Right parietal lobe GBM - symptoms for specific tumor type and placement

I have an idea that could potentially help many people. I would like to know more about specific symptoms of people suffering from GBM in the right parietal lobe. Symptoms seem to vary so much between patients based on the type of tumor and the placement of a tumor, and so if people would be willing to start discussions based on a specific area that their or their loved ones tumor is, I believe that this could be helpful.

My husband is at home in hospice, has a right parietal lobe tumor diagnosed in 2008. We have been through multiple treatment rounds. The tumor is now unresponsive to treatment, and is now in the motor strip. His current symptoms include left hemineglect, left sided paralysis, some word slurring, fatigue and sleeping a lot, some incontinence, some falls. He walks with assistance (gait belt), and cannot use a walker because of the left sided paralysis. He also has swallowing issues, and aspirates regularly when eating or drinking. Lately, he runs low grade fevers in the night. He has some headaches mostly at night. He can't sleep because of the severe gastritis. He also can't urinate even though on flomax. I assume the tumor is causing some urinary inhibition. He does not want to take narcotics for the pain, because he fears constipation but will take acetimenophen and diazepam .(Valium). Of course, there has been some cognition changes, mostly impulsivity, but they have not been the most difficult symptoms, as he seems to be fairly unaware of those cognition changes. Last spring he had 5 recurrent cases of meningitis (psuedomones) and spent months in the hospital, and it really started the continuous downward spiral. He is now on 3x per day IV antibiotics. Has anyone experienced something similar?

I suppose I would like a crystal ball to find out what else can go wrong. I don't think he has a lot longer, but would like to know if anyone else has experienced these kinds of symtoms who has a right parietal lobe tumor and what to expect in the future.

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Hi - I'm sorry you are facing this difficult time. It must be very challenging for you, your children and husband in many respects.
You all are very fortunate to have each other to share the load as I sense it's great with the uncertainty that comes along with cancer. You are smart to reach out to others.

A couple of thoughts for your consideration.

1. My tumor was/is in my right frontal lobe and I was left handed - I have left neglect, speech issues, hemiparisis - I guess this comes with the territory. I was living at the Rehab Institute of Chicago (RIC) for intensive rehab following surgery, and they have a fabulous area on their website for info on brains. You might consider looking at their "life center" section. Very informative!
(http://lifecenter.ric.org/). You will have to join to get info, but they don't send you mails, and it's free.

2. I would hope that the hospice group can offer you suport on stages of dying for brain cancer patients, so you can start to prepare yourself. If they cannot - is there someone in their organization that has experience? I'm sure also the ABTA has information/support options re if you were to contact them.

3. As each of us with brain cancer is different in terms of progression, debilitating symptoms, end of life issues, I believe it maybe hard to get specific info that might make the next period easier. I can relate - its very hard to live with such ambiguity and witness such suffering in mine/another's life.

Knowing others suffer such incomprehensible changes in their lives too, reminds me to greet each day I have, with bravery in my small way. The good and the bad days... There is always someone having a harder time, and I believe, it's our work to carry the memory of others struggling with us, as we face our current challenges.

Please know I will add you and your husband to my daily remembrances of those I dedicate my own journey too. You are not alone.

4. Lastly, I have felt calmer and peaceful at difficult times using sound therapy and aromatherapy. The smell of lavender can assist so much, as there are other essential oils that can offer a natural way to relax into pain without meds if they are not possible to take. I will also listen to sounds that I find very comforting - for me its the sound of rain or waves. An inexpensive sound machine or ipad app played continuously or at difficult times can make the difference for me. Brookstone carries such small appliances and any natural foods store should offer essential oils. Sometimes during my worst exams I dab a little essential oil on my upper lip just below my nose, so I get a strong smell that is very relaxing and centering.

As I die, I know I'll want the environment suited to a peaceful transition.

