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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

my daughter took the temodar along with the radiation and the cancer came back. She was on a treatment that included avastin and she has been cancer free for almost 1 year. Good luck in making the decision to stop temodar, I know it is scary. When I had to make the decsion to cut down to partial treatments for my girl I was very scared but I had to take a good look at her and see what kind of quality of life she had, missing school all the time, being sick all the time etc. Not knowing what the future holds for her, I want her to be happy and healthy now. I want her to enjoy herself and have fun now. If you believe in prayer, God will help you make the choices you need to make and he will also let you be at peace with those decisions

ATomei
Posts: 2
Joined: Apr 2013

Hi alutiiqmom,

 

My fiance was diagnosed August 2011 with an inoperable Anaplastic Astrocytoma 3, she underwent 6 weeks of radiation which shrunk the tumor quite a bit from a 4cm to under 1 cm.  The tumor was deemed inoperable because of its location in the motor function area of her right side of the brain. We actually found out about all of this because of a limp she starting having in her left leg.  6months after the radiation and seizures due too brain swelling, there was tumor growth again and then our oncologist suggested we start the temodar for 12 months.  She handled it pretty well with fatigue and constipation which we had pills to help her with.  In her 6month of temodar which was 1 month ago, there was loss off feeling in her leg and her arm which was new and when we went for her 2month MRI it showed a significant amount of growth...from being stable for 6months to growing in a few weeks...everhything went sideways on us very quick.  Our oncologist now has side he didn't expect the aggressiveness of the tumor and said to try CCNU for 6weeks and it would have a relatively low chance of working for her and she would then need to goto avastin if that was the case.  Then from there only clinical trials were going to be in front of us...it was a very hard thing to hear but we kept faith and prayed.  After 1 week of the CCNU she started moving her arm and leg again that were pretty much paralyzed.  Her arm was like frozen tucked into her torso area and she would get muscle spasms...and her leg was so week were she needed a wheel chair. Its 3weeks into CCNU as a single agent, and she walking by herself.  Ive been reading on this website for almost 2years now and just decided to join and share her story.  We have faith and fight on our side and its nice to hear all the good stories about the battle against this stupid disease.  I'm hoping this CCNU works for a long time for her and the next MRI is coming up in may 15th.  Seeing her positive signs im praying everyday that its shrinking and the oncologist has something positive to say. Ive read your story and i hope everything works out with the chemo's and medications for your daughter. I don't know if they've suggested CCNU Lomustine for your daughter but it seems to be working for my fiance.  I wish you only the best and my prayers will be with you and everyone here.  God Bless

 

Adrian

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

My son has AA3 on his right thalamus. I see you found a Dr that removed your son's. Do you mind emailing me? I have some questions about this doctor and the location of your son's tumor. The Dr's here won't touch Ethan's and since we are newly diagnosed, there are so many questions I have.
Please email me so we can talk? ladidvldawg@gmail.com

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

hi, my name is Lourie, i was just diagnosed with a high grade 3 astrocytoma. I start radiation and chemo pill this tuesday, the 21st. I first got sick in June. This has been a scary experience. I am a bus driver, but of course i cant drive right now, but i am an aide on the school bus now. I hope to eventually go back to driving. They say i will do radiation and chemo for 6 weeks then continue chemo for another 6 months. This is my first post, not sure how this works, but ill learn.

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

As unfortunate as it is, welcome to our club. :(
My 10 year old son has AA3 on his right thalamus. What type of chemo and radiation are you taking? My son went through that but his tumor is really agressive and it didn't work. Now we are moving on to a new protocol that includes Temodar, Avastin, and Ironitecan. His tumor is on his right thalamus and we've had some scary moments with him. There are great wealth of message boards out there for brain tumors and the more information you have, the better you can help your doctor help you. Be your own advocate too. If you aren't sure you understand, make them put it in layman's terms; otherwise, you'll be like me in the beginning. I didn't question, just accepted. Then when we almost lost him; I started getting smarter and now, I ask..ask..and ask some more until I understand what's going on; and don't be afraid to push the envelope with your Drs. Sometimes, they are too cautious and well, it's your life we're talking about here. Don't just accept anything they say, question it too.
Hope this helps.
Maria

ChristyM
Posts: 38
Joined: Jun 2008

If you dont mind, can you tell Nancy and I about your nephews tumor? How big was it, where was it located? After his initial chemo and radiation, did he continue chemo, and if so, for how long?

