This was so fast...

Personal stories from survivors
Morpheus
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Post by Morpheus » Fri Mar 04, 2011 12:55 pm

Great news! Thanks for sharing both of you!

Morpheus
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Post by Morpheus » Sat Mar 05, 2011 11:28 am

Just a side comment. When I first turned here in July 2009, there was only really one GBM4 survivor (Femme's daughter) - how wonderful there now are more GBM4 participants.

jaytee
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Post by jaytee » Sun Aug 19, 2012 7:54 pm

It's nearly four years ago that Pen's diagnosis came in, and I need to tell you all she's still here. MRI's are still clear, but she is having a few brain function issues; could be alzheimer's, she reckons! :D Every day she goes on is a joy.
Just wanted to share.

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kenobewan
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Post by kenobewan » Tue Aug 21, 2012 7:52 am

Thanks for sharing!

All good news is welcome :).

Energy is the key to improving the quality of life. An important part of that in cancer is managing fatigue.

jaytee
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Re: This was so fast...

Post by jaytee » Thu Jun 27, 2013 4:16 am

I just reread my initial post. September, 2008. Is it that long? Since then our house has burned down, we've had four grandchildren, life goes on. As it does for Pen. MRIs clear and less frequent, her health is incredible ( she continues the organic, juice and vegetable diet, but now drinks a little wine ) and she has another grandchild of her own, with another coming.

This is a very strange place to be. I first found this website through desperation, a desire to find reasons, and advice. The warmth I was welcomed with took me a little aback, as I could not imagine anyone who was feeling as I did could have anything to give. Of course, I was wrong. I've leant that adversity brings out generosity in people, and I thank all of you for that lesson.

My return visits to this site have been sporadic, and will probably diminish as time passes, but I hope to pop in from time to time with more updates, or just to say 'howdy', a greeting Pen has used for years.

The folk on this site are truly amazing. I wish all of you, or the people close to you who are of concern, the same luck I've had with my sister.

Glioblastoma Multiforme IV. Even the name is ugly. But it isn't always a death sentence.

Love to you all.

jaytee
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Re: This was so fast...

Post by jaytee » Thu Jun 27, 2013 4:38 am

I missed Hearcam's query re Pen's diet.

She bought only organic veg. We all chipped in and bought her one of those super juicers which apparently extract everything worthwhile from veg. No meat, no dairy. Vegan, in fact, but the juicer, and the organic produce is what she insists is the difference. In my view, this is all true, but it was the attitude ( and a whole lot of luck ) that did it. Anyone prepared to drink dandelion coffee deserves to be given a chance. Two years of a very strict regime, and she started to say that she missed a glass of wine, so we found many organic wines, and now she has a glass.
She is 65, has a crafty hairpiece, and looks 50. Miracles happen.

jaytee
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Re: This was so fast...

Post by jaytee » Tue Aug 20, 2013 10:27 pm

Latest news. Pen went for her regular MRI last week, with the usual trepidation. She has been told she's clear, and there is NO NEED to come back!!!

MIRACLES HAPPEN!!! Never give up.

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kenobewan
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Re: This was so fast...

Post by kenobewan » Thu Aug 22, 2013 8:17 am

Great news!

They have discovered a CNP protein that gives a GBM patient a survival rate similar to lower grade tumours. Then there is her positive attitude.

Many doctors do not have the most caring nature. We found those with a caring attitude we responded to better.

From one monthly to three to six monthly, I never stopped having scans between treatments. Symptoms showed up before scan changes in my latest progression.

Enjoy the present and presence!

jaytee
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Re: This was so fast...

