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Grade 3, an anaplastic astrocytoma

JanetLMcCoy
Posts: 6
Joined: May 2008

My nephew-in-law was diagnosed with an anaplastic astrocytoma, Grade 3, last December. He had surgery at MD Anderson Cancer Center, recovery, rehab (very little was required) and 6 weeks of radiation

He's recovered great, is back at work and driving.

I'm hoping to find someone who has beaten the doctor's timeline diagnosis of 3-5 years. My nephew-in-law is 30 years old and has a wife (my niece) and three-year-old son.

Their very strong Christian faith, great doctors and wonderful family and church family have gotten them through the last 11 months.

Please respond if you are willing to talk about your experiences.

Thank you.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

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

Jeannie20
Posts: 5
Joined: May 2011

Hello momsworld.

Thank you for sharing that with us. I am so happy to hear your daughter is doing well. My boyfriend and I are Christians too and we know that prayer goes a long way.
In September of 2010 my boyfriend Richard was diagnosed with AA3. Because of where it is (occipital lobe) the tumor is inoperable or at least a high risk. What surgery isn't however?

He did Gamma Knife sugery, full cycle of radiation (the most he can do in a lifetime), is taking temodar and avastin. The tumor is stable it hasn't grown, but it hasn't shrunken either. His doctor says he may never shrink at all. He feels great but we are wondering if there is something else we should be doing.

I have done research on MD Anderson and Duke. Do you or does anyone else know where we should go to next?

Please help.

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

Thank you for sharing your journey. I need to hear your encouraging words. Also, knowing where your daughter is being treated is helpful. We will do her second MRI in July and I am trying to remain positive but I am afraid.
Do you mind if I ask your daughter's doctors name? Or for more information on the trial?

I hope there is not new growth in July, but if there is I am sure we will do the same as you and take her records and go to a new facility, maybe even the same one and get our girl healed!

Many blessings to you and your daughter - seven months cancer free! Praise be to god! I wish you the best in this life. I hope we can stay in touch and learn from each other. God Bless you and your daughter.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

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
Posts: 1
Joined: Jul 2011

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?

PBJ Austin
Posts: 347
Joined: Mar 2009

If you ever need to chat this forum is a great sounding board as well as a wonderful resource for info. We are always here for you.

I did a quick google for support in Chicago and I found this. I hope it helps.

http://www.gildasclubchicago.org/home.jsp/

http://www.cancer.northwestern.edu/public/connect/support_groups/index.cfm

http://www.reshealth.org/yourhealth/support_groups_details.cfm?subject=Cancer

annstillhere
Posts: 7
Joined: Jul 2011

there is a great group in the NW SUBURBS CALLED "THE WELLNESS PLACE" AVTIVITIES AND ALL KIND OF SUPPORT. if you need more info let me know

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

Delnor hospital in Geneva has a 'Brain Tumor Resource and Support Group'
www.delnor.com/supportgroups

I agree, most people say, don't worry-you will be ok. Well, that's probably not true, but it is good advice. Your life has taken a turn beyond your control, but you can make the best of it.

You can read my story at:
edslas.blogspot.com

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

Hi Momsworld:

We had our July MRI and it was good! Thank God and all of the prayers. There was no growth and no change, so we are sticking to our plan as of now. The Temodar is dreadful though. We are finishing up a five day course and it kicks my daughters butt. thanks for the informaiton on the docs and hospital, I am going to keep that tucked away. We are going to look for some support groups this fall because I think my daughter needs to meet some other teenagers battling cancer. It wouldn't hurt me either. :) Many blessings to you and your daugher.

