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Grade 3 Anaplastic Oligodendroglioma

KellyAK2011
Posts: 22
Joined: Oct 2011

I was diagnosed on 10/3/11 after undergoing left frontal resection on 9/27/11. Very crazy set of events... I had a tonic-clonic seizure on 9/2/11 out of the blue during hot yoga. After a visit to the ER, a normal neuro exam, and a clean CAT Scan (the tumor couldn't be seen), I received a referral to a neurologist. I saw him a week later, had another normal neuro exam and a "rule out" MRI was ordered for 5 days later. Needless to say it didn't rule anything out. He actually thought I'd had a stroke and proceeded to order up a bunch or tests pursuing that angle. A good friend of my husband's who happens to be a radiologist took one look at my MRI image the next day and said "no way that's a stroke, it's a tumor and she needs to be in Dr. Estrada Bernard's office right now". So, that is where I went, he saw me the same day (9/23/11) and I left with my resection scheduled for 9/27/11.

I'll be in treatment (chemo and radiation) beginning today 10/17/11.

Crazy really - it is so surreal. I just turned 44 years old on 10/13 and am (according to my Medical Oncologist) "disgustingly" healthy with a performance status of 120 (I thought they only went from 0 to 100, but apparently not). Hopefully it will take me a long way and give me a lot of time to be with the people I love.

sadinholland
Posts: 231
Joined: Apr 2011

My husband was diagnosed on July 2, 2010. He went through a gross total resection and radiation and chemo and then the maintenance chemo. He is doing very well right now. Keep your head up and keep the faith. God Bless!

plhamby
Posts: 7
Joined: Oct 2011

My sister has had it for 13 years. Until this year, she has led a fairly normal life. She just finished radiation for the second time. She has her MRI Wednesday. My prayers are with you.

ravibalgi
Posts: 6
Joined: Nov 2011

Hi Kelly,

My aunt(44) also was diagnosed with Anaplastic Oligodendroglioma (Grade III) and she underwent a resection on Dec 7th 2010.
She was put on a PCV+RT procedure which is suggested as the best treatment
Right now, she has completed 4 chemo cycles.
She has complained of very little headache since she was operated.

Also she has shown very positive signs of minimal or no loss of gross and fine motor skills.
Her memory is also good, though she faces little problem in building complex sentences, but
She is weak due to the rigorous medical procedures, but she is definitely positive and improving. We are happy with her progress and we are thanking God continuously and praying each day.

To add further, and to learn more about her prognosis her frozen blocks have been put through 1p19q co-deletion tests (this will only aid us to make more informed decisions and does not alter her current treatment regimen)(http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007104/pdf)

My heart reaches out to you, because I can feel relating to my aunt and her medical, emotional state of being. I'll pray for you. You will get well and will be Hope for others

warm regards
-ravi

KellyAK2011
Posts: 22
Joined: Oct 2011

Ravi,

I very much appreciate your post and positive outlook. For whatever reason, I just don't think this is how it ends for me.

I still have 9 more fractions of radiation to go, but I had to go off Temodar this Monday. My platelets dropped, as of today they are still too low for me to restart. I'll get tested again this coming Monday. I sure hope I can restart and cycle as the doctors originally planned. My medical oncologist said since I took it 29 of 42 days I very likely got the biggest bang out of it. However, my radiation oncologist told me that the radiation disrupts the blood brain barrier cumulatively - so that would mean my biggest bang would be in the final fractions. Who know's?

If I recur PCV is the next protocol for me. I am getting my lifetime dose of radiation so there won't be a second time with that. I have all the positive genetic factors, so I am very and ever hopeful.

I will be praying for your Aunt and especially that she has the favorable genetic factors. It is definitely a marathon and not a sprint.

Blessings ~ Kelly

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Kelly. I just wrote a response to your comment on my "Today: Treatments, etc." thread, and now I just saw these posts. I don't know how I missed your posts...I tend to miss stuff on CSN if I don't check it all the time.

I see that you were just very recently diagnosed. I would think that you are a long way away from needing to try the BBBD but it is good to know that there is another treatment available down the road. My offer stands no matter when you may have questions about the BBBD or need any local help. I'm not going anywhere....I love Oregon and I plan on staying in Salem for the rest of my life. And I will always be available and willing to help anyone from CSN.

Great news that you have the gene deletions! David did not have those, but thank God, he still had a favorable response to Temodar. I read that your platelets are too low to do Temodar right now and that you are doing radiation. When David was first diagnosed, our NO said that we could choose to do radiation alone, or Temodar alone. We did not have to do both. But when the FISH evaluation came back and showed that David did not have the gene deletions, our NO said that we needed to do both treatments. So since you have the deletions, radiation alone could very likely be enough to knock out any lingering cancer cells. And hopefully your platelet count will come back up and you can continue to do Temodar during radiation. David's platelets dropped after his first IA (intra-arterial) chemo treatment but they came back up within a week.

Please continue to post and let me (us) know how you are doing!

Love and blessings,
Cindy

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