Brain Tumour Survivor

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PostPosted: Fri Dec 19, 2008 9:32 pm 
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I have just been to see my neuro oncologist. In between visits I become more sure that I am finally seeing the trees for the forest. The visit approaches and I feel confident that I have some answers.

Then I see one of them and everything becomes uncertain again. The prognosis or what I am being offered changes and suddenly I can only see the forest again.

So I am off the chemo now. My prognosis has changed back to being a grade 2 rather than a grade 3, 5 or more years. This specialist says that my tumor is inoperable as so diffuse, but that is good as high grades don't behave this way.

Now I am in the treatment vacuum with sole reliance on regular scans. This is a place that I dreaded 3 months ago, no wonder patients l throw our hands up and say too hard. One thing that I have decided is not to do this.

It has come down to which part of each story to trust in and ask who has got which parts right. The only way to tell is to have enough research behind you and takes lots of notes. Each of them has had consistant and inconsistant parts.

I believe that you need to retain control by at least playing an active role in the decision making. BT treatment still has a long way to go, but I always feel like I have been played when there appear to be no options.

It appears easier to know when someone is giving you the wrong advice. So currently, my role seems to be to work out who is wrong and why. Then apply what I have learned and make decisions.

I still don't have many answers but at least I'm playing a part in my future :-)


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 Post subject: Hi just an update
PostPosted: Thu Feb 19, 2009 10:31 am 
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As you know my hubby Mark has a grade 2 oilgo.....resected about 60%........he had his MRI a few weeks ago and the doc said, he didnt think the rest of his tumor will enhance.....and hopefully temador will dry it up or at least keep it stable......as far as I know grade 2 has a good prognosis? Its hard to find info about enhancing BT VS a non enhancing BT, what does that mean, if the tumor isnt enhancing?
Mark is very depressed and I dont know what to think anymore. I feel grade 2 or 3 is still the same outcome in the end, sorry if I sound unhopeful. We are both trying hard to find some positves in this situation.... Krista


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PostPosted: Thu Feb 19, 2009 9:30 pm 
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There is night and day difference between grade 2 & 3 in prognosis. With an oligo grade 2 prognosis may be greater than 10 years. For a grade 3 it may be less than 5. We are talking averages here, half will do better in each group and half worse.

Location, size, age & karnofsky score will help to predict whether the grade is high risk or low risk. Consequently, this will help to predict which half of the group he is likely to sit in.

A low grade Oligo is one of the best tumor to have if you had a choice. The prognosis is usually better and Oligo's usually are the most responsive to chemo.

Depression is a common event for cancer. If listening to favourite comedians and games don't cheer him up, it may be worth seeking professional help. A positive outlook (as possible) is essential. Positive thinking alone may not cure cancer, but depression and stress can make things alot worse.

There are some great personal stories here. People doing it tough, but who have such courage its inspiring. Try reading a few, if you haven't already.


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PostPosted: Thu Apr 23, 2009 11:50 am 
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Hello all,
Mark is due for his first MRI after the rads swelling wore off. We are of course nervous.
We changed hospitals so, we have no neurosurgeon at this time. We are seeing a neuro-onc. He has stated that the tumor that is left is inoperable. Am I wrong to think we should get a NS's on board?
Mark wants nothing to do with another brain surgery. I don't blame him, but I think it is something we need to think about.
We are at Dana Farber in Boston, I have heard great things about Peter M. Black, Neurosurgeon-in-Chief, Brigham and Woman's Hospital
Children's Hospital,Chief of Neurosurgical Oncology at Dana-Farber Cancer Institute, Franc D. Ingraham Professor of Neurosurgery
Harvard Medical School. I REALLY want him as Mark's Neurosurgeon.
I am going to ask to him look at Mark's newest scans and see what his opinion is. A part of me wants Mark to just have surgery to remove what is left, he did so well , his is young.....I am so afraid of what is left behind, it's like its just waiting to upgrade itself......
I hope everyone is doing good. I am following everyone's lifes on here, so I am free to talk if anyone needs to vent.
hugs
krista :wink:


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PostPosted: Thu Apr 23, 2009 2:50 pm 
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Good luck with the MRI!

I don't blame Mark for not wanting to undergo further surgery. I am going to in the next 12 months in the hope that this will decrease the chances of it turning into a higher grade.

Its good that you know who you want on his team, it vital to have a good team.


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PostPosted: Fri May 01, 2009 11:34 am 
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Hi guys and gals,
Mark just had his MRI, it wasn't what I was hoping for, but there was no change and Dr.Norden is saying its "stable"...booo I want to see shrinkage
Well, the cool news is, Dr. Norden came bouncing in the room seemed happy.....I thought yeahhh, maybe the tumors gone?! BUT it was really that he had saved a slot for a clinical trial for Mark!
I am sure Keno has heard of (VEGF trap) or most people have heard of VEGF, its a protein your tumor makes , that tells your tumor to make new blood vessles. SOOOO! he will be starting this trial as well as starting a new dosing of temodar 21/7....for a whole year.....arghhhhh.......I am thankful for alot of things, but, he will have to go to get infusions in Boston every 2 weeks, we live in NH which is a good 40 mins, so.....he isn't working so this could be a job of sorts for him.
Other noteworthy hospitals doing the trial are.....MD Anderson, Sloan, UofW , some others I forgot........I am just praying this trial will start to pry open the steel door that is brain tumor treatment!
Norden said this is better than Avastin.......so lets us hope so!
I'll be bugging you all alot more with Marks progress........
It is overwhelming to have to think of another year of full blown tumor treatment.........there goes our honeymoon we never got to take in the first place, which we were planning to go on this Aug.
BUT! I was sooo thrilled this was offered to Mark, since there are only about 80 people in the whole US even in the trial!
Keep in touch, time to lay down, was at Dana Farber since 7:00 in the morning!
K


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PostPosted: Sat May 02, 2009 12:38 am 
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What trial has Dr Norden volunteered Mark for? Trials can be a double edged sword, in that not everyone will necessarily receive the real treatment (although often in BT trials everyone does, may pay to ask) and how confident are you that it is going to effective?

