Anaplastic Astrocytoma - Reaching out - Pre surgery questions

AshleyWF

Hi,

I was hoping someone who has gone through a similar situation, someone diagnosed with the same type of cancer or family and friends, might be able to answer some questions.

My boyfriend of 5 years, age 29 was diagnosed three days ago with anaplastic astrocytoma. This all only began 3 weeks ago, starting with severe headaches. A trip to the doctor’s office lead to a trip to emergency. Blood work that night lead to a CT scan the next morning. The CT scan turned up something abnormal. He was then injected with a type of dye and sent for another CT scan. This helped rule out a aneurism and other things they had believed it could be. He was sent in for an emergency MRI a few days later and told to schedule an appointment with his family doctor. At his doctor’s appointment on Tuesday, he was told he had anaplastic astrocytoma and he would need to go the following day (Wednesday) and speak with a neuro surgeon. He went in yesterday to speak with him and the surgery date is booked for next week Thursday.

This has all moved so quickly, the first trip to the emergency room and something turning up abnormal hasn’t even set in, and we are already onto a surgery date.

I have taken time to read up on this cancer, but he seems to want to go in blind, not really knowing how serious this is. He didn’t ask very many questions at all when speaking with the surgeon, which left me a bit frustrated. So here we are with a surgery date and I have no idea what to expect, what happens next, what exactly this cancer is (other than the scary facts and stories I have picked up off the internet)

He was told the tumour is deep lesion. 2 and a half cm into his brain on the left back side and 1 and a quarter out. From the MRI, they did not see any other tumours surrounding it, but he was told they would not know anything for sure until they go in. They have said it is in a good spot. I’m not sure if this is something I can take comfort in.

Some questions:

In reading on the internet, it seems as though the name anaplastic astrocytoma means this is grade 3?

The survival rates seem to be unclear and older studies, does anyone have any information on this?

I have been fortunate enough to not have anyone in my life have to go through radiation of chemo therapy, can you tell me what I am to expect after surgery?
(they have told us, until surgery is done and they know exactly what they are dealing with, they do not know if it will be radiation/chemotherapy or a combination of both)

Should the fact that this is all going so quickly alarm me?

I have many questions running through my head, I can’t seem to pin point them all at this time, but even just answers to these questions would help. Any information at all at this point would help.

I appreciate every response!


Ashley

momsworld

Hi Ashley
My name is Tina and I have a 13yr old daughter with anaplastic astrocytoma. I will give you some history about our experience. My daughter, then 12, was having severe headaches. We brought her to her PCP and was told it was hormonal and to wait it out. a few months go by with these headaches and then she starts to vomit everytime she would wake up. Brought her back to her PCP and was told it was virtigo. Ok, that would explain her dizziness and vommiting, but not the headaches. A few days after that appt, she was vommiting everytime she moved her head, so I called her PCP and demanded a ct scan. The next day she had one .
We were not even out of the hospital parking lot after the ct scan and the doctor called. She said that there was a mass in her brain about the size of a golfball and to go home and pack a few things and to go to Dartmouth medical center in Lebanon,NH where a neurosurgeon would be waiting for us. Everything moved so fast. She was admitted on the spot and given meds to reduce swelling of her brain and 4 days later, march 27, 2010 she had her 1st crainiotomy. those were the worst days of my life, so I thought then. 3 days after her surgery they did a MRI and they found more tumor, so she had her 2nd crainiotomy.
She did very well with recovery and we were home about a week later. we were told that she had AA3 about 3 weeks later after they sent out the tumor to different hospitals as there were conflicting results. After diagnosis, I went into survival mode. I did not even know what I was doing really, my body just did what it had to do to survive. She started with oral chemo (Temodar) and had 35 radiation treatments. Her next MRI was scheduled for sept and we thought for sure that things would be fine, but to our surprise, the cancer was growing back during treatment. They scheduled another surgery to remove new growth. We had the best surgeon this time and a 4 hour surgery took 8 hours. She was very careful and very thorough. After that surgery we were told there was nothing more they could do and she was going to die. I did not like that answer and flipped out on them and demanded her records and took her out of there. We went to Dana Farber/Jimmy Fund clinic in Boston and they put her on a new but FDA approved treatment and she has been cancer free for 10 months now. Just cut her to partial treatments. she is doing really well now. My email is sata816@comcast.net if you would like to talk or if you have questions. I would love to talk to you. Tina

