Hi, hubby has a Oilgoastrocytoma

Personal stories from survivors
wendy
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Post by wendy » Sat Jul 11, 2009 2:29 pm

Hi,
I am so happy that you are seeing some improvement.Maybe this agood time to have a quick honeymoon so no matter what happens you can have some wonderful memories. I have not regretted going back to New Zealand to finish our family holiday. Looking at the photos makes me so happy.
Keep on fighting.
Love
Wendy

Kristalee
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Post by Kristalee » Mon Jul 13, 2009 11:44 am

Hey Wendy, hope your hanging in there. I really want to go to NZ, looks beautiful, and I am a huge flight of the concords fan :)
I feel great about Mark's scan, just wondering if this is the calm before the storm. He hasn't had any change for a year, so we are hoping that is good.
Take care
kris

wendy
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Post by wendy » Mon Jul 13, 2009 5:23 pm

Hi Kris
That is fantastic news. Don't be worrying about things. Worrying can't change things so it is wasted energy. Can you and Mark manage a nice holiday together. There are lots of good deals at the moment.
love
Wendy

stacy
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hols

Post by stacy » Mon Jul 13, 2009 9:57 pm

I agree with Wendy, that a good holiday makes all the difference and yes shop around as there are great deals at he moment.
Regards Stacy

Kristalee
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Post by Kristalee » Thu Jul 16, 2009 10:11 am

Thanks ladies,
We are thinking of taking a road trip once he is on his temodar break.
Kris

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kenobewan
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Post by kenobewan » Thu Jul 23, 2009 7:40 pm

A road trip could be just what the doctor ordered ;).

Kristalee
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Post by Kristalee » Sun Sep 20, 2009 12:33 pm

Hi all!
Just wanted to update Marks current treatment with VEGf trap. We hadn't seen tumor shrinkage before he started the VegF...Temodar seemed to keep things in control....its been a year and no tumor growth, he has at least a 50% reduction in tumor size! The tumor which was the size of an egg, had 60% removed surgically...now 50% or more is gone....the tumor is about the size of my thumb nail. Suffice to say we are very happy with the way things are going on this trial. They keep telling us not to expect anymore shrinkage of the tumor, but it gets smaller each MRI! I dont wanna get our hopes up, but as we all know, we hope for a stable scan and pray for a shrinkage!
hugs to you all!
Krista

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kenobewan
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Post by kenobewan » Sun Sep 20, 2009 10:18 pm

That's great news Krista!

As you may remember I also have an OA, so will be very interested in how this trial proceeds. It's promising that it is working so well for Mark. Hopefully, this treatment will work well on OA's and other glioma's too :).

Kristalee
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UPDATE!

Post by Kristalee » Sat Oct 31, 2009 9:58 am

Hello all! Hope all of you are doing well :) Just wanted to update you all Marks 2 month MRI.......sooo the tumor has shrunk again! this makes the third MRI in a row! Dr.Norden also stated he wouldnt be surprised if Mark is doing this well five years from now!! yeah! I feel happy and blessed! If they are offering this trial to you take it! VEGF trap!!
There is so much hope on the horizon for BC, I feel it!
Hugs Krista

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kenobewan
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Post by kenobewan » Sat Oct 31, 2009 2:05 pm

Hi Krista,

that's a great result. Hopefully we will see this drug used Down Under soon. It will be great once they publish their results.

Ken.

Kristalee
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Post by Kristalee » Sat May 08, 2010 1:57 pm

Hello :)
I still check this site everyday to see how things are going for you all, just stopping by to share the latest with you all


Mark is going to be of ALL treatments except Keppra :O. So far his tumor is still gone, but I am really nervous about stopping all treatments. Vegf causes to much protein in the liver, and most people end up only taking it for a year, Mark lasted a little more then most.
He just had a MRI last week which still showed no visible tumor.....the plan is to have a MRI next month to see if the tumor grows or not....I guess we are one the watch and wait program...I am nervous, but also curious as to what the tumor will do.... :cry:
Krista

stacy
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Post by stacy » Sat May 08, 2010 11:13 pm

Hi Krista,
Great news about Marks MRI,thats what we want to hear no sign of tumour, I bet your both stoked but yes still a little nervous, I have my Mri coming up next month and looking forward to getting it over and done with so I can get on with life.
Regards to you both Stacy

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kenobewan
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Post by kenobewan » Sun May 09, 2010 11:04 am

Hi Krista,

I second that - the only thing better than no visible tumour is never having had one in the first place!

I now look back at last year and recognise that nervous feeling - no treatment yikes! Fortunately I got over that. Its a bit like winding down after the first week of a holiday - it takes a while to relax :).

For me the biggest thing was realising the difference between acute and chronic treatments. Acute is the medical intervention, which can last for more than a year but is generally short term. Medicine is geared towards short term treatment and generally is short on lifestyle advice - except where diseases are recognosed as lifestyle, eg type 2 diabetes.

Then there is the chronic phase - the lifestyle phase as I call it. I started a food journal and realised that my diet needed to improve. I started taking vitamin D3, garlic, tumeric, phosphatidyl serine, omega 3 and other supplements but tried to keep them to less than a dozen. I was already exercising everyday.

For me the lack of lifestyle advice I received during treatments reflects the misconception that cancer is poorly understood and persists the notion that cancer is a genetic disease. To progress I had to accept that there were lifestyle factors that contributed to my cancer. This no longer surprises me now that I have learned that 80% of cancers are lifestyle or environment related.

So I can relate to Mark's feeling of - what now? Lifestyle changes give us a way to control our lives through non acute/medical ways. Mark may have experienced chemobrain, what I hadn't heard of was chemolungs as well. Since my lifestyle changes I have experienced lung improvements as well as other benefits. My quality of life has certainly improved since I stopped chemo and I wish the same for Mark :).

ABL87
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Post by ABL87 » Wed May 19, 2010 10:28 am

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Kristalee
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Post by Kristalee » Thu May 27, 2010 11:57 am

hello,

As far as I know VEGF is still in the clinical trial stages. There are alot of drugs in the pipeline that are similar to VEGF, that will hopefully be more conducive to long term tumor suppression.

Well, this morning Mark woke me up by having a seizure, this is his 3rd one in total, last one was 5 months ago, he only had a month before he could drive again. My first thought is tumor growth, but since he has no other growth side effects like headache or left side weakness, personality changes to indicate it is growth.I am hoping im wrong...... It was really hot in our bedroom this morning, he was covered in sweat. Mark read online that over heating can cause seizures, but I dunno, its seems to close to going off treatments to be anything that is NOT tumor related.....sigh, its ALWAYS something, he was supposed to go back to work after two years of being away.....am feeling really depressed right now, and scared his tumor is growing.... krista

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