Grade 3, an anaplastic astrocytoma

kempenl

Chemo
How come he didn't have chemo? I thought 6 months or more of Temodar was 'standard' treatment? thank you.

Priash

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.

Trusting in the Lord!
Hello OCMenno:

My story is very similar to your wife. I was diagnosed 9/08 with AA-III and my tumor was as big as a tangerine. I was given 33 radiation treatments along with the chemo. I am now finishing my 5th month of chemo and doing well with all the side effects. Although, I am 25 years older than your wife is, I know how she feels about her well being and family.

I have two girls in college and I pray everyday to see them in their chosen profession and one day see them married. I pray everyday, that the Lord gives me this time to celebrate with my daughters. I know it is hard to stay strong, but when I see how my daughters and husband take care for me this gives me the strength to fight this disease.

My youngest daugther told me a story about a co-worker, her Mother told her to move out. Her friend came to work and unloaded all her problems that she was having with her mother. My daughter was a good friend and held her while she cried. (Sometime, we just need to be held) Her friend asked my daughter about her relationship with me. My daughter told her about my cancer. Her friend asked her, why are you so strong? She replied, "Because my mother makes me strong." This is how I want my family to remember me as a positive, funny and always smiling mother and wife. I know I will always be in their hearts.

My brother died of bone cancer at the age of 22. He was never married or had any children. Look at your blessing your three children. Keep a positive face and let her cry and speak her mine. She needs an outlet and you have to be her strength, for her to be strong for you and the children. After all, these are the times your children will remember, what a positive person she is. The gift of keeping positive is what will hold them together during their rough times in their lives. Since the baby is young, take video and record the great moments. Have her keep a diary.

Make everyday a special day and do not worry about what you or your wife cannot control. Leave this in God’s hands and the wonderful Doctor that he guides. OCMenno, we cannot determine our future, we can only live in the "Now". Let your wife go and cry in private, it maybe her outlet to reflect, especially with the next challenges!

I have your wife and your family in my prayers. Please keep us posted and never loss faith.

God Bless,
Priash

santis_mom

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

your message
Hi all,

Yvette, it sounds like we are in the same boat--I was diagnosed with AA-III in late Feb. There was one complication, though, I was 28 weeks pregnant. We decided to wait till 32 weeks of gestation and then induce. Within a week of delivery, I had neurosurgery to resect the tumor. I've now completed radiation with Temodar, the one month rest period, and the first of 6 rounds of Temodar.

Are you feeling decent lately? What stage are you at?
I haven't reached out to anyone until now.

Best,
Trina

kellbell

My husband was diagnosed
My husband was diagnosed almost 11 years ago with an anaplastic astrcytoma stage 4 on his left frontal lobe. they did surgery and and couldnt remove it because of where it was at. He underwent 6 weeks of radiation. the doctors gave him 1 year to live. He was tumor free up until may of this year. He had surgery on June 10th and they removed 98% of the tumor.This time when tumor came back it was a grade 3. He is undergoing chemo right now and has some right sided weakness. But other than that he is recovering well. THE docs say he has a long life ahead of him.

Keep God in your heart and mind and you will get through anything. He is the answer to all. Put it in his hands and he will carry them through it. Keep on the bright side.. YOu can't look at it as the end of your life..Do not ever give up hope. We have you in our thoughts and prayers.

kellbell

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

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.

kellbell

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

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.

OCMenno

kellbell said:

My husband was diagnosed
My husband was diagnosed almost 11 years ago with an anaplastic astrcytoma stage 4 on his left frontal lobe. they did surgery and and couldnt remove it because of where it was at. He underwent 6 weeks of radiation. the doctors gave him 1 year to live. He was tumor free up until may of this year. He had surgery on June 10th and they removed 98% of the tumor.This time when tumor came back it was a grade 3. He is undergoing chemo right now and has some right sided weakness. But other than that he is recovering well. THE docs say he has a long life ahead of him.

Keep God in your heart and mind and you will get through anything. He is the answer to all. Put it in his hands and he will carry them through it. Keep on the bright side.. YOu can't look at it as the end of your life..Do not ever give up hope. We have you in our thoughts and prayers.

Here we go again!
My wife was diagnosed in 2006 with Anaplastic Astrocytoma Grade 3. Surgery, radiation, chemo, you know the drill! Things remained stable until recently. The tumor is back, same location - only deeper, golf ball size in the right parietal lobe. She has been having problems with balance, vision, and weakness in the left side of her body.