patriciam

AA3
Ashley,
So sorry you are all going through this horrible experience. I hope your boyfriend does well. It's a scary illness, no doubt. Yes, AA is grade 3, survival rate varies....all the research says 2-3 years but people on this site have lived longer, radiation treatments make people tired, worn out, they need lots of rest, chemo can give stomach aches, but have him take Zofran before his treatments, it will help. After surgery varies. Some people go home quickly and may need outpatient rehab, it really depends on how he will wake up. Finding a tumor and treating it is a quick thing, really quick as it needs to be. God bless you on this journey. I don't want to scare you with my answers, but everything I am saying I have experienced with my loved one.
Hugs,
pat

esp0813

Hi Ashley,

I'm sorry to hear about your boy friend. My son was 24 when he was diagnosed with an Anaplastic Astrocytoma. Your right in that this is considered a grade 3. Don't pay attention to the survival rates as they are based on the entire population of people who have this. The majority of people who have this are much older which makes a huge difference. Like my son, your boy friend is young and will fight this better than a 75 man as an example. It's important that he takes care of himself, eats well exercises, etc. The fact the surgeon said tht the tumor is in a pretty good spot, means they can operate and get most of it out. Depending on the location of the tumor, post surgery he can expect to get back to a normal life fairly quickly. He will most likely have radiation for about 6 1/2 weeks 5 days a week. Chemo will also be used which for what he has is in pill form. He'll be on chemo daily while taking radiation. After a 1 - 2 month break he'll resume chemo for 12 months by taking it for 5 days then not taking it for 23 days. This will be repeated 12 times. My son was back to work 4 months after surgery. Some can get back sooner, some longer, depends on many factors. After surgery my son was paralyzed on his left side for 4 or 5 days. 3 weeks later he was hiking and getting back to a normal life. He only eats organic food and no longer eats red meat. No junk food other than an occasional snack (holiday / birthday etc). He runs, cycles and goes to the gym often. The stats can be upsetting and again they don't address an otherwise healthy young male. Afterwards he'll go for MRI's every 2 months for a year or two. My son is now 16 months post surgery. This morning he competed in a marathon (cycling and running) and finished 3rd! Anything is possible. He needs to believe and take the best care of himself that he can. What your hoping for is more time as the treatment and care continue to get better and better. If you have any questions please feel free to contact me. One last thing, hopefully he is being treated in a good cancer center. Thats important. You need a really good surgeon. It makes all the difference. Best of luck. Ed e-mail address esp0813@aol.com

I_Promise

one day at a time
Hi,

I am so sorry about your boyfriend. I am surprise they already gave you a diagnosis without surgery or a biopsy. The AA 3 will have to be confirmed on the pathology slides. Also make sure he gets his treatment at a Brain Tumor Center. Brain cancer is like boutique medicine. It is very rare (not like breast or lung). You need to go to a place where the docs sees this kind of thing day in and day out. As for the stats, don't read them. The stats are from the 80's and before Temodar. Also there is a wide rage around that 4.5 years survival average. Some people live for decades, some go in remission. Take care,

Julia

AshleyWF

I_Promise said:

one day at a time
Hi,

I am so sorry about your boyfriend. I am surprise they already gave you a diagnosis without surgery or a biopsy. The AA 3 will have to be confirmed on the pathology slides. Also make sure he gets his treatment at a Brain Tumor Center. Brain cancer is like boutique medicine. It is very rare (not like breast or lung). You need to go to a place where the docs sees this kind of thing day in and day out. As for the stats, don't read them. The stats are from the 80's and before Temodar. Also there is a wide rage around that 4.5 years survival average. Some people live for decades, some go in remission. Take care,

Julia

Thank you
Thank you so much for taking the time to respond. Any bit of information helps!
Thursday is surgery day, and then we go from there.
I to found it strange that without any type of biopsy, they could name and grade this cancer. I guess that leaves hope that it could be something completely different once he is in and they have taken it out.
I’m so sorry to hear of the other families affected by this cancer, I wish you all the best… thank you for reaching out!

I'm sure I will have many more updates to come.