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

Hi Momsworld:
Could we email each other? My email is edna@camai.com. I know you replied before and told me your daughters medicine, but I can't find that post. We finally had too good MRI's but now they want to take our daughter off of the Temodar and we are concerned and confused. How long was your daughter on Temodar? What does she take now? Thanks for sharing and offering supporting. God Bless you and your daughter.

scai
Posts: 1
Joined: Jul 2011

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! :)

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

dear Scai, when I started reading your story it sounded like u were talking about me except for MS . They told me I have AA In June 2011 also. Had open brain biopsy on Nov 9, 2011. they started me on radiation and temodar dec 21, 2011 to feb 3 , then i restarted temodar mar 3. for 5 days every 28 day cycle. Since i have had 2 more MRI s and my tumor has grown and a lot of swelling going on. They just started me on Chemo IV and ill continue the temodar as usual. they r treating it aggressively. when this first started, the day i passed out with a seizure , i had just got off school bus (i was the driver) and i drove home and then it happened. i too was lucky. mine is right frontal temporal lobe, deep down in crease. they say it is inoperable. in the beginning they did check me for incephlitus. but anyway just wanted to see how how things r now. our stories sound so much a like. hope u r doing ok

DLB21
Posts: 2
Joined: Mar 2008

My son is Janet McCoy's nephew. He was diagnosed with an Astrocytoma in December 2008. He underwent 14 hours of brain surgery at MD Anderson in Houston. As his parents, we were scared to death. The doctors have to tell you all of the things that may happen. I am happy to report that he came through the surgery in great shape. He talked to us on the phone during the surgery as he was awake for about 8 of the 14 hours. Most of the tumor was graded as Type 2 but there were some Type 3 cells so the doctors recommended radiation. He went through that and was the classic case. The early weeks went quite good with a little loss of appetite. The last two weeks were rough. He was extremely tired and the treatments left him very nausious. He had a little problem with his balance but physical therapy did wonders for that. As I write this 3 years and 7 months after surgery, I am happy to report that he has done marvelously well. He and his wife have had a second child, who is now 21 months old. My son was able to go back to work shortly after his radiation. His health was wonderful before the tumor and has been pretty much the same since then. He now has MRI's every 4 months. We are all on pins and needles the week of the test but, thank God, each MRI has shown no change since the surgery. He leads a very normal life except for that one week every four months. On that week, we are all brought back to the fact that we are mortals. But our faith carries us on.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

This is wonderful news, as I spend more time on here and researching this, I hear more and more positive stories. God is working his miracles

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

Amen to God's great works! This is a very very hard journey. But, I believe. We must all believe and pray especially during hard times.

Candice T
Posts: 3
Joined: Aug 2011

Ya know, the Lord uses the horrible things in life to purify and bring us closer to Him. I'm glad I now have a testimony to how amazingly wonderful He is. Your son will be in my prayers!

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Janet I have AA3 also, would love to talk to someone about it, maybe we could find a way to talk. Many blessing to u and ure family. Faith is what gets me through, plus my 15 year old daughter. she is my angel and my lifeline

honeycomb1968's picture
honeycomb1968
Posts: 11
Joined: Mar 2003

please read my profile and keep the faith

Candice T
Posts: 3
Joined: Aug 2011

I am a grade 3 astrocytoma survivor. I was diagnosed with grade 2 astrocytoma when I was 17. After two surgeries, the latter at Duke University Brain Tumor Center, a 95 percent resection, I was given a pretty good prognosis with no treatment and the hoping that what was left would become dorment. Three years later in 2003 it started growing back. After another surgery it was found to be malignant and grade three. Dr. Alan Freidman (sp?) removed all he could see, but 6 wks of radiation and one year of chemo, a pill form, followed. I am a person of strong faith in Christ and kept a very positive attitude throughout the whole process. I believe that and the treatment are the reason I am still alive today. There is hope even if statistics say otherwise! God bless you all and you will be in my prayers. :)

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

Hi,

My daughter was diagnosed with Anaplastic Astrocytoma 3 at 17. They resected 89-90%, then she had radiation. We are currently undergoing chemo for one year also. So, I really appreciate you sharing your story to help others. It gives me hope to read of others who are living on and surviving this illness. I know that our faith is really carrying us and I am grateful for our believe in God everyday. God Bless you. Enjoy every moment of your life. Happy Thanksgiving.
Edna

