Gbm in Left Temporal Lobe

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Gbm in Left Temporal Lobe

by Devdaughter on Wed Jun 07, 2006 12:00 AM

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My mom was diagnosed with a GBM in her left temporal lobe in September 2005 after a major Seizure just weeks before her 61st birthday. She had a resection done where they removed the most active part of the tumor (approx. 20% of it), had radiation with Temodar. She was on Temodar for 6 months when it was realized it was no onger effective and growth was seen. She started the Avastin/CPT-11 protocol last week and is tolerating it well (though the insurance company is saying they wont pay for it!!). I have so many questions. I've asked the neuro-oncologist as many questions as I could think of, and she has been wonderful but there are things I'm afraid to ask while my mom is present and there are of course gaps in what a doctor can tell you when it comes to the experience of the person diagnosed, their friends and family and spouses. What I'm hoping is to hear from people who have been diagnosed with a GBM in the left temporal lobe or know someone who has. My mom has word finding problems and some memory problems, but I guess what I'm wondering is what symptoms might come next. I'm scared everyday, and while I hope for the very best, I'm trying to prepare for the worst. A devistated daughter, Nancy

Your Mom

by caring_daughter on Fri Jun 09, 2006 12:00 AM

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Dear Nancy, I am so sorry to hear about your mom. My 67-year-old dad was found to have a GBM in his left temporal lobe on Aug. 21, 2005. He underwent surgery on Aug. 29, 2005, followed by two weeks as an inpatient on a rehabilitation unit where he received physical, occupational, and speech therapy. He received 33 external beam radiation treatments along with 42 days of concurrent Temodar use. He continued to take his double dose of Temodar for six months. He had an appt. on Tues. with the medical oncologist along with an MRI. Although the tumor area is showing less enhancement, he has an area of significant swelling next to the tumor bed. The dr. quadrupeled his decadron dose to see if this helps. We certainly hope so. Chemotherapy is temporarily on hold. Like your mom, my dad is having difficulty finding the correct words to convey his thoughts and feelings and difficulties with his memory. The speech and memory centers are in the left temporal lobe so it makes sense as to why these are affected. My dad's tumor was deep in the temporal lobe so the surgeon had to go thru a lot of healthy brain tissue to even get to the tumor. It seems like my dad has more deficits that people whose brain tumors are in different sites. I know that this is a devastating time, Nancy. My family is in the crisis of their lives as I am certain that yours is too. I completely understand about your wanting to ask questions, but have not been wanting to ask them in the presence of your mom. I have had my dad sign a release so that I can call the dr. or his nurse with my questions in between appts. Otherwise, I would hang around to talk with the dr. following my dad's appts. to discuss my questions. I would appreciate communicating with you more, Nancy, so please respond to my message thru this site and we can do so. Take care. Be hopeful. Rondi

Your Dad

by Devdaughter on Fri Jun 09, 2006 12:00 AM

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Dear Rondi, I'm so glad for your reply. It sounds like our parents were diagnosed within days of each other. How is your father doing these days? Is the swelling producing more symptoms or exagerating his existing symptoms? I sincerly hope the decodron treatment is successful and your dad can continue with the temodar treatment as it sounds like it has been working to get some control over the tumor growth... I'm very sorry that you dad, you and your family are having to do battle with this horrible disease. It's awful that a procedure that fights these tumors can potentially cause so much damage themselves. With the tumor in the left temporal lobe, the progressive loss of expressive and receptive speech is what my mom fears most. She fears it more than losing the use of her right side or even death. She opted out of a second resection due to the risk that the surgery itself could cause these symptoms and that she could wake up without being able to speak coharently or understand what anyone was saying. Just the idea that my mom wouldn't be able to understand me when I tell her I love her makes my heart ache. Sometimes I'm not sure if some things/changes i notice with my mom are a result of the tumor, or if it's the medications or just the emotional impact of it all. I very much would like to continue our communications. My mother's second dose of the avastin/cpt-11 will be Tuesday. I'll let you know how it goes. So far she's been lucky so far as side effects are concerned. Warmly,Nancy

