oligo grade 2

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oligo grade 2

by kristi669 on Wed May 25, 2016 01:23 AM

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Hi all.  I just had removal of oligo grade 2 with both deletions, which they say is a good thing.  I have seen an oncologist and he wants me to start chemo (PCV) and radiation.  I am just so undecided what I want to do.  Can anyone help me?  I would appreciate any and all feedback.  Thanks,

Kristi

RE: oligo grade 2

by rward on Thu May 26, 2016 02:39 AM

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Sorry about your diagnosis. On the bright side, the one you have is slow growing and one of the better ones to get if you do get one.

Some oncologists prefer the watch and wait approach with grade 2 oligos, and others suggest treatment. You might want to talk to another oncologist before you make up your mind. If it were me, I would probably watch and wait. 

All the best,

Ray

RE: oligo grade 2

by kristi669 on Wed Jun 01, 2016 05:26 PM

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Thank you for your response.  Do you know if it is true that ALL oligos are a form of cancer?  I was told this and not sure what to believe since my pathology came back as non-cancerous

RE: oligo grade 2

by rward on Wed Jun 01, 2016 08:56 PM

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That's a good question, and if you go searching you will get several answers- there still seems to be a lot of differing opinions around some brain tumors and classifying them as cancer or not. Grade 2 oligos are generally considered non malignant but still have enough abnormal cells in them to possibly develop into something of a higher grade or malignant. It's confusing because if cancerous and malignant are the same, then you would think a non malignant grade 2 would be non cancerous. I can't really answer your question as I am unsure.

Ray

RE: oligo grade 2

by kristi669 on Thu Jun 02, 2016 08:25 PM

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Thank you for answering though.  This is what has me really confused as to whether or not I should do the chemo and radiation.  My surgeon told me after my surgery to just do chemo and no radiation, said I was too young for radiation.  Then I went to John Hopkins for a second opinion and the swurgeon there told me that chemo and radiation are the standard treatment...ugh...so confusing.  I'm still waiting to hear from the neuro oncologist at Johns Hopkins.  Have you had an oligo in the past?

RE: oligo grade 2

by rward on Fri Jun 03, 2016 01:37 AM

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No, it's my wife that has a tumor, an anaplastic astrocytoma. Since she was diagnosed I have done a fair bit of research and have read a lot of discussions about brain tumors. I have learned a lot in the last year but I'm certainly not an expert. From what I've come across in your situation they usually leave chemo and radiation (or just radiation) for if it later progresses to a higher grade, when aggressive action is usually the best course. The neuro oncologist might suggest just chemotherapy for now, and since you have the IDH1 mutation, it should respond well to Temodar if there are any active cells remaining. Do you know if you also have the 1p/19q codeletion? If so, it's an additional indicator that Temodar will be effective.

RE: oligo grade 2

by kristi669 on Fri Jun 03, 2016 05:45 PM

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yes, I do have the codeletion also

RE: oligo grade 2

by rward on Fri Jun 03, 2016 06:57 PM

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Did you ask why they want you to take PCV over Temodar? Temodar is better tolerated with less side effects and is just as effective in studies I've read. Apparently the vincristine component in PCV doesn't cross the blood brain barrier, and can have long term side effects such as neoropathy, according to some.

RE: oligo grade 2

by kristi669 on Fri Jun 03, 2016 07:27 PM

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I was told the Temodar does not work as well anymore.  IDK.  I just got a call from johns Hopkins and I will be going for my 3rd opinion this Thursday

RE: oligo grade 2

by MrBrightside on Wed Jun 08, 2016 06:34 PM

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Good luck with your 3rd opinion.

Personally I have an Oligo which was originally diagnosed as grade 2 in 2010 and I only had surgery for it at the time.  A few laters it started to come back and I did Temodar.  It stabilized it but not for long.  This past December 2015 I had a second surgery and then 6 weeks of proton radiation in Boston this spring.  The surgery pathology indicated it was now grade 3.

Unfortunately everyone's tumor location and situation is a little different making it tough to get consistent recommendations for treatment from multiple doctors. 

I would never be quick with doing radiation though as you can only do that once and want to use that at the best time.  Feel free to message me with any questions.  I'm no expert but have been through similar.

Chris

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