Glioblastoma grade IV

cjtoth said:

I Can Relate
Hi Amy,

I am in a very similar circumstance as your husband. I was diagnosed with a very large, inoperable oligodendroglioma 8 years ago, at age 44. I was initially placed on corticosteroids (decadron and then prednisone) after my biopsy, gaining over 40 pounds, ballooning from 175 to over 215 pounds. I've lost a lot of the weight and look a lot better since tapering off of the steroids, but it has been very hard to shake some of the excess weight. From what my wife and family tell me, the steroids really did a number on my personality. I'm ashamed to say that I was apparently not a pleasant guy to be around. I can't remember most of the behavior I exhibited and other things they say I did. I thought that I could control myself and there was no way those tiny pills could have such a huge affect on me. I am happy to say that I reverted back to my old self after I slowly tapered off of the medications.

I was also treated with Temodar. Initially, I was on the same regimen as your husband for 24 months. After an 18 month break, my doctor noticed some new growth, and I did another closely-monitored 12 months. I absolutely hated the stuff, but it was a necessary evil. I am happy to report that my tumor appears to be fairly stable.

I realize that this has also been hard on my wife and kids (two daughters, currently 17 and 8 years-old.) I try not to complain about the rock in my head, and most days seem fairly normal. It is very frustrating for me however, because I don't think my wife fully understands how the tumor is affecting me. Because there are no outwardly-visible, physical symptoms, I think it's easy to forget I've got this thing. I also suffer from the stupid male-pride thing, not wanting to be a burden on anyone, thinking I can handle this just fine on my own. I keep a lot of my worries and fears from my family. I don't dwell on the fact that I have a brain tumor, but I still have my deeply funky moments - usually at very private times.

If your husband is anything like me, he's probably incredibly frustrated that he can't be there to provide for his family, in the same way he is accustomed to. I also want to make sure that my family is provide for and taken care of, in case things take a change for the worse.

Since your kids are in their teens, I can only suggest that you be honest about what is happening to their father. The teen years can be tough on the whole family under the best of circumstances. Unfortunately, they have to face something that most of their peers will never know, and they will be forced to grow-up a little more quickly. When my youngest girl was smaller, I simply told her I had a "brain-owie." Now I can be a little more honest with her. Make sure they understand that this is not his fault, or their fault.

Your husband probably has a very gentle psyche right now, so don't treat him like a helpless baby. It's important and therapeutic for him to feel like he can still do things and make positive contributions to support the family. I think he also realizes that this is hard on you and the kids, so don't feel like you have to be a martyr. Don't feel like you have to sacrifice everything to take care of him 24/7. He realizes that you need a break every now-and-then, so don't feel guilty that you need to "get away" from time to time. It will probably make him feel better, knowing that you and the kids can feel comfortable relaxing, taking a break every so often.

I hope all is going well for you and your husband, Amy. Although I have a different tumor than your husband, I think our circumstances are very similar.

Good thoughts are with you.

- Charlie

3sweetbabies said:

It's happening so fast...
My husband, John, who has been an athlete and coach his whole life, had a headache and a little nausea on October 17th. The headache never really went away, which was odd since he truly never gets headaches. He went to the doctor on Wednesday the 20th, was sent to have an MRI, and we discovered he had a 4 cm mass on his brain. Friday morning, we went to see Dr. Aulisi at Washington Center Hospital in D.C. who immediately admitted John. The tumor, he told us, was close to putting pressure on his brain stem, and they needed to operate as soon as possible. He told us it was likely a high grade.

They operated Monday, October 25th and were able to get the entire thing out, plus a clear margin. Three days later, they confirmed it was a grade 4 tumor. With John healing so well we were able to go home later that day, just three days after surgery. That was Thursday.

We have a 4 year old son, a 2 year old daughter, and an 8 week old baby boy. With the help of a wonderful friend, tonight we were able to all go trick or treating. I don't know how I am going to hold together-- I fluctuate from pretending nothing is wrong and making jokes, to snapping at the kids, to hiding so that I can cry. I have fibromyalgia and an anxiety disorder and am still feeling the affects from the third c-section. A wonderful community has swarmed around us and wrapped us in positivity and love, but I still feel lost and alone, angry scared bitter afraid lost...I don't know how to do this! I thought I'd look for a place like this to air some of this mixed up conglomeration of emotion, and appreciate any advice, insights, etc from those going through similar situations. Blessings from the universe/god to all of you and those you love...

summerjones said:

GBMIV
Hi Everyone, my wife was diagnosed with a frontal lobe mass in April, after complaining of massive headeaches for a few weeks, confirmed as gbm IV during surgery on May 24th. We were very fortunate to be treated at UCSF in San Francisco and she had a complete and successful surgery which removed about 95 percent of the tumor. She then did six wks of radiation and temodar when the surgery had healed, and is now on her second cycle of temodar 310/5days. Her first cycle was difficult with lots of fatigue during and after the five day cycle. We have changed the anti-nausea meds in hopes of alleviating some of the nausea. Overall, her hair has started to grow back now two months after radiation and all her cognitive and language skills are normal intact. The big game changer hopefully here is a vaccine that was made using a heat shock protein technique using her actual tumor so that she is being given a total of 22 vaccines over the course of a year and a half. Her attitude and approach to live are inspiring and we live in the moment most of the time.

amy020891 said:

Hi
Cathy,

Thank you for the thoughts and prayers. We are all doing ok. He had an MRI on March 9, 2009. He was put in the hospital that same afternoon because they did another test and found blood clots in his legs. He had a surgical pocedure to put a filter in so the clots could not go to his heart or lungs. They can not put him on blood thinners for fear of hemmoraging in the brain. His MRI showed no growth and also no shrinkage.

