Stage 4 Glioblastoma - new

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Stage 4 Glioblastoma - new

by Caro7lk on Fri May 15, 2009 12:00 AM

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Hi, my  name is Caroline and I'm new to this discussion.  My father, 66, was just diagnosed with Stage IV Glioblastoma.  I don't know where -my parents (Dad and Stepmother) are shady on releasing the details, they think it will upset me - back, upper right hand side is the most clinical I can get I'm afraid.  

They've told him most people with his diagnosis have about 9 months but because he was healthy and showing no signs (they found it because he went to the ICU with septicaemia from something entirely different) he may have as many as 2 or 3 years left.  He's currently undergoing chemo and radiation.  He seems fine - a little slower, less sure on his feet after his operation to remove what they could - but out doing his gardening, etc. nonetheless.

I want to know what I can expect. I've seen Cancer - my maternal grandmother battled it for years and died horribly, RIP.  I know what it does to you.  My parents haven't seen it and they think they are shielding me.

Will someone please tell me what I can expect?  Real time frames, real symptoms/declines/speeds.  

Are there any questions I can ask without being too pushy? My Stepmother has already said she doesn't want me to overwhelm her with research (my first reaction to any problem) and false hope.  I can understand that but I need to know what's going on so I won't be side-blinded.

Sorry - not a lot to go on.  I'm new to this and I have to say to everyone who is experiencing it - as a victim or a supporter, my heart goes out to you.

Caroline

RE: Stage 4 Glioblastoma - new

by Gbm_Survivor on Fri May 15, 2009 12:00 AM

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I was dx with stage 4 GBM 8/2006 at 54 yrs. old.

I was in great physical shape with agressive and doctors with substantial GM experience so we threw all the ailable  treatment options at it. That included resection of the tumor.  I was very lucky in that it was a nice marble size tumor they could access and remove.  It was on n my right parietal lope, so being right handed, that was a blessing, too.

I hope you can convince your parents to bring you into the loop.  They will need all the love and support you can provide as you dad progresses on his journey. Even if they block you out, do your research, just present it them gently and with optins.

You know, this is what Ted Kennedy has, though they don't come out and indenify it as GBM that I have heard.  Too bad, it would probably give a lot of patience and caregivers hope.

 

it couthey werwe able removelots of focused bea radiation

Only, now, 3 yrs later am I having to slow down.some.

I lost my left peripheraldfer vision on thw last radiation blast and am now pretty shakey on my feet.  I use a cane in the garden.

I am taking examthesome for the swelling (due to radiation) effect and will be  starting a regime of Avastin, soon, to address the swelling in another way.

Dexa methesome is a steroid that swells me up and increases my appetit. So, instead of my previous 120-130 pound I sit at a steady 160 lbs.  Makes it a lot harder to get around.

The plan is that with  the Avastin I can stop the steroid qand the swellin will decrease givcing me better balanc3 and thus mobility.

 

My best advice is good nutritionand mild exercis, whatever might have been being done befor.

You want to avoid frustration, so no new complicated regimes, unless, of course, your Dad loves that stuff.  I hope some of this was helpful to you.  I have flagged the message, so I'll see if/when you respond.

Being the patient, I really do not know what the caretaker side looks like.  I know it is hard and the longer it goes on, it just gets mor so.

My husband has been a saint, but we all have our limits.  Push gently to get you folks to let you on board.  May one of their dontors could help with that.

H should have a few.

Sincerely and Goo bless you.

Debbie

 supplements, whole foods and a positive attited.

The first book read after being dx'd was Love Medicie and Miracle by Dr. Bernie Siegle.Your whole family would get a lot out of it.  He addresses the need to be forthcoming on any health issue and don' let any doctor give you a time line.  We are the deciders of our destinies to a large extent.

 

 8/06 and am doing well right now.

I have had masive amounts of radiation, so I really don't think it will come bck.