JanetLMcCoy
Posts: 6
Joined: May 2008

His tumor was in the right insular (pushing on the temperal lobe) and was about 6 cm, about the size of an egg. He had surgery to remove the tumor and doctor's believe (from before/after) tests that all the tumor was removed. His surgeon felt like it was a grade II, but when the pathology came back, the radiologist graded it a III.

They called a meeting of the Tumor Board and the majority decided a grade III. He had six weeks of radiation and the doctor's recommended no chemo.

He's done remarkably well; he needed very little physical therapy. He's past the six month point and is back at work and driving. The doctor's have been up-front about the potential return of cancer and had said he will have chemo then.

He's very upbeat and positive, but of course, sometimes it hits him. They have a three-year-old son and you can't help but think about the future. Their faith is very strong, and we all know how very blessed they are.

He recently said he wished he could find someone who has done well and survived past the diagnosis. He has not been willing to attend support group meetings so none of us have pushed it.

I posted wanting to try to find someone who might be willing to talk to him by e-mail ... and just want to pass along the information. I don't know if he will do it, but want him to have the opportunity.

Through this journey, I try to support, encourage and pray. Thanks for your help.

ChristyM
Posts: 38
Joined: Jun 2008

my tumor was the size of a golf ball, and was in between a 2 and 3 also, however, my drs. decided to go ahead with the chemo also, I took it all through my radiaiton and am half way through the 6 month plan of 5 days a month. Nancy and I have talked through email--I am more than happy to talk with him if he wants to talk to someone--my email is csnelling1@neb.rr.com.

I have not been to a live support group either--just this website and the national brain tumor foundation. I since have met 2 woman at my work who have had benign brain tumors and we have spent some time talking about our situations too.

Jesswontgiveup
Posts: 1
Joined: Oct 2009

Your nephews case sounds alot like mine.

I had my surgery June 3d of this year at Duke medical U in NC. They had hoped to get 60% of the lemon sized tumor. Only I started to bleed out on the table they had to stop, give me a transfusion on the table and another in Neuro ICU. After a 2.5 week stay in the hospital(mostly ICU and partly on the vent) I was able to stay at a hotel in town and then finally go home. Six hours away.

I started on 6 weeks of radiation Mon-Fri. Along with oral chemo(temodar)
They estimated they removed 40% of the tumor by surgery and I went in for my first MRI since surgery last month. Seventy percent is gone! The only damage I have from surgery is mild nerve damage in my skin at surgery site. Thank God. I also have a strong faith and am a mother. My son is five years old. I'm continuing with the oral chemo 5 days on 23 off. Probably for at least a year. My next round will most likely be pushed back though, my white blood cell and platelet count dropped big time this week. So...we'll see how that goes. I will most definitely keep your nephew and your family in my prayers.

Haley75
Posts: 8
Joined: Aug 2011

This sounds so like me I was diagnosed with aa111 on Feb the 14th this year had surgery on 23 march they got 95% out it was top right and superficial recovery was ok had 6 weeks of radio no chemo they said they would use it later if necessary this has ripped my world apart I'm 33 years old and have five fantastic kids oldest is 14 youngest is 4 I'm so so scared I just want to see my kids grow up ... This is a nightmare I finished radio 7 weeks ago apart from being bold and being tired life is as normal as it can be .. I go for my MRI first week of October and I'm praying so hard that it will be good I live in wales uk x

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

good luck with your MRI. my only child 13yr has AA3 and it has been a long road, She was diagnosed March 27 2010 and has been through 4 brain surgeries and multiple other surgeries related to this evil disease. On a brighter note, She just had her 4th clear MRI. no evidence of disease. 10 months cancer free. Don't give up. this is your new normal and that's ok, what is normal anyway? everyone has something to deal with, this is our thing. One day, you and my daughter will be wearing something that say 'Brain cancer survivor'. Stay strong and never give up hope. Everyday there are new things being discovered for this and I have faith that God will take care of all of us

Haley75
Posts: 8
Joined: Aug 2011

Thank you so much for your kind words they really do help I'm having good days and bad days reading the Internet sire doesn't help exept this site which is full of hope .. I just can't help thinking what If ..... I just want a good MRI result I'm getting married in 11 days to my long term partner I just want to spend years with him and my kids 6 weeks today will be my first MRI since my radio finished 7 weeks ago ... Hope your daughter is doing ok xxx

