CSN Login
Members Online: 4

You are here

anaplastic astrocytoma grade 3

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

Hi,
My daughter was diagnosed with AA3 in March 2010. She has had 2 brain surgeries to remove the tumor. The Dr's feel that they removed it all. Is there anyone out there who has been or is going through this with a family member or themselves? I've read alot of grim stories and I'm looking for something positive to help us get through this.

NCAA XC's picture
NCAA XC
Posts: 25
Joined: Nov 2009

For the most part, all you will read are the dire things when you get on-line about this topic.
It is important to read anything and everything you can, BUT, remember statistics mean nothing and all cases are different.

Secondly, you'll learn that this indeed is a very small world and relating to my first point, I personally know two other GBM4 victims and one astrocytoma grade 3 victim.
My wife is a GBM4. The two other GBM4's were much more profound and they unfortunately passed away.
My wifes GBM4 was more localized, it was in the left frontal lobe and she had two craniotomies where they supposedly removed the entire tumor.
She drives, goes to the store, shops on her own and her Karnofsky score is 90.
The other two poor fellows although diagnosed with the same thing had a much more profound case...paralyzed limbs, seizures, tumor in a place that could not be operated on etc...

So, you see ALL cases are different and don't get to down about the numbers.

Do your research if you already have not done so..go to the best hospitals for the problem...don't stay anywhere that isn't associated with research or a university..and get a second opinion...don't let any doctor tell you that all oncologists will do the same thing and you don't need to go out of state where the best are and where they do this everyday etc....
Of course that is why doing your homework is VITAL..just don't take the numbers as gospel.

sorry for the rambling.

P.S. The fellow with astocytoma cat3 sits right behind me here at work..He's the one that gave me the frantic phone call after my wife fell ill on August 26th 2009...and screamed in the phone GO TO MD ANDERSON!!!!!!
He just celebrated his 10 year cancer free aniversary.

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

Thanks for your reply. I have been reading more positive stories about this as I search more. we are going to Dartmouth medical center in Lebanon, NH and we are very happy with them. We have had 3 different hospitals do pathology on my daughters tumor, DHMC in Lebanon,NH, Brigham and womans in Mass and Childrens hospital in Phili and all have come back the same. Her tumor was in her cerrebellum and was a mixed cancer. It had low-grade and high-grade, the Dr's said it was rare to see that and they also told us it is rare to see in a 12 year old. Fortunetly we had a great surgeon who truely feels that she removed it all. My daughter is having 7 weeks of radiation and is on oral chemo for 42 days. She will have 1 month off and start with a higher dose oral chemo, 5 days on and 23 days off for 12 cycles. I really hope that this works. She is my only child and I don't know what i would do without her. She is a strong girl and her spirits are high and I know that, that is the first part of recovery, a positive attitude. I pray alot. I hope I can be on here someday letting someone else struggling know that my daughter just celebrated her 10 year anniversry cancer free

brettsmom
Posts: 1
Joined: Jun 2010

My son was fourteen when he was diagnosed, Aug 2008. He has had all the radiation and chemo available. His tumor is inoperable. He is doing really well still. Going to school. Getting all As. Got his class ring. Went to a school dance. Getting his driver's license. Had his first kiss. I try to be thankful for what we have been allowed to experience since this dreadful diagnosis. The doctors are very happy that he is doing so well. I know it is not forever, but there have been kids from his school pass away in car accidents, etc. so nothing is really forever. I would be happy to talk with you about the types of treatments, etc. I felt so negative when Brett was diagnosed, but he has been a real trooper throughout all of this!

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

You are right about that, I work with 2 different people that have lost their children, 1 to cancer and the other to a car accident so you never know. It's been very hard for me to accept the fact that I may out live her. That is not supposed to happen. I want her to have her first kiss and get her drivers license, I want her to fall in love and experience all the things in life that she should. I would love to keep in touch with you to see how things are going with your son. You have already been where we are now and it's comforting to know that we are not alone. Thanks Brettsmom. :)

Diablita
Posts: 18
Joined: May 2010

I have an inoperable Anaplastic Astrocytoma Grade III, the doctors have already removed some of it and will try to remove a little bit more this month, but we are not sure yet, they'll try to do it with radiation and Chemo ( that's how they do it with other people )They say it works and we hope it will work with me ( actually that would be one of my only chances, since my tumor can't be removed with surgery ).

