No deletion of 1p 19q

4lindsay · Regular Joined: 12 Apr 2008 Posts: 12 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 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/

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~
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~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
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4lindsay · Regular Joined: 12 Apr 2008 Posts: 12 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

4lindsay · Regular Joined: 12 Apr 2008 Posts: 12 Location: Seattle

Well, Lindsay had her 9 month post surgery MRI yesterday which showed a rather large white area in the old tumor site. They said it could be scar tissue (which wasn't there 6 months ago), could be fluid, or could be tumor regrowth. The next step is to do a spectroscopy that detects the molecular structure of the cells in question to determine exactly what it is and whether or not any form of treatment is necessary. She has no symptoms (seizures, blurred vision or headaches). It seems strange that scar tissue would build so much now when it wasn't there 3 months after surgery. It also seems strange if it is a tumor again so quickly since hers was a grade 2 (slow growing) Oligodendroglioma. This will all be answered in 2 weeks when we meet with the brain surgeon after the scan but in the mean time, all I have is questions!

For those of you that have dealt with regrowth, was it determined by an MRI alone or with more in depth testing?

brainman · Posted: Thu Nov 06, 2008 2:56 am Post subject: Re: No deletion of 1p 19q

Hi 4lindsay. It has been a long time. I am sorry Lindsay's cancer as recurred so soon. It is very strange for a glioma grade II to recur so quickly.

In my case, I had symptoms when it recurred. That was followed by a MRI and then a biopsy.

You and your daughter a in my thoughts and prayers.

I am my next MRI later today Confused

_________________
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/

Mama 2 2 · Posted: Thu Nov 06, 2008 7:55 pm Post subject: Re: No deletion of 1p 19q

Hello 4lindsay,

We had been advised in the past that the scar tissue can take months to show up on a scan as it continues to build for some time.

We had also been told that they thought something they saw was scar tissue in the past which turned out to be tumour regrowth. It's hard to know. We had an MRI and they felt it was scarring and did no further testing (were going to wait the 6mos for the next scan to see any change), but only two months later he had a seizure. While they still said scar tissue can cause a seizure, they did another scan right away which confirmed it was tumour regrowth.

It would be surprising to hear that it had grown back so fast if it is truly a grade II, though I have heard that the grading process is not an exact science either. I certainly hope you can find some answers soon, and I wish you as much peace and strength as you can muster in the meantime.

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

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

4lindsay · Regular Joined: 12 Apr 2008 Posts: 12 Location: Seattle

See below...

4lindsay · Regular Joined: 12 Apr 2008 Posts: 12 Location: Seattle

My how quickly things change...got a call today from our radiologists office and after several doctors reviewing her MRI's, they agree that it is tumor regrowth and feel it's necessary to hit it aggresively with radiation. We're all meeting on Tues. to discuss the plan of attack.

Right now, my husband and I are pretty much in shock with the news but Lindsay seems to be handling it OK and says, "Mom, everything's going to be fine!" She just celebrated her 23rd birthday last week and has many plans for her future.

My concern is that it has changed grades but I don't know how we'd find that out if they're not going to do a biopsy. At this point, we are asking God for a miracle and thank all who will remember her in their prayers.

One more question...if you can only radiate the brain once, wouldn't it make more sense to try Chemo first or is there usually a reason for opting to do radiation? Her only form of treatment so far has been the resection.

Dianne~Lindsay's Mom

Mama 2 2 · Posted: Sun Nov 09, 2008 2:05 am Post subject: Re: No deletion of 1p 19q

Hello Dianne,

My guess is, since your daughter's tumour does not have the 1p/19q deletion, they would expect the tumour to respond better to radiation than chemo. My husband had 25 treatments of radiation following his second surgery, which he felt generally good through. A little tired, but otherwise fine.

Even though his tumour did not have the deletion, he still had a positive response to the first chemo he was on initially. His tumour eventually built up a resistency to that chemo, but he is on another, and we recently found he had a postive response to that as well - though he is taking a complimentary treatment which is supposed to be enhancing the effectivness of the chemo - we don't know if it's one, the other, or both that is working, but we don't care - we'll take the good results and keep doing what we're doing!

It's unfortunate that radiation is a 'one shot deal', but for many people it can have great success. I hope your daughter is one of those people.

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

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

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