RE: Stage 4 Glioblastoma - new

by madonnav on Fri May 15, 2009 12:00 AM

Quote | Reply

Caroline;

I am very sorry that your Dad has been diagnosed with this nasty disease.  I am sure your parents are trying to deal with this without you getting too much misinformation.  The statistics are dismal but please take heart that there are many longer term survivors. This site is a wealth of information if you read old posts.  Also it is a great source of support and sharing.  You sound like you are into research which is good.   You will see that there are different trials.  Initially there is the standard of care that most patient will get, rad/temador, then temador, mri every 2 months.  If there is progression there are alternative treatments.  When you google brain tumors go to the various sites and read caregiver information and survival stories.  Please know that everyone on this site is here for eachother, questions, venting, anything.  Again I am sorry  you are on this journey.

Donna, w/o Rob, 45, DX 12/08, GBM4

RE: Stage 4 Glioblastoma - new

by Caro7lk on Fri May 15, 2009 12:00 AM

Quote | Reply

 thanks Debbie - I really appreciate you writing back and I'll keep you informed. This is all relatively new - he was only diagnosed 2 weeks after Easter, but I'll work on my folks.

Caroline

On 5/15/2009 Gbm Survivor wrote:

I was dx with stage 4 GBM 8/2006 at 54 yrs. old.

I was in great physical shape with agressive and doctors with substantial GM experience so we threw all the ailable  treatment options at it. That included resection of the tumor.  I was very lucky in that it was a nice marble size tumor they could access and remove.  It was on n my right parietal lope, so being right handed, that was a blessing, too.

I hope you can convince your parents to bring you into the loop.  They will need all the love and support you can provide as you dad progresses on his journey. Even if they block you out, do your research, just present it them gently and with optins.

You know, this is what Ted Kennedy has, though they don't come out and indenify it as GBM that I have heard.  Too bad, it would probably give a lot of patience and caregivers hope.

 

it couthey werwe able removelots of focused bea radiation

Only, now, 3 yrs later am I having to slow down.some.

I lost my left peripheraldfer vision on thw last radiation blast and am now pretty shakey on my feet.  I use a cane in the garden.

I am taking examthesome for the swelling (due to radiation) effect and will be  starting a regime of Avastin, soon, to address the swelling in another way.

Dexa methesome is a steroid that swells me up and increases my appetit. So, instead of my previous 120-130 pound I sit at a steady 160 lbs.  Makes it a lot harder to get around.

The plan is that with  the Avastin I can stop the steroid qand the swellin will decrease givcing me better balanc3 and thus mobility.

 

My best advice is good nutritionand mild exercis, whatever might have been being done befor.

You want to avoid frustration, so no new complicated regimes, unless, of course, your Dad loves that stuff.  I hope some of this was helpful to you.  I have flagged the message, so I'll see if/when you respond.

Being the patient, I really do not know what the caretaker side looks like.  I know it is hard and the longer it goes on, it just gets mor so.

My husband has been a saint, but we all have our limits.  Push gently to get you folks to let you on board.  May one of their dontors could help with that.

H should have a few.

Sincerely and Goo bless you.

Debbie

 supplements, whole foods and a positive attited.

The first book read after being dx'd was Love Medicie and Miracle by Dr. Bernie Siegle.Your whole family would get a lot out of it.  He addresses the need to be forthcoming on any health issue and don' let any doctor give you a time line.  We are the deciders of our destinies to a large extent.

 

 8/06 and am doing well right now.

I have had masive amounts of radiation, so I really don't think it will come bck.


 

RE: Stage 4 Glioblastoma - new

by Caro7lk on Fri May 15, 2009 12:00 AM

Quote | Reply

 Thanks Donna,

 It's good to know there is a forum like this available to answer questions.  I will ask my parents what my father's prescription of care is.