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

I hope everything will work out for you, can I ask how old you are? I hear that the radiation and chemo is the way to go. I have read stories of people only getting one or the other, but I believe both should be used at the same time. If you are over 18, I have read that MD Anderson Hosp uses accutane along with temador and radiation and that seems to work well. I have asked my daughters doctors about that, but the trial was done on adults and not children so they are not comfortable using it in our case, but it couldn't hurt to ask yours. What keeps me going mostly is that there are new drugs and/or treatments coming out everyday. I will pray for you and keep you in my thoughts. They can send robots to Mars to collect soil samples yet they can't cure cancer. Maybe they should take the money that the goverment spends on that and put it towards cancer research. Bet they would find a cure with that kind of money.

patriciam
Posts: 39
Joined: May 2009

My daughter was diagnosed Feb. 2009, AA3. She was 16, she had the standard treatment, oral chemo for 42 days, then every other month for a year. She also had 6 weeks of radiation treatments. She is doing well. She graduated from high school with honors and enrolled in community college. She was homebound from school for two semesters because she was missing too much school during raditaion treatments that those 42 days of chemo. I have faith she will do well, her tumor was removed too, all gone. She now has MRI's every three months.....from my heart to yours....a big hug for you from me.
pm

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

your daughter is doing well? Thats great. I need to hear these things, as you know it's hard to be strong sometimes. Where was your daughters tumor located? where did she go for her treatments? We live in NH and we go to Dartmouth Medical Center/ Norris cotton cancer center. We are lucky that we live only 1 hour away from the hospital, but the drive everyday is starting to wear on us. If you don't mind me asking?, what is the prognosis for your daughter? I don't usually talk religion to people but, I have alot of faith that God will take care of my daughter. And yours. What a crazy world huh? One minute you are living a normal and happy life and then all of a sudden, it's turned upside down and the future that you planned is so uncertain now. Thank You for sharing your story with me and I would love to keep in touch with you as we are sharing the same fears and concerns about our girls.

patriciam
Posts: 39
Joined: May 2009

I will be glad to communicate with you. Give me your email and I will email you.
pm

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

do you know how I can send you my email without posting it here? Or you can send me yours and I can email you. Tina
p.s. Thanks

patriciam
Posts: 39
Joined: May 2009

HI Tina,
Cancer sucks, right. I hate it. I created a new email so you can contact me. Email me at cancersucks16@yahoo.com

Talk to you soon, hang in there.....I know it's hard on the heart....
pat

PBJ Austin
Posts: 347
Joined: Mar 2009

Friends, there is a private message function on this board. Please click the CSN Email prompt on the left side of the page, it's in the shaded reddish area. You can find the poster you need and send a private message. I've only done this once, sorry if my instructions aren't so clear.

patriciam
Posts: 39
Joined: May 2009

Thanks for the tip. I will give it a try.

Hopekathy
Posts: 4
Joined: Oct 2010

my son was just diagnosed with AA III but they were not able to remove it all. I noticed this was posted in May- how are you doing now?

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

I'm sorry to hear about your son. How old is he? My daughter is doing well, but the tumor growth is doing better. The cancer did not respond to the radiation or chemo given. It was actually still growing during treatment. We have switched to a different hosp because the one we were at, I feel are not experienced enough with brain tumors. We are now going to Dana Farber in Boston Mass. They gave us alot more options than we thought we had. My daughter just had her 3rd brain surgery to remove new tumor growth. I wish I could say that the protocol treatment works the same on everybody, but it doesn't. What has worked for others has not worked in our case. I have decided to go a little bit more aggressive with treatment this time in hopes that this will slow down the tumor growth and hope that some new drug is discovered. My daughters life is in the lords hands now.

sm1235
Posts: 1
Joined: Jun 2010

I was diagnosed March 2009. I had one surgery to remove the tumor. Luckily, I recovered 100%. Initially, I had motor function issues with my left hand. The radiation wasn't bad except for the hair loss, but it's finally coming back. The worst part is taking the Temodar for a year after radiation. At first I would take nausea pills, but soon discovered they were making me sicker than the Temodar. I am currently taking them once every four weeks for five days, 400 mg a night. I still make it to work everyday, but it's not easy. I was fortunate enough to see one of the best surgeons in the country at Vanderbilt. He did tell me before I left that there is a high rate of recurrence of the AA3..

