GBM IV

urban_sky

Back in early October, we learned that our 63 year-old Mom has a grade IV Glioblastoma Multiforme in her frontal lobe. The first (and only) symptoms she presented were impaired memory and cognitive skills.

She immediately underwent surgical de-bulking of the tumor, and a couple of weeks later, started three weeks of radiation therapy. When she finished her RT on December 1st, she seemed in good health, and good spirits. She was like 90% herself again! Her follow-up wasn't scheduled until early January, so we concentrated on pulling together a great Christmas for Mom (believing this may be her last since we were given the standard "year").

Around Christmas, we started to notice slight behavioral changes, but very minor and thought it was the side effects of RT. Then, about two weeks ago, she took an alarming turn for the worse, and has since been hospitalized. She is actually worse than she was before she was diagnosed; when she talks, she makes very little sense; almost as if she is in some dream world. It has been unbelievably frustrating, as I would gladly do anything to help her, but she is often unable to formulate a request.

Her MRI has come back clear so far, which has caused much head scratching amongst the MDs. One initial theory was around her medications, but has since been scrubbed as the reason for her rapid decline. The MDs believe the tumor has come back already, but in some form that is evading detection at the moment.

So, why am I here? I guess mostly to find others who have or are currently going through this. There have been many occasions that I have felt completely alone and isolated. For me, life ground to a halt in October. I'm 28, and never expected to become the primary care giver of my Mom so soon.

I also hope I can offer some advice. Spend as much time with your loved ones as you possibly can. You just never know. We had plans to take an art course together and maybe even go on a nice warm vacation together, but it seems that may be cut short. We just thought we had more time. Family support is so important when dealing with something like this, and I feel this is a great opportunity to mend any broken fences – there is power and strength in numbers. Don't lose out on this chance to say, "I'm sorry" or "I love you", as again, you just never know...

nanc721

So sorry to hear about your Mom, urban...My 51 year old husband was dx'd with GBM on Mother's Day, 2003. Had surgery that day, then 8 weeks of radiation, and will continue with chemo for 2 years. Unlike your mom, he is doing very well, but I can certainly relate to your fears. I used to be an oncology dietitian, and have seen what you described. It is so heartbreaking to feel so helpless. Have the doctors considered radiation necrosis as an explanation for your mother's complications? It may be too early for that, or it certainly could be meds. I wish that there was something that I could say to help. I dread the time when my husband may exhibit similar symptoms. He is such an intelligent man, and to see him like that would be devastating. All I can offer is a shoulder to lean on, and an ear to listen. You aren't alone, urban. I will be praying for you and your mother, that you have the strength to endure whatever comes your way.

TAremote

Urban, I too am sad to hear about your Mom. I have Stage 4 GBM, diagnosed July 2003. Have a resection, 6 wks of rads, and at the same time chemo, which was temadar. My tumor is located on the occipitial lobe which controls your vision. They removed 80% of the tumor, and I have vision, short term memory, and cognitive issues. I also had to increase my steriods due to swelling, which caused headaches and dizziness. Since increasing the steriods, those symptoms have gone away. I can say I think taking the temadar has kept the tumor at bay. Last MRI Jan 2,2004 showed no new growth. I know it is harder on the caregivers than it is on us.
I'm a little confused since your Mom's last MRI didn't show the tumor. If for any reason you don't feel you are getting the answers you need, get a second opinion or a third. The radiation, along with this type of tumor creates a lot of dead cells, which could be causing some of the problem. This causes swelling, which can lead to others issues as you have pointed out.
Seek out another opinion. Have someone else read her MRI's. And or get another set of MRI's, with Contrast.
I will be thinking and praying for you and your Mom.
Please try to join the chat, there are many people there, and talking about this is very good for the soul..

God Bless
Tom

Dideriksen

Sorry to hear about your mom. My father (age 51) was diagnosed in November of 2002, and has survived his first year. Unlike your mother they were not able to remove any of the tumor, because of its location. He underwent radiation therapy, and went from doing fine to doing bad. He could barely speak, and could not control his right leg and arm. I can say to you, that he is doing much better, he has complete control over his arm and leg, and speaks much better. The reason he was not doing so well during radiation was because of the swelling. He is currently taking termodar, and doing well. I don

urban_sky

I just wanted to say thanks to you all... Your understanding and prayers are appreciated! I'm sorry to hear that so many people are also fighting this terrible disease, but I guess we all wouldn't be here if we weren't! I wish you all luck, and the strength to endure the many hurdles that may come your way.

My wife and I had a meeting yesterday with the MD currently looking after Mom at the Hospital in order to find out some more info. Essentially, they have done a ton of tests over the past week to rule out the many other things that could be causing the deterioration (thyroid issues, electrolytic imbalance, Decadron induced diabetes etc.). They also modified her meds (or even cut some out entirely), and increased her Decadron hoping that if it were due to swelling, she would improve. All of her tests came back negative, and there has been no improvement from the medication changes...

Numerous doctors have assessed the situation, and basically all have come to the conclusion that while the MRI was clear, that the tumor is back in some form that, for the moment, is evading detection. They feel that these growth(s), while small, are invading key areas of her brain, and causing the problem. They also feel that, for the moment, another MRI won't show anything new (FYI - the last one they did, did have contrast). I'm meeting with the oncologist tomorrow, and hoping to get a better mental picture of what they feel is happening. They haven't mentioned radiation necrosis, and from my readings, it's too soon, but I'll be sure to ask.

