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Astrocytoma Grade III-Survivor

Quilmes's picture
Quilmes
Posts: 7
Joined: Mar 2008

If any one needs help please let me know, I went through brain cancer and have lived. My calling is to help others survive also.

Jose

maggie65
Posts: 4
Joined: Feb 2013

Jose, I write to you in hopes your still a survivor of anaplastic astrocytoma grade 3 and can somehow help us shed some light to this nightmare we have been enduring since October last year, well to begin my husband and I both first true love since the ages 14 and 13 years old we both each had children in our previous marriages and divorced we just had celebrated our 2nd anniversary in October 13, 2012, my husband was diagnosed with a brain tumor October 25, 2012 just bearly a week later this brain tumor is called Anaplastic Astrocytoma Grade 3 after he left home to work plumbing in the city that never sleeps Manhattan the big apple felt what is called a charlie horse on his left leg as he drove his company vehicle truck the charlie horse quickly shot up his left side causing several seizures he was rushed by ambulance to The New York Presbyterian Cornell Hospital located on E. 68th Street near York Av four blocks from Hunter College, we have'nt had a piece of mind since nor any days of rest since this began, I been by my husband hospital bed side since this began spending 18 days, 7 days, 5 days, 4 days and most recently 12 days and then rehab in Baker Pavilion 17 floor at NYPCH we where told beforehand that my husband had a fighting chance being he was young, healthy and strong, didnt have any bad habits as he quit smoking cold turkey but after spinal tabs, blood analysis, MRI's CT Sacns. sonograms clinical trails of 30 days of radiation and 45 days of chemo therapy pills called temodar it has been a roller coaster ride to hell for us because let me say since the tumor we where told so many positives options then suddenly his tumor which is inoperable we where told has rapidly grown and he is now experiencing alot of dificulty spasms to his left arm, pain feeling sunburn sensation to his face, arm and leg, his allegic to morphine so his given all kinds and  types of pain nacotics medications to somehow ease his pain but this is causing him problems with bowel movments constipation and he takes nerve muscle relaxer, along with steroids and insuline as his blood glugose rise due to the intake of steroids. My husband is only 45 years old and because he married late in his 30's he has a son of 11 years old and a daughter only 10. I just became a grandmother, I have two sons and would love if my husband can recover from this illness and we can live at piece but thats just my faith and hope which I pray each day while in tears. I hope for a miracle and Im sure many on this broad will agree for their love ones to be cured. God bless those who are going through this hurtle of difficulties and somehow have lived to talk about it. Please if anyone else here has experience a miracle to this horrible disease please kindly share as we all here need some hope of faith. Take care

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

Hello,

   I just read your story, my heart goes out to you all.  In reading about your husbands condition, I was wondering

have you gotten a second opinion, from say John Hopkins, being you are so close.  My son, was diagnoised with

Oli Grade III, left frontal lobe, 1p19q deletions and 99% of his tumor removed.  6 weeks radiaton, along with

chemo at the same time.  Benjamin, has had no side effects from any of the treatment.  An has been Cancer

free since 9/2011.  When initial chemo, radiation was completed, he started a 6 month of a higher dose.  Still,

no side effects, doctor had him take anti-nausea pill one hour before Temodor and do this at bedtime.  His story is

on this site if you want to follow.  Benjamin suffered a severe headached, and then a grand mal seizure in the

the emergency room.   He was in surgery right away, doctors from Mayo removed 99%, sent sample tissue

to Mayo, John Hopkins, and he is being treated at Roger Maris Cancer Center.  They all have been wonderful

to work with, but he also, had three major facilities working together.  Second opinions are not bad, just

comforting.  Remember to stay strong and fight with everything you have.  This site is great for helping one

understand what is happening and where you may be headed in the future.