LadyDevilDog's picture
LadyDevilDog
Posts: 6
Joined: Mar 2012

My son is 10 and was diagnosed with AA3 on March 6, 2012. His father and I are scared out of wits. We enrolled him in a protocol where he will receive the chemo drug voronistat while he takes his 6 weeks of radiation. Once that is finished, he will be receiving both Avastin and Temozolimide. We caught his tumor with a simple eye exam. I still remember the horror in mind when that doctor referred us to the ER and then suddenly we were on an ambulance to the children's hospital in St. Pete. Is it normal to feel like this is just an ugly, ugly dream? Dad handed over full custody without so much as a whimper and I have to call him and take Ethan by to see him because he doesn't reach out. Are there other parents out there that have experienced this? A loved one pulling away? I am so overwhelmed and just trying to hold things together and believe that the statistics out there are outdated and simply can't be right. He's so young and should have a chance to live. Were you angry a lot in the beginning of her battle? How did you make it through to this point? I am so hungry for some degree of hope. I keep telling myself that this trial and the radiation is going to help but I still pray every day and plead with God for my son's life. Praying there is some way I can trade places with him. I've led a full life and his is just beginning. He's so brave and doesn't complain (well, hardly ever..he hates taking the handful of steroids every day). When was your daughter dianosed? How is she doing now? I could really use some hope..any hope.

Maria

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

Hi Maria:
My duaghter was diagnosed in February 2011. She was diagnosed with AA3. She had 6 weeks of radiation coupled with the Temodar. She had a port installed in May 2012 and we have been doing chemo since then. She had an infusion every other week. Her chemo is Avastin and Irinetecan. During the last infusion of the months she takes the Temodar for five days at home. She is doing good right now. Her MRI's are stable,they show no progression. I have felt a lot of anger, but my husband did. I have mostly felt great sadness for my daughter and anxiety about the future. My faith has grown tremendously. I watch Joyce Meyer every week day. I try and read positive scriptures. Claim victory on this cancer! There are many people who live for a long time. Do not believe the statistics. Every person is different. Believe that all things work together for your good and God has good plans for you and your son. Pray for your Son's Dad and try and talk to him about supporting your son. At the beginning of this month we went to MD Anderson for a 2nd opinion and they told us they thought Sarah had Glioblastoma, which is a worse diagnosis. The Seattle doctor did not change their diagnosis. Who knows what to think. We also take our daughter to a naturopath to get supplements, such as : Curapro, which is supposted to help inflammation and maquiberri which is good for the brain. Email at: edna@camai.com it is easier for me. I send God's blessing to you. Fight the good fight and just surround your on with love. You can do this!
Love, Edna

lovenitu
Posts: 1
Joined: Nov 2011

MY WIFE HAS BEEN DIAGNOSED WITH SAME TYPE ON THE 12TH OF NOVEMBER.LOOKING FORWARD TO LOTS OF MORAL SUPPORT.

BuzzyBee1208
Posts: 6
Joined: Mar 2011

12/10/11 3 year b-day. I have read that 14 years is the new goal to beat IM working on it. Everycase is diffeent If he is doing good God is Good.... Eat cancer fighting food cut out as much red meat as possible NO NO sugar and starch. I dont know much but I am willing to share what i have learned.

daizee44
Posts: 1
Joined: Dec 2011

I just found this discussion board and I am so inspired by the stories here. My brother was just diagnosed with a AA 3 a few weeks ago. He lives in Switzerland and is receiving treatment in Zurich. After the biopsy and scans his doctors told him they can't operate to remove the tumor, or parts of it, as it sitd in a non-ideal location. Does anyone here know if it is standard protocol to do radiation forst for six weeks, then follow with chemo, or if this is usually done concurrently? They are telling him radiation first, then a new scan then chemo if needed. But they are also offering him a clinical trial that combines the two at the same time. I'm not sure how differently doctors in Switzerland handle these types of tumors. Any information would be appreciated.