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

Hi sm1235, our doctors told us that there was a significant chance of it coming back also, but I have not told my daughter that because she would give up hope and until her doctors tell me there is no hope she will not know. How far into your Temodar are you? Can you tell me where your tumor was located? The doctors said that she does have a chance at beating this because there were low and high grade cells through out the tumor which they say is rare to have both through out. I don't know. I have done some research online but it is very depressing and the thought of my only daughter, my only child dying makes me sick to my stomach. I will keep praying and believe that God will help in healing her.

PBJ Austin
Posts: 347
Joined: Mar 2009

I know it's hard but please try to resist the temptation to google too much. A lot of what you will find on the internet is out of date. Please remember that new breakthroughs in cancer treatment are coming all the time and we must not give up hope for our loved ones, even if the doctors and web sites tell us otherwise. Back when my sister was diagnosed they were going to keep her on Temador for at least 2 years, but after just one year she doesn't need it and she has left the doctors at MD Anderson scratching their heads. Maybe the cancer will come back, maybe it won't. Personally I think those docs will be scratching their heads for some time to come.

Hugs and prayers for you and your daughter.

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

Thanks PBJ Austin
You are always so positive and I love that. Everytime I read one of your posts it always cheers me up. I try to stay positive most of the time, but sometimes it's hard. I believe that IF this comes back there will be something new out there whether its a new treatment or medication that will help her and everyone else who has to deal with this. I have just made a promise to myself that I will try to stay as positive as you. THANKS.

cindysuetoyou's picture
cindysuetoyou
Posts: 514
Joined: Dec 2009

Hi, Momsworld.

I have a 26 year old son who was diagnosed with an anaplastic oligodendroglioma. I have 3 other children, and he's not exactly a child any more, but I know how you feel about the possibility of life without your child. He will always be my little boy. My heart goes out to you, and I am so sorry that you and your daughter have this road ahead of you. But there is hope!

Here's our story: Out of nowhere, my perfectly fit, never sick, healthy son David started having migraines and then double vision in April of 2009. An MRI showed a mass in his brain. We were terrified. David had brain surgery on May 8th, and the surgeon said that they got 100% of his tumor. David's oncologist was quick to inform us that he is postive that there is still tumor there...in microscopic form. After David recovered from surgery (and after we got two more opinions regarding treatment protocols), he started radiation treatments with concurrent chemotherapy--Temodar. After six weeks of radiation and chemo,he started a much higher dose of Temodar--five days on, twenty-three off. He has an MRI every 3 months to see if a tumor is growing back.

David's pathology report showed that his tumor did not have the gene deletion that would indicate more sensitivity to treatment. The doctors gave us such a poor prognosis. It's crazy...they stress how important a good attitude is and then they take away any hope. I am not exaggerating when I say that I cried every day for almost a full year. So here we are, over one year later. No sign of tumor growth. David is doing really, really good. He works part time, works out at the gym, does stuff with friends and family. He says that his short term memory isn't as good...big deal. Neither is mine. He does have headaches which terrified me at first, but a nurse told me that it takes a while to recover fully from brain surgery, and it seems reasonable to have headaches for a while after an ordeal like that. He gets sick from the chemo....stomach problems and nausea, insomnia and headaches, but he is learning how to cope with that. It's not pleasant, but it's so much better than other forms of chemo. Our oncologist says that David should stay on Temodar for as long as four years.

When we go in for those 3 month MRIs and checkups, I feel like the oncologist and his staff are kind of surprised that they haven't found anything. I love surprising them.

Please fight hard to hang on to hope. Don't let the statistics, the internet info, the doctors, etc. take your hope away. There are lots of people who are still going strong, who the doctors thought would not be around for very long. I just met an older guy at our last MRI appt. who was given 6 weeks to live....five years ago. He looked great. I have a good friend who was told to go home and get his affairs in order....that he had 6 months at the most. TEN YEARS later, he's still at our church, totally fine, going strong, with no sign of any cancer anywhere. He had pancreatic cancer, one of the very worst kinds to have. He told me that his doctor (a new one, not the one who said he had 6 months) said that there are a lot of people who the statistics show should be dead...and they did not die. And the doctors cannot say why....they just...didn't die.

