Cancer Survivors Network

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

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?

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?

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!!

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

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?)

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

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

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.

Hi:

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

Edna

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.

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!

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

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

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

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

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.

Do You smoke marihuana mate ? x

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

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!

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

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

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

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

My daughter had a grade II astrocytoma removed in March. Dr. said he removed it all and she needs no further treatment other than repeat mri's. He said if it did come back it probably would be a more aggressive tumor. He gave her a 50-50 chance of it coming back. Did your dr. tell you that

Hi, I am happy that your daughter is doing well.

Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

I wish your daughter and your family the best.

Sincerely, Laura, Michael's Mom

Hello Laura, I'm very pleased to hear your son's survival story. Can you tell us please what was the stage of his astrocytoma? My sister is in stage 3 and I am so hoping she can make a similar recovery. Thanks.

Hi How is your sister? My son was just dx with stage 3 Just wanted ot ask some questions

Laura,

I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
Take care and good luck to you and your family. I will be buying your book when available.

Diane (momfor2)

Laura,

I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
Take care and good luck to you and your family. I will be buying your book when available.

Diane (momfor2)

Hi Diane,

I know exactly how you feel when it is MRI time. Michael just had his 5 year one and I was still a mess. It is so hard. I will say a prayer for Amanda and know she will be okay. Like you, I had no idea what an astrocytoma was before Michael got sick. Now I know more medical terms than I ever wanted to.

Please be sure to keep me posted. You can send me an email anytime at laura@b-plaw.com

Let's keep in touch.

Laura

Laura,

My son was diagnosed with stage III /giloblastoma. He enjoyed 3 years of stability. Can you tell me if your son had any relapes. Charlie had 2 resection back to back and then a shunt put in. He had radiation /chemo / temadar. He suffers from poor vision and cognative effects. I really am trying to find people who have had relapes.

Linda

Hi. I read your blog and I was wondering how your son is doing. My husband was diagnosed July 2010. He had surgery and radiation and also took temodar. July 2011 the MRI showed the tumor is back on left side and also on the right side. What treatment did your son undergo after recurrence? Thanks Kathleen

Hi Laura, how are you?

My name is Margaret I live in Brazil, I read his statement on a website and would like to speak to you. I read that his son had a brain tumor and thank God he is fine .. He improved the aftereffects of a stroke?

My son operated a grade two astrocytoma in March this year, he stayed with sequels, this was without vision and with hormonal problems.
I'm very nervous, sad, looks like I'm dreaming ...

I'm using Google translator, I'm sorry because I can not speak English.

Do you have MySpace or Facebook?

May God protect your child, and if possible news.

kisses

Margarete

I have AA3 also. Mine is in between the frontal and temporal lobe, deep down in the crease. They say it is inoperable. They did do open brain biopsy on NOv 9, 2010 though, but surgeion said it was too big a chance to go back in, said he would if he knew he could get it but knows he can't so doesnt wanna take away from me the chance that i can enjoy my daughter as i can now. i have short term memory loss too ans i am so forgetful its unbelievable. I was a school bus driver prier to this. I could remember 150 kids names and 2 entire bus routes everyday and i was a s healthy as can be, i was a kidney donor in 1999 and had always been extremely healthy. i first got sick with a strange sour taste all over body on march 3, 2010, second time on June 4, 2010. i was rushed to hospital this time with seizure activities, which took my driving job. i loved my job. started me on radiation and chemo pill temodar on dec21, 2010, then restarted temodar on mar3, 2011 for 5 days every 28 day cycle, now they have started me on chemo IV on august1, 2011 and i am still taking temodar as before.

I am a 30 year old newly diagnosed brain cancer patient from/in New Zealand. I had a 90% debulking from my right frontal lobe on 31 August 2011 and am halfway through my 6 weeks of radiation and chemo (Temodal). So far apart from being substantially bald in the treatment area I have managed to avoid any fatigue or nausea thus far.

I had a Anaplastic Astrocytoma, which I'm told is a grade 3 and reasonably agressive so will do ANYTHING to get rid of this 10% that remains. I am having doubts about how effective radiation is - should I expect it to be gone, or smaller or show no change in my next MRI? I'm so new to this and don't know what to expect so any advice would be greatly appreciated!

My blog details my journey thus far and is at www.wendywoo44.blogspot.com

I look forward to hearing from you

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

Hi I'm 33 years old andvi have 5 fantastic kids I live in wales in the uk I was diagnosed with aa111 on deb 14th this year and had my surgery on 23rd of march they managed to get 95% of it out it was top right superficial and very accessible I've then completed 6 weeks of radio with no chemotherapy yet I've got my first MRI in October since I finished treatment I'm so scared I just want to be ok .. !!

Can you tell us when your sister was diagnosed?

my husband was diagnosed with brain cancer oct 1, 2000. it was inoperable. went through radiation, stereo tactic radiation and chemo therapy. i believe he is alive today because first, we went to the best hospital in our area. get on line and research this for your area. too many families are so stunned that they stick with the place that diagnosed them. this is a big mistake! go to a research and teaching hospital. we drove often 5 days a week for 1 and half hours each way it was well worth it. the end result is that we still have him his children and grandchildren and i are greatful. yes, he has some problems, double vision and numbness on his right side as the tumor was on the left. he was later diagnosed with parkinson's(not a common occurence) actually it is believed that that started before the cancer. that has created further complications. had he only had the cancer to deal with he would still be working, playing golf, going to florida for the winter and pretty much living a fairly normal life.