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

HI:

My daughter was diagnosed with AA3 (left frontal lobe) in February 2011. She had brain surgery first in Seattle. They got 85-90%. Then she had six weeks of radiation combined with Temodar for 42 days (U of Washington). She took a Temodar pill at night during the whole radiation time period. I think it was like 120mg a day of the chemo/Temodar. Then she took a month off and then she got a port installed in her chest. She is now doing one year of chemotherapy. The chemo is 2x a month. The first infusion is Avastin and Irinetecan. The last infusion is the same but she has to take Temodar for five days beginninng on the first day of the last infusion. The Temodar is really high, 400 mg. a day, it makes her very very sick. Currently, we have lowered the Temodar for 3 months to give her a break. I send you God's blessings and want to encourage you to pray and to have others pray for your family as well.
Edna

Raani01
Posts: 70
Joined: Mar 2011

My husband has Grade 3 tumor. He is goign to start Avastin in couple fo weeks. I wanted to do everyhing humanly possible. My husband loves food (sugar very much) and does not beleive in diet will have to do anything with the tumor (his theory is that if diet has any effect, the doctors would have suggested it!). Could you please share your opinion?

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

Hi:
We have a oncologist but we also see a nauturopath doctor. He says that cancer loves sugar because it metobolizes quickly. So, sugar is bad for people with cancer. He said that it was bad to eat sugar when you have cancer anywhere else in your body, but he was uncertain on the brain because of the blood brain barrier. The brain keeps everything out so well, that is why chemo is not as effective on brain cancer. I bet Julia (I promise) can explain it better. I am not very good at it. I do know that my daughter feels so much better on a lot of veggies, her nausea is better managed. Good luck and God Bless.
Edna

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

Hi BuzyBee:

Do you mind if I find out type and location of tumor? Also, where was your treatment at and what type of treatment? Thank you for sharing. Congratuations on your three years - I hope they were grand. God Bless you.

Edna

ourdream
Posts: 2
Joined: Dec 2011

My brother just made it 13 years after a grade 3 diagnosis. His has now came back.

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

Hi:

I am sorry to hear that. I hope and pray they have a good treatment plan or surgery for him. I send God's blessings to you and your brother.
Edna

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

I am sure that you posted the information before but could you please remind me why your daughter is on the infusion of both avastin, irinetecan and temodar? Is it that Duke is being more aggressive than the regular treatment of just surgery, radiation, temodar? I am curious.
And as far as the sugar, I agree with your naturopath. My sister eats very rarely anything that has sugar.

Julia

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

Hi Julia:
Part of Sarah's cancer was located in an inoperable place in the brain, the basal gangalia. Her surgery and chemo was started at Seattle Children's Hospital in Seattle. Her NO said that with children they always treat more aggressively to give them the best chance of beating it. Right now the NO wants Sarah to stop the Temodar but our Alaska doctor and us have decided to keep it going because we really want to beat that cancer. The NO said that there is no evidence that the Temodar provides any real benefit past six months and it makes Sarah so sick that her quality of life is pretty poor. We are going to go to either UCLA San Fran or MD Anderson this Spring and get another opinion because there are not any NO's in Alaska. It is very scary, as you know. Sarah's blood work actually tolerates the Temodar, it is the nausea that gets really bad. I am really afraid about the Avastin only working to keep the tumors at bay while the patients are on it. I am really relying on my faith to guide us. Sarah has stable MRI's right now, but they have two spots they are watching (whatever that means). I have been struggling to be hopeful lately but I am trying to keep my faith and pray. I send you and your sister God's Blessings Julia.

Edna

MIBsShad
Posts: 1
Joined: Feb 2012

Hello,

My Dad has just been diagnosed with a grade 3 anaplastic astrocytoma on the
frontal lobe, left side. Doctors have said it cant be removed as they cant get to it and has been given the statistics of 18 months to live. My dad says hes not a statistic hes an individual! My dad is a fighter and only 18 months ago had testicular cancer and beat it!
He starts radiotherapy in 3 weeks for 6 weeks. I really dont know much about this or what can be done to help.
Any help and advice would be amazing!
Thank You