 

Caroline

On 5/15/2009 madonnav wrote:

Caroline;

I am very sorry that your Dad has been diagnosed with this nasty disease.  I am sure your parents are trying to deal with this without you getting too much misinformation.  The statistics are dismal but please take heart that there are many longer term survivors. This site is a wealth of information if you read old posts.  Also it is a great source of support and sharing.  You sound like you are into research which is good.   You will see that there are different trials.  Initially there is the standard of care that most patient will get, rad/temador, then temador, mri every 2 months.  If there is progression there are alternative treatments.  When you google brain tumors go to the various sites and read caregiver information and survival stories.  Please know that everyone on this site is here for eachother, questions, venting, anything.  Again I am sorry  you are on this journey.

Donna, w/o Rob, 45, DX 12/08, GBM4


 

RE: Stage 4 Glioblastoma - new

by flfrog on Fri May 15, 2009 12:00 AM

Quote | Reply

I am first sorry that you are having to go through this and my only advice is to read read read.  Everyone is different so there is no way to know exactly what the future holds.  My father 54 at the time was diagnosed 11/07 when they removed 90% of the tumor.  He did proton therapy (type of radiation) and temodar and then did 6 months temodar and was off treatment and fine from July of 08 until a reoccurence in March of this year he is currently on a clinical trial and gets his next MRI 5/28 and we'll see if it's working. Just prepare yourself for anything.  When we left the hospital they told us dad would have some initiation issues.  He had a sever reaction to the steroids and was very angry and doing things like carrying a knife and telling people he could kill them and not feel bad about it.  He went through a series of anti psychotic medicines until we got him leveled off.  Slowly his short term memory has decreased to the point that he forgets things within minutes and over the past few weeks he has started hallucinating and before when we could tell him things didn't exist he would accept them where now he argues with us.  His self awareness is gone and it's harder to get him to take a bath or get him to appointments on time.  I wasn't preapred for these mental changes...I had thought he would physically decline but it's very hard accepting the mental changes which are permanent.  Just enjoy every moment you can with your dad because down the road your relationship will change and they become more like a child although I'm my dad's primary caregiver as he is not married so hopefully with him having wife she'll bear the brunt of the caregiving so you can continue to enjoy him as your father.  They gave my dad 6 to 18 months and tomorrow will be the 18 month anniversary.  My husband is a 4th year medical student so we are very aware of the diagnosis and the outcome so just know that eventually the tumor will win, but fight it with everything.  If your dad does go mental like mine, just remember when he's crazy it's the tumor and not him!!!  Be strong, it's a long journey ahead.   Be sure to take time to take care of you and also make sure your stepmother gets a break you'll need each other!  Blessings to you all!

RE: Stage 4 Glioblastoma - new

by Loyce on Fri May 15, 2009 12:00 AM

Quote | Reply
 Six months post-surgery for the GB IV Husband Jack was "given" six months by the surgeon and now Jack enters his sixth year of survival.  Fighting cancer is a war and wars are best fought and won with a positive take-charge attitude.  Partner with your doctors, support yourself with positive fam/friends.  Research and learn and ask questions because you can empower yourself with wisdom and information and caregivers and patients need empowerment to win the war.  Go forward, look up. 

RE: Stage 4 Glioblastoma - new

by Gbm_Survivor on Fri May 15, 2009 12:00 AM

Quote | Reply

 

On 5/15/2009 Caro7lk wrote:

 thanks Debbie - I really appreciate you writing back and I'll keep you informed. This is all relatively new - he was only diagnosed 2 weeks after Easter, but I'll Caroline,good luck with yourfolks.  Is there some who cound help you talking/convincing them that it is for the best of all that you know exactly what's going on.

It will be so much better for everyone if if you have same inforation.and can share what you find out on line or wherever.

There is a lot out there.

 

Also, to be sure you have right docors involved.

