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mybroed
New User
Joined: 30 Aug 2008
Posts: 2
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 Posted: Sun Aug 31, 2008 11:18 am Post subject: I'm new here |
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I am the primary caregiver for my brother who was dx with AA lll on 03/01/07.
I just wanted to get started and will be back later with more information.
This seems like a very warm and supportive group. I am looking forward to a new place to share my thoughts and feelings.
Thanks
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Eileen - Oak Creek Wisconsin |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4440
Location: Tennessee
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| Posted: Mon Sep 01, 2008 1:38 am Post subject: Re: I'm new here |
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Hi mybroed. I am very sorry about your cancer. If you read my story (links in my signature block) you will see that I was diagnosed with a glioma in 1992 but it was a grade II. It did recur in 2005 as a grade III. In 1992, other than the biopsy, I did not have surgery and only took chemotherapy. In 2005-2006, I had chemo (one round), followed be surgery, followed by stereotacketic radiation. Since then, I have had no evidence of disease (last MRI in Feb 2008). I am hoping to go at least until 2012 before having anther recurrence.
Let us know a little more of your story and we can better be able to help you.
You and your brother are in my thoughts and prayers.
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Jim
Site 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=2405My 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
Blog http://jimhawkinsport.blogspot.com/ |
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mybroed
New User
Joined: 30 Aug 2008
Posts: 2
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| Posted: Mon Sep 01, 2008 2:19 pm Post subject: Part of the story |
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My brother Ed - now 64 - was diagnosed with AA lll on MArch 1st 2007.
Left motor strip and too risky to operate. Started with the standard radiation and the "boost' along with temador. He ended up with severe complictions from steroid induced diabetes, ended up in the hospital, and then re-hab for 6 weeks. He went home alone - and has lived in his place since June of last year.
After many encounters with his oncologist, the family decided that he deserved better care and we transferred eveything to Medical College of Wisconsin/Froerdtert Hospital in Milwaukee. The neuro -oncon was wonderful. Immediatley did an MRI and saw that none of the previous treatment had worked.
Ed started Avastin/CPT in October and is beginning his 8th and 2nd to last cycle this Friday. He has been lucky to not have any major side effects and the tumor shrunk - at first and then remained stable. His last MRI which was last Thursday is showing only a microscopic area of "live tumor".
With winter approaching we have finally encouraged him to move. It is very heart breaking for him, but he knows he has to do it. He can no longer drive and his LOVE is his Custom 1955 Chevy.
He is a polio survivor and unfortunately has right side weakness due to that, so the tumor on the left side has really messed with him, but he is DOING SO WELL. He walks with a cane for short distance, uses a walker for longer walks, takes care of his daily living activities. We have a housekeeper who comes in once a week to clean, do the laundry and grocery shop. He has 100s of friends and is never lacking for a good meal.
HIs major complaint is the fatique, but he knows that it could be so much worse and counts each day as a blessing.
Now - here comes the scary part. The doc wants to give him a break around mid November - no Chemo, no Avastin nada, zilch, zippo. He will "follow him closely" with MRIs - but that is still only every two months. That scares the stuffing out of me. I know how ugly these things can turn and I just can't imagine having gone this far - what it would be like for it to all go sour. I'm really scared and I still have 12 weeks before I REALLY have to worry about it. Yes - I am ONE of "THOSE" - the kind that tries to stay positive, but tends to try to fix it all RIGHT NOW!
Thank You for the welcome. I look forward to meeting many more participants and learning your stories.
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Eileen - Oak Creek Wisconsin |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4440
Location: Tennessee
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| Posted: Tue Sep 02, 2008 3:49 am Post subject: Re: I'm new here |
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mybroed, Ed and I have a lot in common then. My glioma was also in my left motor strip. In 1992, in consultation with my doctors, I opted for no surgery but to see if chemo worked first with "close following" with MRIs. After two cycles of chemo, all that they could see was necrotic tissue. I continued the chemo for a total of 13 cycles before they discontinued it because it was affecting my blood count so much.
My surgery in 2005 has left my with minor right sided weakness, lack of balance (due to right leg weakness mainly), and difficulty speaking (worse some days than others).
It does sound scary to just wait and do MRIs for a while. I do not think anyone would say that I am that type that "tries to stay positive" either  . I just try to live one day at a time.
You and Ed are in my thoughts and prayers. Thank you for sharing with us his story.
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Jim
Site 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=2405My 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
Blog http://jimhawkinsport.blogspot.com/ |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 575
Location: Brisbane, Australia
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| Posted: Sun Sep 07, 2008 4:12 pm Post subject: Re: I'm new here |
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Hello Eileen
Thanks for sharing Ed's story & welcome to our forum. I am so sorry Ed is having to go through this although it is good that his tumour is a lower grade. Our Jim (Brainman) is a good example of surviving & living with a Brain Tumour.
You will find lots of support, comfort, & advice here.
I too would be a little hesitant & unsure of Ed being taken off treatment later this year. Brain tumours are tricky & can be erratic in their growth & behaviour, especially with Ed's MRI showing a small area of "live tumour". I would be talking at length with Ed's specialist about his decision on this, maybe seeking a 2nd opinion?
Thinking of you & my prayers & thoughts are with you & your Bro.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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