Grade 3, an anaplastic astrocytoma

Girl2010 said:

You have what my 19 year old
You have what my 19 year old brother has as well. He is in full swing with the radiation and chemo... he has problems with his right side, and his tumor is inoperable. Have you tried any clinical trials? We are currently searching options for that...

Fusionera said:

Grade 3, an anaplastic astrocytoma
Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

be473 said:

Beating the odds
Hi Janet,
Don't know if this helps, but I have a story of survival way beyond their prognosis!
My husband was diagnosed in 2000 with a AAgrade3. He had it removed and had radiotherapy. He began Chemo (IV) but had to stop, as he had a really bad reaction to it. (Really bad!) Then he was completely tumour free for 5 years. Then 5 months after our son was born it came back. Couldn't operate, so they treated it with a different type of Radiotherapy, a one off... this was not so great, as it grew very quickly. (In hindsight I think they were thinking it was going Grade 4, talking about it moving to other parts of the brain) His original tumour was 7.5cm, and the reoccurrence got to I think from memory about 3cm. After the radiotherapy was a bust, he was put on a 2 year course of Oral Chemo (Tremador) to "control the growth" and attempt to shrink the tumour. After 7 months it disappeared completely, and has been gone ever since (kissing my ear for luck). He has 6 monthly MRI's, but life is as normal. He has suffered a stroke due to a side effect of the second radio therapy. This caused some issues with vision, but other than that you would never know that he was sick. He is currently working and studying to gain a diploma. I am very proud of him, he has a great attitude. So much so that I am writing a book about him, because I believe that his story is one that can inspire others in the same situation.
Two complimentary treatments that we both believe saved his life are Kinesiology and Reike. We did everything the Dr's said and a little bit more... they can't explain it, but who cares. He's here, and that's all that matters!

Hope this is helpful!

momsworld said:

Dear alutiiqmom
Hi there, my 13 yr old daughter has been diagnosed with AA3 also. She was 12 when she was diagnosed. We found her tumor only after I demanded a ct scan from her pcp. She had surgery 4 days after. 4 days after that she had her 2nd surgery to remove tumor that they couldnt get to at the first surgery. Once her incision was healed she went through 35 radiation treatments and was taking Temodar. That was july 2010. In Sept 2010 she had her 1st MRI and there was signs of new growth. She had her 3rd surgery. At that point, her doctors told us that there was nothing more that they could do and to enjoy my time with her. I told them to go to -ell. I took all her records and left. She now goes to the jimmy fund clinic/dana farber in boston mass, she is on a 5 drug regimen costisting of 2 oral chemos that she takes everyday and IV avastin every other week. She has been cancer free for 7 months. I do know of a clinical trial that someone we know is on, it is an injection of an HPV virus that is injected into the tumor. So far his tumor has shrunk by 50%. We also are christians and believe that God is walking with us through this journey. I want you to know that you are not alone and if you EVER need to talk or vent, I am here for you. God bless you and your daughter

alutiiqmom said:

Did you find any trials
Hi:

I am just beginning a search for trials, were you successful in finding one?

momsworld said:

hi
Hi,
We see a Dr. Nathan Robison and Dr Flemming (a fellow). Everyone at the Jimmy fund is so nice. We could not ask for a better place to be. I have also considered MD Anderson, but there is someone I know who's son has AA3 and they went to MD for a 2nd opinion and they said that he is getting the same treatment at JFC as he would there. Dana Farber/JFC are up to date on treatments. Boston Childrens hosp/Dana Farber has been voted #1 in the country for 2011. Good luck, I will pray for you all and I would love to keep in touch

triad said:

support
I'm Marc and new to the CSN as of today, I wondered if anyone knows of support groups in Chicago area? I'm going through a lot of confusion and borderline depression and it seems like most people who are well don't get it?

momsworld said:

hi
Hi,
We see a Dr. Nathan Robison and Dr Flemming (a fellow). Everyone at the Jimmy fund is so nice. We could not ask for a better place to be. I have also considered MD Anderson, but there is someone I know who's son has AA3 and they went to MD for a 2nd opinion and they said that he is getting the same treatment at JFC as he would there. Dana Farber/JFC are up to date on treatments. Boston Childrens hosp/Dana Farber has been voted #1 in the country for 2011. Good luck, I will pray for you all and I would love to keep in touch

cancerfreeinhope said:

I had just about the same
I had just about the same set-up. Grade 3, went to MD Anderson had surgery,6 weeks of radiation, 13 months of Temodar,lost 30 lbs. That was in July 2003, this July was my 5 years cancer free.. I am back at work, the only thing that I have noticed is that I'm more tired than I was before.

During radiation they told me that one in a thousand would lose their hair permenently. I was the one. So now I have to wear a hair piece. If I was a guy I wouldn't worry about it, but I scared one of my son's friend one night when I wasn't wearing a hat and decided to buy a hair piece.

Six months post-op. I had a Grand Mal Seizure and ended up in ICU for a couple of days. Now I take Depokote daily and have it under control.

What Dr. do you see at MD Anderson? I love that hospital, every person that we have met have been so nice and helpful. The only thing I don'at like is it's 6 hours from where live.
That's a long drive.

scai said:

Hi everyone, my name is
Hi everyone, my name is Steffanee and I was diagnosed in June 2011 with an Anaplastic Astrocytoma at age 19. Going through radiation and oral chemo (Temodar) currently, next MRI is on August 22, then I'll start six months of a 5/28 cycle of twice the dose of Temodar in September.

I presented with a seizure as I was getting ready to leave class at my community college (thank goodness I was talking to my friend, if it had happened five minutes later I'd have been behind the wheel of my car), the did a CT scan at the ER and it came back abnormal, so they did an MRI and found what they called multiple lesions on my brain, the largest being located in the left frontal lobe. They told me it was either MS or a brain tumor, most likely MS because of the multiple areas. I was put on anti-seizures (Keppra, no it doesn't make me grouchy, haven't had a seizure since) and had an appointments with the neurosurgeon the next day (I think normally they send you to a neurologist but when they showed him the scans he told them to send me to her so...). They did a lumbar puncture to test my spinal fluid for MS markers, but it came back negative. So it was a brain tumor! But most likely low grade, she assured me, because the borders between the mass and healthy cells was really well defined and it didn't show any enhancing when they added the contrast. They didn't have the technology here in Idaho to complete the surgery to the best the surgery could be completed, so I was recommended to Swedish Medical Center in Seattle to have it removed. My surgery was on June 8th and they were able to remove it 100%, but the pathology came back 70% grade II and 30% grade III, so they're treating it as if it's all a grade III, very aggressively. They also decided to treat a spot on the right side that appears brighter than the others on the MRI so they're treating that side with radiation also, as well as the pathway in between the right and left sides.

Mostly I just wanted to share my story with you guys and get some networking going with other survivors/family members. I'll keep you posted on my progress!