CSN Login
Members Online: 20

AA2 is really Glioblastoma

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi everyone:

I have not logged on for awhile. Sarah had a good MRI on February 15. It was stable, there was no change or progression. Now, we are in Houston, we went to MD Anderson on March 5. They did their own pathology on her tumor. They told us they think her tumor is a Glioblastoma and not AA3. It was horrific. Sarah burst out in tears and my husband and I were speechless. I still feel numb. We went there for a second opinion and to have a back up plan in the event of a reoccurrence. They said her treatment has been appropriate so far, but they are suprised that she is already on Avastin. Has this happened to anyone else? We are trying to stay faithful and hopeful, but still reeling in shock. I continue to pray for all of you. May God Bless you all.

Edna

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Oops, that was a typo. Sarah has been being treated for AA3, not AA2.

connsteele
Posts: 232
Joined: May 2011

I am so sorry to hear about the recent report. As for the Avastin question: when we first transferred our son from Virginia to Ohio, the very first visit we had with his new NO included discussion about the possibility of starting Avastin then. At that point, David had completed his radiation and concurrent Temodar regimen in VA. But then, at his next visit, his NO said he'd like to put David on the 5/28 Temodar because he didn't want to give up on a drug so soon.

So David had four rounds of the 5/28 Temodar, but had tumor progression. Next was one cycle of the CCNU/procarbazine with the idea that Avastin would be "in the back pocket" if needed. Well, his last MRI was bad...tumor doubled in size in just two months, so now he is on Avastin.

I've heard it said that Avastin is the drug of last resort, with only clinical trials after that. Is that what they said at MD Anderson?

While the news at MDA may be hard to hear, it's got to be good news that her MRIs are stable. Let's hope and pray that it remains the same, or even better the next. Hugs and prayers to you.
Connie
m/o of David
dx 4-13-11 AA3, now AA4

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I am shocked! I am so sorry! I think it is a good thing that she has been on an aggressive regimen from the beginning. I am glad her MRI is stable. Remember some people have survived +20 years with GBMs. I have hope that your little girl is going to beat all the odds.
The chemo combo has kept the tumor stable, so I would be surprise if anyone would change it. You might have to consider a clinical trial sooner than anticipated.

Knowledge is power and the news of the GBM can make you more prepared to fight the disease.... but sometimes I wonder if the ignorance of not knowing is more merciful. My sister had a lesion on a MRI in 2005 (her arm was having numbness): she was told it was a viral inflammation from mononucleosis. She followed up a year later with the neurologist: again no change. He told her to have a good life and not to come back. In 2011 she has a seizure. The lesion is bigger: it is and was AA3.

It would have been easier in 2005 to operate, to have radiation on a smaller area. But we lived carefree for 6 years, not confronted to a gruesome reality. That is why sometimes I think that ignorance is merciful.

I am with you on this board, prepared to follow your daughter's health. Post of any developments, improvements. I will always to my best to research new treatments and offer you support.

Julia

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

One more thing:

Do you know if the tumor stained from the EFGRVIII variant that would make her a candidate for the vaccine? I don't think there are recruiting right now but lets keep an eye on the phase II CDX-110 vaccine:

Phase II Study of CDX-110 in Patients With Glioblastoma Multiforme (ACT III)
This study is ongoing, but not recruiting participants.

First Received on April 10, 2007. Last Updated on November 15, 2010 History of Changes
Sponsor: Celldex Therapeutics
Information provided by: Celldex Therapeutics
ClinicalTrials.gov Identifier: NCT00458601
Purpose
This study is designed to evaluate the clinical activity of CDX-110 vaccination when given with standard of care treatment (maintenance temozolomide therapy). Study treatment will be given until disease progression and patients will be followed for long-term survival information. Efficacy will be measured by the progression-free survival status at 5.5 months from the date of first dose.

Condition Intervention Phase
Malignant Glioma
Drug: CDX-110 with GM-CSF
Drug: temozolomide
Phase II

Study Type: Interventional
Study Design: Allocation: Non-Randomized
Endpoint Classification: Safety/Efficacy Study
Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Treatment
Official Title: A Phase II Study of CDX-110 With Radiation and Temozolomide in Patients With Newly Diagnosed Glioblastoma Multiforme

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia:

