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Astrocytoma Grade III Survivor Here To Help

survivormannc
Posts: 17
Joined: Jan 2012

Hello all. I have helped the ACS for several years now and I am looking to help people specifically with brain cancer. I will be a 5 year survivor in March of 2012. I believe this is my calling to help people who are going through such a difficult thing. Anything at all I can do to help please let me know whether it be to answer questions, give advice or opinions or just be a someone to talk to.

connsteele
Posts: 232
Joined: May 2011

Welcome to this site. And glad to see that there is a long-term survivor who is willing to help. Could you please give a little more of your experience, ie, type of brain tumor, grade, and treatments you had?

survivormannc
Posts: 17
Joined: Jan 2012

I was 26 when I had a seizure while working out. I went to the doc and was misdiagnosed as having a stroke. I took this info to my doc along with the x-rays and he referred me to a neurologist who broke the news to me. I had and Astrocytoma Grade III. After the first seizure i started having mini seizures every 15-20 minutes so immediate surgery was necessary. Two weeks after surgery I started radiation. Then started chemo for 9 months at the highest dose possible. On March 5th of 2012 I will be a 5 year survivor!

survivormannc
Posts: 17
Joined: Jan 2012

My surgeon was able to resect what he said was 100% of the tumor which I am thankful for, a lot of people aren't that blessed. It was in my left frontal lobe. It was so large that it did get into the emotion section and was very near the section that controls my ability to speak. Again there I was lucky as when I had the first seizure I lost the ability to speak due to the tumor pressing on that section with such pressure.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:
My 18 year old daughter's AA3 was also in her left frontal lobe. Before we knew she had the tumor she loosing her ability to speak, but we did not understand what was going on. We never saw her have a seizure, but she was having silent ones, just zoning out. Anyway, they only resected 85-90% of it. The surgery left her with quite a speech impairment. She is doing speech therapy. Did you have a speech impairment and if you did, how are you doing now?
Also, what was your chemo and how long did you take it? Where was your hospital? Thanks for helping others and giving hope. God Bless.

Edna

survivormannc
Posts: 17
Joined: Jan 2012

No I do not have a speech imparement thank god. I think I just skated by having issues with that. I live in NC so I just had my surgery locally. The night before I had surgery I started having silent seizures as well. I have to say I can't think of many things worse than those. I felt like I was dying each time. They would come and go every 15-30 minutes and last roughly 2-5 minutes each time.

I do have some memory imparement and my processing ability has slowed by 2-3 seconds. Its hard to have conversations on difficult topics as my brain is slow to process what I want to say and lot of the time what I want to say comes out wrong. I really have to sit and contemplate what I want to say. I'd be terrible on fast answer quiz shows!

I am glad your daughter made it through. I really hate to hear about the speech impairment. You both look like very nice ladies. Let me ask you, have you talked to her about her feelings on this whole situation? I am always curious to see how different people come out of a very similar situation with a completely different view on things.

papa joe
Posts: 2
Joined: Jan 2012

Hi,
Just a quick question my Dad is also a AA3 cancer survivor 17 months now and he is still taking temodar. Did you use this type of chemo also? if so how long?.

Thanks,
Sandi

survivormannc
Posts: 17
Joined: Jan 2012

I did use Temodar for 9 months. It made me really sick on my stomach so all I could do all week was lay around. Then I had 3 weeks off to recover. If it wasn't for zofran I don't see how I could have gotten through that. I am thankful however for that drug because I could take it at home and not have to sit in a chemo room for hours on end. Has he been on it the entire 17 months?

Eng
Posts: 11
Joined: Jul 2011

My brother, now 23, was diagnosed with Brain tumor last March. He got a seizure while he was playing tennis at his university. It was a huge surprise as I am sure it is to everyone else. He saw the Neuro surgery next day and they proposed surgery to be his best options. Two weeks later, he had the surgery. What a experience!!! My brother made a decision on the surgery based on his doc's advise that at least %80 will be removed. They opened up and only had a biopsy done. Horrifying!!!

