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Astrocytoma Grade III-Survivor

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

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

Jose

bear2222
Posts: 7
Joined: Mar 2008

I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

heyrabbit
Posts: 1
Joined: May 2008

hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

munroe
Posts: 4
Joined: Nov 2008

I got graded a III after they said my AA was originally a II so craniotomy and complete resection was done. I have 3 year old twins and a 16 month old. I'm wondering about the stats you read, are they as bad? how is your story panning out?

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

I was diagnosed 20yrs ago, your not a statistic, my children where not much older than your kids are now, now my two son's are in college. You can live to see them become young adults. Keep the faith.

RCOLUCCI
Posts: 1
Joined: Nov 2009

IT'S ENCOURAGING TO HEAR THAT YOU ARE A TEN YEAR SURVIVOR. MY DAUGHTER WAS DIAGNOSED WITH A GRADE 2 ASTROCYTOMA IN THE LEFT FRONTAL LOBE ALSO A LITTLE OVER 3 YEARS AGO. SHE HAD A CRANEOTOMY AND MRI'S AT FIRST EVERY 3 MONTHS THEN 6 MONTHS UNTIL DECEMBER OF LAST YEAR IT GREW BACK.THEN ANOTHER SURGERY IN APRIL OF THIS YEAR. IT WAS UPGRADED TO STAGE 3 SO THEY DECIDED TO DO RADIATION THEN CHEMO. SHE IS CURRENTLY DOING CHEMO (TEMADOR) FOR 7 DAYS EACH MONTH UNTIL JUNE OR SO...DOCTORS RECOMMENDED 12 TO 14 MONTHS OF TREATMENT. DOCTORS GAVE HER A STATISTICAL 3 TO 5 YEAR SURVIVAL. SHE HAS 2 SONS 2YRS AND 5YRS. DO YOU HAVE KIDS AND DID YOU HAVE A SIMILAR SITUATION? WERE YOU GIVEN THE SAME SURVIVAL RATE? DO YOU HAVE TO TAKE ANTI-SIEZURE MEDS? DID OR DO YOU HAVE ANY COGNITIVE AFFECTS?

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

My story is similar to yours in that I also have AA3. My story is below:

