Please first accept my deep sorrow and prayers for the loss of your husband,
you, as his wife, and his family and friends always strike me as equal heros in
this fight. May God help you in this time of loss. I can not give proper words,
only to say I just lost my Aunt to a secondary brain tumor last month.
secondly, sadly, I am also not new to group, What I want to add, I will fight
on for Jerry, each step, each day. I echo the angels nightly, the names all play
in my head nightly from the years within groups, and several to many close to
home from this growing monster of a disease. I to do not get in to the day to
day of the group yadda, but watch, read, and respond when my heart asks me to
only. I am a 6.5 yr survivor of the same thing as your husband. I to am being
treated right now for bladder and bowel loss of control, mild so far. I to have
just lost my home, my job, and most of my friends and family are busy with thier
own young lives, they assume I am tough enough
to live forever. I dedicate all my time to my Son. I am divorced, 6 months
before discovery of tumor, I know!. Please share all and anything you want, I
have no pride, at least the fake, false kind, that stands in the way of success.
I have open ears and should you need to vent, that is what I think you should
do, we are here for you. I hope you are better with each day, and that your
children and you have peace and understanding. You are in my thoughts and
prayers. I have spent a very long time contemplating death, not in a negative
way, or with fear, but it's journey, and I know your husbands eyes are shinning
upon you this night. Peace
Daniel Shattuck

Michelle Huffman <michelle@...> wrote:
I have only posted a few times since joining the group. Here is
my husband’s story – short version.

Jerry was 39 when his tumor was found in 2000.
Gross resection of 5 cm left frontal lobe – oligodendroglioma –
No chemo or radiation
Residual tumor remained stable for 6 years
Tumor shows a slight instability on the mri involving the corpus callisum in
January of 2006. So slight we couldn’t really see it.
14 monthly treatments of Temodar with slight shrinkage.
January 2007: mri looked good. NO said it was up to Jerry to keep going on the
chemo or stop. He decided to continue as he was tolerating it well, etc.
April 19, 2007 Went in for “last” mri on with the plan to stop chemo for 3
months.
MRI showed several growths, one as large as 3 cm, increased activity in the
corpus callisum and activity in the right frontal lobe. It also showed what
appeared to be a white shadow which was explained as a break down in the blood
brain barrier.

April 23 - Jerry’s case goes to tumor board for treatment options: biopsy to
type, then chemo and radiation. Estimated time of survival 12 months.

May 29 - Craniotomy to biopsy: Anaplastic oli III. Pre surgical mri showed
more growth in all previously mentioned areas and now in the left paratiel lobe.
Walked and talked and everything after surgery. He actually seemed better, but
within a few days was started to change.

June 7 – follow up NO. I told him that I felt Jerry starting to drifting away.
June 9 & 10 – dramatic weakness on the right side, bladder and bowel
incontinence. Dramatic mental changes but still as sweet as ever.
June 11 – to surgeon to have staples removed, CT ordered to rule out blood
clot. Scan clear– started on steroids again. Instructed to go to ER if symptoms
not better by 14.
June 14 – ER Jerry in a wheelchair as he can’t stand for long without falling
over. Lots of tests.
June 17 – Father’s Day – MRI done
June 18 – Fitted for radiation mask
June 19 – NO went over mri – tumor was now so large that radiation would be of
no use – given about 3 – 5 weeks. I take Jerry home. All the drs were confused,
perplexed. Why did the tumor that was quiet for so long turn so aggressive so
fast?
June 27 – Jerry dies in his sleep at 4:43 am. Our children are now without a
father. My heart is broken.
July 11 – Trying to get back to work. Actually make it out of the house by
1:30. Please respond.

Michelle, wife of Jerry for almost 19 years.
* It was important to Jerry that he help has many fellow brain tumor warriors.
Please let me know if anyone is interested in the results of his autopsy,
available in August. Or his mri’s.*







-----Original Message-----
From: Leah Longan [mailto:llongan@...]
Sent: Friday, July 06, 2007 2:11 PM
To: Oligo BT Listserv; Brain Tumor List; Brain Reserach Group; Brain - Temodar
Group
Subject: 1p 19q Deletions - question regarding temporal stability

My husband had the 1p 19q deletions when he had surgery in 2001 (oligo grade
II). The test has not been repeated on tissue from his latest 2007 surgery
(oligo grade III). The NIH stated that the test should be repeated on the new
tissue since "just because he had the deletions in 2001, doesn't mean he has the
deletions now". When I inquired at Hopkins about having the test repeated, Dr.
Burger conveyed (through the oncologist) that "if he had the deletions in 2001,
he will still have them, and there is no need to repeat the test on the new
tissue".



Obviously, these are conflicting points of view and I am seeking
clarification from anyone who can shed some light.



Thanks much,



Leah, w/o Tony (64), seizure 12/95, diagnosed low grade tumor, left frontal
lobe,
watch and wait for five years, slight growth 1/01, visited Duke (Friedman's)
and Hopkins (Brem) 3/01. PET scan 3/01. Surgery on 6/6/01 at Hopkins.
Pathology report indicated pure oligodendroglioma. Serial scans show cloudiness
around cavity area. NS now says this is residual tumor rather than swelling
since it is
not reducing over time. Continue with watch and wait. Slight growth 3/06.
Surgery 6/07.

Transformation to AOIII. Trying to decide on treatment.
Hershey, Pa. USA









: Shattuck Family
:(413)455-4888
:(WWW.POETRY.COM)
:www.survivingbraincancer.com
:www.oligodendroglioma@...


---------------------------------
Park yourself in front of a world of choices in alternative vehicles.
Visit the Yahoo! Auto Green Center.

[Non-text portions of this message have been removed]