I_Promise

esp0813 said:

Hi Ashley,

I'm sorry to hear about your boy friend. My son was 24 when he was diagnosed with an Anaplastic Astrocytoma. Your right in that this is considered a grade 3. Don't pay attention to the survival rates as they are based on the entire population of people who have this. The majority of people who have this are much older which makes a huge difference. Like my son, your boy friend is young and will fight this better than a 75 man as an example. It's important that he takes care of himself, eats well exercises, etc. The fact the surgeon said tht the tumor is in a pretty good spot, means they can operate and get most of it out. Depending on the location of the tumor, post surgery he can expect to get back to a normal life fairly quickly. He will most likely have radiation for about 6 1/2 weeks 5 days a week. Chemo will also be used which for what he has is in pill form. He'll be on chemo daily while taking radiation. After a 1 - 2 month break he'll resume chemo for 12 months by taking it for 5 days then not taking it for 23 days. This will be repeated 12 times. My son was back to work 4 months after surgery. Some can get back sooner, some longer, depends on many factors. After surgery my son was paralyzed on his left side for 4 or 5 days. 3 weeks later he was hiking and getting back to a normal life. He only eats organic food and no longer eats red meat. No junk food other than an occasional snack (holiday / birthday etc). He runs, cycles and goes to the gym often. The stats can be upsetting and again they don't address an otherwise healthy young male. Afterwards he'll go for MRI's every 2 months for a year or two. My son is now 16 months post surgery. This morning he competed in a marathon (cycling and running) and finished 3rd! Anything is possible. He needs to believe and take the best care of himself that he can. What your hoping for is more time as the treatment and care continue to get better and better. If you have any questions please feel free to contact me. One last thing, hopefully he is being treated in a good cancer center. Thats important. You need a really good surgeon. It makes all the difference. Best of luck. Ed e-mail address esp0813@aol.com

your son is good example for my sister
My 31 years old sister was just diagnosed with an anaplastic astrocytoma. I just wanted to let you know that she is intend on keeping up with her athletic endeavors. Your son is a great role model. She just had surgery (and nobody could ever tell) and is gearing up for the radiation and chemo. When was your son diagnosed? Any recurences?

Julia

esp0813

I_Promise said:

your son is good example for my sister
My 31 years old sister was just diagnosed with an anaplastic astrocytoma. I just wanted to let you know that she is intend on keeping up with her athletic endeavors. Your son is a great role model. She just had surgery (and nobody could ever tell) and is gearing up for the radiation and chemo. When was your son diagnosed? Any recurences?

Julia

AA3
Hi Julia,
Thanks for the kind words. I am so proud of my son. He has handled this better than I ever could. We found out about his AA3 in April 2010. He was driving and thankfully was at a red light when he had a gran mal seizure. It was like an angel looking over him because a minute before that he was traveling 40 miles per hour and easily could have been killed or killed someone else. In the last 16 months he has had 8 MRI scans and each one looks better than the last. No recurrance at all. I think it of the following things has really helped him. First we got him to a great hospital in NYC where we had a really good surgeon. He was lucky that his tumor was in a location that could be resected. (angel again?) Everything was removed that was visable. He has the love and support of family and friends, he takes great care of himself, eats very healthy, and exercises about 5 days a week.He started dating a girl only 3 weeks before this all happened. Her name is Christina (I'm not overly religious but notice the Christ in her name). Who knows! I told her when we were in the hospital that no one would think poorly of her if she left. They only dated 2 or 3 times. She not only didn't leave, but she virtually lived in the hospital with with. They have been together ever since. He is planning on asking her to marry him next weekend. As his father I take some comfort in knowing he has the best medical care, the love and support of family and friends, and he takes great care of himself with diet and exercise. I really believe that those factors will give him the best possible outcome. Thanks again. Ed esp0813@aol.com

diamond24

Anaplastic Astrocytoma grade III
Hello Ashley,
I am new to this site and very glad that I found it. You have some great questions and unfortunately, I have experience with this type of Brain Cancer. My son is 17 and was diagnosed a few months ago with AA stage III. His is located in the left thalamus and was caught very early at 1cm. This will be my sons third cancer.

He was first diagnosed at age 5 with rhabdomyosarcoma and then relapsed at age 12. two surgeries, 2 IMRT radiation of 4500 gys, lots of chemo(very strong) We were getting MRI every two months since his relapse in 2007. The scan on January 2011, showed a very small 3mm growth which did not look like a tumor, waiting 6 weeks but it grew and it was discovered to be a tumor now at a 1cm in size.