It's super hard, but as moms, we have to be so brave and so positive for our kids. I think it would be terrible to be a cancer patient trying to fight and not having anyone stand with you and believe with you that you can beat it. I do believe it can be beaten and I am committed to fighting and praying with every ounce of strength that I have in me.

I pray all the time that God would do a miracle for David and heal him. I believe with all of my heart that God's hand is on David and that He is the One who is preseving David's life. I am grateful for the doctors and their knowledge and the chemo and all the treatments, but I know that it's God who is making the doctors and the chemo effective. In the meantime, I am taking it one day at a time and thanking God for each day, each moment, that we are given. It's a hard way to live, but it's okay.

Love and blessings and peace to you,
Cindy

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

Hi Cindy,
Thanks for your story. I believe that it is hard for any parent no matter the age of thier child to go through something like this. However, I am surprised that his doctors want him on Temodar for 4 years. That seems like a long time. Where was his tumor located?
our doctors gave us a poor prognosis also, but as I read and research more, I am finding more and more positive stories of people living longer that the statistics. Like you, I believe in the power of prayer and I believe that Gods hand is on my daughter also. Just a quick story about my daughters 1st surgery. Before her surgery we had a priest come and give her the anointing of the sick blessing, the surgery was supposed to take 4-5 hours and it took 8 hours. When she was brought to the PICU she was just starting to wake up. A few hours went by and she was talking and moving in her bed. The doctors told us that she would probably come out of surgery looking like she had a stroke, which would be temporary, but she was fine. My daughter had asked me why I was touching her head, I told her that I was not touching her head. She then asked me who it was that was touching her head, and I told her there wasn't anyone touching her head. I asked her why she was asking this question and she told me that she felt someones hands on her head. To me, it was Jesus touching her head and starting the healing process. I know that this may sound a little wierd, but there have been many little signs that are showing me that God is with her, with us. She just finished her radiation yesterday and in 1 month will start the

stronger Temodar. Same as your son, 5 days on and 23 days off. She will be on that for 12 cycles(1year). I have faith that this will work. I have also been checking in to see if there are any clinical trials going on now and there is one at Mass General hospital. The trial is for children with brain tumors that the traditional treatment did not work. So we always have options if this awful thing comes back. Luckily, Mass General is only about 1 hour away from us. Thanks for listening. My thoughts and prayers are with your son and the rest of your family as well.
Take care and God Bless
Tina

PBJ Austin
Posts: 347
Joined: Mar 2009

momsworld, your kind words put tears in my eyes. This board has done so much for me I am overjoyed to have helped even one person.

cindysue, HOORAY for David!! Your story is additoonal proof the docs, as great as they are, simply do not know everything. Stats mean nothing as we are all individual people. Your son is doing well, my sister is doing well, and I have faith momsworld's daughter will beat this too. Hugs and prayers to all.

Hopekathy
Posts: 4
Joined: Oct 2010

My son was just diagnosed with AAIII and it was inoperable. he had grade 2 and 3 in his tumor. No one told us this was rare- i thought it was a good thing (maybe not really a 3). How is your child doing?

j_waffles
Posts: 22
Joined: Jun 2010

I love reading these, because it totally makes me think of my mom. I'm also a kid with brain cancer, and the one person who helped me though the hardest part was my mom. So here's my story as encouragement for you moms:

Back in 1996, my dad was diagnosed with a Grade IV Oligoastrocytma. The docs only gave him a couple years to live and told my mom to get her affairs together. He had surgery and chemo (PVC). Now he's 52 and runs marathons. Though in addition to treatment, he did some holistic treatments and changed his diet.

December 2008, I went to the ear doctor cuz I was hearing a weird noise in my ear. A CT scan that was quickly upgraded to an MRI showed a large tumor in my right parietal lobe. My mom had already been through it before, but she told me "it's different when it's your BABY who has cancer." On my way to the hospital for my surgery, she asked me what I was thinking and if I was scared. I replied, "No, I'm just worried about you. You guys will be bored in the waiting room, and I get to blink my eyes and surgery will be over."