Singh75
Posts: 1
Joined: Jan 2012

My dad was diagnosed with same in last Dec. He is 75 yrs old and has been physically active (rode bike until last 3 months). Just before the diagnosis, he gradually started to loose speech and balance. Doctors found AA3 in his brain front left lobe, and operated to remove some part of tumor. His speech and balance recovered well after the surgery and with light physical therapy. He's now undergoing 1 month of Temodar (100mg) and 6 weeks of radiation. Showing usual side effects (nausea,vomiting,tiredness,less appetite). He was also prescribed pantoprazole and ondansetron to reduce these side effects. His prognosis read 6-18 months which scares us. Has anyone had a senior family member diagnosed with AA3 and survived longer? That will give us some hope. He's become very weak now. We're worried how he will manage to go through 6 more monthly cycles of temodar. Does anyone know any alternative treatment, foods/diet, etc to fight this off. Any suggestion, advice will be much appreciated. Thanks,

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

Hi Janet:
I don't know if you still get on to this site, but I wanted to checkin. We are headed to MD Anderson in March. My daughter also has AA3. How did your nephew do after the treatment? What was his treatment? Where was his tumor located? I hope you check in periodically. I hope he is doing well. God Bless you and yours.

Edna

GregReese
Posts: 1
Joined: May 2012

Janet McCoy, all you need to do is run with it. I have an MRI every 6 months and they keep coming back with "no new tumor growth" which is what you want to hear. I was diagnosed in 2000 and had my first surgery in June in Tulsa. I had a short doctors visit one day and we decided to go to MD Anderson and once I was there (Oct 2001) they decided to to another surgery and basically gave me 5 years based on the statistics. Its now April of 2012 and I am still very well and kicking. My tumor was an Ana-plastic Astro-Cytoma with a WHO rating of 2-3.

Regards,
Greg Reese

ceastick
Posts: 2
Joined: Jan 2013

I am a 31 yr old male, I first got diagnosed with a grade 2 astrocytoma in 2011. Was doing very well, I even returned to work in 2012.mbut at the end of 2012 It got upgraded to a grade 3 anaplastic astocytoma. Have started chemo and things are starting to improve. I was devastated when I got the news about a month ago now but am doing pretty good, the ringing (tinnitus) in my right ear has stopped, vision is improving also. i have a 8mm mass on my brain stem

ceastick
Posts: 2
Joined: Jan 2013

Also guys get on to this fruit called Soursop. Here is an article on the fruit

 

http://www.sott.net/article/242555-Soursop-Fruit-Kills-Cancer-100-Fold-better-Than-Chemotherapy

maggie65
Posts: 4
Joined: Feb 2013

My husband was diagnosed with what we call a family nightmare brain tumor call Anaplastic Astrocytoma Grade 3 this past year end on October 2012 He had hardly no symtoms just some tingling on his left hand which he thought to be arthritis in his joints and suddenly developed a fever over night mid October we went to the hospital where we were told it was the flu but what we thought to be the flu as quick as it came it returned my husband left home seemingly fine gave me a kiss and went off to work driving through midtown Manhattan he suddenly felt what seem to be a charlie horse pain in his left cuff and promptly parked his plumbing truck vehicle which he drove while his co-worker watched and followed behind him to the side of the vehicle when he calpse to the ground what it look like a stroke was 5 seizures by the time he arrived at New York Presbyterian Cornell ER many seris of test done Blood/Urine Test, Cat Scan, X Ray and finally MRI they found he had a mass in an inoperable location in the brain, Doctors did further test 3 Spinal Tabs and determined it was Anaplastic Astrocytoma Grade 3 Cancer. We were beside ourselves and due to medical insurance we had to wait for more options of trails that can be given with this diagnoses of brain tumor and with further information we gathered it was told to us this tumor highest survival rate is 5 years, We had to find positive outcomes of this illness well its only been 6 months, my husband recieved beginning December 4th 2012 45 days of Radiation until Janauary 16 along with Chemotherapy started on Temodar Pills of Chemo 150mg and then in February 5 days Temodar Chemo regiments of 300mg in March suddenly upgraded to 400mg 5 days of Temodar. We weretold the tumor decreased and although my husabnd is unable to walk due to all the left side weakness side affects to medications his taking Dexamethasone Steriods and Insuline injections that rise his sugar glucose to the steriods affects and Baclofen for muscle spasm and Clonazepam for seizures theres alot going on now his got Nystagmus a condition that happens to nerves with people having  brain tumors and also severe constipation and swellon rectal hemmorroids my poor baby all we ask ourselves and god why? I also like to know whos out there with this condition has beat the odds and survivedthis illness past the 5 years with or not limitations of left side or right side My husband is currently in a wheelchair he went from cane, to walker to wheelchair and bed stretcher at times he cant even lift to transfer his body to the wheelchiar as his losing weight, his weak and on diapers. I pray each day now in a second opinion at Memorial Sloan Kettering Cancer Center we hope to fight this brain tumor together.