It all happened very fast, surgery was next as he has a cratiotomy to remove the tumor. We were told it could not be removed and only a biopsy would be done. We then went to one of the best neuro surgeons in the world and he said he would remove it. He went in two weeks after
the MRI, had major brain surgery to remove entire tumor and was back in school within another two weeks. Unfortunatly, there were many opinions as to what this tumor was(type) finally sent to John Hopkins and they confirmed a diagnoses of AA 3, but it was a very strange tumor and most likely caused by the past two radiation he had to the left orbit.

Within 6 weeks of the surgery, we went to Loma Linda Medical Center in California and he had 6 weeks of PROTON therapy. He also had 42 days of 160 mgs of temedor. He did very well on treatment and no side effects at all except fatigue. We have now been home about three weeks and he has his first MRI since treatment on August 30th. He will also start 6 months of temedor 360mgs 5 days per month. Each diagnoses has been a true nightmare but we have learned so much each time which I believe has been so important in my son's recovery.

You want evertything to move as quickly as possible but just make sure you have ALL your written questions answered. Have the Best neuro surgeon and neuro oncologist. With this type of tumor, time is very important and the quicker they remove and get him on treatment , the better.

ALWAYS question the doctors and do your research. Unfortunately we were not told about the PROTON radiation and we were just about to start the IMRT radiation. I researched and found that PROTON would be much better for our son as he had already had so much radiation in the past and this is what caused this tumor. Proton has no exit so it can't hurt the normal
tissue like convential radiation. the effects/success rate to the tumor bed may be the same but the after effects and side effects are far superior. Please look into it before conventional radiation.

Statistics mean nothing. If they did, we would not have my son with us today.
This is a whole new cancer area for us and I appreciate all of the positive feedback on this site. No doubt, we are all scared but there are so many advanced treatments out there, but you have to take control of your own health and treatment! God bless you and feel free to email. or respond back.

johngiustino

discuss how the removed tumor tissue is stored
I am not sure if with your type of brain tumor if you would be eligible for promising immunotherapy clinical trials. I would have been but when they removed my tumor they prepared it in a way that excluded me from a trial I would have like to have been involved in. Get an opinion from a major brain tumor center. Talk to them about how the tissue will be stored. Being newly diagnosed you may be in a position for promising therapies. Once you are past a certain point that window of opportunity may not be there.

Good luck,
JG

alutiiqmom

be careful
Hi:
My daughter was diagnosed with anaplastic astrocytoma 3 in February 2011. The first opinion by a neurosurgeon said it was very straight forward surgury. The second surgeon told us it was very serious and part was inoperable because it was located in the basal gangalia. We then decided to go to Seattle where she was treated at the Seattle Children's Hospital. The oncologist told us there that Brain radiaition has to be very specific to minimize damage so she recommended University of Washington because they have a lot of experience with that. We from Alaska, so Seattle has a lot more experience. I think you are wise on asking questions and getting opinions. It seems like Duke, MD Anderson and Jimmy Fund are good hospitals. I send God's blessings to you and your friend.

I_Promise

esp0813 said:

AA3
Hi Julia,
Thanks for the kind words. I am so proud of my son. He has handled this better than I ever could. We found out about his AA3 in April 2010. He was driving and thankfully was at a red light when he had a gran mal seizure. It was like an angel looking over him because a minute before that he was traveling 40 miles per hour and easily could have been killed or killed someone else. In the last 16 months he has had 8 MRI scans and each one looks better than the last. No recurrance at all. I think it of the following things has really helped him. First we got him to a great hospital in NYC where we had a really good surgeon. He was lucky that his tumor was in a location that could be resected. (angel again?) Everything was removed that was visable. He has the love and support of family and friends, he takes great care of himself, eats very healthy, and exercises about 5 days a week.He started dating a girl only 3 weeks before this all happened. Her name is Christina (I'm not overly religious but notice the Christ in her name). Who knows! I told her when we were in the hospital that no one would think poorly of her if she left. They only dated 2 or 3 times. She not only didn't leave, but she virtually lived in the hospital with with. They have been together ever since. He is planning on asking her to marry him next weekend. As his father I take some comfort in knowing he has the best medical care, the love and support of family and friends, and he takes great care of himself with diet and exercise. I really believe that those factors will give him the best possible outcome. Thanks again. Ed esp0813@aol.com

Very similar outlook esp0813!
My sister started dating a guy (3 dates) before all of this happened. He has become a huge source of support and love for her. I do believe that good diet, exercise, and family & romantic love can help conquer it all!

