Grade 3, an anaplastic astrocytoma

be473

Beating the odds
Hi Janet,
Don't know if this helps, but I have a story of survival way beyond their prognosis!
My husband was diagnosed in 2000 with a AAgrade3. He had it removed and had radiotherapy. He began Chemo (IV) but had to stop, as he had a really bad reaction to it. (Really bad!) Then he was completely tumour free for 5 years. Then 5 months after our son was born it came back. Couldn't operate, so they treated it with a different type of Radiotherapy, a one off... this was not so great, as it grew very quickly. (In hindsight I think they were thinking it was going Grade 4, talking about it moving to other parts of the brain) His original tumour was 7.5cm, and the reoccurrence got to I think from memory about 3cm. After the radiotherapy was a bust, he was put on a 2 year course of Oral Chemo (Tremador) to "control the growth" and attempt to shrink the tumour. After 7 months it disappeared completely, and has been gone ever since (kissing my ear for luck). He has 6 monthly MRI's, but life is as normal. He has suffered a stroke due to a side effect of the second radio therapy. This caused some issues with vision, but other than that you would never know that he was sick. He is currently working and studying to gain a diploma. I am very proud of him, he has a great attitude. So much so that I am writing a book about him, because I believe that his story is one that can inspire others in the same situation.
Two complimentary treatments that we both believe saved his life are Kinesiology and Reike. We did everything the Dr's said and a little bit more... they can't explain it, but who cares. He's here, and that's all that matters!

Hope this is helpful!

be473

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?

My husband is also a AA3
My husband is also a AA3 survivor. Good job! Memory issues are often a problem for anyone who has had trauma to the brain, and the meds can make it worse. Depending on where you are, you could ask your neurologist to have memory testing. That way they can map out the particular facets of your memory that you are having problems with. Then both use that as a benchmark to judge deteriorization, as well as suggest therapies that may help with builing it back up. My husband has also been struggeling with this, more since the stroke he has from the radio therapy, than the tumours or meds. I feel as if he is making some progress though, and has returned to study while he is working. This has helped. Good luck!

dduncan

Going thru it
It's been 4 months since diagnosed I'm fighting with
with god help I'm getting better . First Mri after radiattion
therapy .

KMPonder

sue Siwek said:

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.

Thanks
So glad to hear he's 11 years out and doing well. Life feels "nearly" normal now in some respects by just having a break from the chemo.

For all those newly diagnosed, keep hope and faith alive through the early part of this. Looking back to 15 months ago, going through all the initial treatments: biopsy, radiation, chemo, monthly chemo, appointment after appointment, it's easy to get discouraged and weary. Treat it like a job - what you must do to survive. Seek out a second opinion if necessary and find the best brain tumor center you can to help you through. We are so grateful to the doctors and staff at Duke, and we'll continue MRIs every two months this year. A 7-hour drive is nothing compared to the quality of life my husband now has again.

I am so proud of the strength and courage my husband has had as he's faced his second round of brain cancer in his 44 years. I know each of you will find the same strength yourselves or for your loved ones to do all you can to get through each day. Truly take this one day at a time. Don't invite worry. Be involved in every aspect of your treatment and options. Ask a zillion questions. Stay strong in the fight! God bless!

Saxon66

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!

I had nearly the same
I had nearly the same thing.I am a 22 year old male. I had a anaplastic astrocytoma grade III in my front right lobe. They told me going into surgery they did not really expect my left side to function after surgery and there was a very high possibility of me not having any personality after surgery either.The surgery was done the day after a seizure that led to the University of Iowa hospital where the surgery was done. I have done great since surger That was August 28th of this year. I have problems with pain in my left him and it gets very sore. The chemo is in full swing and so is the radiation. I am very sorry to hear your left side has had problems. How are you doing now? I am just trying to get through the treatments and see where we go from here.

Hopekathy

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.

Where were you treated - at
Where were you treated - at what hospital?

Hopekathy

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.

Where were you treated - at
Where were you treated - at what hospital?

KMPonder

Hopekathy said:

Where were you treated - at
Where were you treated - at what hospital?

HopeKathy,
Were you asking
HopeKathy,

Were you asking me where my hubby was treated? If so, he was treated at Duke this time.

Since my last post, my husband has suspected radiation necrosis on the optic chiasm. His 10/21 MRI showed the new enhancement, but the 10/22 PET was completely cold. He's lost a lot of vision in both peripheries. He's now on biweekly Avastin treatments. He's tolerating those just fine, thankfully. We go to Duke every two months for MRIs at this stage of the game.