Hello,
I'm new to this message board so I'm not quite sure about it all. I was curious (maybe you've said and I missed it) where is your husband's tumor located in the brain? I am 23 years old just completed my first chemo/radiation/chemo treatments and I haven't found many places til this that talk about brain tumors. Mine is a grade III astrocytoma located in my Thalamus pretty much exactly in the middle of my brain making it inoperable. I myself have numbness on my right side. It was found when I was 20 and now I'm 23, any infomation you could suggest would be greatly appreciated! Thank You!!

his tumor was near the thalamus and inoperable. he also has experienced numbness on his right side which has never gone away. he had chemo and radiation. the chemo went on for 3 years. actually he had 3 different ones. first tremodar which did not work for him, then he went into an experimental drug which shrunk the tumor but caused too many side effects. his last course of chemo was procarbazine and ccnu. he also has double vision but, had he not been diagnosed with parkinsons' disease he would have continued on with being fairly active. the two diagnoses have no relationship to one another so do not worry about that. i hope you are going to a teaching hospital. also, if you should experience shortness off breath get to the nearest hospital not to alarm you ,but brain tumor patients can get blood clots from i believe, the chemo. my husband got clots in his lungs and they put a filter in the chest somewhere and that was the end of that problem. best of luck. also, i am assuming that this is a primary tumor not a secondary and that is a good thing(if there is such a thing)! i am sure that you know this but just remember they are only treating one cancer not many. it is rare that brain cancer spreads anywhere else in the body but other cancer can spread to the brain. also, get physical, speech and psycho therapy it will help.

would be great to exchange experiences, you can reach me at javigm123@gmail.com

gvillek, don't know if you have been responded to but, want you to know that you need to go to a teaching hospital for the best chance of survival. my husband is a 9 year plus survivor. we went to henry ford hospital which was the best place for brain cancer in or area. get on line and find out the best place in your area for her cancer. it is a kick in the gut and you need to take charge when she is beaten down an advocate for her. you best chance is a teaching and research hospital. go! go! go! and good luck.

It is wonderful to hear your husband is a 9 year surivor. My son is 18 and has AAstage3 and has had 3 surg. to remove all they can see without damange and 5 wks radiation 1 week cyber knife then at the same time chemo then white counts would not come back up so they change chemo and now the PET scan comes up with nothing active ours dr's at Geaorgetown unv say that it a good sign but NIH and Childerns say it has progressed so they want to do a trial med on him please what kinds of meds did you guys get and would you let them do exp. drug trial on your Child or family mamber? Hopeful that We can kick this

All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

Healed and whole in the name of Jesus. Drug Free, Cancer Free.

If I can help in anyway please let me know
God Bless Kitkatkaz

I'm so glad that you are doig so well and I know that GOD is the only one that can help any of us and God's taken care of my son this far and I know he wont let us down. We just have a long road ahead of us Hope its not a rocky one! we also have been to church for a healing pray. You can always help John my son with pray. so he to can be healed and whole in the name of Jesus.

Thank you for for uplifting thoughts
D Steras God bless you also

I was diagnosed with Anaplastic Astrocytoma Stage 3! They found the tumor on October 20th, 2009, and done my surgery October 29th, 2009!

The Sunday before my surgery I to went to church and rededicated my life to the Lord! Then two Sunday's from then (Sunday just past) after my surgery I gave my testimony at church. Feel free to go to facebook and request me Michelle Johnson and there is a link to You Tube to watch my testimony cause I want the world to know the power of Our Lord Jesus Christ!

My treatment plan I have typed out because it is so hard repeating it so much so I will post here for all to know because my journey begins I believe November 30th:

We received a call from UAB today before we left for my Radiologist appointment and they stated that they want me there Monday the 23rd at 11:00 AM. It is a one day appointment. They will review all of my medical records and slides to see if the treatment that the radiologist Dr. Russell, who I went to see today, and the chemotherapy Dr. Becker, that I will have to also see here in Mobile on Wednesday after I return from UAB, all agree on the best treatment possible. I go back to my radiologist Thursday for them to make a mask to mark where radiation goes. They want to do a combination of radiation that I will do 5 days a week for 6 weeks, and a Chemo Pill called Temodar I will take 7 days a week until the radiation is complete. I will see the Chemo Dr. maybe once a week to monitor blood levels throughout the therapy, but they feel this is the best way to aggressively treat and keep the Cancer from returning and spreading. The radiologist is confident that this is the BEST course of action. He is glad that it is Dr. Nabor’s in UAB that will be my second opinion as well as his consultant on treatment. Dr. Nabor’s actually did a procedure on my Radiologist, treatment for something neurological and the radiologist has not had problems since Dr. Nabor’s helped him! My Radiologist has worked with Dr. Nabor's for over 15 years. The radiation treatments they state takes 15 minutes, and 10 of that is just getting me on a flat bed. The actual treatment only lasts 5 minutes. It is not enclosed, the machine is just above my head. They will put a face mask on me that has everything marked so the radiation goes the same place each time, it also holds my head very still so that I can not move it at all to be sure the radiation is only in the same spot every time. The side effects basically are that I may lose hair at the different spots where the radiation enters the skull, maybe some nausea that they can give me meds for, and that there may not be any other side effects. The chemo pill should be very tolerable as well. The Dr is also letting me come off the steroid at a more rapid pace. Yea maybe I will get some sleep. The Radiologist also mentioned he knows Davis Pilot when he noticed where I work :) I miss you guys, and I am very positive after meeting with the Radiologist. When I come back from UAB probably Tuesday since it is a one day appointment there, I will have to meet with the Chemo Dr. Wednesday the day before Thanksgiving, and my Radiologist said they will give me the Thanksgiving holiday off, and then start treatment. So since Radiation is Monday thru Friday I feel the treatment will most likely start Monday after Thanksgiving which will be November 30th. So 6 weeks from then I should be on the road back to me :) He did say that about week 2 or 3 of the combination therapy I will most likely be real fatigued and tired, but I can live with 3 or 4 weeks of feeling yucky since I had headaches for a few months and was sick everytime I turned around. It will honestly be nothing different than what I was already feeling. I will let you guys know the exact date treatment will start when we know, and we can count down the 6 weeks!