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

Hi:
I remember we blogged before. How are you all doing? I hope you are both doing well. I cannot remember if you told me the medicine your daughter takes, do you mind telling me?
My daughter is taking two infusions a month of avastin and Irintecan. Then we take 400mg. of Temodar for five days a month. They want to stop the Temodar because it makes Sarah so sick, but I am scared to stop it because we have two good MRI's. What have you heard on Temodar? Thanks for sharing and God Bless you both.
Edna

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

please read my profile hope it helps

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

HI:
My 18 yr. old daughter is doing chemo for Anaplastic Astrocytoma III. It is very hard on her to do the chemo. She cries a lot and is sick a lot. Where can I find your profile to share your survivor story? Thanks for sharing. God Bless.
email also is: edna@camai.com

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

Hi:
I clicked on your picture and it took me to your profile that gives your background. Thank you for sharing that. I am very happy that you are doing well. God Bless you and your family. Thank you for sharing and giving hope to all.

ashley_clark
Posts: 3
Joined: Oct 2008

Janet -

I was first diagnosed with a brain tumor on July 10, 2007. I had surgery and my results came back that it was an oligodendroglioma grade ii. The dr. decided to wait and said that I had a good 5-20 years before the tumor would grow back and if I made it 5 years that I would be in the clear. My tumor grew back in 9 months and was bigger than before. (Before it was the size of a pop can.) I had a second surgery on September 16th this year and found out that it had come back as an anaplastic astrocytoma grade iii. I am now in the middle of radiation and chemo treatments. I also recieved the news that I had 2-5 years. Please, keep the faith!!!! I know it is hard, but they are only numbers! I am a 23 yr. old single mom to a beautiful 3 year old daughter and there is no way on earth that I can let those numbers keep me down! I will keep your family in my thoughts. If you would like to share more info feel free to contact me! I'm new to this also and it is definitely scary!

harley_f150@hotmail.com

Thank You!

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

Janet, my name is Lourie. I was just diagnosed with a high grade 3 astrocytoma. I first got sick in June. Had open brain biopsy on Nov 9, 2010. I am 41 and i have a 22 year old son and my daughter just turned 15. This has been a real scary ordeal. I feel for u and will keep u in my prayers. They are starting me on radiation and chemo this tuesday the 21st. I will do that for 6 weeks then ill continue chemo pill for another 6 months.

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

please read my profile hope it helps

JanetLMcCoy
Posts: 6
Joined: May 2008

Every,
Thanks so much for your comments. You are so right about faith -- one thing we said is that we are going to believe in God first and the doctor's we are using second.

You are all so courageous and an inspiration on how we all should live our lives.

Thank you. Bless you.

Janet

charlie
Posts: 1
Joined: Oct 2008

Hey
My husband was diagnosed with anaplastic oligoastrocytoma grade III in May of this year. He had surgery, radiation, and chemo as well. He is 34 years old and a principal of a middle school. He has not missed many days of school, so we are extremely blessed. He is not very positive about this disease. I try to encourage and tell him to have Faith. Easy for me to say, I guess. The reason I am writing is there is a great book called, Healed of Cancer by Dodi Osteen. It is a great book about healing. Also check out carepages.com for other people that are dealing with brain cancer. Our oncologist and radiologist are christians and have said many times that the attitude and faith of the patient goes a long way in determining survival.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello!
Our 25 yr old son David, who is an athlete in prime shape, playing college basketball, starting having migraines in May of 2009. When he started having double vision, his primary care doctor ordered an MRI which showed a large mass in his brain. We were terrified and shocked. He was referred the next day to Oregon Health Sciences University, and he had a craniotomy the next day. His surgeon and the entire operating team were wonderful...they removed all of the visible tumor and the encapsulating cyst. But the pathology report was bad...grade III anaplastic oligodendroglioma. No chromosome deletions so it would be less sensitive to chemo. The doctor told David and us that the median life expectancy is 3 to 5 years. We were beyond devastated. But I'm sure you all know how we felt. David's dr is a huge research dr, well-respected in the brain cancer field, but he lacks in the human relations dept. A total hope-destroyer. But we believe in God and would far rather trust in God than in human predictions. This is fact...the doctors DO NOT KNOW when someone will live and when someone will die. They are wrong so many times. They look at case histories and at statistics and then they make the best GUESSS that they can. The last time we saw that dr., he asked us if we had any concerns or questions or comments and I told him that we were okay but we needed him to not take away our hope. He acted surprised and said that there is a lot of hope. Quite a switch from when he first told us that David had brain cancer.

