Brain cancer(Glioblastoma grade 4)

momsworld said:

hi there Annette
My daughter has AA3 brain cancer, alittle different than GBM4,but still a high grade brain cancer. Dealing with the 'not knowing' part is hard. My daughter was diagnosed in March 2010 and it has been a up hill battle ever since. I cried everyday for almost a year and now I am just sort of numb. People tell me to enjoy every minute with her(which I do do), and to be positive but, it can be so hard to be positive all the time. Sometimes I feel that time is slipping away and that everyday brings us closer to the end. I continue to pray for God to take care of her. I know he will, I'm not sure if it will be here or in heaven though. My daughter is 13yrs old and she hasn't had a chance to experience things in life yet, like her first kiss, drivers license, etc. If I could take her cancer away and give it to myself, I would. This is the hardest thing that we have ever had to go through and it is not over yet. Please keep in touch and let me know how your son is doing.
I will pray for your son.

having your child go through this is so painful
my daughter is 38 and single. 9 days after buying her first home and moving in i noticed some memory issues. she was being treated for an inner ear infection and a recent ct scan showed no mass. however i took her to the er on 9/6/11 and they did an mri which showed a 6 cm tumor in the fluid between the two sides of the brain. her doctors cannot find any other instance of the tumor being in this location. i completely understand what you are saying about coming near the end. i try to stay positive and pray and cry a lot. i have begged God to take this from her and give it to me. No parent should have to go through this with their child. She is doing well and is in the 4th week of chemo and radiation. They considered her tumor inoperaable.

I hope your daughter is doing well. I just wanted you to know how much i can relate to your pain.

Praying for both of you.

mcgoo1077 said:

My husband was diagnosed
My husband was diagnosed with grade 4 glioblastoma in July. He had surgery in August and just finished his 6weeks of chemo and radiation. The new MRI shows no sign of the tumor. He has had to keep taking decadron for swelling and last week started his year of Temodar.Our journey although scary has been blessed except for the personality changes. He is so angry and our kids don't understand why most days I don't either. Just wondered if anyone else has had experience in this area.

angry
The decadron will cause personality changes.

connsteele said:

The Green Meanies
Yes, it could be the Decadron. When our son was taking it, at times up to 24 mg, and it was hard. We called the pills the "Green Meanies." I would recommend talking to his doctor about when you he can begin tapering off the Decadron.

Decadron
Wow, I didn't know that someone could take 24 mg of decadron. That sounds like a lot to me. David took 4 mg, 4x a day, for 4 days. Now he's taking 4 mg. 3x a day for 4 days, and so on. The drs are trying to taper off, but I have serious misgivings. I'm afraid that David will start having all those issues that he had before his last BBBD treatment--and then they escalated so much after the treatment when his brain started swelling.

We haven't noticed any really bad side effects from steroids. David said he felt annoyed and crabby sometimes, and his joints hurt off and on. The biggest side effect has been his insatiable appetite, but he's so skinny that his increase in appetite and eating hasn't become a problem...yet.

I am really worried about his taking less steroids. The doctors told me to watch him very carefully as we started to taper off, and to let them know if David starts having headaches or if he doesn't talk very much or if he has any behavior changes. (When he has swelling and edema, it really impacts his speech.) It is so hard for me to be observant and not over-react. If David is tired and doesn't really feel chatty, then I wonder....if he has a headache---and he's had headaches almost nonstop since he was diagnosed in 2009---then I get really worried. I can't tell if it's from tapering off the steroids or if it's just David not feeling really great....I wish there was some definitive test, like a blood test, that would show if David is having trouble coming off steroids. The drs told me the way they tell is by his behavior and symptoms. And that's scary to me because it's basing a diagnosis on opinions.

When I told the drs how David was having these "frozen" episodes, they immediately said "seizures." I didn't think they were seizures and I was bothered that they were going to diagnose and treat David just on the strength of my description of how David was acting. And it turned out that it wasn't seizures but brain swelling. Luckily they didn't have time to put David on more anti seizure medicine before they realized that it was not seizures.