Post by jaytee » Tue Apr 22, 2014 7:01 pm

It saddens me to be back here. Not because of anything I find here; I am always amazed at the strength and courage of people. I'm not sure I would be thus if I was facing the challenges that those on this forum face. No, it's because my sister, Pen, is rapidly developing the symptoms that she showed originally. Just when we thought we were through the woods, this bastard of a disease seems to have been waiting in ambush. The deterioration in her speech has ben rapid. So, it's an MRI tomorrow. Tomorrow! little more than a week ago she seemed fine. I have to stress that we have nothing definite yet, but we are shattered. She is clearly fearful of the outcome, and she has just got a new grandson.
I know I should be grateful; after all, a doctor ( also a friend, as much as he could be ) I knew was diagnosed with this bloody thing and was dead in five weeks, and we've had five years, but I'm not. GBM IV is a rotten curse, and we thought we might have banished it.
I hate it.
Sorry, I don't really have the right to come here and whinge.

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Re: This was so fast...

Post by Naree » Wed Apr 23, 2014 8:02 am

Hi Jaytee

I have been coming to this forum for almost five years, never have I posted anything but I find it gives me strength. My husband had a benign brain tumour in 2009, he is fine now but it NEVER goes away. This year he seemed to be displaying symptons as he did before the tumour removal and I was so concerned something had returned however lucky for us it had not his MRI was clear again. Thank goodness. I know your sister's situation is worse, but I think this is a great space to "rant" cause no matter how much you tell others how you feel, the people here really understand. I tell people its not like a broken arm we cant see whats going on in the brain or how it recovers.

I sincerely hope all goes well with your sisters MRI.

jaytee
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Re: This was so fast...

Post by jaytee » Wed Apr 23, 2014 12:59 pm

Thanks Naree. Yes, I'm not sure how I would have done without this place.

Pen had her MRI this morning. They didn't want to see her urgently after it, so that's good news in a way. Off to the oncologist next week. Fingers crossed. Meanwhile, I'm off to the Royal Women's with my other sister, for tests re suspected uterine cancer. It never rains... And Mum turns 96 in July. She's already buried one of her children. That's not supposed to happen.

jaytee
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Re: This was so fast...

Post by jaytee » Sat May 03, 2014 9:44 am

Pen underwent surgery (again) On Wednesday night. She deteriorated from seemingly normal to being unable to walk or talk in less then two weeks. The surgeons say the op was a success, they were able to remove "most" of the tumour. Now it's rehab and hope.
Something they said has surprised me. I had long thought that Pen's survival so far had been aided by the cystic component of the growth. Not so, it seems. They said that a large number of tumours have a cystic component. Pen's luck has been due to the "accessibility" of the tumour, meaning it could be mostly removed. Same thing this time, but with more problems due to it being the second time around. Seems they are reluctant to give more radio therapy.
Pen's condition today is far worse than after the first op, but she remains as ever cheerful. I've never seen bravery like it.

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kenobewan
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Re: This was so fast...

Post by kenobewan » Sun May 04, 2014 9:29 am

Glad her operation went well.

There are usually some cells left behind, but you are right to commend her bravery. Such a positive attitude also means she gets to avoid being on antidepressants.

Remember to take care of yourself too. There is a tendency for carers to burn out if they try to do too much, instead of sharing the burden. Also you should not be afraid to accept or ask for help.

Anyway this is what we have found and there are no right answers for all situations.

Take care.

jaytee
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Re: This was so fast...

Post by jaytee » Mon May 19, 2014 6:29 pm

Ok. Three weeks nearly since surgery. Pen, as usual, was cheerful, but she came out of the op with no speech, unable to use her right arm at all. Given her tumour was in the left parietal and temporal lobes, this isn't surprising I guess. The improvement since is nothing short of astonishing, and she is going home on Saturday! Nothing to say how long she's got this time, as, asa we all know, this doesn't go away, but every day is a gift.
Now she has got to be told that Libby, our other sister, has been diagnosed with uterine and possibly ovarian cancer. It never rains, etc....

helsinkyh
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Re: This was so fast...

Post by helsinkyh » Wed Jun 04, 2014 9:00 pm

wow i can certainly feel your frustration, i suffer from manic depression now








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