I have an oncoogist Neurologist, Radiologist and surgeon.    The Neurologist is sort of the umbrella,  who okeeps things organized and moving aon, though we do a lot of that ourselves.

aSK HIM/HER WHAT HE SEES HIS ROLE AS.

aSK THEM ALL hto define their role in the healing process.

Get them on board that this doesn't have to be fatal in X amount time, or even at. all.

Every one's attitude who is involved affects the out come.

Good luck.  I know some of this may be difficult to acheive, at least at the on set.

Please keep in the loop.

I am on medical leave from work right now, so am able to read and post message. in a somewhat timely manner.

Sincerely,

debbi

Th Power of Positive thinking goes a long way.

 

Don't hesitate to question what they say. Have them explain, if you don't understand.  I's their job and they should be agreeable to do that.

Go to some one else if you don't connect with 1 or more of them.

They are doctos, but only people, too.

 

I have broken down barriers by calling them by their first names and giving them hugs.

Remember, they see a lot of really sick people every day and a little love is always welcome, even if they are v very stiff to start with.

Believe me, it works.

You'll really ge it after you read Bernie Seigle.

with them

Caroline

On 5/15/2009 Gbm Survivor wrote:

I was dx with stage 4 GBM 8/2006 at 54 yrs. old.

I was in great physical shape with agressive and doctors with substantial GM experience so we threw all the ailable  treatment options at it. That included resection of the tumor.  I was very lucky in that it was a nice marble size tumor they could access and remove.  It was on n my right parietal lope, so being right handed, that was a blessing, too.

I hope you can convince your parents to bring you into the loop.  They will need all the love and support you can provide as you dad progresses on his journey. Even if they block you out, do your research, just present it them gently and with optins.

You know, this is what Ted Kennedy has, though they don't come out and indenify it as GBM that I have heard.  Too bad, it would probably give a lot of patience and caregivers hope.

 

it couthey werwe able removelots of focused bea radiation

Only, now, 3 yrs later am I having to slow down.some.

I lost my left peripheraldfer vision on thw last radiation blast and am now pretty shakey on my feet.  I use a cane in the garden.

I am taking examthesome for the swelling (due to radiation) effect and will be  starting a regime of Avastin, soon, to address the swelling in another way.

Dexa methesome is a steroid that swells me up and increases my appetit. So, instead of my previous 120-130 pound I sit at a steady 160 lbs.  Makes it a lot harder to get around.

The plan is that with  the Avastin I can stop the steroid qand the swellin will decrease givcing me better balanc3 and thus mobility.

 

My best advice is good nutritionand mild exercis, whatever might have been being done befor.

You want to avoid frustration, so no new complicated regimes, unless, of course, your Dad loves that stuff.  I hope some of this was helpful to you.  I have flagged the message, so I'll see if/when you respond.

Being the patient, I really do not know what the caretaker side looks like.  I know it is hard and the longer it goes on, it just gets mor so.

My husband has been a saint, but we all have our limits.  Push gently to get you folks to let you on board.  May one of their dontors could help with that.

H should have a few.

Sincerely and Goo bless you.

Debbie

 supplements, whole foods and a positive attited.

The first book read after being dx'd was Love Medicie and Miracle by Dr. Bernie Siegle.Your whole family would get a lot out of it.  He addresses the need to be forthcoming on any health issue and don' let any doctor give you a time line.  We are the deciders of our destinies to a large extent.

 

 8/06 and am doing well right now.

I have had masive amounts of radiation, so I really don't think it will come bck.


 


 

RE: Stage 4 Glioblastoma - new

by DaddysGirl_3 on Fri May 15, 2009 12:00 AM

Quote | Reply

 

On 5/15/2009 Caro7lk wrote:

Hi, my  name is Caroline and I'm new to this discussion.  My father, 66, was just diagnosed with Stage IV Glioblastoma.  I don't know where -my parents (Dad and Stepmother) are shady on releasing the details, they think it will upset me - back, upper right hand side is the most clinical I can get I'm afraid.  