You stay positive still kitkatkaz! I am glad to have read your story. This discussion thread had been a lifeline to me with all the insomnia from the Decadron.

Love,
Michelle

Hi from Australia Michelle.

My wife of 24 years (aged 49) was also recently diagnosed with a Anaplastic Astrocytoma Stage 3. Heathers first seizure was October 10 2009 from out of the blue. Two days later surgery removed 80% of the tumour and we are now beginning week 6 of radiation treatment coupled with daily Temodal chemotherapy medication. As we all do, I scour the internet for answers solutions, alternate treatment options and other life experiences.
The trouble I have is that Heather is a great person, fantastic mother, good christian, a wonderful wife and friend, so I am in awe as to why, if there is a God, did this happen to such a fine person?
I dont doubt belief has healing power, but my faith is questioned at this point.

Heathers treatment seems to follow the sames lines as all AA/3 patients around the world. Surgery, 6 weeks of radiation, chemo then wait? Luckily Heathers surgery was a 100% success, in that there were no side effects, and luckily she is taking all the treatment on the chin. Heather has lost a lot of hair from the radiation, is listless some days, and has a few mild reactions to the Dilantin and the Dexmothzone. Otherwise she has maintained working (three days per week school hours)and hopefully will enjoy a good family Christmas.

No one really has spoken of life expectancy, and we haven't asked, but it is always there hanging over our heads. We have two teenage children, a daughter at University and a son finishing high school. Do we set short term goals or long term? There is no one who can advise us of this, they all just say we will see when the radiation treatment is finished and a few weeks after that we ill do more MRI's.

Any answers/advice would be appreciated.

Michael
Brisbane
Australia.

When my kid sister was diagnosed with AA3 at age 25 I had a lot of the same questions. Why her, why so young? I thought I was being punished because I knew it couldn't be because of anything she did wrong. In time I realized that cancer doesn't know or care what kind of person you are. Cancer strikes the old, the young, the good people, the bad people, etc. It is my belief that what's happening to your wife and my sister are not an act of God but an act of nature. I know how hard it is to accept and I wish I had better advice other than to say you will get used to the idea. You will never like it and you will always wish it would go away. But at some point the shock will wear thin and it becomes just a tiny bit easier to accept.

As far as life expectancy goes, everyone is different and nobody can know how much time anyone has, whether we are a cancer patient or not. New advances are made in cancer research all the time. Who is to say they will not find a cure or a much better treatment for AA3 in the next several years?

I think you should be very wary of life expectancy stats you read on the internet. Much of that info is out of date. Furthermore those are only stats and your wife is an individual person, meaning the stats might not apply to her and she might outlive everyone. My sister is convinced the stats mean nothing and she will be with us much longer than the doctors have predicted.

My sister is making some progress in her treatment. She went through radiation and she's now taking Temador. On her last MRI they discovered 5% shrinkage. I know this doesn't sound like much but it's headed in the right direction so we are celebrating. Cancer has taught us to celebrate small victories and that is what we are doing.

I wish your family the very best in this fight. I hope you will stay in touch and keep us posted on your wife's progress.

Thanks for your reply and kind words.

Today, Tuesday marks day 2 of week 6, only four more radiation treatments, and four more chemo doses. We get a break (we I mean Heather)until January 4th when the chemo dose triples for five days into a cycle of five days on 15 days off.

A break will be nice. I work each day till mid afternoon, go home, pick up my wife, take her to the radiation Clinic for a treatment, then home to get dinner ready. I really didn't think I could do it, but I made a promise that I would be there for every treatment.

Some guys aren't that lucky. The radiation clinic we go to treats over 300 people a day. More than half these people travel in from far away, alone and unaccompanied.

I feel proud that I can hold Heathers hand and walk through the door to each and every treatment.

Staying positive is hard, very hard. In the back of my mind I have these recurring thoughts. What if........

It is very encouraging to read the success stories on this site and to hear from positive people. Cancer touches more people than we know. Everyone I know, knows someone who has been affected in one way or another by this dreadful disease.

I still cant work out why. You live a good life, try to be kind to others and then get dealt this type of hand.......a hand you have almost no control over.

Still....it's Christmas. The decorations are up, the trees are trimmed, hope is in the air and Santa is coming.

