Any other WHO Grade 3 Ependymoma Survivors out there?

[pringleman]

Hi there Ependymoma Land,

As I approach the 3 year post surgery milestone I am wondering if there are any other Grade 3 Ependymoma survivors out there. I feel like I am the only one here.

On the CERN site it states " the five-year survival rate for adult ependymoma is over 65 percent, although the prognosis is worse for patients with Grade III tumors." (https://cern-foundation.org/?page_id=121).

Further on it gives the stats as: "For those with ependymoma, the overall 5-year relative survival rate is 81.86%. 5-year relative survival rates are highest for those aged 20-44 years (90.8%), and decrease with increasing age at diagnosis with a 5-year relative survival rate of 61.9% for those aged 75+ years." (https://cern-foundation.org/?page_id=103). These do not seem to tally, however no data on Grade 3.

Elsewhere I have read that no-one makes it to the 5 year mark and the longest survivor was 34 months. Hence my goal of making 3 years.

All fine so far but the last one grew back extremely rapidly so not entirely at ease.

Anyway, throwing the bottle with the message into the sea that is Ependymoma land hoping to hear from another G3.

Now time for a walk. Those pins and needles are getting eXtreme!

Tchau,

PG

[sam]

Mar 5, 2016 0:31:18 GMT -6 pringleman said:

Hi there Ependymoma Land,

As I approach the 3 year post surgery milestone I am wondering if there are any other Grade 3 Ependymoma survivors out there. I feel like I am the only one here.

On the CERN site it states " the five-year survival rate for adult ependymoma is over 65 percent, although the prognosis is worse for patients with Grade III tumors." (https://cern-foundation.org/?page_id=121).

Further on it gives the stats as: "For those with ependymoma, the overall 5-year relative survival rate is 81.86%. 5-year relative survival rates are highest for those aged 20-44 years (90.8%), and decrease with increasing age at diagnosis with a 5-year relative survival rate of 61.9% for those aged 75+ years." (https://cern-foundation.org/?page_id=103). These do not seem to tally, however no data on Grade 3.

Elsewhere I have read that no-one makes it to the 5 year mark and the longest survivor was 34 months. Hence my goal of making 3 years.

All fine so far but the last one grew back extremely rapidly so not entirely at ease.

Anyway, throwing the bottle with the message into the sea that is Ependymoma land hoping to hear from another G3.

Now time for a walk. Those pins and needles are getting eXtreme!

Tchau,

PG

[dmdgood]

Dear PG, my favorite mantra these days is "Statistics are for populations, not for individuals". It helps with the anxiety of looking at any sort of statistics on these conditions or being told them, as they are dismal most of the time (yet there are many success stories, like yours, on this forum).

Congratulations on your 3 years, and don't worry about the statistics. You have already defied them.

DM

[Vesb1968]

Hi PG
My hubby has a grade 3 , diagnosed Nov 2010. He is my living miracle, he was given under 2 years nearly 6 years ago. it's still there, lurking, living , waiting to grow and reek more havoc on our lives. Until then we live every day to its optimum. Congrats on getting to 3 years and here's to many more for you both.
Tchau

[pringleman]

Hi Vesb1968,

Thanks for that and greetings to your miracle man. I have not got to 3 years. i got a bit excited at making the 2 year mark. Just had my 2.5 year MRI and still all clear! Not long to go to hit the 3 year mark.

Biggest bit of news was that I have been extended to 9 monthly scans! So I shall zoom on past the 3 year mark. Bit of a shame really but I shall still celebrate 6th December 2016.

Like usual I was very worried leading up to getting the results. The MRI took 1 hour 50 minutes and then the bloke doing it said I deserve a discount. How he managed to knock 50% of the price I do not know but I hope I get him in 9 months time. Maybe because he took 20 minutes longer. who knows but that exact time was a killer. Had to sit outside for about 20 minutes before I could walk.

I was also worried as a week before the MRI I woke up and could not feel or move my left leg. Took ages to get it to move and even longer for the pins and needles (once they appeared) to reduce to normal levels. Figure now that I must have slept funny and anyone else would have woken up with pins and needles but because I already have those went the extra yard to no feeling. It has reminded me that pain is good. Not having any feeling was horrifyingly weird.

Tchau,
PG

[pringleman]

HI DmDGood,

Definitely right - statistics are not for individuals - especially when things are rare.

I think the big move in medicine will be to realise that population studies have done all they can and individuals have to be studied.

Doing pilates the other day the physio was amazed that another patient kept having problems on either side of his body. I asked the patient if he had done anything different this week. He had. He admitted to chopping fire wood. His swing then matched the change in pain. The physio was amazed. I was amazed that he did not think to ask. He thought he had it all solved.

Live on!

PG

[skip goebel]

aka- 'the labrat that lived'. first cut in '93. just finished 5th surgery 6 2018. many treatments and experiments over the years.grade 4 in 2000. first tumor around brain stem at medulliary junction. --- wow! 50 grays? i dont know if i am alive because i am blessed or cursed. google my name and some books may come up. nothing warm and fuzzy but i found out long ago narcissism gets you nowhere. carry on.....

[billanschell]

Hi, Pringleman:

I think those statistics include ependymomas in the brain, which are far more likely to metastasize. The life expectancy for spinal ependymoma survivors are far better, in fact I think that for those whose tumors are fully removed life expectancy is virtually the same as for the general population.

[pringleman]

Hi Billanschell,

Well I am still here and still able to kick! The CERN stats probably do include brain turmours; trouble is that metastasis in the spine goes everywhere. Until recently all my MRIs were brain and full spine - hours of hell I can tell you. I have a book specifically on Spinal Tumours and their statistics are much worse - only 25% made 3 years and none made 5.

I am keen to disprove all those statistics. That was a driving reason of putting up this page. Not had much response though over the years. Grade 3s are very rare so poor statistics as a result.

[[e-mail]]

I have grade 3 Ependymoma. I have two tumors on the brain stem and a tumor in the spinal cord around C5. I went for the surgery hoping that the numbness and weakness in my arms and hands would improve, but it didn't help at all. That was in March of 2015. In the year of 2017 I ate an all raw vegan diet, only fruits and vegetables, and the tumor in the spine shrank a little bit. In 2018 I ate a cooked vegan diet and the tumor stayed the same size. I've been told they can't remove the tumor because where it's located. They said chemotherapy will not help at all. I tried radiation and it didn't faze the tumor either. So, I'm trying alternative medicine.  Different herbs and a vegan diet. I was really excited when the tumor shrink after I had a raw vegan diet. I got impatient and wanted even better results so I started eating a cooked vegan diet but that did not get the same results. I'm now trying the modified macrobiotic diet from Michio Kushi. I'll try another MRI in 6 months to see if I get better results. if not, I'll go back to the raw vegan diet. I'm going to order some graviola tea and see if that helps as well. In 2017, when my tumor shrink a little,  my diet consisted of fruit for breakfast and fruit for lunch   and basically a large salad for dinner. I would snack on pumpkin seeds. I also had four 8 ounce cups of fresh carrot juice made fresh at home with a juicer and four 8 ounce cups of Lou Corona's 's  lemon ginger blast ( you can do an engine search for the recipe, it's also on YouTube).