David is slowing fighting back to where he was before that last BBBD treatment. Today is one week since we came home from the hospital. David has made incredible progress but it's still really rough. His eyes look really bleary and tired, and he feels lousy all the time. And we are rapidly approaching the time where he will be due for another chemo treatment of some sort. I know that his tumor isn't just sitting there dormant while David recovers from the BBBD. But I don't know if David can handle another chemo treatment either. I called his NO and asked what their plan is for David. They haven't gotten back to me yet.

I love having David here at home with us, and he is making the best of it, but I know he is longing to be home in his lovely apartment in Portland. But he knows that he's not ready to go home and be on his own yet. We were hoping that he could go home by the first of Feb. but he still needs to do some therapy, and we don't know what shape he will be in after the next round of chemo.

I am just trying to take it one day at a time but it sure is a hard way to live. In the back of my mind is this feeling that right now is just a small window of time, a little lull in the storm, before we will be dealing with some really hard issues. That episode we just had in the hospital was a nightmare that I just cannot forget.....

Love and blessings,
Cindy

cindysuetoyou said:

Decadron
Wow, I didn't know that someone could take 24 mg of decadron. That sounds like a lot to me. David took 4 mg, 4x a day, for 4 days. Now he's taking 4 mg. 3x a day for 4 days, and so on. The drs are trying to taper off, but I have serious misgivings. I'm afraid that David will start having all those issues that he had before his last BBBD treatment--and then they escalated so much after the treatment when his brain started swelling.

We haven't noticed any really bad side effects from steroids. David said he felt annoyed and crabby sometimes, and his joints hurt off and on. The biggest side effect has been his insatiable appetite, but he's so skinny that his increase in appetite and eating hasn't become a problem...yet.

I am really worried about his taking less steroids. The doctors told me to watch him very carefully as we started to taper off, and to let them know if David starts having headaches or if he doesn't talk very much or if he has any behavior changes. (When he has swelling and edema, it really impacts his speech.) It is so hard for me to be observant and not over-react. If David is tired and doesn't really feel chatty, then I wonder....if he has a headache---and he's had headaches almost nonstop since he was diagnosed in 2009---then I get really worried. I can't tell if it's from tapering off the steroids or if it's just David not feeling really great....I wish there was some definitive test, like a blood test, that would show if David is having trouble coming off steroids. The drs told me the way they tell is by his behavior and symptoms. And that's scary to me because it's basing a diagnosis on opinions.

When I told the drs how David was having these "frozen" episodes, they immediately said "seizures." I didn't think they were seizures and I was bothered that they were going to diagnose and treat David just on the strength of my description of how David was acting. And it turned out that it wasn't seizures but brain swelling. Luckily they didn't have time to put David on more anti seizure medicine before they realized that it was not seizures.

David is slowing fighting back to where he was before that last BBBD treatment. Today is one week since we came home from the hospital. David has made incredible progress but it's still really rough. His eyes look really bleary and tired, and he feels lousy all the time. And we are rapidly approaching the time where he will be due for another chemo treatment of some sort. I know that his tumor isn't just sitting there dormant while David recovers from the BBBD. But I don't know if David can handle another chemo treatment either. I called his NO and asked what their plan is for David. They haven't gotten back to me yet.

I love having David here at home with us, and he is making the best of it, but I know he is longing to be home in his lovely apartment in Portland. But he knows that he's not ready to go home and be on his own yet. We were hoping that he could go home by the first of Feb. but he still needs to do some therapy, and we don't know what shape he will be in after the next round of chemo.

I am just trying to take it one day at a time but it sure is a hard way to live. In the back of my mind is this feeling that right now is just a small window of time, a little lull in the storm, before we will be dealing with some really hard issues. That episode we just had in the hospital was a nightmare that I just cannot forget.....