In 2009 I started having severe headaches. I first noticed what looked like Kaleidoscope shapes in my right eye, and shortly after they would stop I would get nauseous and immediately get a severe headache. This happened again a few days later, so my Husband called our Eye Dr. because it was time for both of us new contacts. They got us in that day, and the Eye Dr. stated she felt I was having Ocular Migraines, I got a new RX for contacts as well as glasses, and we were on our way. Not even a week later I was sick again with a migraine and I went to my Regular Physician who was also a Physician that I had worked in his office over 7 years before I changed jobs. So he knows me personally, and he checked all my reflexes, etc and stated he felt they were Migraines as well; however he gave me a medicine for migraines to take as soon as I started seeing the spots so that it may help reduce the migraine pain when it came on. Then again not even a week later I'm sick and have another headache, and this time my neck is killing me as well and feels knotted up. I again make an appointment with my Personal Dr., and he examines my neck and states that I am having muscle spasms in my neck as well as Stress Migraines. He gave me meds to help with the neck pain, but I am not good on meds, and I had to work, so I only took them at night so it was not really helping that week. I took the next week off work to take the meds and relax per my Husband's instructions :) That week off I was sick 3 of the 7 days. I decided on the Thursday of that week I was scheduled off work that I was going to just go sit at the ER to let them do some kind of test or something because I knew something more had to be going on. That Thursday I was dressed and ready to go then said "I will sit there all day and they may not do anything" So I decided to call my Personal Dr. again, and ask him if he would just schedule me some tests. They office told me he would be out till Tuesday, but they would leave him a message. So I was waiting till Tuesday now. I went back to work the next week, and every time I would stand up I felt I would pass out. Well as fate had it, Monday night my 2 year old woke up crying so I went and laid in her bed to get her back to sleep at about 3 AM. As I laid there with my arm on her getting her back to sleep I felt the worst pain in the front left side of my head. I honestly thought I was having a Brain Aneurysm, and was wondering if I should get my Husband. It eventually eased and made me feel a little less worried about aneurysm. By the time it was time to get up and get dressed; I was nauseous and could not force myself to get dressed for work. My husband said we are going to ER. He took our baby to Pre-School, and came right back and took me to the ER. This was October 20th, 2009. They got me back real quick for an ER, and had me having a CT within like 30 minutes, however ER Dr. said he just wanted to do that since no one else had, but he felt it was just Bilateral Migraines and we would be on our way soon. (Notice this is the third different migraine I have heard in the past couple weeks.) Well within maybe 30 minutes he comes in and says they see something in my left frontal lobe right in the front and did not look to be doing anything but lying right on top of the brain. Not entwined or anything. But that they are not sure what it is. It could be anything from an Infection to a mass. He also stated that there was quite a bit of swelling on my brain as well. He told us they will be coming to get me for an MRI and that they will know more then. About 30 minutes later they have me in MRI, and take me back to ER. No time later he comes in stating there is definitely something there that looks like a mass, and they would like to send me on over to there main facility downtown who has the Neuron Dept. I was admitted to the Main Facility, and they started Steroids immediately to reduce the swelling on the Brain. At first they were talking surgery by the end of the week, however after no headaches at all once Steroid started they released me the second day to continue the steroid to reduce as much swelling for the operation to go more successfully. The did the surgery October 29th, 2009, and when my wonderful surgeon come out to inform my Husband, and Family (I had 49 people in surgery waiting), he stated he felt after looking at it under the microscope it was maybe a Stage 1 or 1.5 tumor. It had a cyst on the front and back of it, and he removed all three due to cyst was made out of same tissue, but they were all just on top of the brain. He stated the tumor was the size of an egg. He stated the final reports would take a few days but he felt confident he got it all, and that it was one that may never grow back and if it did it could take my lifetime to. The MRI the morning after surgery shows he got it all! I was in ICU 2 days and in a regular room 2 days and was released to go home. We went to my follow up on November 11th, 2009 (two days before my 33rd birthday), and the final report states it is Stage III. The surgeon told us he is sending me to UAB in Birmingham, AL within the next two weeks for a second opinion as well as to get a treatment plan together. He stated he was still hopeful they will say it is only a Stage 2 or even the initial thought of Stage 1 or 1.5. At UAB to get the final diagnosis and treatment plan they stated in fact it was a Stage III, and not a Stage 1 or 2 like the surgeon was hoping. I went to UAB and they suggested that I do 6 weeks of radiation and during the 6 weeks of radiation I had to do a low dose of chemo called Temodar every day for the 6 weeks. Before the radiation began, and only a few days after I got back from UAB, I started having seizures. UAB started tapering me off of my steroids, and they tapered me off too quickly which is what we feel caused the seizures to begin. I had over 20 seizures everyday for 6 days. When they finally increased the steroids to where they had it, the seizures went away. Praise God I have not had anymore seizures since then, and I no longer have to take Keppra to prevent seizures. The radiation made me really tired and it also made me lose my hair in a couple of spots. My hair has grown back, however the area that had the direct radiation is still basically bald with thin almost nonexistent hairs. I just part my hair to the other side, and you cannot even tell. Hair is not more precious than life!! I ended the radiation at the beginning of 2010, and once I was through with the radiation, I had to take the Chemo 5/28 days for a year, and they more than tripled the dosage. If I started the chemo on a Monday took it for 5 days, I would not be able to get out of the bed for 7 days. This was the worst part of the cancer treatment for me. It is not the same for everyone; however it was really rough on me. The Dr’s will give you meds to help cope with the nausea, and I was even given Marinol, which is pill form Marijuana. I did not like it and actually just flushed those a while ago. My chemo ended in 01/2011, so I have been off of it for almost a year.
I have to go to UAB every 3 months for follow ups, but by the Grace of God there has been no reoccurrence. There is a small cyst that has shown back up, and they found it back in 2010, but it has not grown at all, and the tumor site is stable and healing. I just had my last follow up 10/19/11, and all was as good as or if not better than the scan before! Remission for two years on 10/29/11!! Praise God!!!