(((Hugs)))

Carol

Khayzee0210
Posts: 1
Joined: May 2013

Hi.. I'm kristine, the doctor told us earlier that my brother have a astrocytoma and he don't know yet what grade is it. me and my family are so afraid for my brother. We don't know what to do. He already undergo in his second surgery to his head. But we don't know yet what exactly result to his test. i want to know also if it's normal after his operation, we can't talk to him normal. He tell story that we don't understand. We think he really depressed. we don't know yet what is the next medication they will do for my brother. Please help my family to pray for my brother. He just 30 years old to suffer to this kind of disease. Thank you

goshenfire72
Posts: 3
Joined: Jun 2013

I was diagnosed with a grade II-III astrocytoma on April 20 2013. I underwent surgery at the Cleveland Clinc on 5/22/2013, they removed "most" of the 3.5cm tumor. I am going back to cleveland in a couple of days for a folow up and game plan. I am hoping they hit me with everything they have! My wife and I have a 21 month old daughter and a baby due to be born in two and a half weeks!! I just want some positive stories to keep me motivated. I know I can beat this and help other people. My surgery was only two weeks ago and I feel great, back to normal! The surgeon could not get all of the tumor due to functional loss of my left hand during surgery, but its fine now. My tumor is on the right frontal lobe. I just want survival stories to keep me positive so I can keep y family positive as well.

sadinholland
Posts: 245
Joined: Apr 2011

My husband goes to Cleveland Clinic. We are very pleased with them.

goshenfire72
Posts: 3
Joined: Jun 2013

I am very pleased with Cleveland as well, these people know brain tumors well. Who are your husbands Doctors?

kullapa
Posts: 1
Joined: Jun 2013

Hello all;

I am an international  student living in Ohio. My best friend who I am living with is diagnosed with anaplastic astrocytoma grade III about three weeks ago. Our world collapsed and everything has been changed. We are quite depressed because we are away from home so there is just a handful of people to turn to. My friend is working as a postdoctoral researcher and she has about half year left to go. She had a breast cancer two years ago and finding out this nasty brain tumor is such a burden. I feel so derperate but I have to be strong for her.

 

We were told by the first hospital we went when she fell down that her tumor is inoperable. So we are trying to get a second opinion at University Hospital in Cleveland. Dr.Andrew Sloan, the Neurosurgeon, said he can do something with this tumor but we have to make sure it is not pressing on her speech center. Tomorrow we will go up there to have functional MRI. The major problem is that English is not her native language and we are very worry how good the data will be. Anyway I will be positive and keep expecting for miracles.

 

My friend is the sweetest girl I have ever met in my life. It never be easy to realize what she has to go through.

I am sure all of you are such a sweet and nice people. Thank you for sharing a precious opinoin and experience. I am one of your people. You are all in my prayer. I and my bestie will fight with all we have.

 

KC

goshenfire72
Posts: 3
Joined: Jun 2013

I would check with the Cleveland Clinic, it's right next door to the University Hospital. Cleveland Clinic has a team of surgeons, oncologists, radiologists, nurses etc. that do nothing but brain tumors, they do not deal with any other type of cancers. They have a tumor board meeting twice a week that consists of 40 doctors, NP's and RN's that reveiw and discuss every case. I have been very pleased with thier succsess and bed side mannors. Also Indiana University and Duke University have outstanding programs as well for brain tumors. I do think the University hospital is good as well. Since you are in cleveland I would most definetly check out the Cleveland Clinic, they are truly world class in brain cancer. I wish your friend much luck and will pray for her.

LAW1960
Posts: 4
Joined: Aug 2013

I am so sorry that your friend is going through this. My daughter is going through this too and she was treated in Boston MA at the Bringham and Womens Hospital affiliated with Dana Farber. They are wonderful there and she got the very best treatment. They have an intraoperable MRI there which is a wonderful thing to have during brain surgery. It helps with removing as much as possible that the naked eye can not see! She will be in my prayers. If I can give you any information as far as doctors in Boston, let me know...I will never forget them! Thankful for Boston. Be positive!

a09082038828's picture
a09082038828
Posts: 5
Joined: Jun 2013

Hi. Mi mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there.

Panday
Posts: 2
Joined: Sep 2013

Hi kabayan, hows your mother? im from philippines also my brother had the same case of your mother, may i know where they conduct the surgery of your mom? Paano ba kta makakausap? Sana kpg nabasa mo ung post na ito email mo q sa ronitiquia@gmail.Com my gusto lng ako itanong.. 

 

serenefhf's picture
serenefhf
Posts: 1
Joined: Jul 2013

How do you survive this? I went to do a research and I know that anaplastic astrocytoma haloves survival rates and can only live for 3-5 years.

 

what did you do to survive?

how long has it been since your diagnosis?

Ellenbh1's picture
Ellenbh1
Posts: 1
Joined: Sep 2013

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. Wink

 

p.s.