So, the researched we did before the surgery, i guess was not enough. We reached out side of Canada and we landed in Germany.

Long story short, The doc in Germany, who I would say first God and second that doc gave life to my brother. The doc in Germany, removed the tumor 100% with no deficit at all. They performed functional MRI first and based on that did the surgery. His surgery took 12 hours and he had 4 MRIs done during the surgery to ensure 100 percent is removed.

In Canada, they told us is a grade 2 astrocytoma and that is because they only took a small portion and then they recommended a radiation.

In Germany, they tested the whole tumor and it is a grade 3. He has started his radiation and he has 2 more weeks to go.

He is in a very good shape and in fact almost every weekend he travels to a city around the city he is now.

P.S his tumor was very large, larger than an orange and located on the left side. It's amazing when you see the MRI images now.

We are thankful!!!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Eng:

My daughter's tumor was also on the left side, but I do not believe it was that large. How is your brother's speech? My daughter has a speech impairment from her tumor and surgery. What a drag. She is completing her chemo now. It is a rough road. I send you God's blessings from Alaska.
Edna

Eng
Posts: 11
Joined: Jul 2011

Hi Edna,

My brother has no speech impairment and in fact thank God he has no problem at all. The still just like before we found the tumor. He is very fast and he does very difficult calculations (he is in his last year of electrical engineering).

I feel pain in my heart when i think about all the things everyone goes through with this nasty disease. I can listen to a happy music but I can easy cry. This is a disease that no one can even notices. The person looks completely normal but inside of the brain so much is going on.

I am just so so for all of us going through this. If you look around most of the people with this disease are professionals with high education or they study hard!

In Germany, the next door in the hospital, there was a man who was 29th and he just married (6 moths before they found out). He was already a professor and he teaches computer courses at university!!!

I pray for everyone! Specially for parents!!! It is so so hard to see them watching their children go through this. My mom said before that she feels ashamed walking in front of my brother and being healthy at age 62.

I have a 3 year old and I know what all the mothers on this site or in the world would possibly go through.

God bless and God help all the people with these types of diseases.

willnotbeatme
Posts: 3
Joined: Jan 2010

Im a 2 1/2 year survivor of a AA3 and still do temodar, my blood work has always come back very well and I plan on staying on the mataince cycle of the temodar for as long as my body can take it. Im cancer free to this day. I have no deficits...

connsteele
Posts: 232
Joined: May 2011

So glad to hear about your brother's success. Here's hoping and praying that it continues. We live in the U.S. (Ohio) where our son (AA3 dx4-13-11, age 34)is also getting treatment. He is on a chemo regimen right now. I'm curious: how does one go about getting a doctor/surgeon located in Germany (or someone out of the country)? Our son's medical insurance is an HMO, so it's needless to say, a doc in Germany would be out of his network. Does Canadian insurance pay for treatment out of the country?

Your surgeon sounds amazing. The surgeon who operated on our son only removed enough tumor to get a biopsy, so we would be interested to know if there is another one willing/capable of removing the entire tumor. Thanks, Connie

Eng
Posts: 11
Joined: Jul 2011

Hi Connie,

Thank you. I am not sure if Canadian health care would pay for this or not. We never asked and we will not use the health care in Canada any more with unsuccessful surgery!!! Their advise to us was incorrect!

The email address to German doc is:

nchamb@ini-hannover.de

His assistance will reply to you. Can you imagine his visit is cheaper than a visit to a clinic in Canada or USA if you don;t have an insurance!!!

They would even give advise remotely. It wouldn;t hurt to try.