I also had a song that came to mind while I was sick. It is "Lord Prepare Me, To Be A Sanctuary, Pure and Holy, Tried and True, and with Thanksgiving, I'll be a LIVING, Sanctuary, For You!” I also have given my testimony at my church, and it is on YouTube as well. Not sure of the link on YouTube, but if I find it I will put it on here. There is not an expiration date on our lives that can be set by any Dr. Our fate is in the hands of the Man above, and everyday I give thanks to God for allowing me another day!!

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

Hi Chicken2799:

My daughter is currently completing the chemo phase for her Anaplastic Astrocytoma. She also had surgery and radiation. Do you mind telling me what drugs you took? Did you have a port? Sarah is doing Irinetecan and Avastin 2x a month via infusion. Then on the beginning of her last infusion for the month she takes Temodar for five days. Her main neuro-oncologist wanted to stop the Temodar because she gets so sick from it. It seems like I read other people blogging that it works though. Did you take Temodar? I am happy for you and your family. God Bless you. Thanks for sharing.

Edna

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I only took the Temodar for 5 days every 28 days. It made me really sick as well, and they gave me Zofran, Marinol, Phenergan as anti-nausea meds. None of them really worked and I was sick 7 days a month. I dreaded taking it every month, and had to take it for a year. I ended it in January of 2011, and so far there has been no reoccurrence of the tumor. I did not have to have a port or any kind of IV Chemo. Just the 6 weeks of radiation and the year of Chemo. I took a small dose of the Temodar 75 mg when I was doing the radiation and had to take it everyday at that time. After radiation I went to the 5/28 schedule and was on a much higher dosage of the Temodar. I want to say it was 450 mg, but I honestly cannot remember right off. Trust me I dreaded taking the medicine each month, and I feel really bad that I actually flushed a pill or two during the year of treatment. I just could not force my self those two months to take the last pill knowing it was going to prolong the awful feelings. She will make it through it, I did! I will not tell you to keep giving it to her due to I was not on the other meds, but so far all is good on my scans.

How long has she had her tumor? I am sure I have read her story, and I am going now to reaf the profile!

I will keep you guys in my prayers, please keep me in yours as well!

Michelle

(The chicken2799 is my email address, and I hate it being my name on here! Any idea of how to change it?)

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

Hi:
Sarah was diagnosed in February 2011, when she was 17. She is now 18. She had brain surgery, where they got 85-90% of it, 6 weeks of radiation combined with the Temodar. Then she had one month off and then we put a port in her chest. 2x a month she has an infusion of Irinetecan and Avastin. During the last infustion she takes Temodar for five days that week. It is supposed to be 400mg a day. These last two months we reduced it to help her feel better. It did make her feel better. The neuro-oncologist wants us to stop the Temodar because she says there is no real proof that it works past 6 months. She says it only helps 1 in 10 people. We are keeping it going with our oncologist in Alaska. I just feel sick with worry when the neuro-oncologist tells us that. She wants us to think about our daughter's quality of life and keep talking about the possibility of a reoccurrence. All I think about is my daughter's life! Our Life! I am very thankful you shared your story to keep hope alive for me and all of the other patients and family members. I will pray for you and thank you for praying for Sarah. God is good! I know he is. I will continue to claim victory for Sarah and all people fighting this dreadful illness. God Bless you Michelle.
Edna

CDargz's picture
CDargz
Posts: 3
Joined: Feb 2012

Hello Michelle,

I recently (09/2011), had an AA3 resected from my frontal lobe. The plan post-surgery was to do 6 weeks of radiation concurrent with 6 weeks of Temodal. Now, I am currently taking these nasty pills 5 days consecutively each month, for the next foreseeable 6 month to a year. I seemed to be doing fine on the initial (dilluted 75%) doseage of Temodal, but as soon as they upped me to the full 380 mg doseage, it felt like being hit with a truck.

I am a recreational marijuana smoker and even that wasn't enough to offset the nausea or spur and increase in appetite. What bothers me the most is that Cytotoxic drugs like the chemotherapy are non-discriminatory: meaning they kill all cells, not just the cancerous ones. It's essentially like dropping napalm onto the approaching scourge and NOT pleasant at all.

