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Sister just diagnosed w/brain tumor possibly ogliodendroglioma

schiermj
Posts: 6
Joined: Mar 2004

Well, this is a first for me. Getting to the point, my sister is just beginning the whole scary path. At this point she has not been officially diagnosed. She has her biopsy next Wednesday and gets the results a week from tomorrow. Right now, I am just looking for something possitive to hold on to. Everyone seems to have had surgery, she has been told surgery is impossible. Her tumor is so involved with the right hemisphere of her brain that if they try to take it out she could easily die, or be a quadropeligic and on a respirator. So chemo and radiation. This seems to me to be pretty bleak. I don't know if they are saying chemo and radiation as something to do, but they don't think it will help, or if it will possibly stop it from growing. Just feeling very heavy hearted, she is married, 29 and has four beautiful daughters, 1, 3, and twins that are 11. This breaks my heart and I would appreciate anyone with anything POSITIVE to say. I have enough negative going through my head right now. Thanks for reading.

TAremote's picture
TAremote
Posts: 57
Joined: Nov 2003

Schiermj....
Don't jump to any conclusions, until you know the type of tumor. It does sound like it might be a good size tumor, but that doesn't matter at this point. I would get a second opinion before much time passes.
I have a stage 4 glio blastoma multiform brain cancer. All the bells and whistles, resection, 6wks of rads, along with chemo. I have now completed 7 rounds of chemo, which is temadar. And so far my tumor has not grown since Jan 04. Now that is good news since my tumor can double in size every 11 days.. I was first dx in July 03, and given 4 to 11 months. So as you can see, I made it past that 4 month thing, and I don't plan on leaving anytime soon.
Staying strong and having a positive attitude is half the battle. The other half is trusting in God, and letting him guide and comfort you during this time.
If I can help you, please let me know..
Also, join the discussion chat room. It is a great place for info, and a place to scream if you need to...

God Bless
Tom

schiermj
Posts: 6
Joined: Mar 2004

Thanks for the good advise, and the encouragement. I am glad that your tumor hasn't grown. That is what we are looking for. We are planning second opinion, her insurance requires it anyway. I am working on not letting it worry me until we know the real deal, but that is proving to be quite the challenge. Lots of prayers in that direction for sure.

I stepped into the chat room, but not sure what to say at this point. Maybe I will try again later. Thanks again.

orville
Posts: 3
Joined: Apr 2004

I am so sorry and she is probably quite young. My husband was diagnosed with a Grade IV malignant brain tumor. He had a crainetomy on March 5th and is having chemotherapy and radiation to try and reduce the two remaining tumors that the surgeon did not feel were safe for him to operate on. He is having great difficulty with coordination, dressing himself, and using his right side. He is taking Temador a chemotherapy medication plus the radiation. He will be 80 years old in May.

katie0713
Posts: 10
Joined: Mar 2004

There are so many possibilites out there. You can't focus on the "what ifs" or "maybes". It is only hurtful to both you and your sister.
Doctors are doing great things all the time all throughout the country.
Just hold on to the positive outcomes and that will get you through all of this.
I know that it is scary. I was just recently diagnosed and I am only 24. Life sometimes does not seem fair, but it is not about that now. You just have to stay positive and hopeful for you and for your sister.
Learn all that you can about her diagnosis. It will make you feel less scared because you are educated. It will also help in making decisions about treatment.
Remember to use this website. All of understand how you are feeling and will try to make you feel better.
You and your family are in my prayers during this difficult time. Stay hopeful and you will win!
Katie

schiermj
Posts: 6
Joined: Mar 2004

Thanks Katie, I appreciate your kind words. I hope all is going well for you. There really are so many advancements etc. I am getting much better about being positive and trying to encourage my family in that direction as well. All the best to you.

littleru
Posts: 4
Joined: Mar 2004

Fingers crossed for your sisters results. I was diagnosed at 22,with a medullablastoma brain tumour which is right at the back, next to the CNS, so was inoperable - the risks were too high. I was given 8 months to live and that was on April 13th 2000 so next tuesday is the 4 year mark. Try and stay positive and doctors are finding new things all the time. I tried chemo and it didn't work, have tried the alternative side of Apricot kernels and B17, and now trying the Grape Cure which is from South Africa
Thinking of you and your family, especially your sister at this time
Lucy

RamonaF
Posts: 3
Joined: Apr 2004

I am new to this-I do not have my full prognosis until tomorrow @11am pst. I am having a hard time finding alternative routes through the maedical community and am hoping anyone with experiance can guide me through. I am a 50year old with a great faith in Jesus as my lord and Saviour, a 6 & an 8 year old, a life I love. I wasn't planning on leaving yet. Any encouragement, thought on alternatives, etc. would be appreciated.

TAremote's picture
TAremote
Posts: 57
Joined: Nov 2003

Ramona:
Hi, I'am a 53 yr old male with stage 4 Glio Blastoma multiform. I was dx in July 2003 and have had a resection, 6 wks of radiation along with chemo which started Sept 12th (temadar). I have now completed 7 rounds of chemo. I do have some lose of vision in my left eye, some short term memory loss along with cognitive thinking issues. Like you my hope lies with Jesus Christ and God. We have a 22 yr old daughter and a 17 yr old son. They don't know the prognosis, but only that I have brain cancer. The Dr's gave me 4 months w/o treatment and 11 months w/ treatment. But the numbers the Dr's give us are only averages, and are not hard numbers that you need to dwell on. My last three MRIs have shown the tumor has not grown. Now this is very important since this GBM can double in size every 11 days. I don't worry about that. I have turned this burden over to GOD. I told him, I needed Him to take this burden (I couldn't handle it), and I would stay here and take care of my family. It took me several tries before I truely gave Him the burden. But sense doing that, I have been doing just great. Trust in HIM, and know that if you keep your eyes and heart focused on HIM, that He will protect and guide you..
I have not tried any alternative medicines due to the fact that what we are doing is working. The chemo, temadar seems to be doing the trick....

God Bless you and your family. Stay strong and focused on your faith in GOD.

Tom.
Please join the chat room. A great place. Let me know what your diagnosis is..

schiermj
Posts: 6
Joined: Mar 2004

Thanks Lucy, I am so glad to hear your story. My sister's tumor turned out to be anaplastic astrocytoma. Still inoperable. I was looking for an encouraging story today, and you gave it to me. I hope things continue to go well for you. Take care.

miguelagon
Posts: 4
Joined: Apr 2004

My name is Miguel Gonzalez i had brain a tumor 4 years ago and now its growing again. im taking radiation and believe me its nothing,what could be more delicate than the brain.Try to find diferrent opinions but dont be afraid cancer is coming to an end real soon with all this descoverys right now.Im sure shes going to be fine because she evidently has a very loving sister next to her.E mail me if theres anything i can do for her support anything miguelagon305@hotmail.com

AuthorUnknown
Posts: 1563
Joined: May 2006

this is 7mark iam a3 time survivor of oliodendroglioma read my websight your answer is there GOD WILL HELP U

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