Someone asked me what I want for Chistmas? I said not much....I just want my wife back, safe sound and healthy.

Peace happiness and kindess to all........pass it forward.

my husband was diagnosed with a grade 3 astrocytoma in oct. 2000. he has survived 10yrs. i am not a big believer but my husband is. think about the only miracle in my opinion, the birth of a child! 10 toes, 10 fingers so beautiful. how can thousands of children be created by humans be totally perfect? thay can not be. i hate to compare us to a car but, occasionally there is a lemon. sometimes they can be fixed sometimes not. i hope your christmas wish comes true.

can be found throughout life, even in our everyday lives, if only we take the time to notice. I also believe that we are exactly who we are supposed to be and where we are supposed to be, although it easy for us to judge ourselves and others, and easy for us to pity ourselves.

I am not always able to live peacefully, and not always aware of these things - that everything is exactly how it is supposed to be - because, no I am not perfect, but I am not a lemon, either.

Michelle, My husband was diagnosed with Astrocytoma Grade II. His surgery was Sept 10, 2009, at Thomas Jefferson. We have been working with a nutritionist from Utah, Jeanne Wallace. You can look her up on the internet. He only had radiation, but made it thru with minimal side effects we believe largely due to the supplements Jeanne had him taking. Also she recommended that he exercise 20 - 30 min prior to his treatment to have the blood flow help the radiation treatments. He had 27 treatments the last day was the day before Thanksgiving. On Dec 3 we took a much needed vacation to Disney! He did great. His biggest problem was some nausea caused by the radiation. Although you want to stay on a healthy diet, at this time it is important that you do not get ill on healthy food because you will not ever want to eat it again. This is called the "scape goat" effect. He took boswellia and curcumin, shark liver oil, and fish oil and did not need any steroids. I highly recommend to anyone going thru this to get a good nutritionist. Jeanne has specialized in nutrition for brain tumors which is why we chose her. Since we live in PA and she is in Utah our consults have been via phone and e-mail base on specific blood tests.

May God be with you and your family at this time. It is a total emotional rollar coaster. Don't be afraid to research things on your own. I haven't stopped since we found out Bob had a tumor on Aug 16, 2009. I read in a book to use the 333 rule. Get three opinions, make sure your medical staff has at least three years experience, and make sure the medical equipment is three years old or newer.

I hope Michelle is doing well. I was diagnosed in the summer with a low grade glioma. I'm just starting down this road and have hooked up with a naturopath. You might like the book "Life over Cancer" by Dr. Keith Block. He has used an integrative approach to cancer treatment. He treats the whole body: physical, spiritual, emotional....
I like the 333 rule. I'll have to remember that.

I am doing well, and I have had a clean MRI for 2 years and almost 3 months. I go for a follow up MRI on 01/18/12, and I pray every day that it will still be clear. I just started getting back on this site a couple weeks ago, and reading old posts really shows me how far I have come in these 2 years. Time certainly flies by. I am going to look for that book so that I can read it! I am open to anything that will keep me healthy for my daughter who is 4. Please keep me posted, and I will keep you in my prayers.

Thoughts and Prayers,

Michelle
Mobile, Al

Hi Michelle,

Would you be kind to inform me of the hospital and doctor taking care of you?

Thank you...

Angela

kitkatkaz, i also have AA 3. I have radiation and chemo pill temodar from dec21, 2010 to feb 3, 2011. then restarted chemo pill march3, 2011. Had open brain biopsy on Nov9, 2010. They just started me on Chemo Iv on aug 1 , 2011 and I am also still taking temodar for 5 days every 28 day cycle. After my radiation, they did MRI and it showed my tumor had grown instaed of shrinking. thats when they decided to start the IV. Thank God you are doing well in your fight, praying for you to stay cancer free. i pray for a cure everynight. Please just add me to your prayer list.

Tell your sister I survived it twice and im still going strong

kmd1019 how are you??

My husband was 35 when he was diagnosed and he is a 21 year survivor! He believed from the start that he could beat the cancer and he did, with a lot of prayers and great medical care. Not to say it has been all a picnic, there have been rough spots, especially now as he gets older. His neurosurgeon once told him that his brain age is about 15 years older than his real age because of the radiation. So that presents challenges, but he was able to see both of his children grow up, attend college, marry and have their own families. It can definately be done! He had a grade 3 Astrocytoma.

I hope and pray that I'm as lucky as your husband I also have aa111 and I want to see my five fantastic kids grow up ... I'm finding it all very hard I've had surgery they removed 95% of it it was in the top right superficial .. I just want to get better x

Did you have any further treatment? My daughter has grade II astrocytoma left frontal lobe. The Dr. said he completely removed tumor and she needs no further treatment for now. She is having short term memory problems but not so bad that she cannot work.

How are you doing today ronefx. Did you had any chemo or radiation. Glad to know you have remained cancer free for so many years.

sorry, it took me so long to respond, I don't check here that often. I had 6 weeks of Radiation & 6 courses of chemo. I am still doing good, just get tired here & there, so I take a nap(which I enjoy anyways) but, that could be from everyday stress, I normally don't think about the fact I had cancer, cause it has been so long.