I am very glad to hear that your scans are clear and that you've managed to fight the worst of this nasty treatment! Hopefully, with more research, future survivors can do so with a medical regimen that doesn't feel like a full frontal assault on their bodies.

Best wishes:

Chris from Toronto Canada

Eng
Posts: 11
Joined: Jul 2011

If you like please give me your personal email address and I will give you very very good info and names to help you with the type of issue you and your family have. My brother, 23 years old, has exactly same thing and ONLY ONLY 1 doc could save his life every other hospitals across North America could not take his tumor out.

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

Hi:

Thanks for your email. I am very open to hear the information you have about your brother's healthcare. God bless you.

Edna

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

hello my name is Jackie and i had aa3 initally in 1/28/11 they gave me a full resection, and temador and radiation. By the next nov. i was in surgery. He said they came out with a fairly new drug avastin, but he only wanted me on it if the temador stopped working so unless I got too sick to stick with the temador bc it had better results.

BenLenBo's picture
BenLenBo
Posts: 142
Joined: Feb 2012

My son is taking Temodar, the 5 days on 28 off. So far he has had no side effects from the drug. He was diagnoised September 25, 2011 with a Grade III Oli. 99% percent of the
tumor was removed from his left frontal lobe. He has suffered no effects, is good as new. He was given 6 weeks of radiation and Temodar at the same time. Took motion sickness pill 20 minutes before the Temodar, and ate a health diet, 3 meals and snacks. The temodar is designed to kill the bad cells in the brain, but will also kill other good cells. Bad cells will die, where the good with recover. Benjamin's enhanced MRI after 6 weeks of treatment showed no cancer. He had 1p/19q deletion. Hope this helps!

amyd47's picture
amyd47
Posts: 7
Joined: Apr 2013

I have AA3 (left frontal lobe).. just finished with my 6week radiation and chemo treatment on 26mar 2013. The chemo I took was Temodar. I just started taking it again yesterday (120mg) for 5 more radiation treatments im getting on a different machine. It does "floor" me me too. I feel very neasous and drained the whole time and have little to no appitite. I dont have a port or anything like that. I take it now at 8pm everyday and I sleep through most of the "yuckness". What I am hoping helps is that I take 8mg of Ondansetron (zofran whichever you know it by) and it does help me ALOT!

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

hi edna ! i've seen some of your post here at csn. You serve as an ispiration to me because you're a very positive person.  My mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there.

corry1964
Posts: 4
Joined: Jun 2012

Your story sounds exactly like mine. I was diagnosed with a brain tumor in October 2007. My Dr. believed it was a low grade tumor. It was located on my right frontal lobe. I chose to have surgery a soon as possible. October 31, 2007 I had the tumor removed and a week passed and the day I got my staples out the Dr. called me with the news. Grade 3 Anaplastic Astrocytoma. I had 42 radiation treatments and approx. 12 weeks of chemo (Temodar)All my MRI's since have shown all clear. I can relate to the kaleidoscope vision you had. It was so hard to explain the sensation I was feeling. I had that symptom for many years before I finally tried to explain it to my wife or Dr. It would happen when I was trying to focus on a conversations with a client, converstions with my wife. It just kept happening more and more frequent. It also happened while I was driving. I have explained it as tunnel vision, I was able to function, and I knew it would stop in a few seconds. My doctor said I was having mild seizures. I had major neck pain, muscles knotting up, constant trips to the chiropractor, which didn't help. I have made several bad decisions over the last several years which resulted in divorce and alienation from my children. I remarried 1 year before my diagnosis, and my life could not be better. All things happen for a reason and I see why I went through what I did. I am a better man today because of my cancer. I wouldn't trade my experience for anything. I have not seen my son since he was 12 and he is now 20. I am however walking my beautiful daughter down the isle this July 7th. Our relationship is so strong and I love her so much. Cancer has changed me in so many good ways. I will never question why me. Why not me. Thanks to GOD and Columbus, Ohio Riverside Methodist Hospital and all the doctors and nurses that cared for me for giving me the rest of my life.

amyd47's picture
amyd47
Posts: 7
Joined: Apr 2013

I am just getting used to the site and reading some other stories. Im not sure I had any warning before the sezuires but the kaleidoscope seems to ring a bell. Can you tell me what you mean?