The tried a large dose of steroids for five days the week of Thanksgiving, and he had the darn steroid psychosis again! I am NOT going to allow him to have more high doses of steroids. He has proven twice now (first time after brain biopsy in September of 2009) that he cannot handle them. He has missed what will be 12 days of work because of this, and he didn't miss but three days all year, even while on Temodar through October! I'm so frustrated with his local oncologist for not listening to me when I saw it coming on, that I requested a new oncologist. If ever your loved ones or self need high doses of steroids, please, please educate yourselves about the possibility of psychosis. It can be a very frightening reaction, and the doctors do NOT prepare you for the possibility. (Off soapbox.)

Hubby's so different from most, because this is brain cancer round two, different kind. We know his radiation in 1987 caused his AAs now, and we just pray he'll continue a good qaulity of life, even with the vision issues. He's one remarkable man!

KMPonder

be473 said:

Beating the odds
Hi Janet,
Don't know if this helps, but I have a story of survival way beyond their prognosis!
My husband was diagnosed in 2000 with a AAgrade3. He had it removed and had radiotherapy. He began Chemo (IV) but had to stop, as he had a really bad reaction to it. (Really bad!) Then he was completely tumour free for 5 years. Then 5 months after our son was born it came back. Couldn't operate, so they treated it with a different type of Radiotherapy, a one off... this was not so great, as it grew very quickly. (In hindsight I think they were thinking it was going Grade 4, talking about it moving to other parts of the brain) His original tumour was 7.5cm, and the reoccurrence got to I think from memory about 3cm. After the radiotherapy was a bust, he was put on a 2 year course of Oral Chemo (Tremador) to "control the growth" and attempt to shrink the tumour. After 7 months it disappeared completely, and has been gone ever since (kissing my ear for luck). He has 6 monthly MRI's, but life is as normal. He has suffered a stroke due to a side effect of the second radio therapy. This caused some issues with vision, but other than that you would never know that he was sick. He is currently working and studying to gain a diploma. I am very proud of him, he has a great attitude. So much so that I am writing a book about him, because I believe that his story is one that can inspire others in the same situation.
Two complimentary treatments that we both believe saved his life are Kinesiology and Reike. We did everything the Dr's said and a little bit more... they can't explain it, but who cares. He's here, and that's all that matters!

Hope this is helpful!

Be473,
How old is your
Be473,

How old is your husband? So he had radiation twice, like my husband? It is interesting that both our husbands have had vision issues after two rounds of radiation.

I know it is a VERY busy time of the year, but I would love to e-mail with you when we both have time.

I love that your husband is so positive, too. You just have to be.

Happy Holidays!

cushla69

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!

hi, my name is Lourie, i
hi, my name is Lourie, i was just diagnosed with a high grade 3 astrocytoma. I start radiation and chemo pill this tuesday, the 21st. I first got sick in June. This has been a scary experience. I am a bus driver, but of course i cant drive right now, but i am an aide on the school bus now. I hope to eventually go back to driving. They say i will do radiation and chemo for 6 weeks then continue chemo for another 6 months. This is my first post, not sure how this works, but ill learn.

cushla69

ashley_clark said:

Keep your faith!!!
Janet -

I was first diagnosed with a brain tumor on July 10, 2007. I had surgery and my results came back that it was an oligodendroglioma grade ii. The dr. decided to wait and said that I had a good 5-20 years before the tumor would grow back and if I made it 5 years that I would be in the clear. My tumor grew back in 9 months and was bigger than before. (Before it was the size of a pop can.) I had a second surgery on September 16th this year and found out that it had come back as an anaplastic astrocytoma grade iii. I am now in the middle of radiation and chemo treatments. I also recieved the news that I had 2-5 years. Please, keep the faith!!!! I know it is hard, but they are only numbers! I am a 23 yr. old single mom to a beautiful 3 year old daughter and there is no way on earth that I can let those numbers keep me down! I will keep your family in my thoughts. If you would like to share more info feel free to contact me! I'm new to this also and it is definitely scary!

harley_f150@hotmail.com

Thank You!

