny- I ended up calling an ambulance and was told that my grandpa had gliblastoma grade 4. They removed a lot of the tumour and after being in hospital for 8 weeks he was back to normal and completely co-herrant -then after being home caring for my grandpops he then had a funny turn again and I panicked because I thought the tumour is growing back again. turns out he has pnemonia.

Anyways, to cut a long story short I am super scared I have no other family here in England and my aunt lives in America and thats all, Im super dooper scared my grand daddy is gunna die- the nurse told me he was gunna only live for two more months and this was before my grand daddy was examined by the doctors to find out he has pnemonia.  I just worry that with this brain tumour he will leave me too just like my other family all dead and I will be all alone, I love my grandaddy so very much and I am his fulltime carer at 19. I pray every night to my mother that things will get better but seeing him in hospital everyday when he is all confused, I worry if he will end up forgetting who I am. I keep thinking it is just the delirium caused by the pnemonia infection, as last week the m.r.i scan showed no tumour(he had um? 6 weeks of radiotheraphy i think?). I am just scared- I am sorry I posts a message on here because no one is giving me information they just think I am young and stupid but I need to know all the ins and outs.

Can someone please explain to me if gliblastoma makes people real confused kinda like not him anymore or is it alzeimers as he is 75 or is it the combination of the cancer and pnemonia causing him to be confused or the radiotheraphy. I know he is old but he doesn't act old or look old and was always really super fit then one day he had the tumour,im just scared thats all.. all I can hope is he gets better as I have no one else and as for my friends?, they stopped wanting to hang out with me now that I look after my grandpa but I guess thats just teenagers huh :(

thank you x

djwill5
Posts: 13
Joined: Feb 2013

I am sorry to hear about your Grandfather.  His confusion could be a number of things, including the tumor, medication, he could be dehydrated or his blood levels could be off.  There's no telling what it could be.  You may be young, but not stupid.  You are just fine posting on this site, you are looking for answers and doing the best you can with what you have.  You have alot to deal with and are doing a great job.  Hang in there kid!

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