I hope to be like you one day .. People like you give me so much hope x

Wow I am so glad to see that you are 15 plus cancer free! my son is going through grade 3 astrocytoma tumor treatment now has had 3 recetions radiation and 2 chemo 1 bio drug now NIH would like to have him in a trial they thinck it has progressed and our dr's did a PET scan and showed no actived so we are so confused about letting them so more but I want my son to have the same wonderful result as you have can you shed some light on this

I am the mother of a 47 yr old daughter who had AA grade 3.She is 7 yrs.clean.she is going to have her MRI in may and every time I cross my fingers.I have tried to ask docs about the long term effects with no answers.I finally realized that they just don't know, as most people don't last long enough to do studies on them.I saw that my daughter didn't lose hair from the temedar but she lost hair from the radiation.large strip that didn't come back. she has gone to a doctors for tests and has short term memory loss ,fatigue,cognitive problems ,impulsivness, loss of common sense ,anxiety and some times depression.each year that she takes the tests it gets a little worse.I blame the radiation to her brain.I am sure that it has killed good cells as well as bad cells.she certainly is very frustrated.I feel it is getting worse little by little.

my son was dig. with AAgrad 3 june 2008 and had 3 surg. radiation and chemo "His hair has not come back completely where the cyber knife was" now waiting for a trial to start at NIH hope that we can kick this as you have please any advice? frustrated is a under statment.

where are you going for treatment? the trembling may be short term. please go to a teaching hospital, it will have the latest treatments. yes as a caretaker we will do anything to save our loved ones, to save our loved one. go with it find the strength to do this. there is a place in your state or a near state that may extend you life. you have had a kick in the gut, get up or have and advocate get up and fight for you, it is not over.

Hello My friend

I had radiation, chemo and regular MRI's on agenda. I am scared but trying to act or look tough for familly. Hope you are ok and cool.

Regards.

I had my surgery one year ago, May 11 2008--on Mothers day. I have since completed radiation and 6 months of chemo (beyond the daily I was taking during the radiation) I am going to be starting another 6 months here soon-My husband and I were working with a fertility doctor before we started again.
I have had some short term memory loss, but I find reading and relaxing (I think this is the most important thing) have helped me a lot. I also lost some hair from the radiation but none from the chemo.
My one year MRI is scheduled for next Monday, the 11th. I am looking forward to celebrating one year clear soon. (In other words, keep the positive attitude and statistics dont matter!)

I will be thinking of you on Monday and wishing you the best on your MRI.

Hello Christy:

How are you doing? Please keep us posted.

God Bless
Priash

I had my MRI and follow up with my surgeon today. There is no reoccurence! We will be moving my MRIs to every 6 months now.

I'm so happy for your MRI results, ChristyM!! You give me hope that my sister will have good results from her treatment also. Thank you for sharing your news.

Tony,

I don't have any info or contacts but I wanted to at least reply to you. I don't think there's anything wrong with feeling guilty for surviving but I disagree that you had nothing debilitating. In my opinion, having any grade tumor is debilitating to a person's brain to cope with, especially when it's located in the area of the brain responsible for emotions/reasoning. My tumor was in my right frontal lobe and I can whip through emotions when I'm run down. I notice that my memory and my decision making capabilities are pathetic when I'm tired.

I actually think you're completely normal in your reaction to having a tumor, it's part of the grieving process we all have to go through. Except, online here, I don't hear that mentioned too much whereas I do hear this mentioned a lot in the "live" brain tumor support group I go to twice a month.

Take Care of Yourself Tony,
Mannie

Hi Tony

How are you doing now? I hope you found the help you needed... because I need help now. My fiance also had the same tumor (Right Front temporal lobe) and its been 12 years and he is so far gone with Anger, depression, social problems, fatigue ... hes now mimicking many mental disorders. I have been with him for alittle over a year and I am trying to find him help and failing miserably.

If you found a treatment facility please advise...

thanks
Tracy

Dear Jeff you sound flustered and quite understandably so. Get a second opinion mate thats a MUST. Then take it from there. I had a Gr 3 (WHO) list NINE years ago now and they told me Id be lucky to last 12 months. Still here 9 years later. NO ONE KNOWS they only guess these things in relation survivol times. They dont really know. So be POSITIVE and strong. If you would like to email me please go ahead. Im only to happy to support you. OK. Good luck and Im praying for you, GER/

Hi Gerard,
Nine years is fantastic. Iwould like to know more about your situation and treatment. What are your taking? I'm looking for anything to san=ve my 19 year old daughter's life. Grade 4 Astrocytoma.

Carol

University of Iowa, Dr Greenlee he did the surgery on our daugthers anaplastic astrocytoma, and did a fine job 99% or the original tumor removed. Also Duke university is doint significant amount of research on brain tumors.

I just had my 2 year MRI today, all clear, no sign of reoccurence!

Hi Megan's Mom,

I'm Kathryn's Mom who was recently diagnosed with a grade 4 astrocytoma. If you have any encouraging words or know of any new treatments please send them to me. We are looking to save our daughter.

Carol

Heres a vote for them,...They were a dream come true for me as my wife has done greatly through their care..

My vote...there are many wonderful places and this is the wonderful place we found...thank goodness!

I am getting treated at the UCLA with Dr. Cloughesy. He is a well-known researcher and he works with a team that includes surgeons, radiologists, and other doctors. You can reach UCLA Neurooncology at (310) 825-5321. UCLA is known for being a very good hospital. However, I hear that UC San Francisco has even more succcess with brain tumors.

