Grade 3, an anaplastic astrocytoma

AngelRay2008 said:

I had AA III also
Hi Janet, I was diagnosed in October 2008 with antiplastic astrocytoma grade III after 2 seizures. I had partial surgery; they removed as much as possible without causing me to have a stroke. After surgery, I had 35 treatments of radiation combined with Temodar capsules. I had no ill effects except for loss of energy. I have many Angels who are constantly praying for me and helping me. God has richly blessed me through my having cancer. Needless to say, it's been very scary for me, my family and friends. I began Avastin in May 09 with infusions about twice/month. I think the Avastin is the drug that really helped me; it blocks the blood flow to the tumor. All of my MRI reports have been stable. One MRI last Oct (2010) showed some recurrence of very small spots, but they had told me to expect some recurrence. Now, I take Temodar capsules at night (80 mg) and Avastin IV infusions every 3 weeks. My local oncologist consults with the Brain Tumor Center at Duke University, and I feel that I'm receiving the greatest care. I do believe that this is all part of God's plan for my life, and that He will carry me through and I will soon be able to enjoy ALL the things I did when I was completely healthy. I'm already amazing the doctors! They didn't expect me to do this well when I was first diagnosed, but I was in pretty decent physical shape when I got sick and I have a strong faith and positive attitude. So, keep the faith and check out Caring Bridge; my site is http://www.caringbridge.org/visit/ritahunt. You may want to set up one for your nephew. Lots of well wishes to you and your family; when cancer strikes, the entire family needs care. Pray without ceasing.

Rita

Thank you for your post Rita
I'm a 45 year old mom diagnosed February 8th with AA Grade 3 and undergoing similar treatment now. Feels great to hear people are being cured. I so want to get back to work and life as normal and feel good again. God has been amazing and my side effects are so few and less than most, but still really need to get back to work and some normalcy. I keep thinking I should be using this time off more productively, but just have no energy - is this normal. I'v had 20 radiation treatments now and 13 to go. Chemo at night by pill. I am also walking miracle and amazing doctors that I don't have more permanent damage. Isn't God good? Any suggestions on maintaining or gaining energy?

KMPonder said:

My hubby responded extremely
My hubby responded extremely well to his radiation (33 treatments) and Temodar for his three inoperable AAs diagnosed in August 2009. He remains doing well from those, but he unfortunately developed a GBM on the optic chiasm we are now treating/fighting.

Has your doctor suggested Ritalin for energy? When hubby returned to teaching post radiation in January 2010, the Ritalin really gave him the energy he needed to get through the day. You've got to rest when you can, but this really did make a noticeable improvement.

Chemo fatigue is something I didn't realize was so serious until we went down this path. It's real, and sometimes rest is the only way to combat it.

I wish you complete healing. Even as my husband endures his third malignant type tumor at age 45, God is most definitely still good!

Ritalin
My radiation oncologist actually talked about putting me on ritalin. We were trying just walking more and being more active naturally, but that is not giving more energy. I guess I was trying to avoid another medication, but maybe I should try it. I'm so tired all the time. I would love to be awake more and be more active.

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. :-)

Thank you for your encouragement.
I am a 23 yr old who was diagnosed with a lemon sized, G3 Astrocytoma in the Fall of 2010. Since then, I have undergone surgery at MD Anderson and 6 weeks of radiation. I am doing great now and gaining my strength and independence back. My last scans looked good, but I have not heard too many long term positive outcomes. I am also a graduate student working on my Master's of Physician Assistant studies. I will begin school again in a few months, and am eager to see if the surgery and radiation have affected my cognitive abilities. Thanks for sharing your positive story! I will be receiving MRIs every other month to make sure there is no more growth.

nuezdallas said:

My Mom was Diagnosed last year Sep.14,2010
Recently my mom was diagnosed with AA3. My senior year in high school is as good as it gets.. As long as my mom makes it through. I spent months in the hospital.. missing school.. 100$ in gas. My family is strong. That wait of a 7 hour surgery... killed me... i was worried the whole time. I dont know that much about it. But i am doing a project for my anatomy class on this very disease... I waled relay. for the very first time. My life has change dramatically. I would really like to ask all of you questions on how it happened? My moms was out of NO where.
You can contact me at nuez.dallas@hotmail.com
Relay for life really opened my eyes... i know i am not alone on this... I pray for you all.
I go home early from school... to help with my dad. He stays home 24/7. Please keep me updated everyone. Its a scary thing.. im young but ive learned so much responsibility.

Keep Faith

Dallas:)

Your mom's dignosis of AA3
Hi Dallas,

I was diagnosed on Feb. 8th. Don't lose hope. According to my oncologist, this disease is treatable and can be curable. I just finished 34 radiation treatments and my four tumors are decreasing even before they expected them too. I have three kids, 14, 22, and 26. Our faith is what gets us through all of this. Lean on that. Actively read a devotional or your Bible, or a bible study or do youth group. You'll need that support - as well as your mom and dad. For your mom, I would highly recommend Barbara Johnson's book, Stick a Geranium in my Cranium - laughter and humor are key. But also recognize, that there will just be bad days and good days. Now that my I'm on the back side of the treatments, I feel much better. I just started weight training at a gym at my oncologist recommendation and it is making me feel much better. And, I'm getting some strength back in my legs - the steroids just about took it all away. As for how or why she got it, you'll never know is what they are telling me. I only had a few mild symptoms for two weeks before I was violently ill and being admitted to the hospital.