Your Mom

by caring_daughter on Sun Jun 11, 2006 12:00 AM

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Dear Nancy, It was very nice to hear from you so soon. How is your mom doing this week? My mom hasn't noticed much difference in my dad's speech since the decadron doseage was increased last Thurs. I thought that my dad was speaking a bit better by Saturday. This is a difficult journey. Some days are better for my dad than others. He doesn't have much energy or appetite most days. Yet, he gets out of bed, showers, and dresses, shaves, etc. He "works out" at anytime fitness a couple of times a week, mostly riding the exercise bike and some upper body strengthening. Like your mom, my dad feared losing his mental faculties more than anything. This has been extremely difficult for him as well as for the rest of us to observe. We continue to surround him with as much love as he can tolerate. We are thankful for each day. We have been blessed with nine plus months that we didn't think that we would have when we first found out about my dad having a brain tumor. This is the hardest situation I have had to face in my life. My husband is a wonderful support. My kids are so close to "Poppy," and I know that their hearts break when they consider that he will die (as do all of ours). My daughter is 15 1/2, and I have twin sons who are 10. They are such good kids. I am seeing many signs that the GBM is taking over even if the SPECTRA scan doesn't show it. It is devastating to have the man I admire and love the most in the entire world have to stand up to such a fate. I am trying to be hopeful, yet I cannot ignore the signs... My dad is truly amazing.. I hope that this is a good week for your mom and for your family. Take care, Rondi

How Are Things?

by Devdaughter on Tue Jun 20, 2006 12:00 AM

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Hi Rondi. Things have been okay for my mom. The Avastin-CPT-11 makes her tired for a few days, but she bounced back. Right now she has misquito bites that she thinks are hives due to a reaction to her Kepra or the Chemo. I tried to tell her they were misquito bites, but she's convinced they're not and is very upset. She seemed to show some improvements the week following her first Avastin-CPT-11 treatment, but this week it seems like there has been a slide backwards. Not a big slide, but enough to notice. How is your dad doing? It's nice to hear that you have a supportive husband. That can make such a huge difference. No doubt having his family and grandchildren around is a wonderful thing for your dad. This is an absolutely devistating disease. I have trouble wrapping my head around the whole thing sometimes. I hope your dad is doing well and still getting in his excercise time. Sometimes that in and of itself can make a person feel better. Be well. nancy

Good to Hear From You

by caring_daughter on Wed Jun 21, 2006 12:00 AM

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Dear Nancy, It was good to hear from you. Is your mom noticing a return of some energy after a couple days of recovery? How often does she receive the avastin/CPT-11 treatments? Have her mosquito bites cleared up? My dad is better this week. The decadron dose was initially raised to 4 mg twice a day, and this left him so confused and exhausted. We switched it to 2 mg four times a day, and this seemed to help. Last Thurs., his decadron dose was decreased to 2 mg three times a day and the dr. wants him down to 2 mg two times a day as of this Thursday. His speech is seeming a little bit better to me this week at the current dose. I know that he is having side effects though because he is sooo exhausted and weak. Is it better to be on a higher dose of decadron to alleviate the swelling or to experience side effects? Ugh ... We spent the night at my mom and dad's last Saturday. and my sons made my dad and husband breakfast for Father's Day. It was a wonderful day! My parents are having their marriage blessed tomorrow afternoon at their church by their minister. The boys and I are going to witness this blessing. This has been something that my mom has been wanting to do since my dad's diagnosis. They celebrated their 46th anniversary on May 28. Nancy, I am wondering if you have children or siblings in the area to help you and your mom? Enjoy each day, Nancy. Be hopeful. Take care of yourself, Rondi