I hope these few things might assist you or offer you some support in the time to come. You and your husband are not alone - you are supported by many known and unknown.
Warmly,
Anna

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Saraibrenner,

My husband's tumor started in his right frontal lobe, had a good resection and time of remission, then returned right frontal and continued to grow into other areas. His symptoms sound similar to your husband's. He passed 11/18/12 and we had hospice involved the last few weeks. There is a website, brainhospice.org which may be helpful. I think that most hospice facilities do not deal with as many brain tumor patients. It is very different from dying from other cancers. Most dying patients look very weak and frail, but my husband looked healthy and strong. I used a gait belt with him, but he could get up by himself and frequently did in the middle of the night. He spent the last 5 days of his life in the hospital bed, otherwise was always active. He experience left sided weakness, neglect, and his left sided facial droop when he smiled at the end. Many strange personality changes, but was always pleasant. One behavior he did a lot was "perseveration". This is frequently seen in brain injury patients. This behavior was hardest to manage.

He seemed to experience urinary retention and would spend maybe an hour just sitting on the toilet, not realizing how much time. About 5 weeks before he passed he began to have accidents with urinating. I tried to make him go to the bathroom more frequently but it made him frustrated and eventually I bought him attends. He didn't complain. At the end, he seemed to have no control of bladder. I wasn't expecting to see the bladder problems, but found out that it is common near the end in brain tumor patients.

Hopefully this is somewhat helpful. Praying that God will give you wisdom and strength during this difficult time.

Blessings,
Kathy

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Thank you Anna,
I do struggle with the ambiguity and "try" to be comfortable with it, not always as successfully as I would like. As Jim's tumor has progressed, and he has become more disabled, I try to anticipate the possibilities of what will come. While I love Jim's hospice nurses, they have been very reticent to hazard guesses on what is to come, perhaps, because as you say, they see that outcomes are variable, afraid that to say may be to hazard a wrong guess. Jim is much more comfortable with the ambiguity then I am, perhaps because as caretaker, I feel the weight of his care fall on my shoulders. Keeping him safe feels like no small task. For a long time, I felt like our backgrounds were a blessing. He was a pulmonogist / internist / critical care and sleep medicine doctor, and I am an epidemiologist. At first, when Jim was in active treatment, I felt our knowledge of medicine and research was a blessing because it helped us to find relevant research. Now I struggle because my knowledge can't help us, and we must live in the ambiguity of the diagnosis. Thanks so much for your words of wisdom. I can see that you are an amazing woman with insights that go deeper than simple knowledge of the process, but cut to the heart of what it means to live.
Thanks again,
Sarai

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Thanks Kathy,
It is so helpful to hear that others experience similar symptoms. In a weird way, it helps to make me feel less isolated, even though I don't wish this experience for anyone. I hope you are healing after his death, and I will send my healing thoughts your way. This care taking role is difficult, in part because, though we want some measure of control, any control we do have is an illusion.
Thanks for your insights,
Sarai

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Saribrenner- good hutch! I have the same conditions as you husband, and hope he is doing better. I am still alive and a fighter. Am on new trial now. Wish him well, and do let us know on the research and results!

john paul

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Hi John Paul,
Looked at your profile and see you have done international development in Africa - very exciting. I am an epidemiologist (public health) and have done work in Asia. I've never been to Africa, yet. You seem to have a strong positive attitude. Perhaps, as I've noticed in working overseas, that development workers have a zest for living and a love of humanity. My Jim is slowly deteriorating and in hospice, but maintaining his stellar attitude of love. I will keep you in my thoughts and prayers.
Thanks, Sarai

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Sari- Cool that you are a epidemiologist too!!. I have taught and done that thing for many years, although taught it at Medical school too! And yes, I have been to poor eastern Africa for 5 times living and teaching HIV+ education all those years too. Glad to see another public health person! I have a passion and PhD work to those who want to learn and Africa really humbled me and simplfy my life!

jay paul

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John Paul,
Perhaps that is exactly it, that the simplifying of your life, and the slower pace in the developing world allow one to reflect on what is truly important - love, relationships, and gratitude for what we have been given. I will continue to send my healing thoughts!
Sarai

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John Paul,
Perhaps that is exactly it, that the simplifying of your life, and the slower pace in the developing world allow one to reflect on what is truly important - love, relationships, and gratitude for what we have been given. I will continue to send my healing thoughts!
Sarai

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