GBM dead in 23 days

labales

My hubby Neal, developed a hand tremor and nausea in mid-August. He started lying around too much and being more forgetfull in July, but these symptoms were subtle.
On August 27, he got confused trying to use a computer program, and the next day I took him to the ER and his entire body was CT scanned.

The Head CT showed bilateral periventricular tumors and we were admitted to a local hospital in Ft Wayne Indiana. He had MRI on 08/29(showing also a large rt parietal tumor) and stereotactic brain biopsy on 08/31.

The pathology report then took 12 days(09/12) to return, delayed by Labor day weekend and being sent onto Mayo on Sept 6. So from the time we knew he had brain tumors to diagnosis was 15 days and every one of those days I lost more of him. He retained motor skills but his memory, his intellect, and his personality were ravaged. I took him to a neuro-oncologist at Indiana Med Center on 09/14 and she wanted to emergently admit him and start Avastin, CPT-11 and Temodar because she believed he had GBM rather than grade III astrocytoma as the path said. I liked her, she understood we had no time. She talked with our oncologist and he promised we could come back to Fort Wayne and start treatment there immediately.

Back in Ft Wayne, he did not want to follow the neurooncologists recommendations as he did not recognize her and he got us ready to see the radiation oncologist the next day. This is still the 14th. On the 15th he had CT and MRI to size him for radiation and the MRI showed the tumor had doubled in size since the last MRI on 08/29(17 days) and now only palliation was possible.

On Friday 09/16, the Oncology group had a new rounding doctor and he wanted to follow the IU Med Center neuro-oncologists idea and he called her and on the 16th
Neal received Avastin, CPT-11 and was set up to start Temodar and I took him home.

Saturday the 17th, he did not seem to slip any. Sunday the 18th he was quiet, depressed, and refused to eat. He spent most of day in bed. I got him up at 8PM and finally got some food in him and he stood on one leg and flapped his arms to wish me goodnight, like an angel. I laughed and soon followed him to bed.

At 0230 hours Mon the 19th, he woke me and said he was having a horrible headache. He was himself. As I got up to dress, he became agitated and wild and ran around collecting ptctures of our lives and children and pets. His eyes would not see me, he could not hear me,
and his speech was garbled. I called 911 and we got him to ER. He was intubated and sedated for the head CT which showed massive biventricular hemorrage. Neurosurg said they could drain him, but he would likely not regain conciousness or function. I had them take him oof life suppoet and i took him home in a coma.

He died on the AM of the 20th.

What should I have done ? Things moved so slow, but his disease did not. !5 days to make a diagnosis and 19 days to start treatment, then dead. Should i have taken him to a brain cancer center? Do they move faster there? I feel like i and the medical system failed my husband.

connsteele

We all have regrets
Please don't beat yourself up over the course of your husband's course of treatment. You did the best you could. That's one of the things that is so awful about this disease. One day everything is fine, and then the next, your whole world is turned upside down, and you're thrown into a medical bureaucratic nightmare. It is all such a blur at first. When our son was first admitted to the hospital, we just went with the doctors that were referred to us, including his surgeon. Right from the start, the surgeon said that it would not be possible to remove the tumor(s), just debulk and get enough for a biopsy. I have regrets that we didn't get a second opinion. But when you're thrown into this, it is such a shock and you feel so helpless.

I'm not an expert in this disease, by a long shot, but it sounds like, unfortunately, your husband's tumor was very aggressive, and if treatment had started sooner, maybe only adding a few days or weeks.

It was 6 days from the time our son was admitted to the ER before his surgery, then another 2 1/2 weeks before we got a diagnosis, (which turned out to be wrong). It wasn't until we had our initial visit with his radiation oncologist, which was another week later, that we got a diagnosis of AA3. So, all told, it was 5 1/2 weeks from the time he was admitted to the ER to the time he actually started his radiation/Temodar.

I don't know if that's a comfort or not.

Beckymarie

We do the best we can with what we have and what we know. After 15 months caring for my husband who died of GBM, I look back and wonder what we could've done differently. These brain cancers are beasts. They come on so quickly and life spins out of control...test results and information come at you from all different directions. From what you posted it sounds like little could've been done for your husband. Maybe you could've bought him more time, but would it have been quality time for him. You do the best you can with what you have at the time.

4theloveofmysis

very Sorry
I am so very sorry. Please dont blame your self. Like the other ladies said this is a beast. I am at the point with my sister that Im beating my self up too. I want more done and everyone has given up. 246 days ago our world went upside down. I dont want to call it quits I dont want hospice yet, but thats what happen.I want more and this tumor has other plans. Its not your fault, we just do the best we can with what we are given. My thoughts and prayer are with you and your family.

micgrace

So sorry. GBM can be very
So sorry. GBM can be very fast. No sooner I had a CT scan done on my wife she was in hospital and treatment began to get swelling down on steroids prior to operation to debulk. Everything was done as fast as possible. No chance she lasted little more than a month. You did everything that could be done.

PBJ Austin

micgrace said:

So sorry. GBM can be very
So sorry. GBM can be very fast. No sooner I had a CT scan done on my wife she was in hospital and treatment began to get swelling down on steroids prior to operation to debulk. Everything was done as fast as possible. No chance she lasted little more than a month. You did everything that could be done.

You did not fail your husband
You did all that you could for him, unfortunately there was not much you or the medical system could do. Sometimes cancer progresses very fast and by the time it's discovered, it's already too late. Please do not beat yourself in the head for a situation over which you had no control.

God bless you and keep you during this difficult time.

Pam

Beckymarie

4theloveofmysis said:

very Sorry
I am so very sorry. Please dont blame your self. Like the other ladies said this is a beast. I am at the point with my sister that Im beating my self up too. I want more done and everyone has given up. 246 days ago our world went upside down. I dont want to call it quits I dont want hospice yet, but thats what happen.I want more and this tumor has other plans. Its not your fault, we just do the best we can with what we are given. My thoughts and prayer are with you and your family.

Hospice
Bringing hospice in is a tough decision because it implies your loved one is at the end of their journey. Having hospice come in was such a relief. It was like having someone come in and take over the helm of the ship in the middle of a storm. Hospice was there always..they were only a phone call away. No more trips to the emergency room. The main goal was to keep him comfortable...painfree, warm, clean. They were an emotional support for my children and myself. They were a true God-send. I can't say enough good things about them. I send you all the support and good thoughts in your journey. It is so hard.

palmyrafan

I am so very sorry
about the loss of your husband.

Please don't do the woulda, coulda, shoulda routine. We've all been there and we can all tell you there is nothing to be gained by it. You made the best decision you possibly could with the information you had at the time.

The only flaw is that there are some doctors, nurses, technicians, specialists, etc. that don't agree on the proper protocol during a time like this and brain tumors of any sort are difficult to diagnose, much less, with the proper name, size, grade, location, etc.

Words can't properly express how I and others are feeling for you right now, but please know that you are in my prayers. May you find the comfort, peace and God's Holy Grace in the days, weeks and months to come.

Peace,
Teresa