They've told him most people with his diagnosis have about 9 months but because he was healthy and showing no signs (they found it because he went to the ICU with septicaemia from something entirely different) he may have as many as 2 or 3 years left.  He's currently undergoing chemo and radiation.  He seems fine - a little slower, less sure on his feet after his operation to remove what they could - but out doing his gardening, etc. nonetheless.

I want to know what I can expect. I've seen Cancer - my maternal grandmother battled it for years and died horribly, RIP.  I know what it does to you.  My parents haven't seen it and they think they are shielding me.

Will someone please tell me what I can expect?  Real time frames, real symptoms/declines/speeds.  

Are there any questions I can ask without being too pushy? My Stepmother has already said she doesn't want me to overwhelm her with research (my first reaction to any problem) and false hope.  I can understand that but I need to know what's going on so I won't be side-blinded.

Sorry - not a lot to go on.  I'm new to this and I have to say to everyone who is experiencing it - as a victim or a supporter, my heart goes out to you.

Caroline


Caroline,

I am so sorry you are having to go through this. It is not a club I ever wanted to be a part of, but when my dad was diagnosed last July at 56, I did the same as you and dove into research.

The research does help, but it is also negative in some ways. The most important thing to remember is that the numbers you see are only estimates. Each person responds differently and medications are improving all the time. The research told me that the average time for my dad was 15-18 months, but I find that hard to believe. He is doing so great and his MRIs have been clear since his radiation/chemo was completed last year. Just remember that no one knows your dad's body, even his doctor.

Go to www.virtualtrials.com or google David M. Bailey if you want to read some awesome survivor stories! People are living years and even decades with this disease. It IS NOT a death sentence.

I know when you don't know what is going on, what you can imagine is worse, so try to attend Dr. appointments with your dad or at least try to talk to the dr. in general terms if he cannot be specific about your dad. Knowledge will make it scary at times, but better than what you will imagine without it.

Good luck and God Bless your dad.

RE: Stage 4 Glioblastoma - new

by FLGator on Fri May 15, 2009 12:00 AM

Quote | Reply

Caroline,

I am sorry to hear that your father has been diagnosed with GBM.  My wife of 17 years was diagnosed with Gliosarcoma (rare form of GBM) on 2/1/09. She had a very successful retraction of the tumor.  Of course, the surgeon, with his sterling bedside manner proceeded to come out of the operating room and tell me, my 27 year old daughter and my mother-in-law that with aggressive treatment my wife would survive for 14 months.  Surgeons, you've gotta love em'.

Anyway, immediately after surgery she started a regamine of steroids (dexamethazone) for the swelling and Kepra for seizures.  She began her first round of chemo (temodar) and radiation.  The temodar was via capsule so she really didn't have many side effects from her treatments.  The steroids caused her to swell up and increaed her appetite.  The first round of treatments was 6 weeks (daily chemo, every weekday radiation)

On 4/30 we had our first MRI post-treatment and her Oncologist found what appeared to be new growth near the tumor site.  A PET scan confirmed the new growth.  She begins intravenous chemo next week which she will take every other week.

She has tried to wean herself off of the steroids but hasn't been able to.  She takes Tylenol extra strength to manage headaches from the swelling.  She has stronger RX if the OTC drugs don't handle the headache but she tries to stay off of them.

Since we're in the fairly beginning stages I can't give you a great deal of information beyond what I've provided.  I do think that my wife's positive attitude goes a long way.  I don't know where your dad is spiritually but we are strong in our faith which helps fend off dispair.  The bottom line is, we're all terminal - it's just a matter of when our lives will be required of us.  I am healthy as a horse but could drop dead from a medical condition or get in a car accident.  This event has been a reminder of how we should have been living our lives all along.

I pray that your parents will allow you to share in this and to help your father where you can.  These trying times can be amazing opportunities to share such special times.  God bless you.

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