Astrocytoma Grade III-Survivor

Toshy said:

30 + years!
Adding my support and encouragement

I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem (Astrocytoma on floor of 4th ventricle). I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

lawslegal said:

My son is recovering from an astrocytoma
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

chicken2799 said:

Hello
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!!

chicken2799 said:

Meds
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?)

Tomaszrubin2 said:

Do You smoke marihuana mate
Do You smoke marihuana mate ? x

papainting said:

Supplements for rad/chemo
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.

alutiiqmom said:

chemo drugs?
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

heyrabbit said:

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

BOSBEK said:

Grade III Astrocytoma
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

gvillek said:

Hello, first of all thank you for telling others about your story. My sister who is 26 years old and is fighting for her life. She also has Anoplastic Astroyctoma – Level 3. She has two small children and I live 90 miles away. I can't express the hope it give me that there are individuals that have survived this cancer! I have been searching for ways to encourage my sister not to give up.