We just got home to Alaska last night late. I appreciate your knowledge. We are still in the "baredly coping" mode. Today, I need to let Seattle know of this new found information. I am feeling frustrated because I have asked for the gene deletion information that Ben mentions below and our doctor in Seattle said it is not important for her treatment right now. I wonder if that will still be the case?
Tomorrow, Sarah has her infusion so we will keep going and also trying to research options. We have also begun sending her records to UCSF Pediatric Oncology and they want to do a case study on her and will tell us what they think. I did ask them about the vaccination research but was told at the time that you had to have your original surgery in San Francisco, but the doctor was going to check on if Sarah might still fit in somehow. I am sure they will want to know our knew found out information and perhaps do their own pathology. This illness is such a nightmare! I pray for each and every one of you. God Bless you all today. Read Hebrew 10:35-36 and keep up the good fight!
Love, Edna

connsteele
Posts: 232
Joined: May 2011

Alutiiqmon
For what it's worth: Previously, I had asked our son's NO about having our son's tumor tested for the gene deletion and he said that the info gained is used more for research purposes and also is useful more in determining treatment options for Olig and not AAs.
Connie

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Hello, I just read your response for the Molecular Genetic Study, please elaborate more on your physicians response as this being more research. My doctor is with Roger Maris Cancer Center, Johh Hopkins and Mayo Clinic, this study was determined as a vital part of being diagnoised and survival. As explained to me, having this deletion was key factor in treatment and longevity. Even those patients with partial deletions do better than those patients who have no deletions. My chemo Doc is Pediatric Oncologist, and my rad doc has published numerous articles. My Molecular Genetic Study was done at John Hopkins who has seen many brain tumors and successes. In reading others with this type of cancer, deletions were mentioned as number one determining factor for survival. This test is extremely expensive, so it is not done for everyone.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Ben :

Thanks for your quick response. I just spoke to the doctor at MD Anderson and they also said the gene deletions were for the olio tumors. She told me they look at 3 things for thr glioblastomas: P53 (which tells if the tmir is made of astrocytes); IDH1 mutation (which they are now using as an indicator of survivability) and the proliferation index ( which tells how the cells are dividing). These markers are used for prognosis and not chemo. She also said they do not have markers for chemo with the Glioblastoma tumors. She said they need to make more progress. Yes they do !

I appreciate your information on John Hopkins. We need to think about what we are doing going forward for our daughter. What do you have ? How old are you ? Sarah is 18. God bless you -

Edna

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Edna, I am 27 diagnoised September 2011 with Oligodendroglioma Anaplastic Astrocytoma Grade III, with 1p19q deletions. I had 99% of my left frontal tumor removed, no sign of tumor on MRI right out of surgery. I have not suffered all the side effects and problems listed by others on this site. My Doc's believe in prevention before it happens. Like when I started chemo/radiation- 20 minutes before taking Temodar, I was to take a motion sickness pill, and this was done several hours after a meal and right before bedtime. I did not suffer nausea the whole six weeks. I did however have a mohawk,where the rad beams hit, but my hair has grown back. One month after treatment- MRI showed no tumor present. I started six month of maintenance - 5 days of Temodar (increased dosage) and
28 days off. I also take something to prevent nausea- which I have not suffered from. Just
finished my second treatment, everything went great, blood work is good, platelets a low, but that is expected. I worked everyday, been ice fishing, hanging with friends, and just living life. First time I met with Pediatric Oncology, he said, " Ben do you know why you are here, it's because you have a tumor", I responded " I HAD A TUMOR", Doc was impressed, and stated great attitude, lets get to work. Roger Maris Cancer Center has seen patients 18 plus years out, that had these type of tumors. Apparently the tumor capital of the USA is in Cassleton, ND, more brain tumors come from that area, than any other area in US.... I'm from Northern Minnesota!

Now was your daughter's tumor removed or partially removed? Does she stay active,
friends hanging out? Have that FIGHT FIGHT FIGHT ATTITUDE :o)

Prayers are with you!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Ben:

Sarah's tumor was partially removed, 80-90%, left frontal lobe. It is a different tumor from yours. She is doing really well right now. She seems to be getting more energy and her speech is really improved. Many people who see her out and about do not realize she is so ill. Her hair is coming back beautifully. She is a fighter, no doubt. She wears a bracelet thats says, "Fight Like a Girl." At the end of April she will be done with her maintenance phase of chemo. Then we will see how she does.
I am pretty worried about the grade of her tumor. Seattle said AA3, MD said, grade 4. But, the fact that she is stable is a good sign. I need to just look at her and not worry about statistics.
She does speech, Occupational therapy and physical therapy so she has not had a lot of free time. She needs to do more with friends and hopefully she can soon. Her friends do not come around as much since her chemo started going. At first they were around, now her family is her main support group. We are making lots of fun summer plans and hope to keep her busy doing many fun things. I know some people from International Falls, MN. Are you from there? I also have a friend from ND. How did you hear that was the capital of tumors? I wonder why.
God Bless you Ben. Keep fighting.

connsteele
Posts: 232
Joined: May 2011

I really can't say more about the whole gene deletion topio other than what I've read on this list and from our son's NO said. If I understand it correctly, having the gene deletions does indicate a better response to treatment and increased longevity, but mainly for oligs. I guess my question is: does it also make a difference in the type of treatment that one has? Or is it just used for prognosis?