Angela, not sure if you are still looking, but...

My 23 year old fiance was diagnosed with a Grade 3 Oligoastrocytoma in December 2008, and his operation was successful. Our surgeon was Dr. Wade Mueller at Froedtert Hospital in Milwaukee, WI, USA, which is associated with the Medical College of Wisconsin. Dr. Mueller did a fantastic job, as did the neuro-oncology and radiology staff. They continue to take good care of my fiance.

Hi! I had a grade three astro ten years ago. Alive and fine as can be. I'm forty and people think I'm thirty. I am writing a book about my dating escapades since moving to NYC 18 months ago. This is the first post I've ever written. I don't define myself as a brain cancer survivor. I just hang out in life and have a good time. I did leave my accounting job and it is great to have ssdi and the brain cancer thing is how I get the money to live my dream, which i will do!!!! and I have a lot of allergies, etc. But I would say get the best treatment possible and ignore the situation after that. My family mostly ignored the fact that I was sick, which I resented, until a friend who has mental illness said that she noticed that the kids whose parents visited them in the psych wards never got better. I also had another astro survivor telling me I would definitely live and that turned out to be true. I also have a small brain aneurysm and hell if I understand that but it's supposed to be not that dangerous and fairly simple to fix if it ever grows. Just go by the assumption she'll survive and live a long, very normal, maybe even exciting life! That's what I'd tell anyone. Treatment is not fun. I had a pretty yucky experience but that made me a philosopher so I'm sure the same will be true for your daughter! Ha!

Hi There,
I am so happy to be reading more and more pos+ stories. My 12 year old daughter was diagnosed with anaplastic astrocytoma grade 1 and grade 3. The doctors say that it is rare to have such a mix of low and high grade cells through out the tumor. She has had 2 brain surgeries to remove the tumor which was located in her cerebellum. The surgeon said that the tumor looked like a low grade as it did not look much different than the normal brain tissue. After sending the tumor to 3 other hosp for 2nd, 3rd and 4th opinions they diagnosed her with AA3. I'm hoping that she has a better chance because of the mixed cells. Not as many high grade cells to kill. Unfortunetly they gave my daughter the same prognosis as everyone else. 35-40% chance of living 5 years. I refuse to believe that. She is doing so well. She just finished her first round of chemo and has 6 radiation treatments left. Then she will be on the higher dose of chemo for a year, 5 days on, 23 days off. The longer we can keep her tumor free the better the chances of a cure or a new drug that will help. We believe in the power of God and miracles do happen. I pray that God will heal my daughter. I'm just so happy to have read your story as even though I have faith, I also have my bad days and need something +pos. Thank You :)

I know you've read my sister's story about her progress over the last year. We were told she has 3-7 years but she's not buying that and neither are we. My sister and I believe someday we will be old hags together. I will be a much older hag but at least we both will be old hags. LOL!! Keep the positive thoughts coming and remember that statistics mean nothing. She is an individual person and this experience is different for everyone. You and the rest of this board are in my heart and in my prayers.

Thanks PBJ Austin, I have been trying to keep up with your sisters story. I think that the doctors give the same statistics to everyone. My neighbor has stage 4 breast cancer which has moved into her bones now. She has had 3 rounds of chemo and several treatments of radiation. To her breast, to her spine. The doctors have told her that it was terminal. well guess what? it's been 7 years and she's still here. She is on a new clinical trial med but it seems to be working well for her. So you are right, Statistics mean nothing. I will pray for your sister and you as well. :)

So happy to have found this blog and see so many survivors. I have a diffuse astrocytoma grade 2 in my brain stem and growing to the left lobe so my right side is affected. Trying to cope with that, don't know what to expect... Haven't undergone any treatment yet. And surgery is impossible. Is there anybody with similar conditions?

I have a grade II astrocytoma in my left temporal lobe...wasn't specified whether it was a diffuse or not, but from the description, I believe that is what it is. I also have issues on my right side, among some other things.

I did have a partial ressection in August of last year and stereotactic radiosurgery in December. The doctor was only able to remove about 25% of the tumor during surgery - so it was really just a biopsy, and was told that the tumor has extensions that are unable to be removed because it is reaching into healthy brain tissue. Was told that the stereotactic radiation could take a year or more to make any difference, and the tumor has not changed over the last six months. From what I have read and heard, chemo doesn't have much affect on stage II tumors. So, now I just have to wait and see if the radiation has done anything. My doctor seemed pleased that the tumor has not grown, but I am not real pleased that it hasn't shrunk either.

It is difficult coping with having a brain tumor. I don't always communicate with other survivors, but do read the discussions....This is a good place to be....

Take care,

Michele Stevens

Lenuzamdk, my sister took Temador and that combined with radition worked well for her for her AA3. The radiation was tough but it only lasted 6 weeks. She had very few side effects from temador except being tired. In less than a year my sister's cancer is no longer visible on MRI's. That doesn't mean it's gone forever, that is never a guarantee with cancer. But for now it is not visible so we are celebrating. I am no expert but I believe temador must be an excellent treatment.

Good luck, I wish the best for your mom.

