Grade 3, an anaplastic astrocytoma

jordanmar1

Gerard6 said:

Hi Janet


Hi Janet, lovely to get your mail and that you are so understanding. Well I was diagnosed with a Gr 3 8 years ago. Same treatment really. I am very happy to say I think he will be fine. Im 55 yrs now and when it occured they said I had maybe 12 months to live. As I said that was 8 yrs ago. Mine was in the left occipitalm lobe area and with 95 percent resexted and then 6 weeks radiation. So I feel really positive for your Nephew in Law. Hes young and strong and has all that going for him. Good look in the future. Hugs and kisses, Gerard.

my friend scott
i just came across this lovely webite today and i am very moved with the content. the first blog i read was from janet who is worried about her nephew in law. she first posted her comment on oct08 and i was eager to tell her about my friend scott. he was diagnosed with a grade four astrocytma nearly ten years ago and had remained cancer free until around four months ago. he is currently undergoing chemotherapy and he again is responding very well! i am going to encourage scott to have a look at this website as i think it would be very good for him to keep his spirits up and im sure he would have a lot to offer other cancer sufferers. janet i hope your nephew is doing well.

god bless you all

rdan597

PBJ Austin said:

Question for Sue Siwek
Hi Sue, is your husband in remission from AA3? My kid sister has the same and they have indicated remisssion is unlikely. Thankfully my kid sis never believes anything they tell her and she is convinced she can beat this. I love her attitude.

anapalastic astrocytoma grade III
Hi! My mom has a AA III. she was first diagnosed in 1987. she had a surgery then and they got part but had to leave 2 1/2 cm in there. She at the time did the most aggressive radiation you can have. the tumor went into remission and other than certain light effects she has done fairly well. She was told at that time that she had 1 to 2 years to live. It was in her right frontal lobe and whatever was also in there made it rare. That was 22 years ago. The past couple of years she has slowly gone down hill but she has her yearly MRI scans. they have turneds out well. The week before Christmas she had a problem where she couldnt talk , communicate, or even recognize people. I immediatly took her to the er and it turned out the yumor has come back and now is a 4 1/2. She just had surgery for the second time this past Wednesday and we r hopeful that she will recover and be okay for a long time. The problem is she is 59 and weak. I thought maybe you hearing this would give you and others the hope that it doesnt have to be a death sentence and you always have to fight and do everythoing that you can. Keep the faith.

SergeVP

chicken2799 said:

Treatment plan!
This is what I posted for my family and friends! It is hard to repeat everything on the phone to everyone.

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!

Treatment Plan
Hi chicken, and everyone else.

I just found this group and wish I had found it a year ago. I've been snooping down through the stories and was floored when I read yours. It could have been my story.
I found out I had a tumor Oct 3rd 2008, right frontal lobe about half an inch around.
Surgery early November which got about half.(the other half had veins through it so Dr didn't want to risk it) I was home less than 24 hours later. Got the word a week later that it was a Grade 3 Anaplastic Astrocytoma. Same story.... 30 radiation sessions mon-fri concurrent with Temodol 7 days/wk. I had a month off then started more Temodar 5 days of 28. A different spin with mine was inclusion of Accutane for days 1-21. I haven't seen anybody else here taking that drug, but my RO says it "enhances" the chemo. What I've noticed is it dries my skin out something awful. Anyhow, I was told I'd do 12 to 24 cycles of the chemo. I've just finished the chemo part of cycle 11. MRIs show no regrowth and they say I will stop chemo after 12 months. I'll be done by end Feb. I got my driver's liscence back just before Christmas after about 13 months off the road.
I tolerated the Temodol quite well, throughout the whole thing I never vomited; I felt pretty crappy at times, but not debilitated. I was told that Temodol would not make me lose my hair, which it didn't, but like you say, I was told the radiation would leave hairless areas, which it did. For a while I wore my head shaved,(my scar is a straight line from front to back about 3 inches above my right eye and will be covered if my hair ever grows back thick) I stopped shaving it and now have very soft and thin "baby hair" where I lost it. I went back to work in October and am very glad to be productive again. I came out of surgery with all my functions, no deficits noticed, other than emotions seem to be boosted. When I'm mad I'm madder, when I'm sad I'm sadder...etc.
It's been a long road, and an even longer road ahead. The hardest days so far were the first day when I found out I had a tumor, and the day my wife and I told our 2 boys(then 8 and 5)
Since then it's been one day at a time.

spMC6032

kellbell said:

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

AA III
Hi KellBell,

Thank you for your comments. My brother was just diagnosed with the same as your husband and he is going to get radiation and chemo pills. How is he doing now; great I hope!