Gbm in Left Temporal Lobe

by Nicole_s_1 on Fri Jul 07, 2006 12:00 AM

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I am new to this site due to the fact that my father was diagnosed with a Stage IV GBM on his left temporal lobe on June 15, 2006. The diagnosis came after a week long stay in the hospital for what they originally thought was a stroke. He was admitted to the ER with dimentia and then had a massive seizure in the ER (thankfully not at home). My father has the same symptoms as your mother - difficulty finding words, difficulty understanding numbers, and short term memory loss. Although it is amazing the things that he remembers from the past. We are very new to this situation. My father has opted not to have surgery for the opinion that he would come out partially blind, partial paralysis on the right side and more trouble communicating. He is trying to be strong for my mother and his children (3 grown daughters). He began radiation 11 days ago and Temador 7 days ago. Like everyone else, it is hard to determine if the symptoms are the tumor or the treatments. He is very dissapointed that he cannot drive again since he is such an independent person. I too am looking for someone that can give a little guidance as to what to expect - the not knowing is the hardest part. We are trying to enjoy and take advantage of everyday that we are given. His prognosis was 6-9 months and it was implied that his tumor is one notch down from worst case. I believe that the tumor is thumbnail size but with the tentacles it ends up being the size of a fist. I would appreciate any guidance that me and family can get during this difficult time. Knowledge is definately power. Sincerely, Nicole

Left Temoral Lobe Tumor

by Devdaughter on Fri Jul 07, 2006 12:00 AM

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Hi Nicole. I'm really very sorry to hear about your father's diagnosis. They initially thought that my mom had had a stroke when she was brought into the hospital and wasn't responding. It's been 10 months since my mom's diagnosis. The temodar didn't work for her, so she is not on an experimental treatment of Avasitn & CPT-11. Her word recall seemed to get better for a while, but is not seeming to worsen again. As far as what to expect, no one seems to really know exactly other than the worsening of the symptoms involving receptive and expressive speech. There may also be progressive weakining on the right side of the body. As far as mood and personality changes, it's possible, but more likely when the tumor is in the frontal lobe or the right side I believe. What do you mean when you say your father's tumor is one notch down from worst case? My mom's next MRI is in early August, after two cycles of the Avastin/CPT-11 combo (three treatments = 1 cycle). I'm scared, but also very hopefull. If I learn anything new, I'll let you know, otherwise, feel free to ask me any questions that might pop into your head. You know, those questions like, "did your mom...?" Keep hope alive. Nancy

Still Hoping

by Devdaughter on Fri Jul 07, 2006 12:00 AM

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Hi Rondi. Sorry for the delay in my responding. My mom recieves avastin/cpt-11 every 14 days (every other week). The first round, she recovered in about three days, after the second round, it was about the same, but on the 4th day she got very tired in the later afternoon. This last round floored her for a good 4 or 5 days. On the 5th day, she would be up and about, and then BAM! She'd suddenly just want to go to sleep, regardless of where she was. Initially we thought her symptoms were improving, but there has been some decline in the last few weeks. We did learn some new and important things during her last "check-up". We were told that just the fact that she has a brain tumor, makes her more susceptable to blood clots, so she needs to get up and move around every couple of hours, regardless of how tired she is. We were also told it's very important for her to eat healthy and keep her blood sugar in check (like not skip meals)because a drop in blood sugar can impair neurological functioning, and make some of her symptoms worse than they otherwise would be. My mom isn't diabetic or anything, it's just a general thing. I'm glad your dad is doing better. I don't know which would be better... the symptoms or the side effects. The blessing of your parent's marriage sounds wonderful. It sounds like it was already blessed with 46 years together! I don't have children, and I'm an only child, however my mom's husband is great, and my aunt and uncle live just 5 blocks away, so I'm lucky. It sounds like your family is close and supportive as well. I'm glad. Please keep me posted. Best wishes,Nancy

RE: Gbm in Left Temporal Lobe

by jstringer on Sun Oct 23, 2011 07:33 PM

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Nancy:

My wife was diagnosed in Jan. of this year with gbm iv left temporal lobe and had pretty much the same treatment.  She just finished her last chemo with Temodar last week and won't have any further treatments until Jan.  She gets an MRI in Jan. and sees the neuro surgeon again for evaluation.  Jan's memory is slipping and she also gets word confusion as well as problems identifiying things.  Her appetite is good most of the time and her spirits are good. She is at peace with what she has and is not afraid of passing on to heaven.  I, however, am a mess.  I have lost 30 pounds, don't sleep and worry.  I am so used to fixing things and I can't fix this one.  I have been told that the path will be one of two. One, she will just lapse into a coma or, two, she will get really loony and  I will have to bring hospice earlier that expected.   I was told she had 12 to 14 months from January; however, I have also read stories of some who have lasted longer.  We just have to make each day the best day and go on.  Hope this helps a little.

Jerry

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