His joints and back are hurting him pretty bad. I am assuming that the cause is from the steroids.

We are pretty much at a stand still. He has temodar 300 mg. for 5 days and off 23. The doctor tells us when he sees progression of the tumor he will put him on avastin....until then we just kind of keep things the same.

Amy

hope4GBM said:

GBM - surgery 10/29/10
My husband age 56 also has GBM. I cant imagine what you are going through with 3 little ones. My heart and prayers go out to you. My girls are grown (30 and 28) and its been pretty hard on them. Maybe being so young is a blessing since they won't remember this rough time.
This site has helped- I just read where one man has had GBM for 8 years.
I also need support - I'm still in shock! We are going to Dana Farber in Boston and they are wonderful.
My husband has had 2 good MRI's with no new cell growth. He has his next one in June.
He is doing the standard treatment and is also on the trial drug- Zachiam every other day. He will finish his temodar phase in Dec and then just be on the trial drug as long as there is no change.
His was in his right tempral lobe. and they got all that was visible and got a clear margin around it taking an area of about the size of a lemon. The Doctors thought that he had only had the cancer for about 7-8 weeks and he was also very fit( ran and lifted weights). We are 7 months out and doing well.
He has personality change- worry is the biggest change that i see and he is extremely tired and never very happy. I'm hoping this changes ?

I'm here if you need to vent!
Think of you often-

Hope

DistancerunnerXC said:

I hear ya on the personality changes
Our doc had me take my wife to a psychiatrist.
The necrosis had been managed excpept for the cognitive problems but there are severe personality changes..
She told the psychiatrist right up front that she did not want to do housework anymore and when asked who does it, said "he does it",,,and when asked whether she thought she should help since I work all day and all that..laughed and said "no"...
Man, that made me mad. (and of course it should not have) and when her mom laughed about it and dismissed it, I hit the roof! (of course I shouldn't have)
All she wants to do she admitted was sit in front of the TV with her Charlie Brown security blanket and stare into the tube (she dosen't actually watch the tv)
21 months.
See, you gotta recognize these feelings as a caregiver and do something to handle them..I handled them wrong this morning when I flew off the handle about it..
What can you do?
I'm looking into occupational therapy but I am quickly coming to the conclusion that A:LL therapies are useless and it's just plain up to the poor victim of this disease whether or not they come out of this fog.
In the meantime, you have to understand that what you have is NOT a sspouse anymore..it's a time bomb or a kid..or a mill stone around the neck?
there, there i go again.

MAJW said:

I hope...
Your wife never knows you consider her a "milestone around your neck". My best friend just passed away 2 months ago from a Glioblastoma Multiforme Stage IV.....we all watched as we slowly lost the "person she was"...she fought this for 2 1/2 years....her personality changed, her memory was shot, she was had paralysis in her arm and leg....she was 52.....this can't be helped....this is considered a brain injury that can't be fixed....it's not a fog, something that she can "snap out of"! Don't you think she'd want to do ALL the things she did before illness struck her, if she could...I'd bet she be happy to trade off her illness for house hold chores....
Do you have friends or family members that could help with household things, meals etc.? Ask them...the worse that can happen is they say no...people really do want to help...and since they can't help the patient, this is their way of helping ! We set up a meal plan for my friend and her family...people signed up for certain dates...usually every other day, as there is usually enough for left overs....
Also find out about CLEANING FOR A REASON". They will clean once per month for four months for women under going cancer treatment...Then perhaps friends could fill in in-between...

Thankfully my friend had the most amazing husband...as do I as I have battled cancer myself....You should get into a support group yourself or therapy as a caregiver...you might find the help you need....I know it's a terrible struggle to be a caregiver....

hope4GBM said:

GBM - surgery 10/29/10
My husband age 56 also has GBM. I cant imagine what you are going through with 3 little ones. My heart and prayers go out to you. My girls are grown (30 and 28) and its been pretty hard on them. Maybe being so young is a blessing since they won't remember this rough time.
This site has helped- I just read where one man has had GBM for 8 years.
I also need support - I'm still in shock! We are going to Dana Farber in Boston and they are wonderful.
My husband has had 2 good MRI's with no new cell growth. He has his next one in June.
He is doing the standard treatment and is also on the trial drug- Zachiam every other day. He will finish his temodar phase in Dec and then just be on the trial drug as long as there is no change.
His was in his right tempral lobe. and they got all that was visible and got a clear margin around it taking an area of about the size of a lemon. The Doctors thought that he had only had the cancer for about 7-8 weeks and he was also very fit( ran and lifted weights). We are 7 months out and doing well.
He has personality change- worry is the biggest change that i see and he is extremely tired and never very happy. I'm hoping this changes ?

I'm here if you need to vent!
Think of you often-

Hope

hope4GBM said:

personality change
WoW! Sounds like you are struggling and very angery. Luckily my husband and I have a wonderful open door of communication and he is - other than a worry wart and having short term memory loss - very much the same person he was before GBM. He is exercising, cooking some, driving now, and trying to adjust to not having much energy. One thing very bothering is that we realize he probably wont be going back to work, but we 'll have to adjust to that. We have faith that he is going to be the Poster Guy for GBM survival.
Take care- be positive- good luck!
Hope