Love and blessings,
Cindy

Decadron
When I was diagnosed with AA3 in October of 2009, they admitted me and put me on Decadron first thing due to the swelling in my brain. They said that there was so much swelling that they could not believe I had not come to the ER sooner. They had to wait 9 days to do the surgery to let the Decadron help with the swelling. I had my surgery in Mobile, AL, and they sent me to UAB in Birmingham, AL after they discovered it was in fact AA3. My first visit to UAB in November 2009, the NO decided he was going to start weaning me off of the steroids. This was almost a full month after surgery, and while my Husband and my Dad had me in Birmingham, I threw a fit in the truck, kicking the dash, punching the ceiling, and put all of our lives in danger. My husband pulled to the middle of the road trying to get me to calm down, and my poor Daddy looked so helpless. I don't know what got into me, because up to that point I was the most positive person ever! When we got to the hotel I jumped out of the truck went into the room and locked myself in the bathroom. I called my cousin who lived in Ohio and talked to her, and she finally talked me into coming out of the bathroom. If you look up Decadron, you will see that it is a VERY strong steroid! My biggest fear throughout the whole time of my treatment was that I would keep doing things that were so out of character for me, and make my family despise me. They all told me that nothing I could do would make them love me less. Once we got home from that appointment, we went to a birthday party. It was the night before Thanksgiving 2009, and as soon as we walked in the door of our house I started seeing the little Kaleidoscope shapes that they informed me were seizures. They said if I started seeing them go straight to the ER. I told my husband I was seeing them, but I felt fine and call someone to keep our two year old daughter. My cousin came, and we got in the truck and I remember telling him he did not have to drive fast because I felt fine. By the time we got to the end of our road I asked him to turn on his flashers and drive a little fast because I felt funny, but that I would be ok. By the time we got to the interstate (All this in less than a 5 minute period) I told him he needed to get there as fast as he could something was really wrong. I don't remember anything after that, and when I woke up in ICU on Thanksgiving morning I had had over 21 seizures throughout the night. I was in the hospital for 8 days, and 6 of those days I had at least 20 seizures a day, and nothing they did would control it. My husband kept telling them that he thinks the Dr. at UAB started tapering me off of the steroids to fast. Finally the 6th day they increased my steroid back to before the UAB visit, and the seizures stopped. I do believe the Caregivers do know a lot more about the patient just from giving them constant care. Just be sure that when they start weaning you/or a loved one off of the steroids to pay attention to the behavior like they said. I also have always been a little person, and I had to take snacks with me everywhere I went. Our grocery bill more than doubled while I was on the steroid. Think of it this way though. The more food they eat the more energy and strength they will have. That was the first and only time (Praise God) that I had seizures. I have had a clean MRI for 2 years and almost 3 months. I go back for my 3 month MRI on January 18th, so please keep me in your prayers that day. I will also keep you in my prayers as well.

Caregivers: Like I said, my biggest fear was that I would make my loved ones hate or despise me; just know that it is that medicines and the disease, not the one you love acting the way they may act!

chicken2799 said:

Decadron
When I was diagnosed with AA3 in October of 2009, they admitted me and put me on Decadron first thing due to the swelling in my brain. They said that there was so much swelling that they could not believe I had not come to the ER sooner. They had to wait 9 days to do the surgery to let the Decadron help with the swelling. I had my surgery in Mobile, AL, and they sent me to UAB in Birmingham, AL after they discovered it was in fact AA3. My first visit to UAB in November 2009, the NO decided he was going to start weaning me off of the steroids. This was almost a full month after surgery, and while my Husband and my Dad had me in Birmingham, I threw a fit in the truck, kicking the dash, punching the ceiling, and put all of our lives in danger. My husband pulled to the middle of the road trying to get me to calm down, and my poor Daddy looked so helpless. I don't know what got into me, because up to that point I was the most positive person ever! When we got to the hotel I jumped out of the truck went into the room and locked myself in the bathroom. I called my cousin who lived in Ohio and talked to her, and she finally talked me into coming out of the bathroom. If you look up Decadron, you will see that it is a VERY strong steroid! My biggest fear throughout the whole time of my treatment was that I would keep doing things that were so out of character for me, and make my family despise me. They all told me that nothing I could do would make them love me less. Once we got home from that appointment, we went to a birthday party. It was the night before Thanksgiving 2009, and as soon as we walked in the door of our house I started seeing the little Kaleidoscope shapes that they informed me were seizures. They said if I started seeing them go straight to the ER. I told my husband I was seeing them, but I felt fine and call someone to keep our two year old daughter. My cousin came, and we got in the truck and I remember telling him he did not have to drive fast because I felt fine. By the time we got to the end of our road I asked him to turn on his flashers and drive a little fast because I felt funny, but that I would be ok. By the time we got to the interstate (All this in less than a 5 minute period) I told him he needed to get there as fast as he could something was really wrong. I don't remember anything after that, and when I woke up in ICU on Thanksgiving morning I had had over 21 seizures throughout the night. I was in the hospital for 8 days, and 6 of those days I had at least 20 seizures a day, and nothing they did would control it. My husband kept telling them that he thinks the Dr. at UAB started tapering me off of the steroids to fast. Finally the 6th day they increased my steroid back to before the UAB visit, and the seizures stopped. I do believe the Caregivers do know a lot more about the patient just from giving them constant care. Just be sure that when they start weaning you/or a loved one off of the steroids to pay attention to the behavior like they said. I also have always been a little person, and I had to take snacks with me everywhere I went. Our grocery bill more than doubled while I was on the steroid. Think of it this way though. The more food they eat the more energy and strength they will have. That was the first and only time (Praise God) that I had seizures. I have had a clean MRI for 2 years and almost 3 months. I go back for my 3 month MRI on January 18th, so please keep me in your prayers that day. I will also keep you in my prayers as well.