Hang in there and stay strong and positive,

Shelly

Kimberlyann72 said:

This thread is full of hope
Thank you for that. All I read on the internet is so negative, the statistics etc. it makes me want to quit reading the internet or doing searches. My father was diagnosed with grade III astrocytoma had total resection (I realize some cells are always left) he is undergoing 6 weeks of chemo/radiation (temodar). My dad is 69, he is doing well other than being a bit unsteady on his feet since starting the chemo/radiation. I need hope, I have faith in God. I am scared though. I love him more than my own life.

Kimberlyann72
I urge you to please stay off the internet except this site. Much of what you will find is out of date and/or worst case scenarios. When my sister was diagnosed with AA3 I nearly drove myself crazy reading all sorts of grim stuff about AA3. Then I found this site and I finally had hope. My sister went through 6 weeks of radiation which was tough. Then she had about 8 months of chemo (also temador) which wasn't as bad, and in less than a year's time she was in remission!! Of course we can't possibly know how long that remission will last but it's been over a year now since her MRI's came back clear and I am thankful for every day. Don't lose hope.

alexof25th said:

Grade 3 anaplastic astrocytome
im in the US Army Infantry and was on my secound deployment when i started having all this pain in my head where i couldnt get off my bed in Iraq thought it was just migraines. i was sent to a bigger Fire base where this Colonel saw me with my head in my hands and asked me a few questions and gave me a cat scan. April 2009 Im told at the age of 25 in Iraq that i have a tumor so i was medevac out to Fort sam houston where i eventually had surgery at Md Anderson and was walking 4 hours after brain surgery smoking outside a cancer treatment center figured i already had cancer. From the moment i found out it was a Anaplastic Astrocytoma Grade 3 and what my chances were i was determined not to make this more difficult on family and friends. I have since completed radiation and chemo and now get MRI's every 3 months. I finally found someone through her mother a breast cancer survivor that i love and loves me. And for the first time im a little scared because I love her so much and dont want her to hurt. im about to retire from the Army and stay in Texas.

Best of luck!!
I am retired USAR..I did have 8 years active duty but nothing like your experience.
I take my wife to MD Anderson..always want her MRI's to go off at Mays Clinic...but lately, they've all been 3rd floor main building...
Man, I like that big waiting room over at Mays..
My wife has GBM4...
Be careful about that radiation...
If the report indicates "flairs" or "treatment effects" tell the doc to watch that close!
I never dreamed radiation treatments could do so much to a person..but it really sent my wife for a loop about a year after the treatments were over....
Best of luck to you!
I think the real secret to health are those mashed potatoes with the peals grounded up in them in the MD Anderson chow hall.

Wow, situation sounds like mine almost 9 years ago. My husband was diagnosed with an AA grade 3 in his frontal and temporal lobes 3 days after my son turned 3. Here we are almost nine years later and he is still with us. I am truly convince he will outlive me. He has his issues that affect mostly his quality of life but is still alive and well don't let statistics bother you. My hubby was 30 when diagnosed as well.

Lifeistooshort said:

Wow, situation sounds like mine almost 9 years ago. My husband was diagnosed with an AA grade 3 in his frontal and temporal lobes 3 days after my son turned 3. Here we are almost nine years later and he is still with us. I am truly convince he will outlive me. He has his issues that affect mostly his quality of life but is still alive and well don't let statistics bother you. My hubby was 30 when diagnosed as well.

Hope for all
Thanks. My wife has just been dxed with same. It was stated to me as a stage 3 glioma (same). Since I have training it couldn't be hidden from me and the neurosurgeon comment on that fact since I asked many pointed professional questions. The worst part is not knowing how long she will be around.

My wifes is mainly in the Left parietal lobe with a small intrusion into the temporal lobe and R hemisphere. Operation is scheduled for Friday for a resection. Estimated removal is 70% due to the depth. All higher cognitive function is absent along with limited movement on the RHS.

KMPonder said:

My hubby responded extremely
My hubby responded extremely well to his radiation (33 treatments) and Temodar for his three inoperable AAs diagnosed in August 2009. He remains doing well from those, but he unfortunately developed a GBM on the optic chiasm we are now treating/fighting.

Has your doctor suggested Ritalin for energy? When hubby returned to teaching post radiation in January 2010, the Ritalin really gave him the energy he needed to get through the day. You've got to rest when you can, but this really did make a noticeable improvement.

Chemo fatigue is something I didn't realize was so serious until we went down this path. It's real, and sometimes rest is the only way to combat it.

I wish you complete healing. Even as my husband endures his third malignant type tumor at age 45, God is most definitely still good!

How are you and your husband
Hi Kim,

This is Jeannie I. It has been several months now since we last spoke over the phone. How is your husband doing?

Richard is doing well. Last MRI still showed no signs of the tumor decreasing but thank God it hasn't grown either.
After our next MRI on Monday we are looked into going to MD Anderson. We already have the appointment scheduled.

If I don't hear from you I will try sending you an email.

Hope all is well.

God bless.

alutiiqmom said:

In need of hope
Hi:

My 17 year old daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. She had surgery, but they could not remove it all. She then had 6 weeks of radiation with chemo. We are just now beginning the maintenance phase of chemo, consisting of an infustion 2x a month and Temodar for five days of the month.

Her most recent MRI had some concerning areas, so they aren't sure if the treatment is working. Does anyone know any promising experimental treatments? Also, can you share any scary MRI's that actually turned out ok?

We are Christian believers and know that God has his hand on us and our girl, but it sure feels scary at times.

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