cecilp
Posts: 1
Joined: Jan 2012

I have had a GRd3 AA since 18th of Jan 2008. I had to operations ( second op they inserted gliadel wafers) I have been on Temazolomide for 4 years now. My cancer is in a dormant state. So far so good. Good luck to all of you fighting this battle. I had a a poem tattooed on my left arm which reads: Cancer survivors are cancer overiders cancer ills often form strong wills lethal chemo for the cancer evil cancer survived is a life revided
and a grey ribbon with the words searching for a cure. I found out i had the cancer when i was 24 and i am still going strong soon to be 28

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

Hi:

Thanks for sharing your story and giving others hope! We need to hear of others overcoming this dreadful diease. How long will you take the Temodar? Where do you receive treatment? Sending God's blessings to you.

Edna

EFarley1210
Posts: 8
Joined: Dec 2011

Im 51 yr old woman. I was told that my type of tumor is hereditary. I had an aunt with brain cancer. ( she died of a herat attack 6 years into her recovery. I was told less than 3% of woman get the type of tumor I have and that if I was going to get it, It would be before my 50 s I was 48. My dad died at 48 from cancer PETRIFIED.

I had no syptoms no headaches. I just fell out at work one day. 12/10/08 I woke up to be told I have Brain Cancer. WTH ? You got the wrong room. I underwent the chemo (Temador) and radiation with the mask. I took the aggresive route Surgery chemo and radiation due to the size/location of the tumor. They were able to remove 80 % of the tumor and so far NO new growth. I do however have side effects. PAIN is one of them. I can simple touch something and WOW, ouch. My cognitive ability has been affected and my hearing a little. Eyes are good.

I am on pain medication which helps to alleviate most of the pain. Most days are great Im walking and swimming I can still drive. I am able to cook & clean and care for my animals. Life is good. I am greatful to be alive and to have found this cancer at a Grade 3, I have three grandchildren I hope to see grow up and have families of thier own. I want to live.

I TRY to keep a positive attitude. I try to stay busy and surround myself with a positive unstressfull life and people. LOL. Currently expecting litter of Puppies and I have plans for a vacation to Myrtle beach. I swim 2-3 times a week and walk 2-3 times a week. I eat cancer fighting food ( meal and snacks) and use as much herbal medicines, teas as I can.

My spouse of 21 years could not handle diagnosis and left. I didnt realize my own strenght until then. Scared and confused I fought back with Gods Help ( anger is a great motivator) Forgiveness has been my inspiration and I have managed to survive 3 years 4 months with Gods Help . Not just survive but Live. Working on Bucket list. Just in case but Im optomistic. Thanks everyone for sharing your personal stories. They help.........

BOSBEK
Posts: 4
Joined: Feb 2011

Thanks for the encouragement. My husband is being treated at Mass General Hospital. I must say that everyone there has been wonderful. Next Tuesday he will have the last of 33 radiation treatments. He has been taking a low dose of Temodar to help the radiation. He will then rest for four weeks and and begin a double dose of temodar 5 daysfollowed by 23 days off and that dosage will continue for a year. Stevens' tumor was in both the left frontal and temporal lobes. He had a partial resection. Have you had any recurrences in that time? What was your treatment regimen?
Thanks for your help!
Catherine

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

i had a grade 3 also. Last Januray they completely resected it out of the frontal lobe I had problems with thinking of what i wanted to say, which fixed itself soon after. Eight months later I started noticing mini seizers again so i got tested and surely enough I had a reoccurance. This time due to swelling i couldnt feel my right side for a week, then it took another week for me to be able to learn to walk again. Doing much better now, well except the 5 double dose days of chemo. As of now im going on almost 2 months cancer free again

EFarley1210
Posts: 8
Joined: Dec 2011

oh my goodness. I can described an item ,what it does, but for the love of pete I cannot remember the name of it frequently. Guess what ? dont worry about it. I know it frustrating I have learned to laugh at myself. Laughter cures what ails me. People who know me UNDERSTAND. For those who dont I ignore them. I drink Acai on a daily basis have a cup of expresso with breakfats for a little jump start. Look up coffee nd cancer Surprise! Find a cancer fighting diet that works for you. My outlook is IT CANT HURT YA. Every little bit helps.