Caregivers: Like I said, my biggest fear was that I would make my loved ones hate or despise me; just know that it is that medicines and the disease, not the one you love acting the way they may act!

Dear Chicken2799
Always know that we caregivers love those that we are caring for very much. We care for you with all our heart and we do not hate you. We get discouraged sometimes but we understand that you are fighting for your life and we will do anything to help you to feel better. My husband is always apologizing to me. I tell him he does not need to apologize to me. I care for him from my heart and his happiness is my happiness. His pain is my pain. I know my husband loves me with all his heart as I do him and nothing can make me think otherwise. Chicken2799- Know that you are loved always.

jo5912 said:

Dear Chicken2799
Always know that we caregivers love those that we are caring for very much. We care for you with all our heart and we do not hate you. We get discouraged sometimes but we understand that you are fighting for your life and we will do anything to help you to feel better. My husband is always apologizing to me. I tell him he does not need to apologize to me. I care for him from my heart and his happiness is my happiness. His pain is my pain. I know my husband loves me with all his heart as I do him and nothing can make me think otherwise. Chicken2799- Know that you are loved always.

Thanks
Thank you so much for the reassurance. You have already been through so much, and I agree you are a very tough Woman! I will keep your family in my prayers! I too think you have come to the right place, there are alot of caregivers as well as patients on here.

Prayers coming your way!

Michelle
Mobile, Al

vijithashwin said:

Have a positive frame of mind
I was diagnosed with GBM Grade 4 a week back. I already undergone a surgery in the second week of March. The doctors say that they have removed the tumour completely. Thankfully I had no side effects like mobility issues or paralysis after the surgery, which they say that its a very good sign. Infact as of now, I feel almost normal. My radiation and chemo sessions is due to start next week.
I know this tumour is most aggressive. But I feel that having a positive frame of mind is very necessary to fight out this dreadful disease. I have a very supportive wife who gives me the required motivation. Though it is said that the 99%, the tumour will reoccur, Im looking forward at the balance 1 %.
Its really nice to meet similar people across the globe. My motto is dont get depressed at any point and think positively.

Expecting some favorable replies

Regards

Vijith

1 year ago today
Exactly 1year afo today I was diagnosed with a brain tumor. Turned out to be a GBM. It's scary, man. Positive strides are being made every day. I had an MRI yesterday, still clean and perfect.

Seek out the kind of treatment that fits you; for me it was whatever it takes which led me to Duke university where I am enrolled in a phase 2 clinical trial using Gliadel wafers (second craniotomy), radiation, Temodar, then more Temodar in combination with Avastin. It's working for me, my initial doc offered me a death bed, I found a new doc. Trials aren't for everybody, but it was, and is, right for me.

I am back to work, feeling great and frankly, often forget I'm the dude with brain cancer!!!

I complete the trial in July and should have my next plan by June. I feel like I am winning. With a math background I came up with the following phrase based on statistics -- "I am a sample of 1". Meaning, the survival rates are scary, so I quit looking, first doc gave me 9 months as an average, I am no average, I am a sample of 1 and I'll tell you MY stats as time goes on, not the other way around. My family liked it so much they gt me a t-shirt that has a big "N=1" n the front and back. Kinda math geeky, but I love it.