dwaldron
Posts: 2
Joined: Jun 2013

Hi all,

A coworker of mine and myself were diagnosed with the same type of cancer AA3, had the same surgery date and the same surgeon.  If that's not an odds beater then I don't know what is.  With such a rare cancer, the numbers aren't there to back up any statistical projection.  And if they had the numbers, gotta think about outliers like my coworker and me...astronomically low chance of that happening. 

Rajas
Posts: 1
Joined: Jun 2013

Hello everyone,

My mother (age 54) is dignosed with grade 3 astrocytoma on 7th June 2013 in her right front, she started showing the symptoms from 2nd June, we then immediately admitted her in the hospital. From MRI doctors were not sure about the type of the tumor, so she underwent a biopsy for confirmation and finally it was confirmed that it is a grade 3 astrocytoma. its been 3 days, she is still unconscious (feeling pain when doctors pinch her) because of the brain edema. Doctors are saying the tumor is big around 5-6cm and cannot be operated upon. My entire family is praying for her we are two brothers and my father, the doctors currently are saying let her come out of the unconscioue and then they will decide on the next steps. Can someone please tell me if there are any good institutes in the US which are conducting clinical trials which have been helpful previously Or can someone please guide us who has faced the same situation on what would be the next steps. We are holding on very strongly and god will again give her good health we all believe that.

please guide us!

may god be with you all.

 

Rajas

 

 

glyisa
Posts: 1
Joined: Aug 2010

My son was diagnosed with anaplastic astrocytoma in early 2010 when he was 27.  He has 2 surgeries.  The first one in May and the 2nd in February in 2011.  He's still alive and kicking today.  His lasT 8 MRI's hae been amazing!  That's what's going on with my son, Ryan.

mikeb7710
Posts: 1
Joined: Jan 2014

I went through the same thing, 5-2010  anaplastic astrocytma on the brain stem they called iit grade II then. now they are saying it was a grade  III back then, we did  surgery removed what they could , 5 weeks radiation and a year of Chemo therapy Temador,  they said it might come back, they never told me there was a 80% chance, which is what i read now on websites. had MRI every 6 months DR tells me great results, had one in april 2013 said the same thing looks great, started feeling my balance off, was told to drink more water I was dehydrated. Nov 2013 started feeling nausea again, more numbness on my right side, balance off, had MRI done in Dec 2013 said tumor is Back and has double in size in 7 months, looking at my MRI reports after last MRI. it had grown 1 mm on April 2013 MRI and i was never told about it, It was Always great results.  Now they are telling me surgery is not a option they could only remove 30%, radiation not much of option because they have alread used the max amount they could in that area, only option is chemo because i did good on it before. and they never said that would kill it, just help with systoms.   What do I do now?

mccindy
Posts: 82
Joined: Jun 2013

definitely go with the chemo, for a lot of people it does slow tumor growth and relieve symptoms.  Also ask about Avastin, a medication that stops the tumor from creating its own blood supply and in up to 40% of cases stops or minimizes growth.  There is always hope; I have friends with GBM who have passed their 'prognosis' date by 3 years.

Jmack54's picture
Jmack54
Posts: 2
Joined: Jan 2014

Hi Janet, I was diagnosed in 1994, at that time I was given 3 to 5yrs, its twenty years now, check out myprofile for more of my experience.

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