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4lindsay
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Joined: 12 Apr 2008
Posts: 33
Location: Seattle
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 Posted: Mon May 04, 2009 10:46 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Krista~I totally understand your feelings you had while doing the prom girls makeup. My daughter said she'd love to come up with a t-shirt line that says things just as you suggested, "I don't care, my husband has a brain tumor!" or "Brain cancer sucks...just ask me!" We actually came up with some pretty good ones.
Don't EVER be afraid of asking your husband's doctors too many questions. We are a medical consumer. It is our responsibility to gather as much knowledge as we can and ask every question possible. Afterall, when you're making a major purchase at a store, don't you find out which is the best brand, model etc. and find out every detail you can about it? Arm yourself with a list before you go in. They may seem frustrated (because most people go in blind) but they're actually impressed because you're doing your "consumer" research.
Yes, brain cancer really does suck but you do the best you can to get through it and help your loved one through it. My daughter (23 yr. old w/ an oligoastrcytoma grade 2) says, "If God wants to do a miracle and heal me, that would be wonderful! But if not...I want to touch as many lives as I can in the process!" What an amazing young woman! By the way, she LOVES MAC and would love to be a makeup artist for them!
Take care and keep your head up for Mark.
Dianne |
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Kristalee
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Joined: 06 Nov 2008
Posts: 48
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| Posted: Fri Oct 30, 2009 7:16 pm Post subject: Hi guys |
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Hello to everyone  I havent posted in quite sometime and feel the need to!
Mark has been involved in a trial called VEGF trap......so far the tumor has shrunk more than 60% ! All three MRI's has showed tumor shrinkage ! Our last one was yesterday. Our doctor also gave us some hope saying he wouldnt be surprised if Mark was doing this well five years from now....sounds to good to be true, but Dr.N is very honest 
We all talk about having "hope" and sometimes its hard to actually feel it and believe it...I say I am hopefull but truthfully I am never not feeling what I call the BT feeling...I feel a little better, but am still on my guard Mark feels great and is confident and that is what is most important!
If anyone is going to Dana Farber Boston let me know we are there ALL the time!
krista |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Sat Oct 31, 2009 4:36 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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| Jim youre right! It's been a year since everything started! It does seem much more time has passed! Time to get our lives back so to speak much love! Krista |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Wed Nov 04, 2009 5:06 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Kristalee,
I've been thinking of you, and was SO happy to hear the great news. I can't believe it's been a year now - I really hope things continue to go so well for you and for Mark.
Thanks for sharing,
~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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Kristalee
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Joined: 06 Nov 2008
Posts: 48
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| Posted: Fri Nov 20, 2009 8:27 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Chelsea!!!
How are you and the girls!?! Think about you all the time. Thanks for posting  Mark's tumor has shrunk some more woot! Hope everyone is doing good! Hugs
Krista |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Sat Dec 26, 2009 9:42 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hallo to all
Hope everyone had a wonderful Christmas! Mark has his 2 month MRI on thursday, and the tumor is just sitting there, so yay! He will be stopping the Temo this coming april, and still continue with the VEGF trap infusions. Whoo, can we every just relax with these tumors?! I know Mark and I are very lucky ,but I just want to get to a place where I am not always thinking about his brain tumor, geez I even dream about it  .
Please pray for us! We both need to learn to give this to the Lord!
Hugs Krista |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Fri Mar 05, 2010 8:09 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hello!
It's been awhile since I posted....just popping in to see how you all are doing
Mark's tumor is almost competlety gone...here is a pic of his lastest MRI
it's linked to my FB page... the small dots are what is left....wish I had the scan of his april 08 MRI, before he started the VEGF trap, it was the size of a grape, and very diffused.
hang in there as best as you can, that is all you can do....
http://www.facebook.com/#!/photo.php?pid=30442135&id=1535520819
Krista |
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javigm123
New User
Joined: 06 Mar 2010
Posts: 5
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| Posted: Sat Mar 06, 2010 11:20 pm Post subject: Hi Krista |
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Hi,
I was just diagnosed w a low gr. glioma last month, in my right thalamus. I am only 26 and my only symptoms have been morning headaches and visual disturbances.
Its encouraging to hear your husband's progress. I will be getting a biopsy within a couple months. I was told that a wait and watch approach may be viable, doesn't sit well w me.
How did you find out about the VGEF trial? Keep the hope alive. I wish Mark and myself the best!
Take care,
Javi
[quote="Kristalee"]Hello!
It's been awhile since I posted....just popping in to see how you all are doing
Mark's tumor is almost competlety gone...here is a pic of his lastest MRI
it's linked to my FB page... the small dots are what is left....wish I had the scan of his april 08 MRI, before he started the VEGF trap, it was the size of a grape, and very diffused.
hang in there as best as you can, that is all you can do....
http://www.facebook.com/#!/photo.php?pid=30442135&id=1535520819
Krista[/quote] |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Mon Mar 08, 2010 1:03 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Javi,
Mark is getting treatment at Dana Farber, it's a teaching hospital. My husbands NeuroOnc told us about the trial.
Mark's tumor was/is considered a grade 3 , even though the path report stated its on the lowest spectrum for a 3, guess it's considered high grade 2 ;/ ?
As far as I know there aren't any trials for grade 1 or 2 brain tumors...since they are very slow growing......
If they can opertate on the tumor , I say go for it, sometimes they never grow back
It's a scary thing, but you have alot of positves, including age and tumor grade
hugs
Krista |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Mon Mar 08, 2010 11:45 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hey Jim : D
The trial invloved temodar 21 days on 7 days off, for the last year and every 2 weeks he gets an infusion of 300 mg of Afilbercept (Vegf trap). I asked Dr. Norden if Afilbercept will be getting FDA approval anytime soon, he said "no".....that's confusing since it pretty much dissloved Mark's tumor and is supposedly "stronger and more effect then Avastin"
Mark has one temo cycle left then he will be off it, hopefully for good, but he will continue with the Vegf trap until there is new growth, if there is new growth he will join a new trial, but so far its been 18 months and no new growth, and if you took a look at his tumor, it's pretty much gone.
Krista |
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brainman
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Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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Kristalee
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Joined: 06 Nov 2008
Posts: 48
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| Posted: Mon Mar 08, 2010 11:07 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Thanks Jim,
I dont think that insurance will cover a drug used for lung cancer, that is now working for brain cancer, until the FDA has approved it for that cancer type (brain) which is unfair, people NEED something more than Avastin and Temodar.. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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| Posted: Wed Mar 10, 2010 10:47 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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No, they often use med approved for other things. Avastin for example was developed and approved originally for lung cancer. It now is a component in a lot of brain cancer cocktails. It had to go through some testing but not as much. After all, if it is safe for treating one cancer, it is safe for others as well. Obviously, there is some initial testing just to make sure it works on a different cancer. But that usually just involves a few positive indicator and not a full scale research project. I know this because for 10 years I worked in an Abbott Lab research lab in Chicago in the development of meds. It does take a long time before the insurance companies catch up with new developments. I own insurance will not pay for one of my seizure medications (Lamictal) even though it has been around for years. I believe it was originally approved for treatment of bipolar disorder before it was found to work on seizures as well. If I had been diagnosed with bipolar disorder, my insurance would pick up the cost. Very frustrating since it costs over $1000 for a 3 month supply.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
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