You have a great motto, stay positive and strong! It's easy to get shepherded along a path of your docs choosing, don't let them take you in a direction you dont want to go. There is hope out there!!!

vijithashwin said:

Great inspiration
Thanks dude for such encouraging words. This is the kind of support we need. You are strong and have a very positive outlook towards the God gifted life. It is definitely true that whatever doctors say is just some averages and statistics. The inner strength of people is much bigger than these statistics.

This is what I will be following. I have another inspiration round the corner. Im expecting my first baby in August. What more can be a better inspiration than looking towards the new life, my baby. As I said Im looking forward to the 1 % chance that it wont reoccur. Even if its the other way around this **** wont do anything to me.

I sincerely pray to God that this 1 year of survival becomes 25 years and more.

N=1
I do think the percentages are better than 1%, my first doc told my family " they always come back." Well, I am still here to tell you that's not true. I have found many long term success stories. They can't claim anyone "cured" because it's cancer, technically it's remission. Call it what you want, I am tumor free and back to my normal life. Because the treatments are rapidly improving recently, it's hard to see the long term affects of the new stuff simply because enough time hasn't passed to measure it. I'm one year in and expecting to die of heart disease or something other than this 30-40 years form now....haha; sort of.

I had a few people ask me if it was okay tompray for me which surprised me a little in the sense of 'who would say no?'. I happily accept any and all positive thoughts and support. I have some Indian friends who joked they had spread the word and they had "every God covered" which I thought was pretty funny....and cool. My Radiation Oncologist was a spiritual guy too who is onvinced I was sent to him ror a reason. He was my second Rad Onc, the first didn't offer hope; my second one in stayed with, he matched my desire to win and belief it wasn't over yet.

I can't not address the pending new addition to your family, I'm no counselor so all i can really offer is -that sucks, man! And, some hope though my story. This nasty stuff gets all kinds of people at really bad times. My first few months pretty much sucked. Family and friends support and all that as great. I had to steel myself everyday to the realities I was facing; I had to wake up my wife a few times during the night for comfort and reassurance; and she the same thing a few times. Roller coaster we could ot find a way off of. It took a while, but I got my life back.

If you decide to seek out more than the standard course of treatment, rad + chemo, sadly, one of the first questions is "what kind of resources docyou have?". Sadly, because that means money. I found a lot of good things going on in the clinical trial space at Duke University, university California San Francisco, MD Anderson, NIH and Johns Hopkins I recall. I liked what I found at Duke, they offered me options and hope.

Can Relate :
Aloha Mary :

As far as the De bulking on your mothers tumor , mine was also done , not full extraction , the dr's
went for a biopsy and grabbed as much as they could , was diagnosed back in Aug - 11 . with . stage 4 Glioblastoma , Have finished 20 full brain radiation procedures , 5 days a week for 4 weeks ,, that procedure shrunk my golfball sized tumor in half ,, ended in oct last yr ,,

Side affects, was put on dexamethasone , for the edema .. I lost plenty of of my balance , cognitive skills , memory , and other automatic skills ,, i am now 7 months into this nightmare ,, but not quiting for nothing ..

2 weeks ago i underwent a gamma knife procedure , ( focused radiation ) and have had some side affects from it as well ,, ,, but i can tell you this ,, im still alive ,, plugg away daily ,, be the best care giver you can for your mother ,, she needs it , to help get through her fears ...

Good luck ,, im in hopes that she gets her stuff back ,, i lost ,, regained ,, lost ,, many skills,,

but still get by daily ,, HOPE ,, is a great thing !! ALOHA KEN

Gioblastoma multiforme grade 4
I have the same tumour well the effects of hsving had it. I was diagnoed September 2011 re severe seizures and no balance and memory and thought process changes. I had removal surgery Jan 2012 then infection and bone flap removela Feb 2012. I am now goin through radio 30 treamnt and oral chemo for 6 months - completely exhausting but hate being so unwell ith a poor prognoisi. However as a Christisn I know it is only God`s prognosis that ounts but it is till wearing me down in ever way.....I do feel very alone in this as it is pretty rare.