No deletion of 1p 19q

4lindsay · New User Joined: 12 Apr 2008 Posts: 2 Location: Seattle

Our 22 yr. old daughter presented with seizures Feb. 8 and surgery was performed the next day to remove 2 tumors. The path report says grade 2 oligodendroglioma with both 1p and 19q intact with no deletion. Do you happen to know what effect that has on the likelyhood of regrowth or the treatment options if it does?

Thanks for any input.

brainman · Posted: Sat Apr 12, 2008 5:20 pm Post subject: Re: No deletion of 1p 19q

4lindsay, I am very sorry to hear about your daughter's brain cancer. It is not a certainty but a great possibility that at some point her cancer will recur. The 1p/19q gene deletion does not change that one way or the other. The 1p/19q gene deletion only predicts how well her cancer will respond to chemotherapy. Since she does not have that deletion, she is slightly less likely to have a positive response to chemo... it is not a major difference.

Your daughter's diagnosis is certainly is life altering but it is not a death sentence. If you read my story, you will see that I was diagnosed with a glioma grade II back in 1992 and I am still here Wink

. It did recur in 2005 and I am STILL hanging on Very Happy

.

How is your daughter coping with all of this? Maybe she should join us? Just a suggestion. At this point, she might be overwhelmed.

Your daughter is in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

phoenixtears · Regular Joined: 05 Apr 2008 Posts: 17

There is some focused research you may want to
investigate specific to brain tumors.

A 20 hour time lapse video is presented showing the effects
of a compound interacting with and killing cancer cells.

You can find the research by googling

sethgroup.org

for information regarding the research....

my prayers are with you and your daughter.

phoenixtears
_________________
You never know....until you find out!

artaran · Posted: Mon Apr 14, 2008 12:01 pm Post subject: Re: No deletion of 1p 19q

I know how horrible this has been for you. My 23 year old son was diagnosed with a Grade III Glioma (astrocytoma) last year. Let me assure you the Grade II classification is more important for positive prognosis than the 1p 19q deletion. Her youth is a positive indicator as well. As Brainman indicated these tumor tend to recur, but this may not happen for many years. Take a deep breath. During that time studies of this dreaded disease will continue.

My understanding is usually no further treatment is given after surgery for a Grade II Glioma because chemo and radiation can produce negative long lasting side effects and waiting to treat the tumor upon recurrence does not decrease survivability.

Is your daughter being treated at a respected brain tumor center? If not I suggest you get a second opinion at one on both her biopsy and possible future treatment plans.

Also I suggest you read as much about this dreadful disease as possible. Not just from Internet cites either, read books as well. Knowledge is power.

My heart aches for you. I wish you and your daughter the very best of luck and care.

Mama 2 2 · Posted: Mon Apr 14, 2008 7:26 pm Post subject: Re: No deletion of 1p 19q

Hello 4lindsay,

My heart goes out to you and your family. You can read our whole story in the link in my signature block as well, but the short of it is my husband also has a grade 2 glioma with the 1p/19q in tact. We found it because of a seizure, and he had his first surgery just over 6yrs ago (he was 25). We were told at the time it was not likely to come back, but it did. It took 3 1/2yrs for it to return, and they did another surgery. This time the followed up with radiation - they chose this because of the 1p/19q in tact they felt it would be more effective than chemo. This time we were told it would definately come back, but the radiation should slow the regrowth so that it wouldn't come back for 10yrs +.

Fast forward two yrs from his last surgery (1 1/2yrs after radiation finished) and he had another seizure. The tumour had returned again, but was very small still. He was on chemo for the past 6 months, but fortunately the chemo worked (even without the deletions) and as of last month they are now giving him a break from the chemo.

Fortunately, maybe because of his age and general good health otherwise, but he bounced back extremely well from each surgery, and handled the radiation and chemo incredibly well. At the time we had only been married for just under 2 yrs, and now we have two beautiful little girls (3yrs & 6mos - the baby born just two days before finding out the tumour was back and he had to go on chemo). I guess this is just to let you know that even though it can be devestating news, life can be pretty great otherwise. It sure has given us new perspective on things, and we have changed our lifestyle to ensure we spend the most time we can with the people we love and doing things we enjoy.

Speaking of things I love, my baby is getting tired of playing with Daddy now and needs a little Mama time, so I should go!

Best of luck to you and your daughter, my thoughts are definately with you and you have found a great resource for support.

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

4lindsay · New User Joined: 12 Apr 2008 Posts: 2 Location: Seattle

Thank you all for your input. We're doing OK at the moment...everything seems pretty "normal." Getting ready to schedule that first MRI following surgery but the docs say it's difficult initially to tell the difference between scar tissue and regrowth.

I found it interesting Mama 2 2, that your husband's tumor came back so quickly following radiation. They did tell us that if we opted for radiation, it would hold off a regrowth for approx. 10 years like you said. I think these things are so individual that they have a mind of their own!

We had a crazy Feb-Mar...daughter's ordeal Feb. 8th, my sister died of breast cancer 2 weeks later, then 3 weeks after that my father-in-law died unexpectedly.

I emailed this link to my daughter so hopefully she'll check it out and ask questions of her own.

Thanks again for the support. I love the info on here!

Take care,
Dianne

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