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

HI: My daughter had a left frontal tumor as well. They could not surgically remove it all. She had surgery, radiation and now chemo. Where did you have your treatment? Did they take all of the tumor?

Also, how was your recovery? Any information and hope helps! Thanks and God Bless.

Tomaszrubin2
Posts: 2
Joined: Jul 2011

Do You smoke marihuana mate ? x

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

Hi:

No she doesn't. She won't even use it to help the nausea. I hope you are doing well and getting better. God Bless.
Edna

CDargz's picture
CDargz
Posts: 3
Joined: Feb 2012

I have been a recreational marijuana user since my teens (30 now). Once the cancer was discovered, I was able to get priveledges with a local compassion club. Unfortunately even the most PRIMO Indicas were not enough to offset the full grossness of my chemotherapy; but they definately helped. Oddly enough, all of my doctors have been of the 'anti-marijuana' school of thought, despite prescribing pill-form canibinoids to a great deal of their patients. I guess pot's OK if it's not called such, and so long as someone's making a buck off of it.

All the best to your recovery!

msjadeja
Posts: 1
Joined: Jan 2012

hi, my mother having atrocytoma grade-4. please help.......what we have to do?
my mail : msjadeja@yahoo.co.in

brandonloveschelsie
Posts: 7
Joined: Mar 2012

Are you still out there? I am going through treatment for grade III tumor and had complete resection,

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

Hi Brandon-
We are here. I am happy for ou that you had complete resection. Will you need radiation? This is a good site to learn about your illness and to receive support from other patients and their families. Try and stay positive! God Bless you Brandon. My 18 year old daughter is battling brain cancer too. Initially she was diagnosed with AA3, than we got a second diagnosis of Glioblastoma, a grade 4. She has surgery, but they only got 80-90%. Then she had 6 weeks of radiation and Temodar. Now she is in the maintenance phase of chemo for 12 months. It is a rough ride, but we try and stay positive. We also take supplements from a naturopath who is experienced in cancer. Enjoy every minute of life!
Love, Edna and Sarah

brandonloveschelsie
Posts: 7
Joined: Mar 2012

I had a complete resection. Anaplastic Oligendrioma a small portion of which was grade III and the majority of which was thought to be grade II. I am getting ready to do radiation for 6 weeks and chemo for a year. I meet with the radioncologist and oncologist next week to work out the particulars. Keep your head up before this I knew of no such thing as a brain tumor especially not brain cancer. Two people I know with GBM grade IV survivors of 12 & 14 years with no reocurrance. Prayer is powerful.

dougbankston
Posts: 2
Joined: Aug 2013

Hello, my daughter (21) just had a GBM taken out a few weeks back. her 3rd radiation treatment is today.. I'm scared... Please talk to me, send me an e-mail about your experiences etc.... give me some advice... thanks   Doug    dougbankston@yahoo.com

 

Treesa
Posts: 1
Joined: May 2012

nearly 2 years ago my dear friend had a seizure that put her in the hospital in a coma. They did tests and confirmed that she had "low grade" brain tumor (non-cancerous). They put her on anti-seizure meds and had her follow-up with MRI's every 3 months. Tumor remained same until about a year later, when she began having more mini seizures. They increased seizure meds and gave her steroids to reduce swelling. within the 2nd year it was clear she was not improving and the next MRI came back showing a "more dense" tumor. it did not grow bigger just became more dense so they did a biopsy. The biopsy results were grade 3/4 Astrocytoma. She started oral chemo (7 days/wk) and radiation (5 days/wk)for I think 35 days. Once treatment completed another MRI showed tumor did not grow or shrink, just densor. During the last year she developed Aphasia. She is really having a terrible time with this, she cannot communicate well. Sometimes we have no idea what she's trying to say....consistently using wrong words that make no sense to us. She, however, is very aware of what's happening to her, understands everything going on around her, and understands what you are saying to her...she just cannot communicate back...cannot find correct words! Very very scary. She no longer takes chemo. She is still taking seizure meds and just began Avastin treatments 2 X week. She is going for her second treatment this week so hopefully we will see improvement. Her dr. is confident Avistin will help. Has anyone had any luck with this medication? Supposedly it cuts off the blood flow to the tumor preventing it from growing.