We have a friend who was told he would die in 6 months from pancreatic cancer... a different kind of cancer, I know, but a very deadly one too. That was 10 years ago, and he has been cancer-free all this time. He has really encouraged me a lot. I have also read lots of survivor stories at http://sites.google.com/site/glioblastomamultiforme/survivorlinks and there are lots of people who have brain cancer and who beat the odds.

Just some info about David. He had the surgery to remove the tumor. Made an amazing recovery. You would have never known he'd been sick. No deficits or handicaps from the surgery or the tumor. After he recovered from the surgery, he had 6 weeks of chemo and radiation. He was very weak and tired from the radiation and he lost his hair, but other than that, he tolerated that treatment pretty well. He says that he doesn't feel as sharp as he used to, and that he doesn't remember details like he used to, but I think some of that is from the stress he feels. He is a computer expert and he's always helping me with stuff, and he's lightening fast and very smart.....I don't think he has any problem with memory or learning stuff.

David had his last radiation treatment in July. Now he takes chemo (Temodar) 5 days a month. It's a much stronger dose than when he took it during radiation. His hair grew back and he's doing really good. His issues right now are stomach trouble from pain medication, bad headaches, insomnia, and nausea when he takes the chemo. He is seeing a headache specialist right now and hopefully she will be able to help with the headaches.

David will stay on Temodar for the rest of his life, or until (IF) the tumor comes back. He has had 3 MRIs since his surgery and there is no sign of a tumor growing back. His drs are all very pleased. David is working and playing basketball and golfing and riding his mountain bike. He's skinny and he's lost a lot of his muscle, but if you met him, you'd never know that he's in a fight for his life.

God has been so good and so faithful to David and to our family. We are praying for David and holding on to hope. Our God is an awesome God...no matter what the outcome is.

My friend with the pancreatic cancer said that his oncologist told him that some people, according to all the statistics, should die but are still living and are doing good...and the doctors do not know why. They just are. And that dr also told him that as long as someone is breathing and is alive, that there is hope. And I believe that is so true.

We are not even one year into this, so I don't know how encouraging our story will be to people. I hope that there will be some seeds of hope planted in you by my note or by the notes of others. I am glad that I found this website. I need all the encouragement I can get.

love and blessings,
Cindy in Salem, OR

ds3656
Posts: 1
Joined: Oct 2010

I am a 43 year old healthy single mother. I still have a 15 year old at home and have a grown son who has two sons, one being born less than 24 hrs from the time of my diagnosis. I was diagnosed late september with a grade 3 olioastrocytoma. Mine is infiltrating in nature. I wonder if anyone else had an infiltrating tumor. They don't believe they can do surgery on this, however, my neurosurgeon is still trying to figure out a way to do at least a partial resection. I did geet 2 second opinions without much else to offer except for radiation and chemo with temodar which I have had each for about 1 week now. I currently have no physical deficits, which has amazed everyone, as my tumor is very large. Most tumors they would have to measure in cm. Mine they didn't even try, just saying it is large. It would defenitaely have to be measured in inches. It orginated in my Cingulate Cyrus (mid brain) and gone into my right frontal lobe and bilateral temperol lobes. I had been having problems with focusing of my eyes, and short term memory problems and slight balance issue that came and went, but other than that no signs. It was a spot in my right visual field that sent me to the doctor. They think possibly I have had this tumor for as much as 15 years. So wish I would have found it years ago and did the treatment then. I have been fortunate to have no real deficits. I am still working out everyday before my radiation treatments. Has anyone else had surgery on an infiltrative type tumor? if so, how did things go? I have been doing research on eating alkaline and other healthy eating, does anyone have any experience with that as well? I am open to any suggested adjunct type therapies, and depending on how traditiional treatment is going, I will entertain drug studies. Anyone have any experience with Avastin? It is typically used with Glioblastomas, a stage 4 tumor, but my doctor is willing to give it a try when the time is right. (per my suggestion)

Good luck to you all in your fight! Deb in Springfield, IL

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

i would love to be able to talk to you cindy sue to you. u would be an inspiration to me, u already are. thank u, maybe somehow we could get in touch

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

i'm here if you need to talk see my profile

MarkKav
Posts: 2
Joined: Mar 2012

Hi there,

This is my first time posting on this site. I'm Irish but selected this site because I feel people on the US are most up to speed on medicine as well as online communication.