Julia

AshleyWF

alutiiqmom said:

be careful
Hi:
My daughter was diagnosed with anaplastic astrocytoma 3 in February 2011. The first opinion by a neurosurgeon said it was very straight forward surgury. The second surgeon told us it was very serious and part was inoperable because it was located in the basal gangalia. We then decided to go to Seattle where she was treated at the Seattle Children's Hospital. The oncologist told us there that Brain radiaition has to be very specific to minimize damage so she recommended University of Washington because they have a lot of experience with that. We from Alaska, so Seattle has a lot more experience. I think you are wise on asking questions and getting opinions. It seems like Duke, MD Anderson and Jimmy Fund are good hospitals. I send God's blessings to you and your friend.

Surgery Complete
Hi,

Haven’t been around to update, haven’t felt much in the state of mind to sit down and wright either, but here I am.
Surgery is now complete. He was in the hospital for a week, has now been back to the doctor to have the sutures removed and went to the cancer clinic today.
He has been recovering great and there were no side effects as of yet. Everything is moving, everything is working. He is quite sensitive to sound however and complains of feeling almost like he has water in his left ear.
Still have not received the full results back, but the doctor at the cancer clinic has now called it Oligodenroglioma.
The doctor sat down with him today and went through one of this scans. They were unable to remove all of the tumour as it has spread to the right hand side of his brain, which is inoperable.
He explained that this is a slow growing tumour. They are now doing genetic testing and blood work to determine what has to be done. They are trying to delay radiation cause of the side effects? WHY DELAY?

I sit in a completely different world right now, almost feeling on a cloud. I guess seeing him come out of surgery so well, kind of made me feel like everything was going to be ok. Hearing “surgery was a success” I guess allowed me to tell myself they removed it all.
Does anyone have any experience or knowledge on this new type of cancer. My understanding is that it is primary glial brain tumours that are divided into grade II and anaplastic grade III tumors. Are we looking at a whole new road here?

Thank you so much for sharing the information you have and for the support. My heart, thoughts and prayers go out to everyone who is on this site!

Reaching out once more

Ashley

AshleyWF

alutiiqmom said:

be careful
Hi:
My daughter was diagnosed with anaplastic astrocytoma 3 in February 2011. The first opinion by a neurosurgeon said it was very straight forward surgury. The second surgeon told us it was very serious and part was inoperable because it was located in the basal gangalia. We then decided to go to Seattle where she was treated at the Seattle Children's Hospital. The oncologist told us there that Brain radiaition has to be very specific to minimize damage so she recommended University of Washington because they have a lot of experience with that. We from Alaska, so Seattle has a lot more experience. I think you are wise on asking questions and getting opinions. It seems like Duke, MD Anderson and Jimmy Fund are good hospitals. I send God's blessings to you and your friend.

Surgery Complete
Hi,

Haven’t been around to update, haven’t felt much in the state of mind to sit down and wright either, but here I am.
Surgery is now complete. He was in the hospital for a week, has now been back to the doctor to have the sutures removed and went to the cancer clinic today.
He has been recovering great and there were no side effects as of yet. Everything is moving, everything is working. He is quite sensitive to sound however and complains of feeling almost like he has water in his left ear.
Still have not received the full results back, but the doctor at the cancer clinic has now called it Oligodenroglioma.
The doctor sat down with him today and went through one of this scans. They were unable to remove all of the tumour as it has spread to the right hand side of his brain, which is inoperable.
He explained that this is a slow growing tumour. They are now doing genetic testing and blood work to determine what has to be done. They are trying to delay radiation cause of the side effects? WHY DELAY?

I sit in a completely different world right now, almost feeling on a cloud. I guess seeing him come out of surgery so well, kind of made me feel like everything was going to be ok. Hearing “surgery was a success” I guess allowed me to tell myself they removed it all.
Does anyone have any experience or knowledge on this new type of cancer. My understanding is that it is primary glial brain tumours that are divided into grade II and anaplastic grade III tumors. Are we looking at a whole new road here?

Thank you so much for sharing the information you have and for the support. My heart, thoughts and prayers go out to everyone who is on this site!