Right front lobe

 

Beck99's picture
Beck99
Posts: 2
Joined: Oct 2013

Ellenbh1- Your story is so encouraging!  Did you have a complete resection?  Who was your surgeon?  My husband is 45 and has always been a very fit guy. He also had a grand mal seizure in front of our kids. He was diagnosed with AA grade II with some III in the right frontal lobe. He had a 90% resection. The remaining portion is in his thalamus. He is being treated at MD Anderson. This all happened in March of this year. So scary but he is doing great and back to work. All the praise goes to God!!  Any info or advice would be appreciated. 

PaulyK
Posts: 2
Joined: Nov 2013

I'm new here too. My husband was disagnosed in March this year, grand mal seizures in 2011 wrongly dianosed as a stroke causing them. Surgery and raiotherapy and started chemo in August a scan then showed new growth outside the radiation area. Latest scan has been taken and we get the results on Monday it's going to be a very long weekend. My husband is 46 and we have a 4 year old. So good to hear of people with poitive stories.

PaulyK
Posts: 2
Joined: Nov 2013

I'm new here too. My husband was disagnosed in March this year, grand mal seizures in 2011 wrongly dianosed as a stroke causing them. Surgery and raiotherapy and started chemo in August a scan then showed new growth outside the radiation area. Latest scan has been taken and we get the results on Monday it's going to be a very long weekend. My husband is 46 and we have a 4 year old. So good to hear of people with poitive stories.

Magillicutty
Posts: 2
Joined: Mar 2013

I'm new to CSN, too.  I had been spending the majority of my time reviewing the American Brain Tumor Association website (ABTA).

I am glad to see a post that is recent, as many of them are dated.  My husband also has AA3- right frontal lobe.  We also became
aware of his tumor as a result of a Grand Mal seizure while he was behind the wheel.  Fortunately, we were stopped at a intersection
and I was able to dash around to the driver's side and stop the car.

All MRI's have been stable since starting intra-arterial carboplatins chemotherapy and Avastin infusion.  We've got 4 more months of
treatment to go.

Your post is a gift.

Thanks!
Magillicutty

dchow200
Posts: 2
Joined: Dec 2013

Hi Ellenbh1, or ALL,

Was your gemistocystic Astrocytoma?

What kind of diet are you eating?

What other medication other than doctors are you taking... such as green tea, or immunocal?

please send response to dchow200@gmail.com also, want to beat the time that doctors gave me, if I don't do anything to help myself then my time can be up as doctors set it...

Please provide any diet or treatment or supplements that can work.... I am google alot and getting more and more confused about what is good for me...

thank you, David

LAW1960
Posts: 4
Joined: Aug 2013

My 24 year old daughter was diagnosed with a brain tumor at the end of June in her front left lobe, she was having headaches for about 2 years and the doctors kept saying, allergies, migraines etc... and finally they did a CT scan which led to an MRI. She had surgery on July 17th in boston and was diagnosed  on August 1st with AA grade 3. She started her treatments on Sept. 3 which was yesterday. Radiation and Temador for 6 weeks and then a 4 week break and then aprox. 6 months of Temador 5/23 depending on the scans. They told us they got the entire tumor out in Boston and then when we got back to our home town, with many stressful insurance issues, we were told there was residual left. They finally got the treatments started which was stressful waiting for that to happen. My daughter Erica is an inspiration to all of us. She is so upbeat and positive. She started a blog and updates all that is happening. She has many wonderful friends and family supporters. I am always looking at survival stories and it helps me with the hope of her living a long happy life! I cry alot when I am not with her because I wish it was me instead of her but only God knows why this happens. She is trying to eat really healthy and I wanted her to drink an herbal tea called HHA 4 herb tea but the Dr.s say that she shouldn't have anything like that while on the treatments. She was looking and asking if there were any young people around her age going through the same thing so she could maybe talk to them. If anyone out there wants to reach out ...let me know and maybe you two can connect. I pray a lot and I am thinking positive in hopes that she will be able to say "I am a survivor". I pray for all of you and your families going through this trying time. Keep the faith and stay positive. Don't forget its okay to cry. If anyone has any information on the trials I see some people talking about can you give me that information. Is it hard to get on a trial? I dont' know much about it so if anyone has info that would be great. Thanks for listening...Erica's mom, Laurie

