Scientific question

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Scientific question

by Dodgerblue on Wed Feb 05, 2014 02:13 PM

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Met with my neuro oncologist yesterday and start radiation and Temodar 2/13/14. He was able to give me some more details on my pathology that surgeon didn't. Ok, I don't have the 1p19p codeletion, I'm negative for the idh1 protein and the mgmt methylation result was also bad news. I'm an AA3. I know that these results are not favorable. Just wondering how they work against me?? Finding little, only that it will make chemo less effective. Any info you could share would be helpful! Thanks in advance, Dodger

RE: Scientific question

by jon4156 on Wed Feb 05, 2014 02:40 PM

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In my opinion, based upon what I've seen others go through, the markers are not definitive regarding results.  There are countering studies on MGMT methylation for example, some showing it matters, others showing it doesn't.

I've been on this and other forums for almost three years now and I can tell you that there are people who had none of the advantages you listed and did well, and there were people whom had all the advantages you listed and did poorly.

You are not necessarily at a disadvantage...there's much more to it.  Don't let those results get you down, continue to have hope.

 

RE: Scientific question

by Dodgerblue on Wed Feb 05, 2014 06:17 PM

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Well put Jon and thank you for the response. It's a budding field in terms of what they know and how to put it to use towards more effective treatments, but it seems they making remarkable progress. I have my moments, but am staying positive and motivated to do whatever is nessasary to stay well! Dodger

RE: Scientific question

by dana748 on Wed Feb 05, 2014 08:56 PM

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So sorry to hear about the results!  I did have the co-deletion which should've improved my outcome, but after 3 years it has still returned and I had 99% resection.  Another option my oncologist has proposed if the temodar doesn't help with the re-growth is adding Avastin, I really hope it doesn't come to that but at least it's available for Stage III now as it wasn't 3 years ago when I was first dx. Here's an article on gene therapy to help fight the tumor in GBM patients but hopefully, like the Avastin, it will become avail. to us soon:

http://www.nmh.org/nm/brain-tumor-vaccine-study

RE: Scientific question

by angieblue on Wed Feb 05, 2014 11:58 PM

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Hi Dodger,

In the same genetic pool as you regarding IDH1, MGMT, and tumor grade. And looking for anything that might improve response to treatment. We haven't found anything yet

I think I once read a rationale why daily metronomic dosing of Temodar might work better for MGMT unmethylated patients, the theory being that the daily dosing helps stop the repair process from fixing the Temodar damage. Maybe it was in Ben Williams' document. But our NO didn't recommend this.

The stats should have been horrible for us but they haven't been.Consid er the stats but don't let them get in the way of your recovery.

Hang in there and keep the "blue" in your screen name, not in your life!

RE: Scientific question

by ggfun on Thu Feb 06, 2014 01:28 AM

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My husband's NO told us the genetic makeup of a GBM can vary, I.e. one sample may test positive for a specific protein and a sample 2mm over from the first could test negative. Also, these tumours apparently mutate quickly so their genetic makeup changes over time.

The tests your tissue have undergone may not say much about how you'll respond to TMZ or Avastin. 

RE: Scientific question

by amorris on Thu Feb 06, 2014 03:34 AM

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Eat healthy my friend. No processed foods.  Lots of fruits and veg.  Fish chicken.. little red meat... My husband  eats lots of tomotoes... He was on temodar and radiation and 3 /1/2 year out... now has a new small one but doing well... Do as little sugar at possible.. Look on American Brain Association. or National cancer society for inf..

RE: Scientific question

by johngiustino on Fri Feb 07, 2014 04:20 AM

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MGMT is very controversial.  There is a study that demonstrated that if you test different parts of the same tumor they can have different or no MGMT marker levels.  The other poster is correct, there is no correlation to how well you will or will not do based on MGMT.  Some NOs overly emphasize this, others do not.

RE: Scientific question

by Dodgerblue on Fri Feb 07, 2014 01:16 PM

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My NO simply gave me the answers to questions I asked and told me that it's better to have these makers than not. As Jon stated above, some people have all these markers and don't do well and some have none and do well. I attended brain tumor support group at local hospital last night and met two gentleman who were celebrating their 8 year survivorship anniversaries with GBM. To actually meet two men who have blown away the standard "medical prognosis" of their condition was inspiring. It can be a negative to want to know everything possible about your condition. On the plus side, I played tennis for an hour yesterday less than one month after my craniotomy and did pretty well! Dodger

So scared, radiation side effect

by Shell2018 on Sat Nov 03, 2018 07:13 PM

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Hi Dodger, how are you doing? My daugher is going to start her treatment at Dana Faber next wk. Before surgery, we was told low grade, pathology report shown mixed with grade 2 and 3. Since majority are grade 2, the  neuro oncologist in hospital she went for surgery thinks it is grade 2 and planed to put her with 24months high dose of Temodar so we went to Dana Farber for second opinion. They did pathology test and told us even majority of tumor are grade 2 since it has grade 3 tumor cell, Dana Farbar would treated as grade 3. I am so worried about radiation side effects and also think what if over treated. She is going to have 2gy /day for 5 days a week total 6wks and same time Temador 120mg/day during radiation. Her tumor is about the egg size in partial and occipital location, surgery moved 90%. I am so worried. I saw your post and you went through all these at Dana Farber. You make me feel  much better. Dr. Wen is the greatest Dr. We have Dr. Ramenen Bebroukhim. He is also very good and answers all the questions we have.

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