Thanks,
Marcel

spMC6032

kellbell said:

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

AA III
Hi KellBell,

Thank you for your comments. My brother was just diagnosed with the same as your husband and he is going to get radiation and chemo pills. How is he doing now; great I hope!


Thanks,
Marcel

spMC6032

kellbell said:

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

AA III
Hi KellBell,

Thank you for your comments. My brother was just diagnosed with the same as your husband and he is going to get radiation and chemo pills. How is he doing now; great I hope!


Thanks,
Marcel

megansmom

ronefx said:

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

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

megansmom

chicken2799 said:

AA3
I had my bump the day before Thanksgiving. I started having seizures that Wednesday night, and it took them a week to get them under control. I was in the hospital for a week and a day, but am now back at home. It was a small bump along the way, and they had already warned us that seizures were likely. I am starting week 4 of radiation Monday, and have lost all the hair on the left side of my head. My husband shaved my head last night, and it feels weird, but at least it will all grow back the same length. I am still very positive because this is the side effects we must face to reach remission. I still trust the Lord will help me through, and we are halfway through. Like you told your daughter I am gonna live life as though I will live to be an old lady...

Thanks for your reply,

Michelle

Michelle, what you are
Michelle, what you are dealing with is similiar to my daugther! She is 15yrs old diagnosised with AA3 in Nov. 09, we are done with radiation and now chemo continues for over one yr. We thought that she was doing so well in Feb. when suddenly seizure, now back on Keppra no more seizures have occurred. Everyday you want to be thankful for that day, but I go though the why her almost daily. I think for us after surgery that got most all of the tumor we were thankful and felt the worst was over then the diagnosis, and not the never knowing if it will return. I know she is scared but does not talk of it much, she has an MRI next week and we go though this holding our breath and all the fear. I know likely you have the same feeling, you want to know but don't want to know. She is not receiving the Temador chemo, they felt that as a teenager it was best to do the PCV chemo, and if Temador was needed later for recurrent tumor it was an option. I don't want to think of her having to go through all of this again. I hope for her to experience all the wonderful things in life that most people get to, I want her to be able to not have to think of this everyday. I hope for you to not have to think of this awful cancer everyday. I try to think of things to be thankful for daily, today I have my children and my husband, Megan is not sick from chemo, and life goes on today. I will always long for the days we had before the brain tumor.
Thank you for letting me share, I hope today you can be thankful for not feeling ill!
Stacy

PBJ Austin

jordanmar1 said:

my friend scott
i just came across this lovely webite today and i am very moved with the content. the first blog i read was from janet who is worried about her nephew in law. she first posted her comment on oct08 and i was eager to tell her about my friend scott. he was diagnosed with a grade four astrocytma nearly ten years ago and had remained cancer free until around four months ago. he is currently undergoing chemotherapy and he again is responding very well! i am going to encourage scott to have a look at this website as i think it would be very good for him to keep his spirits up and im sure he would have a lot to offer other cancer sufferers. janet i hope your nephew is doing well.

god bless you all

*********UPDATE ON MY KID SISTER**********
For those who haven't seen my thread entitled "Fast Recovery from AA3, Miracle or Mistake," please take a look at my latest post. My then 25-year-old kid sister was diagnosed with AA3 in March of 2009 and in a year's time she is now cancer free!! Miracles do happen, please do not lose faith. We can win this war against cancer.

Hugs and blessings to all.

roux67

PBJ Austin said:

*********UPDATE ON MY KID SISTER**********
For those who haven't seen my thread entitled "Fast Recovery from AA3, Miracle or Mistake," please take a look at my latest post. My then 25-year-old kid sister was diagnosed with AA3 in March of 2009 and in a year's time she is now cancer free!! Miracles do happen, please do not lose faith. We can win this war against cancer.

Hugs and blessings to all.