Did Mark have the methylated MGMT test that shows that Temador is likely to be effective? I was on Temador for 15 months and there was no change. Latest studies show that Temador may not be the best treatment unless you have the pathology to back it up. I chose it as it appeared to be twice as effective as other chemo. Now they take a more targeted approach based on the tests.

I am planning a preventative operation in the next 6-12 months, as surgeons now say that they can get most of the remaining tumor out; hopefully with minimal damage. I will have chemo afterwards and having done more research this time I am leaning towards the nitrosoureas as they tend to be more effective when you have LOH; as I do.

Still interested in the metronomic approach to chemo and will ask whether I can take my nitrosoureas cocktail this way :).


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PostPosted: Sat May 02, 2009 11:45 am 
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hi keno,
I did ask about the MGMT test, which he said only are done for GBM...not so sure bout that. I asked right away if placebo would be invloved, he said no, everyone is getting the VEGF trap, this is a dosing phase. He doesnt have the two chromosone deletions, this was also another reason Dr Norden thinks it would be a good trial for Mark. its for all grade 3 and recurring GBM's. Thing is Marks tumor got destroyed when they did the FISH test (LOH)
I Dr. Norden doesn't like alot of questions, he really wanted Mark in this trial, and if it is as promising as they say it can be, then I am grateful.
I have to mention, Marks dad is always with us at appts, and tells me before hand no to ask my "dumb" questions, such as adding in a NS to the team of doctors........I feel like Marks tumor CAN be more fully removed, but I am always shot down when I ask about it.
As for your upcoming surgery Keno, what we were told would be removed and what was ACTUALLY removed was compelety different, if you are in the US, I'd go to Duke, or MD Anderson.......get Dr.Friedman at (Duke)
If I can do it all again sigh......
Is your tumor enhancing? growing? causing numbness or seizures?
Krista

ps The trial is for a drug call filbercept taken with 21/7 temodar. Since Mark has a oligoastro, temodar seems to be a good option for chemo.
I am scared and hate this whole process.....Dr.Norden is confident about the drug, it has been used in ovarian and lung cancer, its part of the same family of Avastin, only stronger and in Dr.Nordens words "better".
How confident are you about your upcoming surgery? about as much as you can be right? After all you are trusting other humans with your future. All I am thinking is I HATE brain tumors, I NEVER thought this would be Mark and my life and ultimate focus. Its HARD. I want his tumor to just be GONE.


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PostPosted: Sat May 02, 2009 5:44 pm 
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Hi Kristalee, I have been reading your posts and you sound just like me! My husband was diagnosed with an astrocytoma 2 days after our wedding and we didn't and still haven't had a proper honeymoon!!!

I know that it is a very scary process and I completely hear you when you say you never thought that this would be your or your hubbies life together and that you just want the tumour to be gone. That is exactly how I feel. I know that both neurosurgeons that we have seen have said that surgery is the best treatment for Jus followed up with radio and chemo. But in saying that I guess that it depends on how accessible the tumour is in the brain. You sound very proactive with your hubbies treatment and please don't let people tell you not to ask stupid questions. I have found that the only way for me to try and deal with this is to be armed with as much information as possible and frankly if that means me asking stupid questions then that is what I will do!!!!!

Keep is posted on how your hubbie goes with treatment.

Alley


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 Post subject: hi all
PostPosted: Tue Jul 07, 2009 10:05 am 
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Well,
Tomorrow is Mark's first MRI after starting the VEGF trap clinlical trial.
I already can't breathe! How am I going to sleep tonight :(. Mark is on a temodar break so he is feeling so great. He says he actually feels normal.
Not really knowing what to expect, hoping for shrinkage, at the least no growth. Fingers crossed and praying!
hugs to you all for dealing with this BT awfulness.

Krista


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PostPosted: Tue Jul 07, 2009 3:26 pm 
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Hi Krista,

All the best with the scan tomorrow :). I know that my wife gets more anxious then I do before each one.

I hope that the trial is effective for Mark and there is a reduction - this would be a great start.

If he is feeling normal that's a great sign. I am looking at going back on chemo next month to try to tidy things up for a future operation.

Maybe a good walk or jog to burn off some of those nerves :).


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PostPosted: Wed Jul 08, 2009 11:01 am 
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Hi, we just got home from Dana Farber it was a LONG day we were there for 10 hours.
We are both very happy! Finally his tumor looks smaller and isn't enhancing as much. We were hoping at least for a stable scan, but we are blessed with a smaller tumor as well!!!! I haven't seen Mark this happy in a year!
Krista


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PostPosted: Wed Jul 08, 2009 4:56 pm 
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Great news!

I'm so glad the trial is working. Thanks for sharing the good news :).


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PostPosted: Thu Jul 09, 2009 11:41 pm 
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Great news Krista! Congrats on the great news. :)


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PostPosted: Sat Jul 11, 2009 1:36 pm 
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Thanks, hope all is well with you guys :)


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