Panday
Posts: 2
Joined: Sep 2013

good day, my brother had tingling and numbness of his right side of the body, actually it was started from head and went down to his arm and feet he is hard to walk and move.. Last week we had MRI for him and the result was 1.large intradural/intramedullary tumor mass lession involving d medulla &upper cervical cord(c1,c2,3-4 cord level) w/ compression of d cerebelar tonsils. 2.astrocytoma is d main considration. how could we survive in this case? do you have any idea or people who has survive in this cases? And what is the treatment for that? Please help us.. 

tberg117
Posts: 1
Joined: Sep 2013

Hi  I am Todd,  I was just diagnosed with GBM  stage three  with an unoperable tumor.  starting Radiation and Chemo  sept 23 2013.  Radiation for 6 weeks,  Oral chemo for a yr.  I am very scared and dont know what to expect. Please give me the truth about what I can expect.  I am 55 yrs. Old  it all started july 26 2013. with a grand mall seizure.

mccindy
Posts: 82
Joined: Jun 2013

Hi Todd,

Where are you being seen for your tumor treatment? I'm concerned as to your diagnosis, as GBM is the grade IV variation of Astrocytoma.  Grade III would be an Anaplastic Astrocytoma.  I'm a bit concerned that you are not getting all the information you need.  There is a wide difference in treatment and prognosis between grade III and grade IV.  The best thing for you to do would be to get a second opinion at a major brain tumor center.  Depending on where you live there are many options:  Mayo in Rochester, MN; NOrthwestern in Chicago; Johns Hopkins out east; MD Anderson in TX.  I was originally told my tumor was inoperable and it turned out that it was not. 

dchow200
Posts: 2
Joined: Dec 2013

Please, how did you survive?

please also send email response to dchow200@gmail.com

Thank you, David

vald
Posts: 1
Joined: Oct 2013

Hi Jose,

How are you! I'm hoping you are in great health. I write you because my mom. She has astrocytoma 3/4 grade, she had surgery on June 25th and 6 weeks concurent radiation and chemo with temodar. She was prescribed 6 courses of aditional chemo, as well, but she refused to take it. Now they are 6 months since her surgery and the tings are looking worsening. There is may be new growth in tumor bed, althoug I'm hoping it is scar tissues.

Please, let me know what do you take? Any additional supplements or any diet?

 

Thank you!

Valeria

avenzor7
Posts: 3
Joined: Jan 2014

Hello everyone my name is Amy I'm 30 yrs old and just found out 2 days ago about my dx.  It all started 3mths ago when my whole left side went numb, I went to the ER thinking omg I am having a stroke at this age.   Well after an mri I found out I had a mass on my right frontal lobe approximately 3cm.  I had all the visible tumor removed on Dec 16.  After the awake crainiotomy  I was able to move my left side and the numbness was completely gone.   This was a great feeling because the surgeon had explained to us I might have the numbness for ever and also problems with movement since the tumor was so close to the motor function.  I started radiation  yesterday and will start chemo next week.   This journey has been by far the most difficult and scary one in my life.   It has also made me a stronger person. Trying to live one day at a time.   I've been very blessed because of my family and friends that have not left my side and most of all my love and faith for God has grown tremendously.   I must confess I am so happy I found this site.  Reading every one else's stories help because I know now that I'm not the only one fighting this battle.   I want to let everyone here know that I will be praying for all of us battling cancer.   For anyone that has gone through radiation and chemo, any pointers as to what to expect or what helped I would greatly appreciate any feed back. Thank you.  

edslas's picture
edslas
Posts: 19
Joined: Dec 2010

Avenzor,

There are several blogs out there were people detailed thier experience from Dx to survivorship. See mine, the liz army, or just goole for 'brain tumor blog. At Dx I found it very comforting to read about stories from people going through the same experience.

Best Wishes,

Ed

geeteebee
Posts: 1
Joined: Feb 2014

God bless you man.  I am 62 and my wife of 37 years has been diagnosed with a grade 3 astrocytoma.  We are in the early stages of treatment and I am very scared of what is coming at us as we head down the road to further treatment.  What advice would you give to a caregiver?

Thanks for your sharing,

 

Glen in NJ

BelindaDana
Posts: 4
Joined: Oct 2014

My best advice for a caregiver is to take care of yourself too. Easier said than done. Support groups are a great place to start.