I'm glad you are doing well and that you are encouraged by the fact that you have the gene deletions.

mighty6
Posts: 47
Joined: Sep 2011

Dear Edna,

Sarah has gone so far in the treatment so she might not qualify for any newly dx trial now. I hope she never needs it, but just in case, here is more for the EGFRViii vaccine trial for recurrent GBM:
http://clinicaltrials.gov/ct2/show/NCT01498328?term=cdx-110&rank=2
CDX-110 phase II for recurrent GBM does not require surgery, it actually requires Avastin.

I think Avastin did buy Sarah more time, and you are using those time wisely, by seeking for second opinion, treatment. etc. The key is to attack this disease from multiple front. of course, it is a tough task for everyone to decide what to use additionally...

Yes, let's all keep up the good fight!

-- Jane

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Jane:
Thanks for the information. The amount of information and the knowledge you have to keep track of is mind boggling. I always hope and pray we are making the best decisions on this path. God Bless you and yours Jane.

Edna

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Connie:

It did sound like Avastin was the last drug to try. It sounds like MD has many clinical trials going that a patient cannot participate in IF they have already had Avastin. The doctor said many of their trials have that stipulation so she was not sure how Sarah would fit in. MD did say they keep the Avastin for last. We have heard a couple of times that these neuro-oncologists treat the pediatric cases more aggressive to give them their best chance and the youth can tolerate the medicine somewhat better.
I am very confused about how they look at Sarah. Alaska and Texas think she is Adult Oncology and Seattle and San Fran think she is pediatric due to when the tumor presented itself. I hope these large hospitals continue to network and share to the benefit of our cancer patients. God Bless you and David. Enjoy every moment.
Love, Edna

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Sorry to hear about the pathology report. Both are considered the same- Glio - Tumor, AA3 is the type. Has your daughter had a Molecular Genetic Study- to determine deletion 1p19q-these deletions tell how effective Chemo/radiaton will be on the tumor. What percentage of the tumor has been removed. My surgeon right out of the OR classified my tumor as a Glioblastoma- sent to pathology at Mayo and then onto John Hopkins for studies. I had 99% of my left frontal tumor removed, no tumor present after surgery on MRI, but started 6 weeks of radiation/Chemo(temador), one month out clean, and started 5 days on/28 days off
as precaution. This type tumor has fingers, and can move to the other side of the brain.
So far, everything is great, back to work, doing everything I did before. Keep a positive attitude, don't give up and live each day to the fullest.

Please read post on Seizures, Seizures, Seizures by Cindy - mentions choosing doctors!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Edna.

I hated to read about MD Anderson's opinion on Sarah's pathology. I cannot imagine the shock and grief that caused to you and your husband and especially to Sarah. I felt physically sick when you described how she burst into tears. I'm so, so very sorry that she and you and your husband had to go through this.

I am so drained by what we are going through with David that I am having trouble writing....I'm so tired and emotional. But I think that the important thing to hold onto with Sarah is that she is doing good. She is going forward with her therapy and improving. That's the right direction to be going. She is going in the right direction, regardless of what name they assign to the cancer.

Apparently the different doctors and hospitals can have different opinions on diagnosis. But who knows which one is correct? If both reputable, big, specialty places have different opinions on what kind of tumor Sarah has....how do you know for sure which place is correct? Seattle could just as easily be right as MD Anderson. I'm glad that no matter who is right, Sarah has been getting the correct treatment for either/or.

It still is hard for me to accept how much lack of agreement there is between treatments, and diagnosis, with the best of the best in the fight against brain cancer. I guess that's because none of these doctors or centers KNOW for sure. They are all just doing the best that they can. Sometimes I think that that's a positive thing to remember. They don't know timeframes or the future...they just are making a guess based on statistics. And Sarah is not a statistic...she is a young, strong girl with a lot of fighting spirit. And she serves a big, mighty God who is more than capable of turning everything around. We just do not know what the future holds.

I am continuing to hold Sarah up in prayer. I want your sweet young daughter to beat this, with all of my heart!

Love and blessings,
Cindy

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network