Reaching out once more

Ashley

AshleyWF

alutiiqmom said:

be careful
Hi:
My daughter was diagnosed with anaplastic astrocytoma 3 in February 2011. The first opinion by a neurosurgeon said it was very straight forward surgury. The second surgeon told us it was very serious and part was inoperable because it was located in the basal gangalia. We then decided to go to Seattle where she was treated at the Seattle Children's Hospital. The oncologist told us there that Brain radiaition has to be very specific to minimize damage so she recommended University of Washington because they have a lot of experience with that. We from Alaska, so Seattle has a lot more experience. I think you are wise on asking questions and getting opinions. It seems like Duke, MD Anderson and Jimmy Fund are good hospitals. I send God's blessings to you and your friend.

Surgery Complete
Hi,

Haven’t been around to update, haven’t felt much in the state of mind to sit down and wright either, but here I am.
Surgery is now complete. He was in the hospital for a week, has now been back to the doctor to have the sutures removed and went to the cancer clinic today.
He has been recovering great and there were no side effects as of yet. Everything is moving, everything is working. He is quite sensitive to sound however and complains of feeling almost like he has water in his left ear.
Still have not received the full results back, but the doctor at the cancer clinic has now called it Oligodenroglioma.
The doctor sat down with him today and went through one of this scans. They were unable to remove all of the tumour as it has spread to the right hand side of his brain, which is inoperable.
He explained that this is a slow growing tumour. They are now doing genetic testing and blood work to determine what has to be done. They are trying to delay radiation cause of the side effects? WHY DELAY?

I sit in a completely different world right now, almost feeling on a cloud. I guess seeing him come out of surgery so well, kind of made me feel like everything was going to be ok. Hearing “surgery was a success” I guess allowed me to tell myself they removed it all.
Does anyone have any experience or knowledge on this new type of cancer. My understanding is that it is primary glial brain tumours that are divided into grade II and anaplastic grade III tumors. Are we looking at a whole new road here?

Thank you so much for sharing the information you have and for the support. My heart, thoughts and prayers go out to everyone who is on this site!

Reaching out once more

Ashley

AshleyWF

alutiiqmom said:

be careful
Hi:
My daughter was diagnosed with anaplastic astrocytoma 3 in February 2011. The first opinion by a neurosurgeon said it was very straight forward surgury. The second surgeon told us it was very serious and part was inoperable because it was located in the basal gangalia. We then decided to go to Seattle where she was treated at the Seattle Children's Hospital. The oncologist told us there that Brain radiaition has to be very specific to minimize damage so she recommended University of Washington because they have a lot of experience with that. We from Alaska, so Seattle has a lot more experience. I think you are wise on asking questions and getting opinions. It seems like Duke, MD Anderson and Jimmy Fund are good hospitals. I send God's blessings to you and your friend.

Surgery Complete
Hi,

Haven’t been around to update, haven’t felt much in the state of mind to sit down and wright either, but here I am.
Surgery is now complete. He was in the hospital for a week, has now been back to the doctor to have the sutures removed and went to the cancer clinic today.
He has been recovering great and there were no side effects as of yet. Everything is moving, everything is working. He is quite sensitive to sound however and complains of feeling almost like he has water in his left ear.
Still have not received the full results back, but the doctor at the cancer clinic has now called it Oligodenroglioma.
The doctor sat down with him today and went through one of this scans. They were unable to remove all of the tumour as it has spread to the right hand side of his brain, which is inoperable.
He explained that this is a slow growing tumour. They are now doing genetic testing and blood work to determine what has to be done. They are trying to delay radiation cause of the side effects? WHY DELAY?

I sit in a completely different world right now, almost feeling on a cloud. I guess seeing him come out of surgery so well, kind of made me feel like everything was going to be ok. Hearing “surgery was a success” I guess allowed me to tell myself they removed it all.
Does anyone have any experience or knowledge on this new type of cancer. My understanding is that it is primary glial brain tumours that are divided into grade II and anaplastic grade III tumors. Are we looking at a whole new road here?

Thank you so much for sharing the information you have and for the support. My heart, thoughts and prayers go out to everyone who is on this site!