BelindaDana
Posts: 4
Joined: Oct 2014

I wanted to share some words with everyone that my radiation oncologist said to me at my first appointment with him. He said that the hope for treatment is to take this disease from the place where it is an acute life-threatening disease to a place where it is a chronic health condition that needs routine monitoring.

Brain research is advancing at such a rapid rate that hopefully within our lifetimes, there will be a cure. I am fortunate to work in a large university/teaching hospital setting where I also received treatment and it is very encouraging to see all the research updates.

My tumor is inoperable and I was not eligible for many of the trial studies because there is not enough of the biopsy material left to carry out all the studies that are needed to find a fit into a trial study but I encourage everyone to talk about trial studies with your doctors.

Take care.

Dancingthrought...
Posts: 2
Joined: Nov 2014

Did you do chemotherapy or radiation? How do you feel about the natural pathetic medicine for treating this form of cancer? My mom has been diagnosed with this form of cancer. Please let me know. 

BelindaDana
Posts: 4
Joined: Oct 2014

Hi,

I did 6 1/2 weeks of radiation and chemotherapy. I then had a month off and started six months of chemotherapy. This was a much stronger dose and I took it for five days and was off for twenty-three days. I tolerated the first 6 1/2 weeks of treatment well. The stronger chemo made me sick. I am allergic to many of the anti-nausea medications and relied on homeopathic remedies - peppermint, ginger and some meditation. My medical oncologist preferred that his patients take the medication in the morning but I took mine at night and that seemed to help. The doctor explained to me that there are two schools of thinking - those who think that if you are going to be sick, you may as well be sick during the day while you are awake and not disrupt your sleep by taking the medicine at night and having to be up through the night while you are sick. The other school of thought is that you may as well take the medication at night and try to sleep through the worst of it. That seemed to work for me. I was only sick the first night that I took it as compared to being sick most of the day when I took it in the morning. I took the week off each month when I took the chemo so that I could rest as much as possible.

Good luck to your mother. Please let me know if I can answer any other questions. I am over a year into this so I may have some insight that may be useful to you and your mother.

Belinda

bruce_c
Posts: 2
Joined: Dec 2014

Hi all 

I was diagnosed with AA in Sept. 2009 (cerebellum & brain stem, so inoperable). The initial prognosis was that I had about a year to live (at age 38). I had 6 weeks of radiation therapy early on. Until early this year (2014) the MRIs showed negligible growth.

I have been taking several supplements, mainly from the Life Extension Foundation. (inc. Curcumin, Boswella, Reishi, Resveratrol)

I have also been vegetarian (mostly plant-based too) for most of my life.

Early this year, the tumour started growing slowly again. I have had 3 rounds of Temozolomide so far, which have been a little tiring, but fairly well tolerated.

I have recently been moving to a completely plant-based diet, following information from NutritionFacts.org. I highly recommend the videos there. There's nothing like a "terminal illness" to get you motivated to change your diet Wink

Anyway, we'll see how things have changed in a couple of months after my next MRI.

Good luck everyone!

 

Girl_Least_Likely
Posts: 1
Joined: Dec 2014

After a year of Temodar (Chemo) and six weeks of Proton Therapy (Radiation) I have decided to start alternative treatment. I am on TM to reduce the copper levels of my blood, have Vitamin C IV infusions weekly and take a lot of herbal suppliments to strengthen my immunse system. I alsp drink Structured water. It will be 3 years in March since my diagnosis. It's encouraging to see other SURVIVORS of what feels like a death sentence at first! Wondering if anyone else has tried naturopathy or alternative medicines and had sucess?

bruce_c
Posts: 2
Joined: Dec 2014

Hi Girl_Least_Likely

I haven't tried naturopathy. I've been feeling quite a bit better from following the (Whole Food Plant Based) recommendations from NutritionFacts.org, so I suggest you try that out. The guy who does the videos (Dr. Michael Greger) is a GP who has been learning from the latest nutrition research papers for years. His site is not trying to make any money, and does not accept donations from companies. I have learnt SO much in a few weeks. It is not just what you don't eat, but what you do as well. He shows which foods are best for lots of ailments, including various cancers, based on nutrition studies.
Here is an example: which are the top anticancer vegetables?

http://nutritionfacts.org/video/1-anticancer-vegetable/

Good luck!

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