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

Hi:
My daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. A 2nd opinion in March of this year thought it was Glioblastoma. Either way, the treatment was appropriate. She had surgery, they got 80-90%, radiation and then chemo for 12 months. She had Avastin, Irinetecan and Temodar for the meds. The combo shrunk the area and she remained stable. Before we knew she had a tumor she was also having trouble talking. It is a horrible thing and very scary for them.
We had an MRI yesterday, but do not know the results yet. I am worried, but trying to be faithful. Last night, she said she was having trouble talking again, can't say the words she wants to say. Oh My! I am trying to remain calm. That was how the whole thing started. She had her last chemo at the end of April this year. I have heard once you stop the chemo it comes back. I pray not. I pray for Life in Abundance for my daughter. She is only 18. I wish you the best. It is a scary, roller coaster ride. Find you faith, it will calm you during difficult times. God Bless you.
EDna

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

I just wanted to let you know that I am praying for you and your daughter. The waiting for the MRI results can sometimes be worse then getting the results. My daughters MRI is coming up in the beginning of June and I am not looking forward to that. Have her doctors talked to her about her end of life wishes?

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

Hi:
They have not discussed that with her or us. Just the thought of that terrifies me beyond words and I know you know all about that. I think of you often and pray for you and your daughter. We are just trying to look forward until we know otherwise. Love to you and yours. God Bless you Tina.

Edna

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cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Edna.

Thank you for all the times you've commented on my posts and encouraged me. I really appreciate it!

How is Sarah doing? I don't know if you posted and I missed it...but I don't remember seeing a post about her MRI or her Pet scan. I thought she just recently had both of those done? I really hope and pray that you received great reports from both of those tests.

Love and blessings,
Cindy in Salem, OR

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

HI Cindy Sue:

Sarah's May test showed no reoccurrence. I am very thankful. I posted that but I don't think anyone saw it because no one commented.
I remain faithful and always try and look forward on her life. We try and pray every night at bedtime. We pray for you and David and all of the beautiful families on this website. I pray for peace and no suffering.
I am so sorry that you and David have been suffering so. I have no words to take your pain away, but I will be your prayer warrior. I will send you blessings every day so please watch for them.
I am sorry that you had to give up David's apartment. I am so thankful that you can be with him through all of this. You are a wonderful Mother. Enjoy every minute and find the good every day with David.
I remain in faith.
Love, Edna and Sarah

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

Thank you very much, Edna. I really appreciate your prayers. We have been in the ER all night because David had a pretty bad seizure. We are now waiting for the results from David's CT and chest X-ray. It's only been 13 days since we were here for a seizure. I think that David is fighting an infection or a cold or still battling pneumonia and that's what brought on a seizure.

Even though our lives are filled with pain and sorrow, our faith and trust in God remains. Things didn't go the way I hoped and prayed and begged God for, but I still trust God with all of my heart and I have no doubts regarding His unfailing love. I know that eternity is better than this life. But right now all I can see is David's condition, and the pain and heartbreak is overwhelming. But I'm not done fighting, and neither is David. It might be a losing battle, but we're not giving up just yet.

I am so glad and I'm rejoicing with you that your beautiful daughter Sarah is doing so well! I've read several accounts about people living long with AA3 and I'm praying and believing that Sarah is going to do the same! I hope you and your family have a wonderful, blessed summer.

Love and blessings,
Cindy in Salem, OR

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

Cindy Sue:

I am sorry the you are still struggling with those seizures. I like that you wrote that you and David will keep fighting. Fight every day! I am so glad that you have the strength and resolve to do that. I am sure that fighting spirit of yours helps David more than you know. Keep your faith. I feel like we do not always know why things are happening the way they are or even what will happen next. But, we know that God is good. Enjoy every minute together. God Bless you Cindy Sue and David.

Love, Edna

EAM
Expect A Miracle!

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

Thank you, Edna.