Just a note, that the doc in Germany told my brother that there is a chance that he becomes paralyzed on his right side of the body and he promised to return it back to normal within 3 weeks!!! Which doctors here told us this is impossible. My brother could hold a spoon after his surgery and now he play his guitar just like before!!! This is a difference between doctors!!!

willnotbeatme
Posts: 3
Joined: Jan 2010

Hi, I was diagnosed Nov 11,2009 with an AA3.I was a full time collage student, major was Dr. of Osteopathic Medicine. That all came to a halt on a Wed. morning Nov. 11,2009. I started to feel funny tingling feels throughout my face. I then had the worst headache that I have ever had in my then 33 yrs. I was rushed to the ER. where they had proceeded to do multiple test such as an MRI, and CT scan. Therfore finding the reason for the headache, and the tingling feelings were as follows 6cm* tumor in my right frontal lobe. The tumor had such a big blood sack on it they thought I had 2. But it was confirmed during the 8 hour surgery that it was only 1 tumor, the blood sack was going to burst inside my head if I would not have gotten to the hospital that Wed. I would have died the Drs. said that night in my sleep. I then done 6 weeks of radiation 5 days aweek with 7 days aweek of Temodar at 145 mg. After 6 weeks I then had a brake for 30 days and piced up on the matenience cycle of Temodar at 275 mg. I never had any side effects and did not have any deficits from the surgery. The Temodar and radation gave me energy, it was like i looked foreward to treatment it just made me that much stronger. They did remove 100% of the tumor. And I still take the Temodar almost 3 yrs. later. I live healthier now then I did back then. My life is as normal as it has always been. I get blood drawn every 2 months and MRI every 6 months, they are still clean, with no signs of cancer. Your Dad will be ok. don't give up. And don't let your guard down. Good luck and hope this helps on your question.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Will not beat me:

what a good, hopeful story. Do you mind if I ask where your treatment is? What has your level of temodar been for these three years? Did you have any nausea? If you did what did you take? I am very happy that things are going so well for you. God Bless you!

Edna

Gaurang
Posts: 8
Joined: Jan 2012

Hi,

can you guide me please?

survivormannc
Posts: 17
Joined: Jan 2012

I'd be happy to Gaurang. Tell me a little about your situation. When was your diagnosis? From there we can talk about what you may experience throught this.

Gaurang
Posts: 8
Joined: Jan 2012

Thanks for reply

My diganosis was done on 1st Sept.2011 and surgery was done on 3rd sept. and i have started 6 week radiation from 9th December. at present i have pain in legs and feeling tired and week and some time facing problem in speech and memory.

Doctor saays that, survival period is only 4-5 months because of poor prognosis!

blackngray
Posts: 11
Joined: Mar 2011

I'm sorry to hear what your doctor has reported to you. I do have concerns about that and questions.
First, how are you feeling today? What is your prognosis? Are you taking decadron? Is that why you have pain in your legs (joints)?? The fatigue is most definitely from the radiation!

Blackngray

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

but typically for AA 3 it is btw 4-5 years.

I don't know why your doc would say 3-4 months. Even for GBMs it is a leat 12 months.

J.

Gaurang
Posts: 8
Joined: Jan 2012

tumor recure in two months after operation so doctors told me its very bad prognosis and survival chance is very low..only god can help me and i trust him.

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

I'm sorry and Good luck. Day by day!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I'm sorry, Gaurang, that your doctors gave you a bad prognosis. Please remember that they don't KNOW for sure. They tell you their OPINIONS based on statistics, but you are not a statistic--you are an individual and you will have your own unique response to your treatments. Please hold on to hope. I believe that it's really important to keep a strong positive mental attitude and to guard that attitude as much as possible....don't read every negative thing on the internet, etc., and save and remember and remind yourself of every positive bit of information that you hear or read. There are many posts on this site of people living much longer than their doctors GUESSED that they would live.

I'm telling myself the same things that I am telling you here, because I let my guard down and I have not being working really hard at keeping a positive attitude. I've found that once you start letting a few negative thoughts slip in here and there, it's like a snowball effect and before you know it, you are overwhelmed with despair. That's the place I was headed. I'm trying to have a turn around in my attitude but it's hard.

Did your tumor recur after surgery only, or did it recur after surgery, radiation, and chemo? You didn't mention taking chemo, did you? It seems that the standard treatment for grade three tumors usually includes chemo, and the chemo is usually Temodar. If you are not taking Temodar, you might want to ask your doctor why he did not prescribe it.