Blessed
This November will be the 5 year anniversary of the removal of my AA tumor, grade3. The 30 treatments of computerized laser radiation treatments to the cancer that couldn't be surgically removed went by quickly. My hair, from those radiation treatments, started falling out after 3 weeks of it, but only where the laser beams passed so I was left with a mohawk hairstyle. The temodar pills during radiation and for a year afterwards seemed very tolerable to me. 5 years ago I had just turned 38. After having a seizure, something I had never had before, turned up the tumor with an MRI. Recovery from that seemed easy and then all the other stuff mentioned above have me cancer free for almost 5 years. My next MRI is June 14th. I am assuming it will still be clear. Here is to staying well so I can see my adorable grandaughter, who will be 1 in July, grow up to be a beautiful young woman. Depakote is the anti-seizure med that I am on. Does this make one lose some memory or is it just being in one's forties?

Diablita

OCMenno said:

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

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

Diablita

roux67 said:

Blessed
This November will be the 5 year anniversary of the removal of my AA tumor, grade3. The 30 treatments of computerized laser radiation treatments to the cancer that couldn't be surgically removed went by quickly. My hair, from those radiation treatments, started falling out after 3 weeks of it, but only where the laser beams passed so I was left with a mohawk hairstyle. The temodar pills during radiation and for a year afterwards seemed very tolerable to me. 5 years ago I had just turned 38. After having a seizure, something I had never had before, turned up the tumor with an MRI. Recovery from that seemed easy and then all the other stuff mentioned above have me cancer free for almost 5 years. My next MRI is June 14th. I am assuming it will still be clear. Here is to staying well so I can see my adorable grandaughter, who will be 1 in July, grow up to be a beautiful young woman. Depakote is the anti-seizure med that I am on. Does this make one lose some memory or is it just being in one's forties?

Praying for you
I'll be praying for you and that you will still be cancer free. I just got diagnosed with your same type of tumor this past week, and all I ask GOD is to please let me see my little children grow up ( they are 2 and 4 yrs old ) even if I don't get cured, I ask GOD that with treatments and surgery I can still be around at least until my kiddos are adults.

333777

Niece and brain cancer
My niece Karla was diagnosed with Anaplastic Astrocytoma III on Monday and yesterday the Dr siad it was not localized to one area but spread out over two lobes so the radiation would be over half of her head. No surgery because of how it's spread out. She is 34 with three children. She is scared. And so are we. We are a christian family and will always have hope. It really helps to read positive comments from people that have gone through this type of thing. The Dr in Des Moines is talking with Mayo Clinic Dr's to see if they have any other ideas for treatment for her because of the spreading of it. She is otherwise healthy and has no symptoms at this point. She has a seizure just over a year ago and the Neuro Dr said we'll wait a year and see if it grows. If it does we'll biopsy it. Thay did and that's where we are now.

rokaren5

vetticus said:

Hi
Hi everyone,

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

Thanks
Yvette

me too
I was diagnosed with level 3 astrocytoma glioma after my biopsy/resectioning on 8/6/10.
I'm reading this amazing book called, "Anticancer A New Way of Life". Initially I was so thrown off. I thought I was being given a death sentence. Now I get it. This tumor will have to be managed with radiation (I just finished week 2 of 6) and chemo (temodar). I'm not going to die anytime soon from this thing. I'm only on page 43, but the doc (David Servan-Schreiber, MD, PHd) who wrote this book has been fighting/controlling/beating brain cancer for 15 years. I can't recommend it more highly.
best,
Karen

rokaren5

a book to change his life
I'm a little behind your nephew-in-law as I just got diagnosed in July 2010. Biopsy & ressectioning surgery in 8/2010. I just wanted to let you know about an amazing book. It's called "Anticancer A New Way of Life". The doc who wrote it, David Servan-Schreiber, is a brain cancer survivor! He fought it for 15 years and is 7 years clean. With every page I read I have another aha moment. I'll cut and paste from amazon here for you: It's incredible.

In "Anti-Cancer: A New Way of Life," French-born psychiatrist and neuroscientist Dr. David Servan-Schreiber discusses his fifteen-year battle with brain cancer. Although conventional treatments worked initially, the cancer recurred. Fortunately, he has been cancer-free for the past seven years, and he attributes his success to an anti-cancer regimen that, he asserts, boosts the body's natural defenses. Dr. Servan-Schreiber does NOT encourage cancer patients to reject their doctors' advice concerning surgery, chemotherapy, and radiation treatments. However, he does believe that there is nothing to lose and everything to gain by making changes in one's diet, level of physical activity, psychological attitude, and environment.

