Astrocytoma Grade III-Survivor

Ellenbh1 said:

Anaplastic astrocytoma survivor

Hi,

I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors.

 

p.s.

Right front lobe

 

Thank you 

all the best to you. 

I'm asking if any has had a reoccurance of tumor. I was treated  with 6 month of temador/radiation   Was just told that after 6+ years of tumor has returned. Has anyone else had reoccurrance what drug did as treatment for it on reoccurrance.  They want to change chemo drug temador to avastin.

Any experiences with Avastin?

heyrabbit said:

hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

Hi there

i am been diagnosed a glioma on frontal left lobe after i had a seizure on 7th november 2016. they have removed it with surgery on 30th november. After that they call me and told that i had a astricytoma grade 3. now preparing for chemo and radiation and have fear in mind as well as i have my wife and two kids in australia with me and my father and sister are living overseas. Could you please help me by telling anything about this process?

Thanks

heyrabbit said:

hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

hi how is your health now ? are you following up with MRI . please reply on prajwal.rajith@gmail.com

ajd1234 said:

please help
Hi, my niece has AA, the doctors are not giving us a lot of time.
She was diagnosed 4 months ago , had radiation done, chemo. Please help if anyone has a child with non-operatable AA grade 3.
May G-d help all who are suffering with any illness. thank you, angela

‹ Childhood Medullablastoma Is No Treatment an option? ›

how is your Niece?

bain0906@gmail.com

RCOLUCCI said:

IT'S ENCOURAGING TO HEAR
IT'S ENCOURAGING TO HEAR THAT YOU ARE A TEN YEAR SURVIVOR. MY DAUGHTER WAS DIAGNOSED WITH A GRADE 2 ASTROCYTOMA IN THE LEFT FRONTAL LOBE ALSO A LITTLE OVER 3 YEARS AGO. SHE HAD A CRANEOTOMY AND MRI'S AT FIRST EVERY 3 MONTHS THEN 6 MONTHS UNTIL DECEMBER OF LAST YEAR IT GREW BACK.THEN ANOTHER SURGERY IN APRIL OF THIS YEAR. IT WAS UPGRADED TO STAGE 3 SO THEY DECIDED TO DO RADIATION THEN CHEMO. SHE IS CURRENTLY DOING CHEMO (TEMADOR) FOR 7 DAYS EACH MONTH UNTIL JUNE OR SO...DOCTORS RECOMMENDED 12 TO 14 MONTHS OF TREATMENT. DOCTORS GAVE HER A STATISTICAL 3 TO 5 YEAR SURVIVAL. SHE HAS 2 SONS 2YRS AND 5YRS. DO YOU HAVE KIDS AND DID YOU HAVE A SIMILAR SITUATION? WERE YOU GIVEN THE SAME SURVIVAL RATE? DO YOU HAVE TO TAKE ANTI-SIEZURE MEDS? DID OR DO YOU HAVE ANY COGNITIVE AFFECTS?

My 26 yo son recently DX w AA grade 3, total resection left frontal lobe in Dec 2017. Still some word finding recognition issues, especially bad after drinking (he keeps reminding me he is 26 and wants to be normal) Just started radiation, finished 10th dose of 30 treatments of radiation then to start chemo (temodar) for 6 cycles. So far no side effects from radiation. Just wondering how you are doing years later.

jaearly said:

newly DX AA grade 3

My 26 yo son recently DX w AA grade 3, total resection left frontal lobe in Dec 2017. Still some word finding recognition issues, especially bad after drinking (he keeps reminding me he is 26 and wants to be normal) Just started radiation, finished 10th dose of 30 treatments of radiation then to start chemo (temodar) for 6 cycles. So far no side effects from radiation. Just wondering how you are doing years later.

My son was also 26 when he was diagnosed (on my birthday) July 31, 2017.  I was just about to start chemo for breast cancer July 4, when we got the call that he had a seizure and they found a mass.  It was initially thought to be a grade 2 tumor, but by the time of surgery on July 27th the MRI showed that it had changed and they saw the enhanced area in the middle.  The biopsy confirmed the grade 3.

He missed 3 months of work and stayed with us while we drove him to treatments daily.  I was able to suffer through my first chemo in a portable bed in the ICU after his surgery.  We took care of each other for the remaining 2 months.  He had 6 weeks of chemo and radiation, a month rest and 6 cycles of a much stronger chemo.

He has since returned to work and his apartment 3 hours away.  He needs his job to keep his healthcare.  He is now seeing doctors at John Hopkins near him.  He will finish his last chemo next month.  His has an MRI every 2 months and they have been clear.  He has to work during chemo because he is out of sick leave.  He takes medicine for nausea.  His platelets have been dropping too low and he has to postpone each treatment a few days to recover.

My daughter was initially diagnosed jan 2014 when she had just turned 25, with a Right frontal lobe tumor.    She had surgery the next day to remove most of it and then we sought out a 2nd opinion at Mayo Clinic.  She opted to do radiation there and then PCV chemo.  Due to radiation nectrosis, she had a second craniotomy early Oct 2014 and continued chemo until 12/10/14 when she was told she was stable and no longer needed to take chemo.  The tumor at the time was called an Oligoastrocytoma grade III, but later the WHO changed it to Anaplastic Astrocytoma III.  It is IDH positive.She continued with follow up MRI's regularly until Novembe 2017 (almost 3 years) until that one showed some changes.  We went back to Mayo and 2 days later, she had her 3rd craniotomy.  At her surgical follow up, it was determined that she should start temozolamide 5/28 cycles.  After 6 cycles, there was increased enhancement of one are of the rear of the resection cavity.  one more cycle was recommended with follow up this past Wednesday, June 20th.  There appears now to be increased blood flow which is indicative to possible tumor progression.  Chemo is being changed to Lomustine, every 6 weeks.  She has not had any neuro deficits and remains to be helthy otherwise.  She does suffer from nerve pain along the incision site of her craniotomies.  We are looking at considering a second opinion at M-D Anderson.  Anyone have any thoughts? 

14 years ago our son had the grade 3 tumor removed from the right front of his brain. It was the size of a golf ball. He did well for many years, but then we noticed his decision-making took a terrible turn. He lost his house, his job, then his car, and we had to quickly take over and become his POA. We had him move in with us and took him to his neurologist for an overdue appointment. He is cancer free. But, the scar tissue is attaching to his brain and the radiation/chemo treatments have now taken a toll on his thinking correctly. He has short-term memory loss. weakness, and a terrible case of confabulation. He is unable to drive, or hold a job. We were able to get him on disability. His seizure medicine of course is something he has to take every day for the rest of his life, he is now also on antidepressants. God has been good to us that he is alive and mostly healthy. Sometimes he seems like a 12-year-old, but he is 43 years old. we keep him busy with volunteering activities. I think the hardest thing to deal with is the confabulation. The storytelling can be outrageous. I do think at times he hallucinates. We've looked for a counselor for him in our area, but most will not take his Medicaid, A few just did not work out. A psychiatrist did nothing for him. I guess I could go on and on about the things we have been trying to deal with and if we are handling them properly. It is hard to find support locally. I'm glad I found this forum.

Hi bear222, I’ve have an Oligodendroglioma tumors. It started out as a massive tumor in my left frontal lobe. I don’t actually remember anything about going into the hospital, but my family had to go through two separate surgeries surgery’s and a coma for 5 days. This was four years ago and my family is still very touchy on the situation. I am now on my 4th treatment that’s radiation and more than likely chemotherapy after. Just knew and was wondering about your opinion on the situation.