Please keep us updated here on CSN. I am always thinking of others on this board, praying for them, hoping with them, and I always appreciate knowing how you and they are all doing.

Love, blessings, and peace to you,
Cindy in Salem, OR
PS I far prefer to put my trust in God rather than in the doctors. I feel that God is much, much more trust-worthy. (worthy of my trust)

Gaurang
Posts: 8
Joined: Jan 2012

Thank you very much Cindysuetoyou,

I was very disappointment and tense but i feel really good after your reply.you really encourage me dear.

Doctor didn't give me advice for radiation because of two reason

1) first CT scan report after twenty days of surgery was very clear and no revealed no lesion.
2) report of astrocytoma grade 2 and surgery was done very well

My recur was done after surgery but radiation and chemo were remain(in two months gap) now i have completred my radiation along with chemo(temozolomide)140mg on concurrent day. now one month off in chemo and after a month MRI will be done and then new dosees of chemo will continue as per doctor prescribe..

what is price of temodar? here i am taking temozolomide of $40 for 140mg.

once again thanks for help and you creat new hope into me.

survivormannc
Posts: 17
Joined: Jan 2012

You get a great price for that, you are definately lucky. My insurance was paying upwards of $10,000 a month for 7 days worth of 300mg pills. Thankfully I had insurance as you can imagine what I thought when I saw the inital payment before I saw the all important "this is not a bill" from one of the payment receipts. You must not live in the US, is that right?

How are you dealing with this, are you having a good day/week so far?

Gaurang
Posts: 8
Joined: Jan 2012

Hi Blackngray,

yes you are right i feel tired and weak. there is swelling in my both legs and more pain in right leg.

some times i cant speak properly due to laking of words. radiation will over in two days and my doctor (consultant of radiation oncologyst)will discontinue temozolomide(oral chemo therapy)for one month and after an MRI new dose will be desided by doctor and it would be one dose in a week.

Is this right treatment or any other option?

willnotbeatme
Posts: 3
Joined: Jan 2010

what is your diet like?

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

I also have a grade 3 astrocytoma, and i found out whem it came back last november that its a reoccuring thing. Have you had it more that once?

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

HI:

What kind of treatment did you have for your original tumor? How long before it reoccurred? Where was the original one? Did it come back in the same place? I hope you don't mind all of my questions. My daughter is finishing her 12 months of chemo or the maintenance phase for her first treatment. I do worry about what will happen when we stop it. I hope and pray for my daughter and all of you to be in the % that live for many years without a reoccurrence and/or new treatments that work!

God Bless you.

Edna

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

I had my origional diagnosis in jan 2011 so it was 10 months before I had another surgery, but it came back after 8 months. It was in the left frontal lobe. The second time it was around the resected area they took out the first time. This time there was swelling so I couldnt move my right side but after about 5 days of steroids i was able to move it a little bit. After about a week and a half I was able to walk again. They said mine is going to keep recurring but hopefully the further away the better. In case I dont hear back from you good luck with your daughter. If you have any other questions feel free to ask. Im here.

Jackie

cherrit
Posts: 1
Joined: Jan 2012

What chemo did you recieve?

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

Temodar

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

Temodar 140 mg for 60 days in the begining, then 280mg for 5 days out of every 28.

connsteele
Posts: 232
Joined: May 2011

Are you still taking Temodar after having a recurrence in November? Or, are you now taking some other chemo drugs? Our son took Temodar for the first six months, then another tumor showed up on the scan in December 2011. So now he is on CCNU and procarbazine.

Just wondering if your docs are continuing the Temodar even though your tumor came back. Also, where to you get treatment?