This book is an informative and eye-opening look at the mechanisms of cancer, explained in a way that a layman can understand. There are many helpful charts, tables, and illustrations that clarify the sometimes technical information about the latest research on the genesis and progression of cancer. The author maps out how rogue cells are nourished and conversely, how they can be starved of the nourishment that they need to multiply. Although researchers have undoubtedly made a great deal of progress, Servan-Schreiber assures us that we have a long way to go before we can declare victory over the many types of cancer that still plague mankind. In addition, he includes well-chosen quotations from literature (such as Tolstoy's "The Death of Ivan Ilyich"), philosophy, and other physicians and scientists to illustrate his points, some of which deal with our fear of dying without having lived a full and meaningful life.

"Anti-Cancer" is a personal, touching, instructive, and thought-provoking. Whether or not the reader is interested in adopting the author's recommendations concerning diet, exercise, meditation, and other lifestyle changes, no one who completes this book will ever think about cancer or about the human body in quite the same way. Servan-Schreiber is not a new-age charlatan who advocates far-out therapies. Everything that he suggests is based on solid and well-documented research, and he includes numerous citations from scientific journals.

Although no one wants to confront a fatal illness, Servan-Schreiber contends that his battle with cancer has had a positive aspect. "By exposing life's brevity, a diagnosis of cancer can restore life's true flavor." Forced for the first time to look into his soul and evaluate his approach to living, he realized that he had been caught up in a treadmill that allowed him little time to appreciate the importance of mind-body equilibrium, inner peace, relationships with loved ones, and personal fulfillment. Everyone, no matter what the state of his or her health, can benefit from this stimulating and provocative work.

MikeP

Hello my brother had a stage
Hello my brother had a stage 3 brain tumor and went through chemo/radiation biopsy and surgery and now it has been 5 years this past July. he has his ups and downs, but suffers from a lot of chronic pain.... so hang in there and never give up... Thing is tell him to be strong... and no one knows how long someone has to live only God!! Hope this helps

Dannyfic

Astrocytoma
I was diagnosed with a grade 3 anaplastic astrocytoma in March of 2008. I had the 4 cm tumor removed during a craniotomy. After surgery I started a 42 day cycle of temodar I think 100 something mg a day. I also did 6 weeks of radiation (targeted) twice a day. I took one month off and them did 12 months 5 day cycles of temodar at I think 480mg a day. I am at 3 month intervals for MRI and just had a clean one a few weeks ago. I feel great (aside from the whole reality of it) and suffered no deficits from surgery. They say it usually starts to recur after a year or year and a half. I'm at 2 years 8 months and have my fingers crossed.

ds3656

cindysuetoyou said:

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

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

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

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

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

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

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

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

love and blessings,
Cindy in Salem, OR

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

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

KMPonder

Dannyfic said:

Astrocytoma
I was diagnosed with a grade 3 anaplastic astrocytoma in March of 2008. I had the 4 cm tumor removed during a craniotomy. After surgery I started a 42 day cycle of temodar I think 100 something mg a day. I also did 6 weeks of radiation (targeted) twice a day. I took one month off and them did 12 months 5 day cycles of temodar at I think 480mg a day. I am at 3 month intervals for MRI and just had a clean one a few weeks ago. I feel great (aside from the whole reality of it) and suffered no deficits from surgery. They say it usually starts to recur after a year or year and a half. I'm at 2 years 8 months and have my fingers crossed.

Fantastic!
Stay well, Danny! So glad to hear this. Hubby just got off Temodar after 10 mos at 450 mg. He'll have MRIs every two months for this first year. We pray the same results of clean MRIs for the next 50 years!

sue Siwek

KMPonder said:

Fantastic!
Stay well, Danny! So glad to hear this. Hubby just got off Temodar after 10 mos at 450 mg. He'll have MRIs every two months for this first year. We pray the same results of clean MRIs for the next 50 years!

my husband is begining his
my husband is begining his 11th year from aa 3. temordar did not work for him. i guess i am saying that if temodar no longer works that there are alternatives. my husband has mri's every 4 mos.