NBTS Headquarters Blog
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Posted by: Anonymous on May 25, 2010 1:45AM UEDT
Sometimes it's hard to have advice. My dad was diagnosed only after I insisted they do a c-scan, his behavior was unusual, for him. Only someone who knew him would see the difference. One day he seemed fine, the next he fainted, and the next the diagnosis. But that was only after I insisted. His vitals were fine, they would have sent him home. I knew better, but yet I knew nothing. He immediately had surgery, removing 95% of the GBM in his frontal lobe. He had a small sattelite tumor close to the GBM, and it ended up getting the best of him. He did survive for 12 months, with chemo, radiation, and good nutrition. That's what we were given, at best. Meanwhile, he was an accomplished professional musician, and even for a short time after surgery, he could play. My point is this: The treatment itself is toxic! It gave him chemobrain. I know that the toxic treatments alone would have done a healthy person in! Less occupational therapy and/or physical, would be needed if these tumors could be treated less chemically and more straight-arrow. If they cannot, be honest, and say so. A person's quality of life is all they have. Sometimes, one doesn't want to live, if they can't REALLY LIVE! Forgive me for being so honest!
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Posted by: Violet Tigress on May 25, 2010 4:46AM UEDT
Less occupational therapy and/or physical, would be needed if these tumors could be treated less chemically and more straigh.
I don't believe that is necessarily true. Even with surgery only, you might need an awful lot of therapy. Doctors won't always tell you, either, whether you should be in therapy, what kind. or where to go. My mom & I were discussing this... Back when I had my first tumor, they didn't tell my mom that I should be in therapy, until we went for a checkup a month or two later. I agree with you about quality of life. Without quality of life, you have nothing. |
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Posted by: Violet Tigress on May 25, 2010 5:36AM UEDT
If only doctors always told you about therapy. Honestly, once you are out of the hospital, I am not sure they care much.
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Posted by: Char on May 26, 2010 10:48AM UEDT
Funny this topic should come up. In June my dad will be one year postop (GBM) rt frontal lobe surgery. He has just begun PT this week! They also are suggesting occupational therapy. This is going to make a big difference in his daily living. I wish we would have thought of it earlier!
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Posted by: Harriet at NBTS on May 26, 2010 5:33PM UEDT
Thanks everyone for these great comments. @Anonymous--you make a great point. Quality of Life is a very important consideration in making treatment decisions and it varies from person to person. Helping people have open discussions with their health professionals about what is important to them is one step toward ensuring that decisions are right for that individual. But we also have a long way to go toward developing better therapies that leave people in a better state. @Char--we hear this so often, that people wish they had known earlier. What brought this up eventually with the treatment team? Did you/your dad mention the lingering issues or did they ask you about it? Any ideas from any of you about what we can do to help families feel better prepared? Thanks again for writing and reading!
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Posted by: Connie Christine on May 27, 2010 8:59AM UEDT
My Anaplastic Astrocytoma was diagnosed after I began losing muscle control on my right side. I am fortunate that as soon as the tumor was removed, I regained that. My concern is now with the "chemo" brain - and/or anti-seizure meds. I need to get back to work, but am concerned about my less than normal mental acuity. I finished Chemo/radiation on Tuesday (yeah!). I will be off chemo (Temodar) for a month then go on a 5 day out of 30 rotation. Are there others that can attest to how long it might take for my brain to wake up? I have had vague and varying answers depending on which Doc I ask.
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Posted by: Char on May 27, 2010 10:16AM UEDT
Hi Everyone... well we had noticed my dad's left leg was starting to give him trouble in Feb although he was using a cane for a bit prior to that .. kinda dragging it a bit - walking very slowly - shuffle. MDs had changed his chemo in March to 21on /7off and he began Avastin infusion for reoccurence of GBM. Come to find out from the surgeon during a revisit that the leg business is most likely due to brain swelling and hopefully will subside. I did bring up PT to the oncologist/NP and they concurred. It took a little time convincing my mom that dad needed some extra help. She's his main caretaker and in a bit of denial. My dad is an Army veteran and goes every 6 months to our local VA hospital for a check-up as he gets his medications (including Chemo) through the VA at a very reduced price. At his visit 2 weeks ago, his NP also thought he would benefit from PT . Trying to convince my mom is a whole other story, but I got a hold of the NP from the VA hospital a week later and initiated the whole thing. (I'm now looking into getting a home health care aide to help out with daily living stuff either mornings or bedtime when my mother has the most difficulty.) I want my dad to have QUALITY of LIFE - not just living. After just one session with the Physical Therapist, there is great improvement in dad's walking with his walker - yes, we have to remind him about "high left, high right" when he's starting out walking, but then it kicks in and he does it without telling him. Prior to this for the past couple of months, he was shuffling with the walker and it would take him so long to get from point A to point B that he would be tired. Today is session #2 he will learn the proper way to go up/down stairs and in/out of an SUV since he has a few stairs in his home and we all drive SUV's (Dad cannot drive his car at this time and mom does not drive at all - never has. ) The Physical therapist will start out twice per week for at least 4 weeks. I know that PT will greatly improve his QUALITY. I highly recommend it for anyone that has had a brain tumor/trauma. As I said before, I only wish we looked into it sooner. Good luck to you all. Don't be afraid to advocate for your loved one - even if you get someone "mad". My mom now sees the difference in dad's walking & appreciates the help (that SHE didn't need).
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Posted by: Violet Tigress on May 27, 2010 11:08PM UEDT
What I really wish the doctors told you, was what you could expect in the case of swelling (Dysphagia for example. It is on thing no one ever mentions it, and it is one thing that very likely to drive you insane.) and that some of those issues may never go away.
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