Janet, my name is Lourie. I
Janet, my name is Lourie. I was just diagnosed with a high grade 3 astrocytoma. I first got sick in June. Had open brain biopsy on Nov 9, 2010. I am 41 and i have a 22 year old son and my daughter just turned 15. This has been a real scary ordeal. I feel for u and will keep u in my prayers. They are starting me on radiation and chemo this tuesday the 21st. I will do that for 6 weeks then ill continue chemo pill for another 6 months.

cushla69

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. :-)

Hey Fusionera, It is so good
Hey Fusionera, It is so good to hear some of these wonderful encouraging stories. I was just diagnosed with a high grade 3 astrocytoma. I dont have a lot of understanding bout all this. but im trying. It has all been so scary. I start radiation and chemo pil on tuesday the 21st. I have heard good and bad stories and dont know what to expect. I first got sick in june. i was a school bus driver, now i am an aide on a handicap route. I hope to be a bus driver again one day. I had the open brain biopsy on nov 9, 2010. There are so many people with the grade 3 astrocytoma.

fireman806

Anaplastic astrocytoma
my wife had a Grade III also and hers was the whole right side a outstanding neurosurgeon removed it and it covered half of left side to they did Chemo on it. Now this is her 2nd round with it but keep in mind was first diagnosed in Nov 1998. She is a sleep in the bedroom right now doing fair. She did stroke during her surgery in 1999. So we will tell you just keep the faith the lord brought her thru this. I work in a hospital the doctors there know my wife well they said she should not be here and is they said thats a amazing woman we say no thats the lord working in our lifes

kris4john

fireman806 said:

Anaplastic astrocytoma
my wife had a Grade III also and hers was the whole right side a outstanding neurosurgeon removed it and it covered half of left side to they did Chemo on it. Now this is her 2nd round with it but keep in mind was first diagnosed in Nov 1998. She is a sleep in the bedroom right now doing fair. She did stroke during her surgery in 1999. So we will tell you just keep the faith the lord brought her thru this. I work in a hospital the doctors there know my wife well they said she should not be here and is they said thats a amazing woman we say no thats the lord working in our lifes

Another AAIII Survivor Here
My doctor discovered a 'spot' in my right temporal lobe/insula in Aug 2005 (I was 34 y/o male). They watched and waited until 2007 when I started having simple focal seizures. Had a craniotomy Apr 2007 at M.D. Anderson. Diagnosed as AA-III. They removed somewhere between 70-95%...left the tumor portion in my insula. The tumor pre-surgery was about 6 cm. Maybe about 1 cm remained. I had IMRT June - Jul 2007 and we decided not to forgo chemo. I've been on 3 month scans ever since. This past August (2010) they moved me to every 4 months. So I've passed 5 years since a 4 cm 'spot' was discovered and I'll be 4 years post treatment next July (2011). Other than the emotional roller coaster ride...I've been fully functional and able to work full time (USAF Active Duty - they still won't let me deploy).
God is good!
John

momsworld

kris4john said:

Another AAIII Survivor Here
My doctor discovered a 'spot' in my right temporal lobe/insula in Aug 2005 (I was 34 y/o male). They watched and waited until 2007 when I started having simple focal seizures. Had a craniotomy Apr 2007 at M.D. Anderson. Diagnosed as AA-III. They removed somewhere between 70-95%...left the tumor portion in my insula. The tumor pre-surgery was about 6 cm. Maybe about 1 cm remained. I had IMRT June - Jul 2007 and we decided not to forgo chemo. I've been on 3 month scans ever since. This past August (2010) they moved me to every 4 months. So I've passed 5 years since a 4 cm 'spot' was discovered and I'll be 4 years post treatment next July (2011). Other than the emotional roller coaster ride...I've been fully functional and able to work full time (USAF Active Duty - they still won't let me deploy).
God is good!
John

hi kris4john
my daughter is 13 and has AA3. She has had 4 brain surgeries to remove tumor and new tumor growth. Every surgery she has had we were told that she would have left sided weakness. Almost like having a stroke. Every surgery she has come out fine. No major left side weakness or anything. She is back at school and doing good. You are right. GOD IS GOOD.
We have alot of faith that God is with us and taking care of her.

Girl2010

Saxon66 said:

I had nearly the same
I had nearly the same thing.I am a 22 year old male. I had a anaplastic astrocytoma grade III in my front right lobe. They told me going into surgery they did not really expect my left side to function after surgery and there was a very high possibility of me not having any personality after surgery either.The surgery was done the day after a seizure that led to the University of Iowa hospital where the surgery was done. I have done great since surger That was August 28th of this year. I have problems with pain in my left him and it gets very sore. The chemo is in full swing and so is the radiation. I am very sorry to hear your left side has had problems. How are you doing now? I am just trying to get through the treatments and see where we go from here.

