Glioma

Hello everyone!
Iam looking for people that can share with me my rare case. a year and a half ago I was diagnose with a brain tumor. On the brain stem. It is imposible for the doctors to do a biopsy.The doctors called it glioma. Is a tumor usually in kids. my symptom is double vision around one a week. In April I had a vp shant and radiation for 6 weeks because it grew a little. My doctor said that usually are very agressive but mine is not. Last week I tryed to join a support group but I don't know where to go. If I go with the post treatment usually they are cancer free and if I go to the ongoing patient they are in worse situation than me. Anyone like me that can advise me?

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Hello,

My husband also has a brain tumor in his mid-brain (brain stem area). His is a anaplastic astrosytoma grade III. He was able to have a biopsy at the University of Pennsylvania which is why the exact type of tumor is know. But, depending on the exact location, it is a very difficult procedure. Surgery to remove the tumor was not an option. He was diagnosed in December 2008 because of eye problems also. Since this time he has also had radiation, temador (chemo) and avastin. He will begin radiation again in a few weeks because they are seeing some growth. He gets MRI's every two months.

For the most part he is well, a bit numbness on his right side as a result of the biopsy and he is tired much of the time, but still able to work.

I don't know of a support group to join. Depending on where you live, I guess it is best to check with the hospital. But, I imagine in every support group there will be people in different stages of cancer treatment. I think that is the nature of the illness.

I hope this is helpful to you. His tumor is also slow growing which is a good thing. I hope that you are feeling well.

Tina

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Hi
I am in a small town 3 hours south of Chicago (peoria ). We have a monthly support group meeting at the Illinois Neurological Institute. There are so many stages at our group. I have been going for a year now. There a few people there with meningiomas, that have had surgery or gamma knife, or watch and wait. There are people there with malignant tumors. We are at varied stages in treatment because there really is no cure. We have so many commonalities, and differences, and that works great for us. We learn from each other, but also know that we are not alone in this. Our group is led by a nurse form the neuro practice. We have a lot of great resources in Peoria, and I am blessed to have the chance to participate. I did ask my doctor about a support group when this started for me. He and his practice made it happen because they see the value of the group. If you have a local cancer center, they may be able to help you start something like this.
Diane

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HI
I am also in Peoria, with a pons (brainstem) mass likely metastasis from ovarian cancer.
Mine is inoperable, no biopsy possible. I know what you mean regarding looking for a group.
Diane, I go to INI also. Kattah is my doctor. I'm interested in hearing more about the Peoria group.
thanks!
Sue

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Hi, I also was diagnosed with a glioma in 1997. My doctors called it a low-grade glioma in my right frontal lobe. The treatment was to follow as usually they are very slow growing. In 2007 it did show some changes from the first MRI so it was decided to try and remove it. The neuroseurgeonwas only able to get half. Since that time I, as a RN have lost insurance, I still work, but function fine with some short term memory problems. Am I better off after surgery? I ask myself that often as I was doing quite well before.

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Hi Sue
Abby Lotz RN is our group facilitator. I think she may work on the neuro floor at osf? and I can't remember the other leader's name right now. We typically meet the 3rd Saturday of the month @ INI. It has been sporadic this summer. We have an annual brain tumor walk coming up September 29th. The Mark Linder Walk for the Mind, on the Peoria Riverfront. Free to surviviors, google www.marklinderwalkforthemind. Becuase of the walk, we may not meet until October. My Doctor is Andrew Tsung. My oncologist is Geoffoy. Have you utilized any services from the Cancer center for Healthy living? I love that place. I know they have some various support groups there, but I go for classes and massage. I am sorry about your situation. Maybe you can come meet some of your fellow brain tumor survivors soon. It really helps me to just be with them and share our concerns and triumphs.
Diane

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Thanks Diane! I'm in a wheelchair so I won't do the walk, but the info is good to have. My gyn/onc Is Lococo at the cancer center on Rte 91, which I think is different than the place you are referring to, this one is only about 4 miles from my house.
Again thanks for the info!

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my wife ,like you have this tumor.after 27 meeting TRUE BEAM and temodal ,now she is good.

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Also, I dare to say that I think my brain tumor is conected to my hormons funtioning. For many years I have a cronic barthilin cyst. any one with that relationship. I would like to see an endocrinologiest for that.

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I also heard that Philadelphia has excellent Doctors and Surgeons specific to brain stem tumors. Just wanted to mention. I pray you find the answers and support you need during this difficult time.

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Where do you live? I am actually a 2x Glioma survivor and one of my side effects is with my vision but I think it's different then yours. But I understand what you are going through when you can't find the right place to go because you aren't so bad but aren't as good either. Do you have a person in your life you can talk to? Have you gotten a second opinion? Please email me with any other questions but please put ABTA in the subject area or I'll just put u in spam. My email address is whatsnext1212@yahoo.com

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I was diagnosed 3.5 years ago with a brainstem glioma that is low-grade and hasn't changed much. The last few months I have been having severe neckpain, headaches, dizziness, tired, crabby, etc.. They did another MRI and no change in the mass but I now have Chiari Malformation and Spinal Stenosis. Also have Hypothyroid and nodules there as well. Do you know if this could all be related to the brat in my brain? I have an appointment with the University of Michigan Hospital this coming Tuesday and I am feeling a ton of anxiety about the appointment! I am 31 years old with two babies at home! Any advice woudl be great, thanks!

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Hi angies
I had thyroid cancer 12 years ago. I had a primary brain tumor 2 years ago. I do think there is a connection. I had hashimotos and endometriosis prior to thyroid cancer diagnosis. The brain tumor was a significant surprise. I am a member of something called menigioma mommas. I have a benign brain tumor as well. The have a great collection of articles related to "dual diagnosis". Many feel there brain issues are hormone related. And the thyroid is controlled by hormones as well. But that being said, you do know that many thyroid nodules are just that, nodules. Being hypothyroid is adding to your fatigue as well. I find it very very difficult to know what is thyroid related and what is brain related, and what is just age and child rearing. I feel for you. It is hard to be mom, wife, employee and take care of you. Is your appointment with an endocrinologist? You may want to look further into the the nodules?? I am not familiar with Chiari Malformation, but hope you get all under control and feel better.
Diane

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