After my surgery, it took a while for them to get me an ICU room, and I was really chatty with the nurse -- talking about how amazing my mom is -- enough that she brought my mom back to the post-operative area to shut me up. I was SOOOO happy to see her (and loopy, haha).. and she was happy that I was being a nuisance so she got to see me early! Also, my recovery over the past year was so great that she would tell her close friends and coworkers about me, almost bragging. I knew it was because she's a proud parent. She also went to every doc appointment, helped me change my diet to match my dad's and drove me around when seizures kept me from driving.

April 2010: We were out of town to visit my older sister, and my dad was going to run a marathon. While with my dad and me in the hotel room, she had a sudden heart attack. I frantically called 911, and both my dad and I tried performing CPR on her but to no avail. She was gone within a minute.

Hearing your fears of your daughter dying before you makes me wonder if my mom thought that. If she did, it was probably only initially, and she never let me know. She told me that having brain cancer doesn't change me, and I'll continue to live a long life. I'll stay true to her word, even though I wish she could have seen more of my long life ahead!

Oh, and for my progress: I've just started up on Temodar, since I changed neuro docs, and this doc (my dad's doc) thinks slow growth still needs to be treated. I'll be doing at least 24 cycles and supplementing it with holistic therapy. Although my condition might not be as bad as your daughter's... stay strong and give her hope like my mom did to me. It's really made me a strong young woman and I'll be thankful to her the rest of my life.

Jenny

PS- My mom's name was Cindy too.

aliveandblessed
Posts: 6
Joined: Jul 2010

I am sure your mother would be so proud of you. She obvoiously was a great mom. I am a mom and will become a first time grandmom next year but I still needed my mom to help me through my surgery and following treatments. She only used the word cancer when telling family and friends the first time (she told them that was the only time she would use the word). You were blessed to have such a great mom and she will continue to live on through you. I think it is easier to be the survivor that it would be for me to deal with one of my children going through this. What type of diet are you and your dad on? Keep fighting and God bless you.

aliveandblessed
Posts: 6
Joined: Jul 2010

I am sure your mother would be so proud of you. She obvoiously was a great mom. I am a mom and will become a first time grandmom next year but I still needed my mom to help me through my surgery and following treatments. She only used the word cancer when telling family and friends the first time (she told them that was the only time she would use the word). You were blessed to have such a great mom and she will continue to live on through you. I think it is easier to be the survivor that it would be for me to deal with one of my children going through this. What type of diet are you and your dad on? Keep fighting and God bless you. Sorry, I guess I pressed the submit button twice.

j_waffles
Posts: 22
Joined: Jun 2010

You're right, she was a great mom and wonderful person to all those around her. I've learned a lot from her, even after her death.

Our change in diet consists of cutting out processed sugars completely and still watching the natural sugars we take in (including fruits). The American Brain Tumor Association posts on their website that studies show a sudden peak in insulin (produced when we have sugars) encourages pre-cancerous cells to become cancerous. What that basically means... cells around a tumor will turn into tumor cells more quickly when we consume sugary things.

We also avoid red meat, pork and processed meats as these have been known to also promote cancer growth.

My general doctor who has a good understanding of nutrition gave me this link recently:
http://www.aicr.org/site/PageServer?pagename=recommendations_home
It's very interesting and I believe it applies to pretty much all cancer.

aliveandblessed
Posts: 6
Joined: Jul 2010

Thank you for the diet info. I love sweets and am trying hard to keep sugar out of my diet now. I am glad that your dad is doing well. The good news about Temodar is you don't lose your hair from that like from radiation. God Bless you and your family!

aliveandblessed
Posts: 6
Joined: Jul 2010

I had my first and only grand mal seizure on April 25, 09. The doctors here said it wa low grade based on the MRI and CT. They suggested leaving it and monitoring it or I could get a second opinion. I chose a second opinion from JHHU. The Neuro surgeon there thought it looked low grade but recommended surgery. The surgery was done on May 22,09 and went well (tumor the size of a plum, right frontal lobe). I did 6 weeks of a combination of radiation and oral chemo (Temodar) followed by 5 days of chemo a month for 6 months. So far all MRI's have been clear. My next one is this Friday. I feel well and do not have residual issues. Occassionally I come out with the wrong word or have to stop and think about what I was trying to say before it comes back to me. I returned to work as a teacher in Aug. 09 (2 days before my last combined radiation & chemo treatments. Contrary to my usual inclination, I did not read much about this tumor until I had completed my treatments. Now I am reading more about it and looking for survivor stories. I spent last summer reading only funny stories and I did not watch anything about death. Prayer, family & friends are the best assets when facing this giant.
Does your daughter have any discomfort when sleeping on the area where her craniotomy was performed? I do still find that it feels uncomfortable to sleep directly on the right side of my head. As a mother myself I am glad that I am the one with this diagnosis. It is so hard to watch your child go through serious illnesses.