Reaching out once more

Ashley

ktubby

momsworld said:

Hi Ashley
My name is Tina and I have a 13yr old daughter with anaplastic astrocytoma. I will give you some history about our experience. My daughter, then 12, was having severe headaches. We brought her to her PCP and was told it was hormonal and to wait it out. a few months go by with these headaches and then she starts to vomit everytime she would wake up. Brought her back to her PCP and was told it was virtigo. Ok, that would explain her dizziness and vommiting, but not the headaches. A few days after that appt, she was vommiting everytime she moved her head, so I called her PCP and demanded a ct scan. The next day she had one .
We were not even out of the hospital parking lot after the ct scan and the doctor called. She said that there was a mass in her brain about the size of a golfball and to go home and pack a few things and to go to Dartmouth medical center in Lebanon,NH where a neurosurgeon would be waiting for us. Everything moved so fast. She was admitted on the spot and given meds to reduce swelling of her brain and 4 days later, march 27, 2010 she had her 1st crainiotomy. those were the worst days of my life, so I thought then. 3 days after her surgery they did a MRI and they found more tumor, so she had her 2nd crainiotomy.
She did very well with recovery and we were home about a week later. we were told that she had AA3 about 3 weeks later after they sent out the tumor to different hospitals as there were conflicting results. After diagnosis, I went into survival mode. I did not even know what I was doing really, my body just did what it had to do to survive. She started with oral chemo (Temodar) and had 35 radiation treatments. Her next MRI was scheduled for sept and we thought for sure that things would be fine, but to our surprise, the cancer was growing back during treatment. They scheduled another surgery to remove new growth. We had the best surgeon this time and a 4 hour surgery took 8 hours. She was very careful and very thorough. After that surgery we were told there was nothing more they could do and she was going to die. I did not like that answer and flipped out on them and demanded her records and took her out of there. We went to Dana Farber/Jimmy Fund clinic in Boston and they put her on a new but FDA approved treatment and she has been cancer free for 10 months now. Just cut her to partial treatments. she is doing really well now. My email is sata816@comcast.net if you would like to talk or if you have questions. I would love to talk to you. Tina

new tumor growth
Hi tina - i read the story about your daughter and I was wondering how she is doing/ my husband was diagnosed with a grade 3 anaplastic astrocytoma in july 2010. Under went surgery and then began radiaion along with temodar. Continued on the temodar until july 2011 when the tumor returned to the original site (left side) and also on the right side. Tried BCNU and just had follow up mri yesterday and it is even bigger than 6 weeks ago. Was wondering what drug your daughter is on? Avastin? We have been in contact with a doctor at mass general. currently he is receiveng treatment at sloan in NYC. would love to hear from you. thanks, Kathleen

momsworld

ktubby said:

new tumor growth
Hi tina - i read the story about your daughter and I was wondering how she is doing/ my husband was diagnosed with a grade 3 anaplastic astrocytoma in july 2010. Under went surgery and then began radiaion along with temodar. Continued on the temodar until july 2011 when the tumor returned to the original site (left side) and also on the right side. Tried BCNU and just had follow up mri yesterday and it is even bigger than 6 weeks ago. Was wondering what drug your daughter is on? Avastin? We have been in contact with a doctor at mass general. currently he is receiveng treatment at sloan in NYC. would love to hear from you. thanks, Kathleen

Hi Kathleen
Hi there,
this cancer sucks huh? Yes my daughter was on Avastin every other week and she also took cyclophosphamide and etoposide, fenofibrate and thalomid. She is done with the 1st three meds I listed, but she still takes the fenofibrate and thalomid. Like I had posted before, during radiation and temodar the tumor grew back. I have heard good things about Sloan kit hosp. I do know of a girl younger than my daughter who went to mass general for her brain cancer, different diagnosis though and she is doing great now. They are up to date on the latest treatments. This is why I go to Boston. Dana Farber is awesome. I cannot say enough about the docs and all the staff. My email is in the post you replied to, feel free to email me if you want to talk or have any other questions. Tina

DistancerunnerXC

AshleyWF said:

Surgery Complete
Hi,

Haven’t been around to update, haven’t felt much in the state of mind to sit down and wright either, but here I am.
Surgery is now complete. He was in the hospital for a week, has now been back to the doctor to have the sutures removed and went to the cancer clinic today.
He has been recovering great and there were no side effects as of yet. Everything is moving, everything is working. He is quite sensitive to sound however and complains of feeling almost like he has water in his left ear.
Still have not received the full results back, but the doctor at the cancer clinic has now called it Oligodenroglioma.
The doctor sat down with him today and went through one of this scans. They were unable to remove all of the tumour as it has spread to the right hand side of his brain, which is inoperable.
He explained that this is a slow growing tumour. They are now doing genetic testing and blood work to determine what has to be done. They are trying to delay radiation cause of the side effects? WHY DELAY?