I just wanted to let you know that David had an Avastin infusion on Tuesday, and this time it seemed to help. David is using his left side a little more, and he even sat outside in the sun with some family and friends this afternoon. Thats a big improvement! David also wanted to go out to dinner to one of his favorite places, so our family all went and we had a lovely time. It wiped David out, but he had a good time and I'm so grateful for the day we had today.

We will be getting an MRI the first week in July. I'm trying to mentally prepare myself, but it's hard. I've always hated and dreaded MRIs and I'm really struggling with fear about what this one will show.

I'm continuing to pray for you and Sarah! :)

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

Just wanted to say that I am so happy to hear of Sarah's good MRI report. That is wonderful and I hope and pray that all further tests are the same. Your story gives hope for all those who are facing this terrible disease. Even though our son didn't survive, it gladdens my heart when I hear of someone who is beating this.
Connie

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

Connie:

Thank you for the kind words. We are relieved every time. But, I still become afraid. I try not to think of what might happen. Worry just robs you of today doesn't it? Thanks for staying in touch with everyone. I hope that you and your husband are muddling through your grief together. I cannot imagine Connie. I think of you often. I think of everyone on this site and send them God's blessings. Take Care Connie.

Love, Edna

amyd47's picture
amyd47
Posts: 7
Joined: Apr 2013

I am just finishing radiation and chemo..same location, left frontal lobe. What was your treatment and treatment results like?

mjcallah's picture
mjcallah
Posts: 7
Joined: Aug 2012

Hi,

I am also a AA Grade III left frontal lobe survivor (13 months).  Have done well on Temodar 5/23 maint. cycle with no deficits, no side effects and no recurrence.  Working 2 jobs, working out every day at the gym, and taking good care of myself.

Wondering about life after Temodar.  My maint cycles will end after 2 more cycles (just finished cycle 10 of 12).  Can you recommend anything I can do after maintenance ends.  Suggestions for continued success against this horrendous beast?

Look forward to hearing from you.  God bless us all!

Mike (Omaha, NE)

 

 

Hope for Adam
Posts: 1
Joined: Oct 2013

My Son, 33 years old with a wife and 4 children was diagnosed with AA 3 this past February, after have a few seizures, at first he did not know what was happening just said he felt wierd.   His family Dr sent him for all kinds of blood work but never thought to check his brain.   I guess he wasn't explaining his wierdness correctly so no one understood that it was seizures.  Anyway, I  finally convinced Adam to go to the hospital, it was a long night on Feb 2nd but they knew within hours that he had a tumor or something.   An MRI a couple of days later confirmed in and surgery that removed 1/3 of it followed on Feb 7th.   Feb 22nd he was given the prognosis.  Surgeon said the norm was about 2-3 years and the radiologist onocology said more like 5 years is the norm.   Since then Adam had 6 weeks of radiation with chemo (temodal) that was finished in May and now he takes Temodal (chemo) for 5 days with a 23 day break for 6 months.   They say the MRI looks good and no change from July which they are happy with, but they are very vague with their information.   Adam has a very positive additude and although he has not worked since Feb, as he was a carpenter/ journyman framer he's enjoying life and spending as much time with his family as he can.   He has not given up hope as he would like to see his 2 boys and 2 girls, ages 5 - 11 finish school!!!   I would like to try some naturopathic medicine, not sure if anyone has anexperience or tried anything that has worked.   Adam has also changed his diet, tries to limit his sugar and eats lots of fruit and vegtables.

Thank you for reading my story. 

 

MisV
Posts: 1
Joined: Oct 2009

My tumor is in my right frontal lobe. Had my 1st seizure on Dec 10, 2000 & surgery on the 14th. My second surgery inAug2001. Yes I do have time issues. i speak out of line lots of times & blame it on the fact that my right frontal lobe is missing. My family & friends joke about it but, it bothers me a times. Misv

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

I have been living in a fog for weeks. It is driving me crazy. I have right tempral lobe GBM grade 4. 1st resection on 1/7/11 2nd resection 1/17/12

dougbankston
Posts: 2
Joined: Aug 2013

My daughter (21 yrs old) just had a gmb taken out (frontal lobe) a couple weeks ago. her 3rd radiation treatment is today... Just curious,

how are you doing? what's a "resection" ???  Doug

dougbankston@yahoo.com

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