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

Hi,
My daughter does not have any discomfort at all where they did her 2 surgeries. The tumor was in her cerrebellum and the size of a golf ball, so I guess yours and hers were around the same size just different area. She just finished her radiation and chemo combo. We are now on a month break where we will be taking her on a well deserved vacation. When we come back she will be on Temodar 5 days on and 23 days off for 1 year, Hoping for the best.

aliveandblessed
Posts: 6
Joined: Jul 2010

My husband and I took a cruise after I completed the 6 week radiation and chemo combo and before starting the 6 months of Temodar. It was great. I did go to bed early because I was tired and didn't have the stamina to stay up with the night owls. Although it is not something people talk about alot, the biggest problem I had during the 6 months of chemo was constipation (senokot or the generic of it) helped that. I took a nap every afternoon after work. I was able to work the whole way through it with only a few days missed when I got bronchitis. When you work in a classroom full of children with special needs, it is hard not to get a few bugs even without a suppressed immune system.

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

You deserved to go on that cruise. I can't even stay up late, that just comes with age-LOL-. So far my daughter hasn't really had any side effects other than hairloss. During her radiation and chemo she was taking Zofran for nausea, but the day after her last treatment she was fine. She still has alot of energy. She is 12 and we are not. We'll see how she feels once she starts the higher dose of chemo. I will pray for you and everyone else on this site that God will take care of you. I get nervous about all the germs in school when she goes back. The school nurse and I have been in touch and she said that she will send a letter home the first week of school letting parents know that there is a immune comprimised child and if there child has any symptoms of cold,flu etc to call her before sending them to school. If there happens to be some sort of cold/flu/strep throat breakout I will have to keep her home until it's under control. Good luck and lets keep in touch.

aliveandblessed
Posts: 6
Joined: Jul 2010

I took all the vitamins that are supposed to boost immunity B-complex,C, Pro-Biotics, echinacea. I am not sure how much they actually helped but I felt a little better taking them (like I was doing something) and my counts stayed good. I also carried masks to school in case someone in the class was sick (very few parents keep their children home for a cold). I wore baseball caps until my har grew back. It's curlier now than it ever was. It your daughter has a decrease in energy it will just mean you will be able to keep up with her a little better. My sister-in-law's mother is a breast cancer survivor of about 20+ years. Her prognosis was not so good at the time. She kept reading all kinds of articles (pre-internet) and sharing them with her doctor. I like her doctors answer to the added info. He told her "you are not a statistic, you are a person." This site is great. I wasn't ready to go looking until after I had completed my treatments, now I read up on all I can. I think attitude has alot to do with recovery. Every year that we keep the cancer at bay is a year that medical science has been able to make new discoveries.

Big Sister
Posts: 1
Joined: Jul 2010

First time at this site even though my brother was diagnosed with an aggressive AA3 in January 2003. He was 55 at the time. Has been followed all along by neuro-oncology at DHMC, Lebanon, NH. He is a single guy without a wife or kids, so I am his 'primary' support person. His tumor was inoperable due to location and his treatment options included radiation and chemo (Temador). He did seven weeks of radiation but declined the chemo.

We have been very, very pleased with the care he has recieved at DHMC and have only the best things to say about the facility and its doctors...they are gifted and caring medical professionals who have done everything for my brother.

What I want you to know is that my brother is still with us...seven and a half years later!

