One patient with glioblastoma still alive nine years later
by HubbyhasGBM on Thu Jul 19, 2012 11:24 PM
Hi everybody. Got more info on my husband's tumor. Seems it is located immediately adjacent to the brain stem and the docs are concerned it will invade the brain stem, possibly soon. Do any of you know what symptoms one shows when the tumor is interfering with the brain stem? This started as a right temporal tumor, but now, the recurrence--a week ago--was between 1-2 millimeters from the brain stem which makes surgery quite risky. Thanks for your input!
by Spudlady on Fri Jul 20, 2012 12:14 AM
On Jul 19, 2012 11:24 PM HubbyhasGBM wrote: Hi everybody. Got more info on my husband's tumor. Seems it is located immediately adjacent to the brain stem and the docs are concerned it will invade the brain stem, possibly soon. Do any of you know what symptoms one shows when the tumor is interfering with the brain stem? This started as a right temporal tumor, but now, the recurrence--a week ago--was between 1-2 millimeters from the brain stem which makes surgery quite risky. Thanks for your input!
On Jul 19, 2012 11:24 PM HubbyhasGBM wrote:
by HubbyhasGBM on Fri Jul 20, 2012 01:45 AM
Wow! And they wonder how to create a neurotic wife! : ) It seems as if I should be watching for virtually everything - and none of them are good. Right now, he is so strong and mostly asymptomatic, so it is a real challenge to believe he is this sick, yet the doctors assure me he will be in big medical trouble perhaps imminently.
This problem has another side issue: The tumor is doubling (at least) in 5 weeks. He is not on chemo right now, and wants to get 2 more end-of-life bucket-list trips done before beginning Avastin and Irinotecan - putting off the start for approximately 1 more month, which could be devastating medically. Yet, starting the chemo could make traveling quite stressful as these meds are known to cause diarrhea and they stress that he needs to be watched closely at first. Ugh! Trip? No trip? Quality of life? Quantity? I'm sure you all know this drill well....
by karynk on Fri Jul 20, 2012 10:38 AM
Oh wow - that is a toughy re: end of life bucket list. I don't know that I would wait with the treatment of some sort given the tumors location of growth. I would find out what the dosing schedule is for the Irinotecan, is it given once a month?
I am a huge quality of life person. And would worry about the BT causing more symptoms sooner than the treatments. I would discuss with the NO about trying Avastin solo (if you have not already gone this route) get one treatment in, see how he responds, his second treatment should be 2 weeks after the first and side effects seem to get stronger the longer you are on Avastin. If he manages well on the first treatment, schedule a trip following the second treatment and then add the Irinotecan ASAP following the trip.
Before you do anything - get all your legal paperwork together and take it with you on the trip. Know exactly what your husband wants for end of life care. Try to see if you can find a BT center or at least a decent hospital within proximity of where you are going. I don't think I would go too far at this point.
I think I just raised more questions than answers....but go with your gut and what you are comfortable with. If his tumor pushes on that brain stem while you are on vacation - do you think you are able to cope with getting him back to his NO ASAP? Perhaps a local overnight trip would be a better option for now. I know how hard this stuff is....I am constantly having to deal with such things, and they can be heart breaking having to tell my husband "I don't feel comfortable with us doing that, I know you have your heart set on it, but we need to do what is best for your health right now."
Hang in there! Stupid GBM's - don't they know that our warriors have bucket lists and stuff they want to do!
by HubbyhasGBM on Fri Jul 20, 2012 01:50 PM
Karyn, thank you for your thoughtful reply. As stupid as this sounds, I never even thought about the possibility of him being in some sort of crisis and not being able to get him home! That's a reality I must address, I guess. The problem, as I see it, is his doctors are sensitive people - they are very, very squeamish about giving us anything less than an uplifting picture. And, frankly, this information is difficult to access - even on the web. I feel like I am blindly entering this new phase. We live in a small town with limited resources. We have a hospital 30 miles away, but it was not advanced enough to deal with this, so we drive 71 miles away for a little better hospital. The one with the brain tumor center is 5 hours away. The whole ordeal has been one giant negotiation of enjoying a wonderful life at home versus upsetting our entire support system by uprooting to get closer to higher quality care. And, I don't mean to sound negative, but at some point, the ends do not justify the means, because even at a top notch hospital, in some brain tumor cases, there is little they can offer.
I was pleased that he consented to a second opinion yesterday at the BT center in Denver. The Irinotecan is given 2x monthly. So is the Avastin. My husband is MGMT negative, and also does not have a favorable result on the 1p/19q test, so I'm not expecting to be in the 30% that see favorable results from the additional chemo. Regardless, I do feel lucky he is still alive. From all accounts, when he passed the one year mark, he has been on borrowed time. And we are not taking that for granted. Each day, we are making special. If he died tomorrow, we've had the most wonderful year of our 21+ year marriage. I just need to get a better idea of what brain stem involvement causes so I can better prepare myself and our kids. And, from what I gather, it causes a whole host of symptoms, none good, but almost nothing predictable!
Thanks again for your reply. I'll get on the legal papers, and reconsider getting him home! Good grief! Hadn't considered that I couldn't just load him in the car and drive! And, of course, that might be impracticle if he is seizing, or immobile. Agh!
My best to you.
by Bulley1 on Fri Jul 20, 2012 05:47 PM
I would think long and hard about traveling. My husband was hospitalized at diagnosis in Vancouver, BC unable to move the right side of his body. It was unnerving not to mention a bit expensive. Stressful on our family at home.
Don't want to tell you what to do, just be aware of the pitfalls.
One caretaker on CC took her husband on a road trip in their camper just prior to his passing. Wish I could remember his Caring Bridge site. Not fun. But...........could be a wonderful bucket experience.
Best wishes and wishing wisdom for you!
by HubbyhasGBM on Fri Jul 20, 2012 07:36 PM
Thank you Bulley1. I appreciate the input and do not view it as telling me what to do. Yes, I guess ignorance IS bliss in my case, because I simply would have gone on this trip and thought that if he started to feel "off" that I'd just return early, but I was not considering that he could get substantially worse and I could be stuck in an expensive city - paying for a hotel well beyond my intended stay. You make a very good point.
Not that it is relevant, particularly, but I'm just now hearing on the news that the hospital that my husband is seeking his second opinion is the same one that the Batman killer worked at. He was a PhD student in, of all things, neuroscience! Oh boy! My husband and daughter were there yesterday. The guy did not act out at work, choosing the theater instead, but he booby-trapped explosives at his home which is one block away. Can we make this ordeal any MORE stressful! Ugh!
I like the camper idea. Not sure I could safely drive one far, but what a nice tribute and experience. Thanks for sharing it.
by karynk on Fri Jul 20, 2012 11:00 PM
Adding you as a friend and sending a PM when you approve. I need to update my pals here on our current "situation" - trust me you would not want to be far from home for my week :)
by broadway1 on Sat Jul 21, 2012 08:55 PM
My father had his tumor which was located very close to the brain stem and the carotid arteries.
In the beginning his symptoms were numbess in one side of his face. Towards the last months of his life, he started getting double vision. Then he lost the ability to properly swallow, so food when down the windpipe leading to pneumonia.
Then as with others, he went into a coma, and died peacefully.
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Destination: HOPE. Cancer care that is worth the trip.
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