I've read all of the stories here and find some very encouraging, which is good. In particular, I've noticed that most posters are female which concerns me because women are known to be tougher than men (IMO) and they statistically have a lower incidence of brain tumours too. Sorry about that but I'm really getting tired of looking at stats and figures and to add insult to that, my neurosurgeon does not like to quote anything for fear of misleading me.

Anyway, my story goes like this:

1. Diagnosis on 29 May 2009 from MRI - tumour considered to be very low grade and possibly not growing much at all but there was no rush to operate. Tumour located in RHS frontal lobe.

2. Following repeated scans (originally every 3 months, followed by annually) the tumour was seen to have changed dramatically & grown enough to force surgery on Feb 2012.

3. Surgery "successful" on mid Feb with 80% removed.

4. Now mid way through temodar and radiation treatment for 7 weeks to be followed by monthly 5 days following every 23 on temodar.

From what I can see, this is pretty standard procedure... But I have a few questions.

Listening to those out there with more experience and having discussed these things more with others, any feedback would be appreciated:

Does anyone know other males aged about 37 with a similar situation to mine who is doing ok?

I don't want to hear the 3-5 year thing from my neurosurgeon but would be lifted to hear about someone doing better.

I've been given a book called "The Healing Code" written by Alexander Lloyd and Ben Johnson which I'm finding very interesting. Has anyone read the book or tried the Healing Code and what's your feedback?

I've also heard of people having tumours (not brain) reduced through Energy healing. Has anyone experience of this?

I was very religious as a kid (up to age 17) but life got in the way after that but this experience has naturally pointed me back that way again and maybe that's the only thing I'm banking on these days.

Anyone who can provide me with their story that will give me hope for the future would be really appreciated.

Thanks

M

JanetLMcCoy
Posts: 6
Joined: May 2008

Thank you, Charlie. You are so right about keeping faith; we all struggle with keeping our faith strong in everyday life, so it is understandable that someone facing this terrible disease. My family with cancer is about the same age as you and your husband -- they are both 30.

Continue to encourage, pray and HOPE.

I will pray for you and your family.

Janet

cancerfreeinhope
Posts: 2
Joined: Dec 2008

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.

rngoforth
Posts: 2
Joined: Jun 2008

I am so glad to hear that your are doing well and are 5 years cancer free. My husband just finished his chemo treatments and took Temodar also. He also takes the Depokote for his seizures and has not had any on this medication. It gives me great hope that you are doing so well. My husband seems to really worry. His next MRI is in a month. I just know that everything will be great. Everyone, please keep the encouraging stories coming.

SP24
Posts: 3
Joined: Apr 2011

Hi,

I was given hope by your 5yr cancer free report. I hope you are still doing wonderfully. I was diagnosed last October, and have been doing pretty well post surgery and radiation.

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

see my profile and keep the faith

ronefx
Posts: 11
Joined: Jan 2009

I had a grade 3 astrocytoma tumor removed feb 1993 at Herman Hospital in Houston, TX. I had 6 weeks of radiation and a year of chemotherapy at MD Anderson after the surgery. I was 18 then and am 34 now, just had a M.R.I. and everything still looks good. I trust and know the Lord had his healing hand involved. I found this site, looking for a website that has some survivors after effects, if that makes sense. I feel tired often and unmotivated. I also have other problems that doctors can't seem to find an answer to, so if anyone knows of a website please post it here, thanks.

elad84
Posts: 1
Joined: Apr 2009

i would like to know , if you don't mind .
are you able to work and do every thing you pleased?

megansmom
Posts: 8
Joined: Nov 2009

My daughter was diagnosised with anaplastic astrocytoma in Nov. 2009, after surgery to remove 95% was done in Oct. She has now went through the radiation and is still receiving Chemo. What did you receive for treatment with your diagnosis? We are afraid everyday that it will not stop, that it will return, your story is one of the few I have found that is close as far as age at diagnosis. She had no symptom until a focal seizure occrred in her left arm, the tumor was in her parital lobe 6cm x 4cm, thought that they got 99%, until diagnosis came back and then small area next to it became a concern. They are treating this area as cancer however could also be normal brain tissue. I know that pathology is important, and she had a gain in 1p and 19q no losses, and no visual other abnormality other then the p53 factor. Do you know what your pathology was? Please if anyone is able to help with information, it would be so helpful, she is 15yrs old and scared. Not to mention how scared MOM is!