My best to you...my love and support...

cbrowne1976
Posts: 1
Joined: Aug 2010

Hello,
My 15 year old daughter was also diagnosed this January with the same form of cancer. We found out "by accident"; she had 2 brain surgeries in December to remove what they thought was a benign cyst in her right temporal lobe, believed to be causing her Epilepsy.
When the pathology reports showed it was an AA3, no one believed it...her Neurologists and Neurosurgeon at Thomas Jefferson University Hospital were beyond shocked, as were we.
After another pathology test at the Childrens Hospital of Philadelphia, it was confirmed for sure.
Although it appears that luckily the whole tumor was removed, she underwent the standard 6 week course of oral chemo (Temodar) and radiation treatments.
Now we are on the 5 days a month oral chemo maintenance therapy - on month 3.
The first month was very difficult for her, as the dose of Temodar is double than that of which she had been on during the chemo/radiation course.
However, it seems that she is "used" to it now, though we still deal with fatigue and nausea.
We go back for an MRI soon, so we hope it shows nothing.
I am glad I joined this forum...I know I am not the only parent out there caring for a child with cancer, but being able to read others' stories is helpful.
For everyone here caring for a loved one with cancer, I wish all the best for you and yours.

scia65
Posts: 5
Joined: Sep 2010

Hi I have a astrocytoma glioma grade 2, I have had 2 surgeries to remove it and have done 32 treatments of radiation and have been on temodar also. Its a rough road but I am still here by the way my tumor is still here. But I function

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

My daughter was diagnosed in march 2010 with AA3, she has had 42 days of temodar and 35 radiation treatments and had just started on her 2nd round of temodar when her MRI came back with changes. She just had her 3rd surgery because the tumor came back. They are diagnosing it the same,but are really unable to tell because of radiation to that area. They think it is now glioblastoma. The doctors told me that my 12 year old daughter was going to die. We are not ready to accept this yet, so we are going to another hosp where thay are doing clinical trials and hopefully offering other treatment options. best of luck to you. I will pray for everyone on this site.

PBJ Austin
Posts: 347
Joined: Mar 2009

Hello momsworld, I am sorry to hear of this setback but you are doing the right thing to get another opinion. When my kid sister was first diagnosed they told her both tumors were inoperable. At my father's insistence she went to MD Anderson and Dr. Sawaya disagreed with the diagnosis of inoperable. She had the operation and the larger tumor was removed. I hate to think where we would be w/o that second opinion. If there is any way you can get her to MD Anderson in Houston please do so.

I hope with all my heart the other hospital will be able to help. Please keep us posted, you and your family will be in my thoughts, along with everyone else on this board.

Pam

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

I wish I could get to MD Anderson, but we live to far away. I live in NH. We are going to go to Dana Farber/The jimmy Fund Clinic. We have left the other hosp that we were being treated at because I feel that they do not have enough experience in this type of cancer. Dana Farber is in Boston MA. They may tell us the same thing, but I can't just accept what DHMC has said to us. They were cold about it too. They looked at me and said " the pathology is back and the diagnosis is the same because it is almost impossible to read after radiation, might have gone up a grade but we do not know. Your child is going to die from this" Just like that. I went numb and said to myself there has to be something else. Anyway, we are not giving up yet. We have God on our side and are praying for a miracle.

cindysuetoyou's picture
cindysuetoyou
Posts: 514
Joined: Dec 2009

I cannot believe that I didn't see these posts a lot sooner. I don't know how I missed them. I wish I was responding in a more timely manner.

Momsworld, I'd like to kick your doctors right in the butt. Our dr is cold that way too--he told us in a cold, factual way, totally devoid of emotion--almost inhuman. We were blown away and almost could not believe what he was saying because the words did not match his demeanor. I think that some of these drs have brilliant minds but are totally handicapped and retarded when it comes to people and their feelings. You have a battle ahead of you but please don't let your doctors rob you of hope. I have been browsing on this network, reading lots of accounts of people who have had doctors say stuff like that to them, and they have gone on and lived for a lot longer. They are still alive, in fact, since they were writing on this network. One person said that the drs told his/her parents that he/she was "terminal" but the parents didn't have the heart to tell their young child. The person said that if they had said that he/she was terminal, he/she would have probably given up and died. But instead he/she fought and is still alive today...many years later. I believe that one of the most important things we can do for our kids is to hold on to hope with them. How terrible would it be if no one believed with you that you had a chance to beat it? I always tell my son that I believe he is going to get married and have a family and wind up an old man. He had a lot of doubt at first, but now he believes it too.

Waffles/Jenny....I am so grieved to her that your mom, Cindy, passed away. She left an amazing legacy...you, her brave daughter. I hope that her memory brings you strength and comfort. And I hope that I am to my son David, what your mom was to you. Not all people who are battling cancer have moms who stand in the gap and fight hard with them.