Hope all goes well for you.

survivormannc
Posts: 17
Joined: Jan 2012

I had a very similar type of chemo. They started me out low and ramped up to the highest dose he thought I could handle. They had to mix multiple mg pills to get the dose right. I know for sure it was 300mg but I vaguely remember 400mg in there for some reason. Some details I just don't remember.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:
My daughter took the Temodar during radiation, I think about 120 or 140 mg. each night, 7 days a week. Then when we started the maintenance phase part of her chemo she started out with 400mg. of Temodar on the 5/28 schedule, but that made my daughter too sick. So, we halfed it for three months and now we are at the 300mg level. We just did an MRI and I am nervous about what it will show after lowering the doseage. She will be done with chemo in May. I pray and pray that she will be stable and have no reoccurrence. Prayers for each of you. Sending God's blessing to each of you.

Edna

mermaid678
Posts: 10
Joined: Dec 2011

Hello i saw one of your posts thar you are a 5 year survivor. Thats awesome! My boyfriend is 23 and just got diagnosed with an inoperable astrocytoma on top of his thalamus. The doctor said they are going to monitor it and he will have to have chemo and radiation some day. The doc also said only 37% of people with this tumor survive for 5 years or less. Im really scared. Was your tumor revomed?

Glorisa33
Posts: 2
Joined: Sep 2011

Hi, am so happy for your surviving and loved the fact that you are willing to help others in same situation. I was diagnosed with grade 3 brain cancer on the left side of my brain. My son found me unconscious on June 22, 2011. 1/3 of my brain was taken out on Aug 29, 2011. In Oct 2011 I had a 45 day treatment (10 min radiation Mon-Fri) and in evenings drank 150 mg of Temodar capsules for 45 days. Now I will start this Monday Feb. 20, 2012 a 1 year treatment of 300 mg Temodar but only drink pills for 5 days every 4 weeks (drink 1 week and let 3 weeks go by without taking any pills and them start again with the 5 day treatment).
God along with the help and assistance of wonderful Angels on earth like yourself have been shown to help me. God bless you and I look forward to your assistance and recommendations,
Thank you, Gloria

amber3149
Posts: 1
Joined: Feb 2012

I am new to the site but have many questions. I am having trouble finding any research or information on astrocytomas to the right frontal lobe. My dad is an 18 year survivor but is now having another health issue and need to make sure he is on the right medications for it. He recently had a stroke and am trying to find out if it is caused by the cancer or another issue. I am also looking to see if the simvistatin the doctor is putting him on is the right medicine to help prevent any future strokes. My dad was only given a short time to survive so him still being here is a miracle in itself. I only want the best treatment for him but am learning there is a possibility the simvistatin can cause cancer to grow and that is the last thing I would want for him. Can someone, anyone please help with this matter.

staplegun
Posts: 1
Joined: Apr 2013

Sharing a liink with you - stumbled across two weeks ago

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

Diagnosed Astrocytoma Gr2 - 07/2005. MRI/surgery (biopsy only)/radiation.  01/2013 Resection surgery dx now as Oligodendroglioma versus Astro. Please go to website - Mr Williams will email you back and his book is an eye opener.

elizhooper
Posts: 5
Joined: Apr 2013

Hi Ben - thanks for sharing the link on AA.  I am new to this site,, newly diagnosed also.  I'm going to be treated at Johns Hopkins in Baltimore, MD for my Anaplastic Astrocytoma Grade 3

maggie65
Posts: 4
Joined: Feb 2013

I am a wife a diagnosed husband he was diagnosed the end of October 2012 last year we are in need of advice, opinion and information of this inoperable brain tumor at age 45 my husband was diagnosed taking Temodar pills for Chemo therapy. He began Radiation and Chemo Therapy December 4th 2012 ending his radition in January 16 this year continuing the Chemo regiments of Temodar upgraded from 150mg 45 days to 300mg 5 days 23 days off to 400mg now 5 days 23 days off. Alot of medications with it  has its affects his weak now and unable to walk he went from a cane, to a walker, to a wheelchair and bed confined his currently on Dexamethasone pills form of Steriods for swelling of the brain and on Lovenox Enoxaparin injections for blood clogs and blood filter surgery that was done to his right groin and on Novolog and Lantus insuline injections due to his sugar high glugose due to steriods alot is going on. Please contact us we lived in Glendale Queens, New York but had to relocate to Saten Island, New York due to no elevator or ADA bathroom equiped having spiral staircases and our current apartment has elevator ADA bathroom but can not occupy all the medical equipement provided due to being a studio i don't know whats worst. But I refuse to put my husband in a nursing home and almost was tricked into doing so when we were convince it would be a rehab for his physical therapy and it wasn't so although its difficult we are fighting this brain tumor together but need any insight on this brain tumor illness.  

