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Post by msweeney on Oct 8, 2018 11:18:06 GMT -6
I am a 13 year survivor and have not visited this forum for some time. In my early years I was a frequent visitor, contributor and supporter. I referred a common acquaintance to this forum recently and revisited to see what is happening here. Though there is still lots of great info here, I am sad to see that the forum is not near as active. I am wondering why that is and if there are other resources I should be aware. This was such a huge part of my moral support in those early years as well as my first stop for advice and counsel. I hate to see it diminished.
Matt
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Post by feliciafawn on Oct 8, 2018 18:08:03 GMT -6
I feel the same way. I find it as a source of comfort as I am still battling this condition to this day, which news of an intracranial metastasis in the past year  |
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Post by Lee Castillo on Oct 15, 2018 12:51:20 GMT -6
I started feeling pain in my left leg Aug 2018 I went to my ortho doctor in Sept 2018 after getting back from Europe. I went for PT for a few weeks wasnt helping Oct 11th I got my MRI done and Oct 12th my birthday I got the news I might have a Ependymoma. Its Oct 15th I am going to get a MRI with contrast, its in my spinal cord behind L1/L2. Tomorrow morning I see my first Neurosurgeon. I am trying to keep a positive outlook.
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Post by billanschell on Oct 17, 2018 10:54:12 GMT -6
Hey, Matt: It's because most of the activity, by far, now takes place on SCTA's Facebook page. If anything, I think there's more activity now than in the past. If you're on Facebook, just search for SCTA. Maybe this link will take you there as well: www.facebook.com/groups/48390166351/--Bill |
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Post by Pat Simone on Nov 4, 2018 18:47:51 GMT -6
Hey Bill, The Facebook page is more of a "sympathy" forum. I didn't like it!
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Post by billanschell on Nov 4, 2018 19:07:47 GMT -6
I'm more partial to hard information too, but I guess it's up to us to post it.
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Post by pringleman on Nov 4, 2018 22:22:53 GMT -6
I too did notice that the usage had dropped - which in turn caused me to stop coming. Viscous circle.
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Fraziermark67@yahoo.com
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Post by Fraziermark67@yahoo.com on Feb 13, 2019 5:17:27 GMT -6
I just found this form a couple of days ago. Even though I was diagnosed with ependymoma grade 3 in March of 2015. I was wondering if anybody else was having success with alternative medicine. In my case they can't remove the tumor because of where it's located. My oncologist said chemotherapy won't help either. I did the six weeks of radiation but it didn't phase the tumor at all. So, instead of doing nothing, I'm trying alternative medicine. Addition to herbs I ate a Raw vegan diet and drank 4 cups of carrot juice and 4 cups of Lou Corona's Lemon Ginger Blast juice daily and the tumor in my spine did shrink a little. In 2018, I ate cooked vegan food. The Tumors stayed the same. I'm interested in knowing if anybody else is having any success with any alternative medicine
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