My 44 year old mother was diagnosed with astrocytoma grade III in March and had surgery to remove 80 percent of it. She has undergone six weeks of radiation that was supposed to be coupled with temador. However, her platelet counts were dropping very low so she missed a week or two of chemo and has been receiving platelet transfusions, as well as a shot to boost cell production. Has anyone had these difficulties during chemo? Also, her radiation was targetting the front of her head so she has lost all her hair in these areas. Some say that it is possible the hair will not grow back at all. Has anyone lost hair and had it grow back after radiation? She is getting quite worried about not having hair anymore. Thank you.

Hi ab293.
Yes, the hair grows back. My daughter lost patches on her head during treatment, but it grew back. She was on temador during treatment and was low in her blood counts too, and had to skip a few weeks before starting again, but she never needed transfusions.
Good luck to you and your mom.

My 23 year old fiance had hair loss when he received targeted radiation along with Temodar, but the hair did grow back, and quite thickly! The only place where he still has a patch that is a little thin is the area where they had to place the drainage tube during surgery, in the back of his head. It took a little while, but it did come back in less than a year. I hope your mother does well!

My 26 year old son has been diagnosed in June/2010. Graduated from college June/2010. Craniotomy/temporal lobe July/2010.Some aphasia but recovered. Short-term memory is poor but manageable. Married August 14, 2010. We are beginning radiation 9/7/2010. No chemo yet.

It sounds like you, in that he really had no symptoms except something that appeared like anxiety attacks, was treated with anxiety medication but when they increased in frequency an MRI was done and it was determined that what he was having was focal seizures due to a tumor. Medicine has them under control as well as the removal of 95% of the tumor with 'tentacles' still in his other parts of brain. That is where the focus of radiation will be.

He has returned to his part-time job but is wanting to get radiation over with so he can begin a search for a 'real job' and support his new wife. Told to increase calcium because radiation can cause thinning of the bones. Fatigue and some hair loss will be a side effect.
We are not sure what to expect except the provision of God's grace every day. Because he is only 26, we have been told this is very unusual sooooo......besides putting on weight, from the steroids used to reduce swelling. He is back to fairly normal activity. Maybe we can travel the path together and compare notes?

Dear Woodysmom,

I would not delay the chemo at all, especially if he can start Temodar. This is NOT something to fool with, as I know from personal experience. After I finished radiation therapy, my grade III appeared to be gone. I was put on PCV chemo as a "preventative measure" since the tumor bed looked clear on the MRI at the end of 1995. Within 2 months the MRI had changed and in April of 1996 I had a second surgery. I was then put into the Temozolomide clinical trial. The drug saved my life. The radiation only temporarily held the tumor at bay...Grade IIIs are best treated as aggressively as possible.

Talk to his doctor about the options available. Everyone reacts differently to different therapies, and some are effective on some people and not on others. Best of luck to you.

Johanna

i agree with Fusionera, my doctor told me they could not remove my tumor but could continue to give me temodar (chemo) and extend my life for a long time

On February 23, 2011, my son went to an MRI review with his radiation oncologist. At that time, he said Loren is cancer-free. Praise God. He is to have follow-ups every 3 months with a neurologist. This first follow-up all the neurologist did was ask him how he was feeling and congratulations on the status. My son has this idea that MRIs are no longer needed and probably doesn't need to see a doctor for a bit. I am going to have him ask if an oncologist needs to be a referral or what should happen to monitor his status a little more closely. No Temodor right now. No chemo. I am apprehensive my son is not staying more vigilant with medical follow-ups. He was diagnosed Stage III: Anaplastic Oliogodendroglioma 5/2010.

I am glad to hear about your son ! If there is some more information how to deal with this disease please don't hesitate to write me !
Best luck !

Woodsymom,
I am so happy to read your post as my husband is fighting the same tumor. He did however, have radiation and chemo. Last does will be the end of this month.Your story makes me feel so much better, knowing there is hope when you have been dx with a anaplastic olio. grade 3.

I have the same as your son. got sick in june 2010, had open brain biopsy nov 9, 2010, and not long later got pathology report from JOhn Hopskins. Anaplastic oli. astrocytoma aggressive grade 3. they started me on radiation and chemo (temodat) on Dec 21, 2010 to feb3, 2011, then restarted chemo (temodar) march 3, 2011. i have to do it for 6 months for 5 days every 28 day cycle. they say they are surprised and very happy to see me doing so well. i am also on seizure med. keppra. this has totally changed my whole life, work and everything. i keep u and ure son in my prayers

An anaplastic astrocytoma was found not in my brain, but inside my spinal cord (T9-L2) when I was 27 years old in 1981. I'll put the long story on my profile, but the short story is that I had surgery to cut out the tumor followed by 22 treatments of radiation therapy to kill off the remaining cells that adhered to the left side of my spinal cord. I was in the hospital for two months and because the surgeon had to cut into the spinal cord to get at the tumor, I had paralysis of the legs. With the skill of a terrific surgeon at NYU (who is still practicing today) and a team of wonderful physical therapists, I regained my ability to walk and have lived a healthy life for 30 years. I did not have chemotherapy. It took about a year to be walking normally again, but the tumor never came back. All of the doctors, including my neurosurgeon, were amazed.

I just wanted to write in and encourage people. I want to let you know that an anaplastic astrocytoma is not a death sentence. My mother is 95 and I plan to live that long as well. Best wishes to all of you.

I don't think there is any evidence whatsoever that states smoking cannabis has anything at all to do with brain tumors - either positive or negative. I have read some research on the health benefits of ingesting cannabis. Taking it into your lungs is not good for you, but it likely has nothing whatsoever to do with developing a brain tumor.

