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Oli-Grade 3- with 1p19 Deletions

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Hello,
Just wanted everyone to know, I am still cancer free, doctors called me boring at the
last MRI. Informed that they want to follow me for another year, but do not expect any
recurrance. YES - my family is joyfully celebrating the great news. I had the best
doctors at all three facilities- Roger Maris, John Hopkins and Mayo. These facilities
have patients that are 10,20 and 30 years, with no recurrance. That is a great track
record. I do not have any side effect, defects or neuro problems. I am physical fine,
good as new, working full time and enjoying my new lease on life.

Benjamin

mom_in_CT
Posts: 19
Joined: Jun 2011

Benjamin:

That is awesome news! What treatment did you receive?

My daughter has an oglio grade 3 and nothing so far has been able to stop new growth. She had surgery in Feb. 2009, 9 months of Temador, and 6 weeks of radiation. She has been on Avastin and Lomustine since January 2012 and the last MRI showed new growth -- crossing over to the other side. We're now trying Avastin and Carboplatin.

debbie

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Debbie,
Hi, I am Benjamin's mother. Benjamin had 99% of his tumor resected, surgeons flown in from
Mayo. Treatment plan was aggressive, according to plans set by all three of his treating
facilities- team effort. 6 weeks of chemo (temodar) and 6 weeks radiation. He took anti-nausea
medication 1 hour before his temodar, at night before bed, Dr. recommended this, so he would
have no side effects. It worked, he was never tired, sick or suffered in any way. Once the six
weeks were completed, he started a higher dosage of Temodar, 5 day every 28, along with anti-
nausea medication, for 6 months. Benjamin, also has MRI's every three month, so far he has clean line.

Benjamin resection removed 99% of his left frontal lobe, the 1% left was killed during
aggressive treatment. Benjamin also, has the 1p19q deletions, which allows chemo and radiation
to kill off all bad (cancer) cells and good cells around the resection. Without these deletions
or even just one, the treatments are not effective. Oli-Grade three has fingerling, like you
stated, your daughter's crossed to the otherside. We were informed of this during initial
counsel with Drs., that this is what they were going to prevent for Benjamin, that was why
the aggressive treatment plan. It has worked on numerous 20-30+ years survivors.

Dr's, also stated " Benjamin has all the positives, 1. age, 2. 1p19q deletions 3. excellent
surgery clean resection 4. aggressive treatment plan 5. healthy 6. no family history 7. no
physical problems 8. support system ."

Debbie, does your daughter have the deletions, was her tumor removed totally or was
there a little left behind? Treatment plan, was it aggressive enough? The National Brain
Tumor Society as articles explaining treatment options and disscusses the importance of 1p19q
deletions for longevity. In my other posting, I put in a list of reliable websites to visit,
recommended by Benjamin's doctors.

On thing I have noticed in reading various posting on this site, every area of the country
has different treatment programs or doctors who have their own agenda's. We were lucky to
get the top facilities in the USA and they worked together. I read, where so many are
fighting insurance companies for treatment, many facilities are teaching and research facilities.
My girlfriend, died because the facility was trying new medications on her cancer, drugs were
useless and she suffered harshly, it was not until she asked to go elsewhere (Mayo), that she found
out Dr's, were experimenting on her type of (colon) cancer, not necessarily curing the cancer.

Have you asked for a second opinion? Start over fresh, see what other options are available
to your precious daughter. We have a saying here - "It's like the roll of the dice how you
will be treated for cancer". Watching my child go through this is the most heart wrenching, difficult
life experience I ever had, the fear of loosing my son, and watching him suffer. I have cried
rivers, and even though we have been blessed with a great outcome, I still worry. It has drawn our family closer, and we now enjoy the little things in life. I was such a shock to us, when we
got the call our son was being airlifted to Fargo, with a mass on his brain. Benjamin had suffered
a severe headache and then gran mal seizure. No other symptoms were present. We've been fortunate
to be given the top 1% doctors in treating brain tumors in this country.

Please keep us posted on how your battle goes against this wicked cancer- and remember never,
never give up- FIGHT< FIGHT< FIGHT!

(((Hugs)))

Carol

mom_in_CT
Posts: 19
Joined: Jun 2011

Thanks for your response.

Feb. 2009 -- The surgeon at Smilow/Yale was not able to remove all of Kim's tumor -- it's in her right frontal lobe. I don't remember if she has both of those deletions -- I'll have to look back through her records. When they did the biopsy, it was classified as an oglio II/III.

She was on Temador for nine months, and with each scan, the area looked smaller.

Her scans were good for about nine months, and then new growth was spotted. 6 weeks of radiation was the next step. We went to Dana Farber for a second opinion before she began this treatment. We met with a NO and the radiation oncologict who both agreed with the treatment plan. It was very hard to tell in the scans following radiation what was going on -- we were told that there was a 50% chance that the radiation worked and a 50% chance that it didn't. She had scans every 2 - 3 months thereafter and in December 2011 new growth was spotted.

This past January, the tumor affected her entire left side. She lost the peripheral vision in her left eye, was not able to lift her arm or move her hand, and was dragging her left leg. She was able to walk with an ankle brace and a cane. Despite the fact that her NO didn't think there was any point in going for physical therapy, she did. She worked with an occupational therapist and a physical therapist. It was a lot of hard work, but she has regained some use on that side. The gym that we belong to donated a personal trainer's time to her and she has been going to the gym 3 times a week since June. She hasn't used the ankle brace or the cane since July. She also started driving short distances again and she is still working full time. She is struggling physically but thankfully has no other symptoms.

So she has been on bi-weekly IV treatments of Avastin since January and Lomustine every 6 weeks. She has been having trouble with her white blood cell counts and platellets being too low and treatment has had to be postponed several times. Her latest scan in September showed new growth. So now she's on bi-weekly Avastin and Carboplatin every 4 weeks.

How many times do you go for a second opinion? How do you know what to do?

debbie

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Hi Debbie,
WOW, your daughter has really been through the mill in treatment. I wish that all
physicians treating brain cancer would attack aggressively from the start. I have heard
more brain cancer people, say their physician's do the wait and see or just chemo. I have
yet to read where using only one treatment has benefited the patient.
I really hope your daughter will beable to continue fighting until there are newer
forms of treatment available for recurrances/regrowths. There is always new research being
done on OLI-Grade 3, which sound promising in controlling tumor growth, especially this
type that has fingerlings. It's the fingerlings that need to be destroyed, and that is
usually done with radiation and chemo combination. But, we as mother's have a habit of
listening to our doctor's without a challenge.
Wishing you all the best, and keep us informed, may your days be blessed with
health and happiness.

Carol

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Glad to hear your great news!!!!! I have not been on here for several days, and am trying to see how everyone is!!! I am so happy for you and your family!!

Michelle
Mobile, Al
AA3 DX: 10/20/09
(almost three years and 1 month with no recurrence!)

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