David had his regular 3 month MRI and oncology appt. on Thursday 9/30 and I am very grateful to God that I can say there was no change and no tumor growth whatsoever. It's been a year and a half since diagnosis. We are staying on the same treatment protocol....Temodar for 5 days, then 3 weeks off. The dr is very pleased with David's status. I'm pretty sure that the dr is surprised that there is no visible tumor present. I hope and pray that we can continue to surprise him.

Love and peace and blessings to you all,
Cindy

tommybear
Posts: 112
Joined: Oct 2009

I cannot believe that you were spoken to like that! That is the most inhumane thing!

There is always hope, there are miracles, good things do happen. How sad for someone to actually be a doctor and respond to you like that.

I had stereotactic radiosurgery in December 2009 and now am having some issues with swelling and the tumor appears to be enhanced, but my doctor said that is not abnormal. He told me that normally the swelling and fluid buildup will reduce within a few months - I am on steroids right now to help. So, yeah, it might not be possible to see exactly what is going on with the tumor right now, but that doesn't mean that it has been "upgraded".

And, with your daughter being so young, I am sure that she has got to be so much healthier and energetic than some of us "old-timers" (I'm 39!)

Wishing you peace and hope and encouragement....

Michele S.

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

Thanks for your kind words and I do have alot of hope and my daughter is a fighter. She is the strongest person I know. I have a sweatshirt that says " I wear gray for my hero" and thats how I feel. She is my hero. Miracles do happen and I have prayed for one. The Lord hears crying hearts the loudest.

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

I wish I could say that I am shocked about the cold way you and your family were spoken to. We were told my husbands tumor was "in-operable" and we should "observe".

I am here to tell you that 4.8cm tumor was reduced to 5mm and he has been back to work since Aug 11, 2010. No neuro deficits whatsoever. So much for "in-operable".

God is the ultimate physician and healer.

I pray for you all (I have a 12 yr old daughter also). I truly believe the patients attitude is 75% of the battle.

Carrie

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

I agree with you. My daughter said that she is not going to die. She is so strong. I like your logo. I have a sweatshirt I wear that says that. Because they are heros. They go through so much. I believe in the Lord and I pray that he will heal her. It's in his hands.

jhope13
Posts: 1
Joined: Oct 2010

Hi,
I just want to say that if you keep up with a hopeful attitude anything can happen. My father was diagnosed with an inoperable AA3 in December of 2004. He was told by the local hospital that he only had between 1-3 years to live. We weren't happy with that prognosis and wouldn't accept it. He went to the National Institute of Health in Bethesda and was put into a trial. His tumor all but disappeared for about a year. He then came down with aspirgillus and they had to stop all treatment for his tumor in order to treat it. During that treatment his lung collapsed and due to his medication he had a pulmonary embolism. His brain tumor then came back because he was off of his medication for a period of time. Since then his aspirgillus has cleared up and we can concentrate on the brain tumor. Right now it has been kept at a constant size for the past 2 years and hasn't grown anymore. At this point that is the best we can hope for. All I have to say is that he is 55 and through all of that treatment he has only missed maybe a month of work. He is still working full time and is able to function very well. He occasionally has seizures and will always slur some of his words but from the beginning he has had a positive attitude. I truly believe that his unwillingness to give up has gotten him this far. He is going on 6 years and I don't doubt that he will have another couple of decades ahead of him. He is by far the strongest person I know. Keep Faith!

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

I'm glad to hear that your dads tumor is not growing. What is the trial that he is on? do you know what medications he is on? We go to Dana Farber/The Jimmy Fund clinic in Boston and we are going to try a 5 drug regimen, 2 of the medications are a form of low dose chemo and the other 3 are not. Everyother week she will have Avastin through her port that they just put in. We were told the same about the 1-3 years. I think they say that to everyone. They said the same thing to my neighbor who has breast cancer and it has been 7 years for her. Cancer is an awful disease and it is horrible that people have to go through all this treatment. It's not only hard for them but their families as well. I think my daughter is stronger than I am. I wish I could take this away from her. I would gladly switch places with her as I have lived already. I'm not old by any means, but I have experienced the life that I want her to experience. We will not give up. We continue to pray, and believe that the Lord has good things planned for her.

Subscribe to Comments for "anaplastic astrocytoma grade 3"