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

Hi Megansmom:

My daughter is 18 years old with AA3. She was diagnosed at 17. She had surgery, radiation and is finishing chemo. How is your daughter doing today? I hope you and your family are doing well. God Bless you.

Edna

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

Yes ! Thank you for hope. My daughter was just diagnosed this year and we are full of fear. We are believers and have faith, but still get scared.

I am sorry that you feel tired and unmovtivated, but I am happy to hear of your longetivity. Did the the year of chemo make you really sick or was it ok for you? My daughter is so sick from her chemo.

Also, was your first MRI after radiation a clear one?

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

My wife was diagnosed January 2006 with a mixed anaplastic astrocytoma and oligodendroglioma grade 3. Same as most of you, we were devastated when we heard the statistics, 3-5 years. My wife was 26 years old at the time. We have three small children, the youngest was only one month old when she was diagnosed. She had a grand mal seizure, rushed to Hospital, and had emergency surgery in Hamilton Ontario. They were able to remove most of the tumor, but not all. 60 days of radiation combined with chemo (Temador) and then another 12 cycles of chemo alone. She tolerated it fairly well. Actually had more problems with the steroids (to reduce swelling) than the chemo. Now 3 years later, still doing well. She has an MRI done every 2-3 months. Results were usually "stable". Unfortunately the last MRI, done in February, revealed that there was little change from the December scan but there is slow, definite progression since June 2008. When they looked at all of the scans there is a trend of tumor growth. This news really upset my wife. She has been very strong and positive the whole time, but now it seems like she is starting to think that it might just be God's will to take her home early. That she may not see her children grow into the fine Christian adults she is praying for. Over all she is still strong for the most part, but I do catch her from time to time sneaking away to cry and pray. We still trust in the Lord. Please pray for us, as we pray for all of you.

Priash
Posts: 22
Joined: Apr 2009

Hello OCMenno:

My story is very similar to your wife. I was diagnosed 9/08 with AA-III and my tumor was as big as a tangerine. I was given 33 radiation treatments along with the chemo. I am now finishing my 5th month of chemo and doing well with all the side effects. Although, I am 25 years older than your wife is, I know how she feels about her well being and family.

I have two girls in college and I pray everyday to see them in their chosen profession and one day see them married. I pray everyday, that the Lord gives me this time to celebrate with my daughters. I know it is hard to stay strong, but when I see how my daughters and husband take care for me this gives me the strength to fight this disease.

My youngest daugther told me a story about a co-worker, her Mother told her to move out. Her friend came to work and unloaded all her problems that she was having with her mother. My daughter was a good friend and held her while she cried. (Sometime, we just need to be held) Her friend asked my daughter about her relationship with me. My daughter told her about my cancer. Her friend asked her, why are you so strong? She replied, "Because my mother makes me strong." This is how I want my family to remember me as a positive, funny and always smiling mother and wife. I know I will always be in their hearts.

My brother died of bone cancer at the age of 22. He was never married or had any children. Look at your blessing your three children. Keep a positive face and let her cry and speak her mine. She needs an outlet and you have to be her strength, for her to be strong for you and the children. After all, these are the times your children will remember, what a positive person she is. The gift of keeping positive is what will hold them together during their rough times in their lives. Since the baby is young, take video and record the great moments. Have her keep a diary.

Make everyday a special day and do not worry about what you or your wife cannot control. Leave this in God’s hands and the wonderful Doctor that he guides. OCMenno, we cannot determine our future, we can only live in the "Now". Let your wife go and cry in private, it maybe her outlet to reflect, especially with the next challenges!

I have your wife and your family in my prayers. Please keep us posted and never loss faith.

