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Post by pringleman on Nov 12, 2013 6:11:51 GMT -6
Hi there Ependymoma Land,
Just had confirmation today that my tumour has indeed regrown. I had one removed last May that ran T2 to T5. Then ends must have been left in as there now are growths at the upper and lower ends of the original area - now there are nodules T2 -T4 and T4-T5. Although they are classed as grade II they are growing at a rate of 20mm a year. The specialist called this 'aggressive growth' and is clearly surprised at the speed of change. He previously said that these sort of tumours are very slow growing - a sentiment that is commonly read on these pages.
My specialist wants them removed before Christmas and is slightly positive that I might walk again but at the same time is clearly concerned about the risks of the operation.
Now I am wondering whether anyone out there has had a successful removal of recurrent ependymomas, particularly in the thoracic area.
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Post by pringleman on Dec 24, 2013 3:22:44 GMT -6
Must say, probably only to myself, that the lack of response to my post is not comforting. Maybe all the cured people have long given up on this site. I hope so. Well I have now had my second operation and while successful (i.e. I am still alive and walking like a zombie and did not need a blood transfusion - there was concern that the amount of scar tissue that I had would mean poor blood clotting) there is still residual tumour in my spine. So now I am heading down the radiation path.
Also the tumour is now classified as a WHO Grade III anaplastic epndymoma.
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Post by pringleman on Dec 24, 2013 4:29:24 GMT -6
Just found this not so comforting description of Grade III "Grade III ependymomas, also known as anaplastic ependymomas, are characterized by a higher proliferative rate and a greater tendency to infiltrate surrounding brain or disseminate into cerebrospinal fluid causing drop metastases..... Complete surgical removal resulting in cure is unlikely for Grade III tumors, even if post-operative imaging demonstrates no residual tumor, as these tumors have a greater propensity to infiltrate surrounding brain or spinal cord parenchyma and have a higher proliferative rate...These patients routinely undergo radiotherapy to the tumor bed and surrounding brain or spinal cord. Craniospinal radiation is generally reserved for patients with evidence of CNS dissemination. The role of chemotherapy either before or following radiation remains uncertain, although this approach has proven to be effective with medulloblastoma. Recurrent ependymoma remains a challenge without a uniformly accepted approach. Some patients undergo an additional course of radiation therapy, and others are treated with a variety of chemotherapy regimens but with an overall modest response rate." neuro-oncology.oxfordjournals.org/content/12/8/862.full
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Post by karen on Dec 26, 2013 20:47:24 GMT -6
Hi there! Just wanted to say that I (too) found the lack of response to your thread disturbing! I will say that I think some of the lack of response about "success" has to do with people no longer being on this board if they truly had successful treatment. My surgery was in 2004 and I certainly haven't been back on this board until recently when I had a suspicious MRI! For the past ten years I have been feeling great, symptom free, considered myself "cured". So I do think it is worth considering that we don't hear much from the people who are doing well and symptom free. :-) Glad you are back home, had been thinking about you and your recovery.
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tami
Junior Member
C2-C4 stage 2 intramedullary ependymoma removed 7/31/13 @ University of Minnesota Medical Center
Posts: 9
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Post by tami on Dec 31, 2013 17:26:13 GMT -6
I agree, people that are doing well don't typically jump on the internet to talk about it. They go on about their lives. Hopefully they are thankful for their good outcome. Before I had my surgery in July, I purposely did not go on the internet to look anything up because I didn't want to read about how awful someone's outcome was. I was trying to spare myself the anxiety.
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Post by pringleman on Jan 17, 2014 23:21:20 GMT -6
Well they have been testing the behaviour of my grade III tumour in terms of tendency to infiltrate the brain or disseminate into cerebrospinal fluid causing drop metastases. I have had two more MRIs and a lumber puncture. Not to mention the CT scans and radiotherapy measuring (what a delight!). An exhausting time. But the results so far are good. My brain is clear for the moment and my CSF was clear of malignant drop cells. Still waiting on the spinal MRI report as to what remains.
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Post by pringleman on Jan 21, 2014 3:27:22 GMT -6
Slowly rising from the dead that is the post lumber puncture headache. Did all that I was told to do - lay down for two days and on the third day I rose and lo I was struck down by a fierce headache. The only solution to the headache was to lie down again. But there lay the dilemma. After two days on my back I was Hypertonic As Anything and having regular spasms and knife like pain (you all know the drill I am sure) and the solution to that is get up and try and walk. So it has been a which is worse? four days.
So now hopefully the head is passing and I can try and get some calmness in the legs. And then build up the twigs before the radiation starts next week.
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Post by Andrea D on Jan 22, 2014 4:30:22 GMT -6
Hi there. I've not responded on a forum before and not sure if it'll be helpful to you even if I do. But I thought I'd share our story as I know how much we rely on others doing just that.(It's comforting to know you are not alone.) My daughter had her first tumour removed from her spine (L1/L2) in June 2011, two weeks before her 6th birthday. As it was a Grade 11 the team decided on no further treatment. Unfortunately her scan in May 2012 showed local recurrence. So she received chemo which didn't really do much and had more surgery to remove one of the new lumps (about 1 cm in size), and was eligible to receive proton beam therapy (alternative to radiotheraphy) in Oklahoma, US (Sept 12). All was looking good until her scan in September '13 which confirmed a new lump, just outside the treated area, and even more devastating 2 small lumps in the brain, both inoperable (one is wrapped round the pituatory gland). She had the spinal lump removed by surgery (3rd time lucky, ey?!) And she's just, this week, finished radiotherapy on the remaining spine and the whole brain with boosts in the hope it will halt the tumours growing and spreading any further. All a bit depressing really. I guess the reason for sharing our story is two-fold. Our daughter's tumour is not behaving as expected. It's remained a grade 2 but has managed to reoccur 3 times and has spread from spine to brain (the CSF tests continually show as clear). We met a child with a grade 3 brain tumour and hers is behaving. So whatever the statisics say, it doesn't mean it will be so for you. And the main reason for sharing this is that despite the 3 surgeries, chemo, and two rounds of radiotherapy (which means she's lost her hair twice) she manages to smile and get on with the day as if everything is ok. I know being 8 she will have a different outlook and understanding on life than when you are older and more knowledgeable, but she knows what's going on and still she doesn't waste a minute worrying about what might be. Her attitude has helped us, as parents, pick ourselves up from each devastating blow and get on with enjoying our days for the hear-and-now, just as we all should in life. Wishing you well throughout your next round of treatment. Hopefully you are surrounded by people that want to help you in some way. Let them. It's good to know you are not alone.
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Post by pringleman on Jan 23, 2014 8:03:26 GMT -6
Thanks Andrea for responding even if the news is somewhat deflating. Your daughter certainly has the right attitude and is a very brave soul. I am smiling right back at her. Family and friends and work are looking after me very well. In difficult times it seems everyone rallys round.
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Post by lw on Jan 23, 2014 9:12:18 GMT -6
Not in my family they don't!!!
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