She is scheduled for another surgery on Monday July 27, 2009. The doctor's say the risks and the outcome should be about the same as the first time. 2006 was a very hard year but I'm hoping this time, knowing what is going on now, things will be easier. I have heard that when tumors come back, they often come back a higher grade. We are praying that that is not the case and everything will go well. 2007 and 20008 have been 2 of the best years of our life.

The team at the cancer centre told us last week that my wife will go through chemo again after the surgery. It will most likely be a different kind of chemo. She was on Temodar last time. Strange thing is, at that time we were told that Temodar was the very best chemo for this type of tumor. So, does that mean the first time they tried the best, and this time they will try the second best?

Anyway, we will take it one day at a time and continue to walk with the Lord. Our faith has only gotten stronger these past 3 years. Our 3 children (now 9, 8, and 3) also help us keep it together.

Please continue to pray for us, as we do for all of you!

PBJ Austin

OCMenno said:

Here we go again!
My wife was diagnosed in 2006 with Anaplastic Astrocytoma Grade 3. Surgery, radiation, chemo, you know the drill! Things remained stable until recently. The tumor is back, same location - only deeper, golf ball size in the right parietal lobe. She has been having problems with balance, vision, and weakness in the left side of her body.

She is scheduled for another surgery on Monday July 27, 2009. The doctor's say the risks and the outcome should be about the same as the first time. 2006 was a very hard year but I'm hoping this time, knowing what is going on now, things will be easier. I have heard that when tumors come back, they often come back a higher grade. We are praying that that is not the case and everything will go well. 2007 and 20008 have been 2 of the best years of our life.

The team at the cancer centre told us last week that my wife will go through chemo again after the surgery. It will most likely be a different kind of chemo. She was on Temodar last time. Strange thing is, at that time we were told that Temodar was the very best chemo for this type of tumor. So, does that mean the first time they tried the best, and this time they will try the second best?

Anyway, we will take it one day at a time and continue to walk with the Lord. Our faith has only gotten stronger these past 3 years. Our 3 children (now 9, 8, and 3) also help us keep it together.

Please continue to pray for us, as we do for all of you!

Hi OCMenno
Thanks for the update. You were the first person to greet me when I joined this board and I've been wondering how things are for you and your wife. I will mark my calendar for July 27 and your family will be in my thoughts and prayers, as well as everyone else on this board.

OCMenno

PBJ Austin said:

Hi OCMenno
Thanks for the update. You were the first person to greet me when I joined this board and I've been wondering how things are for you and your wife. I will mark my calendar for July 27 and your family will be in my thoughts and prayers, as well as everyone else on this board.

Thank you PBJ Austin
Thanks! It means a lot to me. We have a great support network with our family and friends in our local church as well as other fellow brothers and sisters in Christ. There is something extra special about sharing with others like you, that know what we are going through. I will do my best to submit an update as soon as possible after the surgery. Next week will probably be out of the question but hopefully shortly after I can spread the good news of another successful operation.

While we continue to stay strong and hope for a full recovery some day, my wife and I continue to accept that "His will be done", even if we don't understand it or like it. If she does not live a full life, I'm sure something good will come out of it.

When the apostel Paul asked 3 times to be healed of "a thorn in the flesh", God replied, "My grace is sufficient for thee; my strength is made perfect in weakness".

Thanks again and God bless!

OCMenno

OCMenno said:

Thank you PBJ Austin
Thanks! It means a lot to me. We have a great support network with our family and friends in our local church as well as other fellow brothers and sisters in Christ. There is something extra special about sharing with others like you, that know what we are going through. I will do my best to submit an update as soon as possible after the surgery. Next week will probably be out of the question but hopefully shortly after I can spread the good news of another successful operation.

While we continue to stay strong and hope for a full recovery some day, my wife and I continue to accept that "His will be done", even if we don't understand it or like it. If she does not live a full life, I'm sure something good will come out of it.

When the apostel Paul asked 3 times to be healed of "a thorn in the flesh", God replied, "My grace is sufficient for thee; my strength is made perfect in weakness".

Thanks again and God bless!