I sit in a completely different world right now, almost feeling on a cloud. I guess seeing him come out of surgery so well, kind of made me feel like everything was going to be ok. Hearing “surgery was a success” I guess allowed me to tell myself they removed it all.
Does anyone have any experience or knowledge on this new type of cancer. My understanding is that it is primary glial brain tumours that are divided into grade II and anaplastic grade III tumors. Are we looking at a whole new road here?

Thank you so much for sharing the information you have and for the support. My heart, thoughts and prayers go out to everyone who is on this site!

Reaching out once more

Ashley

Why delay?
A very good reason. Radiation destroyed my wife.
They got all of her GBM out and proceeded with radiaition...
About a year afterward she suffers from dementia.
That is WORSE than dying of the cancer.
Nothing like watching the shell of your loved one walking around the house in a zombie like stupor.
Your doctors are right in taking their time radiaiting your loved ones brain..
It may work well with most though.
If they proceed then they have considered all the possibilities.

sadinholland

AshleyWF said:

Surgery Complete
Hi,

Haven’t been around to update, haven’t felt much in the state of mind to sit down and wright either, but here I am.
Surgery is now complete. He was in the hospital for a week, has now been back to the doctor to have the sutures removed and went to the cancer clinic today.
He has been recovering great and there were no side effects as of yet. Everything is moving, everything is working. He is quite sensitive to sound however and complains of feeling almost like he has water in his left ear.
Still have not received the full results back, but the doctor at the cancer clinic has now called it Oligodenroglioma.
The doctor sat down with him today and went through one of this scans. They were unable to remove all of the tumour as it has spread to the right hand side of his brain, which is inoperable.
He explained that this is a slow growing tumour. They are now doing genetic testing and blood work to determine what has to be done. They are trying to delay radiation cause of the side effects? WHY DELAY?

I sit in a completely different world right now, almost feeling on a cloud. I guess seeing him come out of surgery so well, kind of made me feel like everything was going to be ok. Hearing “surgery was a success” I guess allowed me to tell myself they removed it all.
Does anyone have any experience or knowledge on this new type of cancer. My understanding is that it is primary glial brain tumours that are divided into grade II and anaplastic grade III tumors. Are we looking at a whole new road here?

Thank you so much for sharing the information you have and for the support. My heart, thoughts and prayers go out to everyone who is on this site!

Reaching out once more

Ashley

Ashley,
My husband was DX
Ashley,

My husband was DX 7/2/11 with an anaplastic Oliodendroglioma grade 3. He had surgery, then radiation and chemo. I month off and then started 5day cycle of chemo. After 4 months of the 5 day the NO said there was an enhancement on the MRI and unsure what it was so they started him on a 21day cycle of temodar. He will be completing his chemo the end of this month. She has done very well thus far. No side effects other than a little memory loss. This has changed our life completely. I am always scared of the unknown. We just have to continue to pray for he best. Good Luck and God Bless.

HopeLoveFaith516

DistancerunnerXC said:

Why delay?
A very good reason. Radiation destroyed my wife.
They got all of her GBM out and proceeded with radiaition...
About a year afterward she suffers from dementia.
That is WORSE than dying of the cancer.
Nothing like watching the shell of your loved one walking around the house in a zombie like stupor.
Your doctors are right in taking their time radiaiting your loved ones brain..
It may work well with most though.
If they proceed then they have considered all the possibilities.

Why delay?
I agree. PLEASE, PLEASE check out all you can on radiation treatment and make sure that the radiation oncologist explains ALL the side effects thoroughly. There are a lot of clinical trials out there that state that there is a greater risk of radiation necrosis (healthy brain tissue damaged during radiation) if the treatments are over 200cGY per day (this is the standard dose), and, also if chemotherapy is administered at the same time (often the case in brain cancer). I don't think there is an alternative therapy but maybe the doctors can explain dosage and risks better to you than they did to me. This cancer is scary and we want to do all that we can to stop it so often we move too quickly because we want to trust that treatment is the best option. Believe me, I know that it is aggressive and it has to be treated aggressively, but what happened to Distancerunner's wife has also happened to my incredibly intelligent and gifted husband. We are dealing with "delirium"; he is in such a confused state that most of the time, he isn't sure what day of the week it is; recently, he has been unable to identify me or his children. It is SO HARD to watch such a capable man try to understand the confusion and disorientation he is experiencing. It is especially hard for me thinking that he will not remember how incredible he is, how many lives he has touched and how important his life has been. My husband was diagnosed last November, so here we are 10 short months later and we're not in a good place at all.