Mom was luckily admitted to one of the best cancer research and treatment facilities in my province (Tom Baker Cancer Center - Calgary, Alberta, Canada) and at some point I have to believe the doctors. However, I keep banging my head against the wall, wondering if I am doing enough for her. Have I asked the right questions? Have I done everything possible? What would she want? It's really hard to think this is it already!

Anyways, hope to know more tomorrow...

TAremote

From what you have said, you have asked all the right questions and done all the right things. It may be the tumor has grown some, and some of the fingers are causing these issues.
I know it is never a good time to talk about it. But the first thing my wife and I did, was a living will. That way she nor any of my family will be caught in the middle of figuring out what to do in case I get real bad..
I wish you the best, and hope your Mom will improve....

God Bless
Tom

urban_sky

TAremote said:

From what you have said, you have asked all the right questions and done all the right things. It may be the tumor has grown some, and some of the fingers are causing these issues.
I know it is never a good time to talk about it. But the first thing my wife and I did, was a living will. That way she nor any of my family will be caught in the middle of figuring out what to do in case I get real bad..
I wish you the best, and hope your Mom will improve....

God Bless
Tom

Thanks Tom. You've stated in your profile that you hope to help others, and you are doing just that!!!

And you are absolutely right about the Living Will. Anybody else reading this, please, please make sure you have a Living Will (sometimes called a Personal Directive or Personal Care Directive) and, if needed, (Enduring) Power of Attorney sorted out as soon as possible.

We always thought we had enough time to sort out these "little details" later. Whenever we broached the subject, Mom always skirted the issue, and we never pushed it; it eventually fell to the back burner. Unfortunately, due to recent events, in a very short time Mom has deteriorated to the point where she is not legally considered of sound mind. We are now faced with having to go through the courts to establish guardianship / trusteeship; a much more difficult, time consuming and expensive process.

While it is obviously unsettling to talk about your own death, this is a very important document for you and your family. It allows your family to respect your needs and wishes, especially if you have strong feelings against life-support. It takes some of the burden off the shoulders of those close to you.

urban_sky

urban_sky said:

I just wanted to say thanks to you all... Your understanding and prayers are appreciated! I'm sorry to hear that so many people are also fighting this terrible disease, but I guess we all wouldn't be here if we weren't! I wish you all luck, and the strength to endure the many hurdles that may come your way.

My wife and I had a meeting yesterday with the MD currently looking after Mom at the Hospital in order to find out some more info. Essentially, they have done a ton of tests over the past week to rule out the many other things that could be causing the deterioration (thyroid issues, electrolytic imbalance, Decadron induced diabetes etc.). They also modified her meds (or even cut some out entirely), and increased her Decadron hoping that if it were due to swelling, she would improve. All of her tests came back negative, and there has been no improvement from the medication changes...

Numerous doctors have assessed the situation, and basically all have come to the conclusion that while the MRI was clear, that the tumor is back in some form that, for the moment, is evading detection. They feel that these growth(s), while small, are invading key areas of her brain, and causing the problem. They also feel that, for the moment, another MRI won't show anything new (FYI - the last one they did, did have contrast). I'm meeting with the oncologist tomorrow, and hoping to get a better mental picture of what they feel is happening. They haven't mentioned radiation necrosis, and from my readings, it's too soon, but I'll be sure to ask.

Mom was luckily admitted to one of the best cancer research and treatment facilities in my province (Tom Baker Cancer Center - Calgary, Alberta, Canada) and at some point I have to believe the doctors. However, I keep banging my head against the wall, wondering if I am doing enough for her. Have I asked the right questions? Have I done everything possible? What would she want? It's really hard to think this is it already!

Anyways, hope to know more tomorrow...

Hmmm... Doctors... I have the utmost respect for MDs - my brother is actually one - but they are certainly not infallible, and there is an awful lot to know and understand about the human body. Further yet, it would seem that the Hospital environment has numerous cracks in the system, which can further aggravate a situation.

It was just Tuesday that we were told that Mom's tumor was back, but not currently visible via MRI, and that all other possibilities for her deterioration had been ruled out. We were told to start looking into long-term care for Mom. Fine. This information was certainly anticipated, although certainly not so soon. But a little voice kept saying; the MRI was clear, has absolutely everything that can be done, been done? I had thought so...

On Thursday, a sliver of hope was offered. We had a regular follow-up appointment with the Oncologist scheduled, and I was hoping that he could give me a better mental picture of what they thought was happening. To my surprise, while they knew Mom was in hospital, it sounds as if they were never consulted.

He was certainly puzzled with Mom's case, and recommended another MRI and an EEG. (Yay - a champion for Mom's cause!) They're not expecting anything new to materialize from this, other than maybe hard evidence that the tumor is indeed back.

The sliver of hope was around the Decadron that Mom is on. The problem was that they kept INCREASING the Decadron dosage, to see if she would respond, thinking that there was some sort of swelling. Since there was no visible swelling in Mom's MRI, it is really unnecessary for her to be on it. (She has been on it pretty much since October...) It is listed as rare, but some of the side effects of Decadron include confusion and psychosis. So, what the Oncologist has proposed is to start the wean process... Only time will tell now.

Here's hoping we may yet have some good news!