Surgery Successful! Lomustine?
My wife had her 2nd surgery on Monday July 27th. The surgery lasted 5 hours and went well. She was actually able to go home from the hospital 2 days after the surgery. Amazing! Praise God! She is at home taking it easy. Medications, frequent naps and help with the main daily tasks seem to help tremendously. We now wait for the cancer centre to call us in to discuss chemotherapy again. In 2006 she was on Temodar but will start a different type of chemo this time. We were told a couple weeks ago that it would most likely be "Lomustine", also taken orally. Perhaps someone has experience with this type? Strange because we were told in 2006 that Temodar was the best thing for brain cancer, the only chemo that could penetrate the BBB, etc. From the little research that I have done on Lomustine, it sounds like this is a much older form of chemo and not much success with it. Any info would be great.

PBJ Austin

OCMenno said:

Surgery Successful! Lomustine?
My wife had her 2nd surgery on Monday July 27th. The surgery lasted 5 hours and went well. She was actually able to go home from the hospital 2 days after the surgery. Amazing! Praise God! She is at home taking it easy. Medications, frequent naps and help with the main daily tasks seem to help tremendously. We now wait for the cancer centre to call us in to discuss chemotherapy again. In 2006 she was on Temodar but will start a different type of chemo this time. We were told a couple weeks ago that it would most likely be "Lomustine", also taken orally. Perhaps someone has experience with this type? Strange because we were told in 2006 that Temodar was the best thing for brain cancer, the only chemo that could penetrate the BBB, etc. From the little research that I have done on Lomustine, it sounds like this is a much older form of chemo and not much success with it. Any info would be great.

Great news!!
I can't provide any info about the new drug but I hope someone else can. I'm very happy about your wife's surgery and that she's already home, YAY!! Please do keep us posted on how her meds work for her and how she is doing. And take care of yourself as well.

Jesswontgiveup

JanetLMcCoy said:

My nephew
His tumor was in the right insular (pushing on the temperal lobe) and was about 6 cm, about the size of an egg. He had surgery to remove the tumor and doctor's believe (from before/after) tests that all the tumor was removed. His surgeon felt like it was a grade II, but when the pathology came back, the radiologist graded it a III.

They called a meeting of the Tumor Board and the majority decided a grade III. He had six weeks of radiation and the doctor's recommended no chemo.

He's done remarkably well; he needed very little physical therapy. He's past the six month point and is back at work and driving. The doctor's have been up-front about the potential return of cancer and had said he will have chemo then.

He's very upbeat and positive, but of course, sometimes it hits him. They have a three-year-old son and you can't help but think about the future. Their faith is very strong, and we all know how very blessed they are.

He recently said he wished he could find someone who has done well and survived past the diagnosis. He has not been willing to attend support group meetings so none of us have pushed it.

I posted wanting to try to find someone who might be willing to talk to him by e-mail ... and just want to pass along the information. I don't know if he will do it, but want him to have the opportunity.

Through this journey, I try to support, encourage and pray. Thanks for your help.

Your Nephew
Your nephews case sounds alot like mine.

I had my surgery June 3d of this year at Duke medical U in NC. They had hoped to get 60% of the lemon sized tumor. Only I started to bleed out on the table they had to stop, give me a transfusion on the table and another in Neuro ICU. After a 2.5 week stay in the hospital(mostly ICU and partly on the vent) I was able to stay at a hotel in town and then finally go home. Six hours away.

I started on 6 weeks of radiation Mon-Fri. Along with oral chemo(temodar)
They estimated they removed 40% of the tumor by surgery and I went in for my first MRI since surgery last month. Seventy percent is gone! The only damage I have from surgery is mild nerve damage in my skin at surgery site. Thank God. I also have a strong faith and am a mother. My son is five years old. I'm continuing with the oral chemo 5 days on 23 off. Probably for at least a year. My next round will most likely be pushed back though, my white blood cell and platelet count dropped big time this week. So...we'll see how that goes. I will most definitely keep your nephew and your family in my prayers.