Kelly

I'm new to this site, just read it all and all of your thoughts and experiences gave me such a new look on this deseese. My mom was diagnose with AA3 week ago. She had tumor 3x5 centimeters that was removed 3 weeks ago. I looked into statisticks it doesn't look promising but reading all your comments is so encouraging! Is there anybody out there that beat the 10 years mark?
My mom's tumor was all remover she will start radiotherapy soon. She lives in Poland and the health care system is not as advanced there as here. Everybody that went through AA3 is talking about chimo- temodar. Is that standard for US or anyboday is doing radiation only. Is gamma knife in any use in that situation?
Thank you in advance.

Hi,
Mayo clinic at Rochester ,MN has great doctors.

My dad had a aa removed at johns Hopkins in march, he had chemo and radiation, and clean. MRI, we travel to md from Arkansas. I am an adult and an only child. Dad has a follow up December 5 with an MRI, the anxiety level with me is intense, I was doing ok, now I feel it is unmanageable. My parents do not know my extreme fear. I have OCD which makes it all worse. God has been good, but I feel like I am going to explode and what if it returned....I now hate seeing anything to do with the holidays...I need help I feel so alone, I know it is my dad that really needs the help, but what if I have a breakdown..p,ease email me if you want to talk...

You can get through this. Have you seen a counselor? That may help. My son has a grade 3 thalamic tumor and I suffer from severe anxiety and I know we can get through this. Try meditation, prayer, exercise, deep breathing or learn how to knit. All these things help me.

Nicole (Finnegan's Mom)

I can't imagine how scared you must be about your baby's diagnoses. This definitely is a life changing experience. I just wanted to tell you that I'm sure there are survivors out there for all sorts of things that our human brain has long deemed over. Don't give up hope and keep fighting. Your baby will have a fighting chance. My brother has grade IV GBM and because of how fast it had grown they initially thought few weeksat the most but we just celebrated his one year old anniversary and he is living life to the fullest so keep believing. I'll keep you in my prayers

ForHope

Thank you so much for your comments and kind words. I send you my love.

Thank you so much for your comments and kind words. I send you my love.

My heart felt broken for you when I read your pleas for information for your little baby. I cannot imagine your pain. I feel bad enough with my 28 year old son....but I think a mother's love for a baby is so fierce and protective...and a little baby is so helpless and hasn't even started to have their life....I am so sorry beyond words that you are facing this.

I don't know if this will help you very much...but the doctors don't know everything. I have a good friend whose husband was diagnosed with an AA3 and they told her that he would live 6 months, maybe a year at the most. He lived for 24 years and died recently at 58 years of age. He died of congestive heart failure, not from his brain tumor. He also had a recurrence about 10 years ago and battled back from that.

So sometimes the doctors don't get it right. I also believe in miracles. I am praying for a miracle for my son and I will pray for that until one of us is no longer drawing breath. One of our doctors told us as long as you are breathing, there is hope.

Love, blessings, peace and strength to you. I will be praying for little Finnegan too.
Cindy in Salem, OR

Thank you so much for your kind words. I read it out loud to my husband. They made me smile and cry. And the story of your friend's husband does help. I need to hear survivor stories. And thank you for praying for Finnegan. I will pray for your son as well. Do you have any helpful books that I should read?

Nicky
Madison, WI

Hi, Nicky. Thank you for writing back to me.

I read Lance Armstrong's book, "It's Not About the Bike" and I loved it. He didn't have a primary brain tumor but he did have a bad prognosis and his cancer did end up metastasizing to his brain. But he beat it and I love his fighting spirit. And not only did he beat it, but he won the Tour de France I think SEVEN times after he had cancer. What an inspiring man! I also joined his charity LIVESTRONG on FB and I get a lot of encouragement and inspiration from their posts and links.

Here's another link that I like too:

http://livingwithbraincancer.com/default.aspx

It's maintained by the wife of a guy who has glioblastoma multiforme, which is a really difficult brain tumor. People who battle that type of brain tumor usually get a really bad prognosis--often like under a year or two. But this guy has been fighting it and living well since 2006. His wife is really faithful about updating their site, so they don't leave people hanging and wondering how he is doing and if he is still tumor-free. They are also very proactive about posting links and information on new research, etc.

Here's another site:

http://virtualtrials.com/survive.cfm

Great survivor stories! These are people with tumors that usually are given a grim prognosis. I love reading these stories because it confirms to me that sometimes people prove the doctors wrong.

You may have already found these sites because I have a feeling you've been doing quite a bit of internet research, looking for answers and help for Finnegan. The internet is a powerful resource, but be careful, because it can mess you up too. It can rob you of any feelings of hope if you are not on guard. I almost drove myself crazy when my son was first diagnosed because I read so many negative things. Now I read the bad stuff once, and anything that is good or positive or encouraging or hopeful...well, I copy and paste it and put it in a special file and I re-read it every now and then. I think it's important to nurture and guard and protect a feeling of hope and a fighting attitude. I let my hope slip and I'm having a hard time regaining the emotional ground back.

Finally, I have to say that I think the most important book you can read is the Bible. I read about 30 chapters in Psalms last night. It really brought a measure of peace and comfort to me.

Love and blessings,
Cindy In Salem, OR