nauman_shah
Posts: 1
Joined: Apr 2013

My cousin was diagnosed with Grade 3 Astrocytoma in the Brain Stem 5 months ago. He received his treamtent of radiation and chemotheraphy from Cornell Hospital, but nothing has changed. They took him out of the hospital and put him in a rehab center. But the rehab center is doing nothing to treat the cancer. What do you recommened from your personal experience? 

Thank you for your help in these difficult times.

veyseljohn
Posts: 1
Joined: May 2013

Hello all. My aunt was diagnosed with Anaplastic Astrocytoma nearly 4 years ago (October 2008). She first had a surgery where a part of the tumor was removed (still leaving nearly 30% left). After that, she had radiotherapy for quite some time. In may 2011 the tumor started to grow a bit and we were very scared of this, although her clinical condition remained normal (besides the headache she had all the time). She had Temodar (temozolomide) starting at December 2011. Nearly 10 months ago they stopped the temodar and waited for the MRI scan which still showed little increase. Now they gave her 2 cycles of Lomustine and that had a fatal effect. She is lying in bed now and she is having difficulties while talking. She is not able to walk and/or sit. She needs 24 hours of care. I really dont know if there is something to do in this stage, is she having her last time? 

 

Marksueyoung
Posts: 2
Joined: May 2013

First time on here. I started having seizures in Dec. 2011, was diagnosed with an Astrocytoma Stage 3. Surgery reduced it by 96%. Then Gamma Knife, and then Avastin and Temedor. I feel great today. I will be going in for my 6 month MRI, in early June. I will keep everyone updated. 

By the way, it does get better. I feel it really depends on your doctor. My first surgeon told me that Gamma Knife was out of the question. I looked for a second opinion. My second one performed both the surgery and the Gamma Knife. The tumor has not returned as of yet.

Any questions that you may have, please email me at marksueyoung@yahoo.com.

My name is Mark Young

 

 

elizhooper
Posts: 5
Joined: Apr 2013

I was diagnosed AA3/4 on March 19, 2013.  Complications arose and had to undergo lung surgery (old fashioned way with tubes and all) and will start chemo/radiation next week.  It's located in the center climbing over the left side effecting my strength to the right side.  I am going to Johns Hopkins Weinberg Cancer Center for treatments.  I'm a little anxious to begin and wonder how my body will react to the temodar and radiation.  i am hopeful that this will stop growing and we can get it to shrink so a surgeon can take it out.  A surgeon said he could possibly take 70% of it but it would be risky.  They suggested I start with chemo/radiation 33 days (5 days a week radiation, 7 days a week temodar).  I've applied to the Hope Lodge for housing in case I can't make the 60+ miles each way to radiation.  If anyone is in the same boat as me, I'd love to follow our cancer together. 

Thanks and always praying that we can all see a miracle.

 

Marksueyoung
Posts: 2
Joined: May 2013

Elizhopper, 

What about Gamma Knife for the remaining 30%?

Mark Young

elizhooper
Posts: 5
Joined: Apr 2013

I had to do a brain biopsy, then a liver biopsy, then a lung surgery all in the past 2 months - infection was a new thread, so had to grow it to know how to treat it at infection control.  they want to start the chemo/radiation to slow the growth.  if we opted for the surgery to remove 70% we would lose even more time for recovery to begin treatments.  i feel like it's just been one blow after another in such a short period of time. 

 

a09082038828's picture
a09082038828
Posts: 5
Joined: Jun 2013

 My mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there. Thank You and God Bless. !

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