Fusionera

Grade 3, an anaplastic astrocytoma
Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

nrmbenz

Fusionera said:

Grade 3, an anaplastic astrocytoma
Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

My Brother
My brother was diagnosed with an anaplastic oligoastrocytoma WHO Grade III two weeks ago. Intraoperatively they did not take it all as they were afraid of permanently damaging his motor cortex leaving him speechless. So tumor remains (they also thought it was a GBM Grade IV on cold path in surgery). Anyway - we have just seen the oncologist two days ago and now she says they have decided on whole brain radiation - which I do not understand as this is usually reserved for metastatic cancers - I was under the assumption that they would use fractionated focal radiation and Temodar (which he will start).
He is 43 and has 1 11 yr old son. Unfortunately he made his living talking and has slurred speech now.
Does anyone have experience with whole brain radiation in these cases? And how do you all feel after your chemo and radiation starts - I do not have any experience with Temodar - how well is it tolerated - what can I tell him to expect? All advice / information appreciated. Has anyone had to move forward and use self-directed tumor vaccines made from their own tumor? They have held his tissue for this purpose.
Thanks - I am caring for him for the next 2 weeks from out of state - do most of you resume normal life and jobs during chemo/XRT?

nrmbenz

narthur said:

Me three!!!
Thank you Christy! I also agree! It's not a death sentence unless you think that way. You can go through life thinking that about everything... I choose not to live my life that way. I think a positive outlook on things goes a long way in every area of your life, especially cancer!

I'm 30yr old, single, no kids, was diagnosed in march of this year with anaplastic astrocytoma, grade III. My tumor was in my right frontal lobe. Had surgery,after surgery my left side didn't work(kinda like a stroke)inpatient and outpatient rehab,radiation/chemo, and now i'm on chemo. about to start my 3rd month out of 6. I haven't returned back to work or school. i want to but my energy is random and my profession is a high pace job (x-ray technologist)I'll get back there, soon enough!
Glad to hear your newphew in law is doing well! He'll be fine with many more years to live!

Brother with AAO 3 in left frontal lobe -
My brother was diagnosed with an anaplastic oligoastrocytoma WHO Grade III two weeks ago. Intraoperatively they did not take it all as they were afraid of permanently damaging his motor cortex leaving him speechless. So tumor remains (they also thought it was a GBM Grade IV on cold path in surgery). Anyway - we have just seen the oncologist two days ago and now she says they have decided on whole brain radiation - which I do not understand as this is usually reserved for metastatic cancers - I was under the assumption that they would use fractionated focal radiation and Temodar (which he will start).
He is 43 and has 1 11 yr old son. Unfortunately he made his living talking and has slurred speech now.
Does anyone have experience with whole brain radiation in these cases? And how do you all feel after your chemo and radiation starts - I do not have any experience with Temodar - how well is it tolerated - what can I tell him to expect? All advice / information appreciated. Has anyone had to move forward and use self-directed tumor vaccines made from their own tumor? They have held his tissue for this purpose.
Thanks - I am caring for him for the next 2 weeks from out of state - do most of you resume normal life and jobs during chemo/XRT?

sue Siwek

my husband had aa grade 3
my husband had aa grade 3 diagnosed in 2000, so yes it is possible to beat the odds. he is young and it sounds like he has bounced back well. my husband had some difficulties, numbness, speech problems but therapy helped. he would still be going strong had he not been diagnosed with and unrelated malady called parkinson's disease. he is disabled but his mind is strong.

PBJ Austin

sue Siwek said:

my husband had aa grade 3
my husband had aa grade 3 diagnosed in 2000, so yes it is possible to beat the odds. he is young and it sounds like he has bounced back well. my husband had some difficulties, numbness, speech problems but therapy helped. he would still be going strong had he not been diagnosed with and unrelated malady called parkinson's disease. he is disabled but his mind is strong.

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.

lawslegal

PBJ Austin said:

I'm so glad to find this board
Just 2 days ago my 25-year-old sister was diagnosed with Anaplastic Astrocytoma. One of her tumors was removed at MD Anderson by Dr. Sawaya. She recovered nicely from the surgery but we were devastated when the pathology report came back with this diagnosis. I've been reading so much grim news on the internet, and this is the first positive thing I've found.

Thank you all for sharing your stories, this will help my family and me as we begin this journey.

Hi
My son is five years
Hi

My son is five years cancer free from a grade II astrocytoma. I have even written a book called, "Michael's Journey" to inspire people and families like you.

He was 13 at the time and is now 18, cancer free and loving college life!!!

Laura (Michael's Mom)

kitkatkaz

Anaplastic Astrocytoma stage 3 5ys out cancer free

Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.

The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.

I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.

Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat

oneangel

I'm sorry for your families pain.
There is no timeline. Don't get me wrong.....it's not easy. Refuse to be negative. Dont live according to anyone's timeline. Employ the best people you can and attack from all angles. Not just medically.....try nutrition, spiritual council, accupressure......anything. But don't allow statistics to run your life. You are in my prayers....