You have what my 19 year old
You have what my 19 year old brother has as well. He is in full swing with the radiation and chemo... he has problems with his right side, and his tumor is inoperable. Have you tried any clinical trials? We are currently searching options for that...

meetad

anaplastic astrocytoma survivor
I was diagnosed with mine in 2002 via MRI while I was pregnant with my son. I had no idea that I had a brain tumor, and the doctors were looking for something else entirely. After my son was born the doctor biopsied the tumor, followed by a complete resection and 18 weeks of radiation therapy. My head is all lumpy now and sometimes my tongue gets thick-feeling when I try to talk, but other than that I have no negative effects and there has been no sign of recurrence. I am extremely fortunate, and proof that these can be beaten. Hang in there!

~Michelle

Rory1987

Just to inspire everyone with AA
I may not have AA (but i do have ExtraMedullaryPlasmacytoma with intracranial extension) but Im sharing this to everyone with AA. He has been my hero and inspiration since I started my treatment,

Im gonna share to everyone the story of Mr. George Plym a 40+ year AA survivor and until now he is still alive and is currently the president of Western North Carolina Brain Tumor Support

http://www.virtualtrials.com/survivegeorge.cfm

believe it or not he has survived 11 brain tumor recurrences and a heap-load of radiotherapies

AngelRay2008

I had AA III also
Hi Janet, I was diagnosed in October 2008 with antiplastic astrocytoma grade III after 2 seizures. I had partial surgery; they removed as much as possible without causing me to have a stroke. After surgery, I had 35 treatments of radiation combined with Temodar capsules. I had no ill effects except for loss of energy. I have many Angels who are constantly praying for me and helping me. God has richly blessed me through my having cancer. Needless to say, it's been very scary for me, my family and friends. I began Avastin in May 09 with infusions about twice/month. I think the Avastin is the drug that really helped me; it blocks the blood flow to the tumor. All of my MRI reports have been stable. One MRI last Oct (2010) showed some recurrence of very small spots, but they had told me to expect some recurrence. Now, I take Temodar capsules at night (80 mg) and Avastin IV infusions every 3 weeks. My local oncologist consults with the Brain Tumor Center at Duke University, and I feel that I'm receiving the greatest care. I do believe that this is all part of God's plan for my life, and that He will carry me through and I will soon be able to enjoy ALL the things I did when I was completely healthy. I'm already amazing the doctors! They didn't expect me to do this well when I was first diagnosed, but I was in pretty decent physical shape when I got sick and I have a strong faith and positive attitude. So, keep the faith and check out Caring Bridge; my site is http://www.caringbridge.org/visit/ritahunt. You may want to set up one for your nephew. Lots of well wishes to you and your family; when cancer strikes, the entire family needs care. Pray without ceasing.

Rita

AngelRay2008

kris4john said:

Another AAIII Survivor Here
My doctor discovered a 'spot' in my right temporal lobe/insula in Aug 2005 (I was 34 y/o male). They watched and waited until 2007 when I started having simple focal seizures. Had a craniotomy Apr 2007 at M.D. Anderson. Diagnosed as AA-III. They removed somewhere between 70-95%...left the tumor portion in my insula. The tumor pre-surgery was about 6 cm. Maybe about 1 cm remained. I had IMRT June - Jul 2007 and we decided not to forgo chemo. I've been on 3 month scans ever since. This past August (2010) they moved me to every 4 months. So I've passed 5 years since a 4 cm 'spot' was discovered and I'll be 4 years post treatment next July (2011). Other than the emotional roller coaster ride...I've been fully functional and able to work full time (USAF Active Duty - they still won't let me deploy).
God is good!
John

God works Amazing Works
John, I have been able to do most of what I want to do; I did retire early from my job because it was just too stressful. And, I got a puppy who has enhanced the quality of my life and kept me busy (and from sleeping 24 hours a day). His name is Angel Ray, a miniature long haired dachshund, and he makes me laugh, too. My tumor was very small, and the recurrence was very small (pea size), and my challenge now is to gain weight. The Avastin gives me a little trouble with my stomach, but all in all, I do not have near the problems that some people do.

May God continue to bless you and your family.

Rita