God Bless,
Priash

Diablita
Posts: 18
Joined: May 2010

I'm praying for your wife, I have the same type of tumor ( just got diagnosed this past week ) I'm ready to fight this disease, for my kids, they are 2 & 4 yrs old, I cannot leave them right now. I know that GOD will help me and your wife go through this fine.

soya
Posts: 1
Joined: May 2011

Hi Iam new at this I have been reading about your story for quite some time, how is your wife now, my sister she has the same and now she is taking her chemo pills this is the 3rd month, doing not bad but 2 days ago she start feeling kinda lightening in her head it could be a small seizure, did your wife experience any symptoms like that, its been really hard for the hall family we are really close and she have 2 young children 8 and 9, Iam always praying for miracles could you tell me a little more about your wife now and what the doctor usually say and do u know most people if they out ive the the 5-to 10 years thank you so much, Iam praying for all the people suffering from this evil sickness.

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

please read my profile if i can help please feel free to e-mail me

PBJ Austin
Posts: 346
Joined: Mar 2009

Just 2 days ago my 25-year-old sister was diagnosed with Anaplastic Astrocytoma. One of her tumors was removed at MD Anderson by Dr. Sawaya. She recovered nicely from the surgery but we were devastated when the pathology report came back with this diagnosis. I've been reading so much grim news on the internet, and this is the first positive thing I've found.

Thank you all for sharing your stories, this will help my family and me as we begin this journey.

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

PBJ Austin,
Good for you for being so active and finding this board so soon. I wish I had found it 3 years ago. I waited too long before I started looking for positive stories of hope and survival. The first thing I found on the internet after my wife was diagnosed in 2006 was all about the statistics (most of them far out-dated). I couldn't help but think, "she's going to die...soon, the rest of her time here will be miserable, our children will no longer have a mother, I will grow old alone, etc.". Yes, it is true that this is a horrible, deadly disease, and many lives are cut short, but it is wonderful to see that there are so many people surviving many years and encouragin one another. I thank God for that. We can all learn from each other here. There are times that are almost unbearable, and there are other times that everything is just great. I know it's easier for me to say than most of you, since I do not have the cancer myself, but I just like you to know that I share these things with my wife, who can't read, and it truly does strengthen her to hear about this hope. We also have a strong faith and a lot of support from friends, family, church, even my co-workers and bosses, and all of you.

Thanks

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

please see my profile and keep the faith

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

Hi

My son is five years cancer free from a grade II astrocytoma. I have even written a book called, "Michael's Journey" to inspire people and families like you.

He was 13 at the time and is now 18, cancer free and loving college life!!!

Laura (Michael's Mom)

PBJ Austin
Posts: 346
Joined: Mar 2009

OCMenno, thank you for your kind words and of course I will pray for your wife as well as all other cancer patients. The picture of you and your wife is lovely.

I sent my Dad a link to this board so he could pass it along to my sister. Dad and other family members were very glad to get the positive info you all have provided.

My sister is very upbeat and positive so I think she can beat this monster. The battle begins on Monday with her first radiation treatment at MD Anderson.

Hugs to all of you.

romulolima
Posts: 3
Joined: Apr 2009

I was diagnosed last summer with an anaplastic astrocytoma, Grade 3. How is your nephew-in-law doing? I am married and have a 4 year-old daughter and my wife is expecting our second girl.
Please respond.

Thank you,

Romulo Lima

vetticus
Posts: 1
Joined: Apr 2009

Hi everyone,

It was nice to see your messages here. I too was diagnosed with this (an Anaplastic Astrocytoma grade III) last month and have good and bad days in terms of keeping my spirits up. I had surgery mid-March and am due to start my radiotherapy today. Your notes have given me some strength. Look forward to chatting more.

Thanks
Yvette

santis_mom
Posts: 1
Joined: Jul 2009

Hi all,

Yvette, it sounds like we are in the same boat--I was diagnosed with AA-III in late Feb. There was one complication, though, I was 28 weeks pregnant. We decided to wait till 32 weeks of gestation and then induce. Within a week of delivery, I had neurosurgery to resect the tumor. I've now completed radiation with Temodar, the one month rest period, and the first of 6 rounds of Temodar.

Are you feeling decent lately? What stage are you at?
I haven't reached out to anyone until now.

Best,
Trina

kellbell
Posts: 16
Joined: Jul 2009

My husband has been diagnosed with the same. He was diagnosed 11 years ago and was tumor free until may. He recently had tumor removed and is doing well. He has just finised his first round of temodor. He has is ups and down days also. Keep your head up high and dont let it get the best of you. Keep fighting every day. God Bless YOu.

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