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Astrocytoma Grade III-Survivor

Quilmes's picture
Quilmes
Posts: 7
Joined: Mar 2008

If any one needs help please let me know, I went through brain cancer and have lived. My calling is to help others survive also.

Jose

sue Siwek
Posts: 280
Joined: Jun 2009

my husband was diagnosed with a grade 3 astrocytoma in oct. 2000. he has survived 10yrs. i am not a big believer but my husband is. think about the only miracle in my opinion, the birth of a child! 10 toes, 10 fingers so beautiful. how can thousands of children be created by humans be totally perfect? thay can not be. i hate to compare us to a car but, occasionally there is a lemon. sometimes they can be fixed sometimes not. i hope your christmas wish comes true.

tommybear
Posts: 112
Joined: Oct 2009

can be found throughout life, even in our everyday lives, if only we take the time to notice. I also believe that we are exactly who we are supposed to be and where we are supposed to be, although it easy for us to judge ourselves and others, and easy for us to pity ourselves.

I am not always able to live peacefully, and not always aware of these things - that everything is exactly how it is supposed to be - because, no I am not perfect, but I am not a lemon, either.

papainting
Posts: 2
Joined: Dec 2009

Michelle, My husband was diagnosed with Astrocytoma Grade II. His surgery was Sept 10, 2009, at Thomas Jefferson. We have been working with a nutritionist from Utah, Jeanne Wallace. You can look her up on the internet. He only had radiation, but made it thru with minimal side effects we believe largely due to the supplements Jeanne had him taking. Also she recommended that he exercise 20 - 30 min prior to his treatment to have the blood flow help the radiation treatments. He had 27 treatments the last day was the day before Thanksgiving. On Dec 3 we took a much needed vacation to Disney! He did great. His biggest problem was some nausea caused by the radiation. Although you want to stay on a healthy diet, at this time it is important that you do not get ill on healthy food because you will not ever want to eat it again. This is called the "scape goat" effect. He took boswellia and curcumin, shark liver oil, and fish oil and did not need any steroids. I highly recommend to anyone going thru this to get a good nutritionist. Jeanne has specialized in nutrition for brain tumors which is why we chose her. Since we live in PA and she is in Utah our consults have been via phone and e-mail base on specific blood tests.

May God be with you and your family at this time. It is a total emotional rollar coaster. Don't be afraid to research things on your own. I haven't stopped since we found out Bob had a tumor on Aug 16, 2009. I read in a book to use the 333 rule. Get three opinions, make sure your medical staff has at least three years experience, and make sure the medical equipment is three years old or newer.

Susan S
Posts: 3
Joined: Jan 2012

I hope Michelle is doing well. I was diagnosed in the summer with a low grade glioma. I'm just starting down this road and have hooked up with a naturopath. You might like the book "Life over Cancer" by Dr. Keith Block. He has used an integrative approach to cancer treatment. He treats the whole body: physical, spiritual, emotional....
I like the 333 rule. I'll have to remember that.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I am doing well, and I have had a clean MRI for 2 years and almost 3 months. I go for a follow up MRI on 01/18/12, and I pray every day that it will still be clear. I just started getting back on this site a couple weeks ago, and reading old posts really shows me how far I have come in these 2 years. Time certainly flies by. I am going to look for that book so that I can read it! I am open to anything that will keep me healthy for my daughter who is 4. Please keep me posted, and I will keep you in my prayers.

Thoughts and Prayers,

Michelle
Mobile, Al

AngelaMinas
Posts: 2
Joined: May 2010

Hi Michelle,

Would you be kind to inform me of the hospital and doctor taking care of you?

Thank you...

Angela

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

kitkatkaz, i also have AA 3. I have radiation and chemo pill temodar from dec21, 2010 to feb 3, 2011. then restarted chemo pill march3, 2011. Had open brain biopsy on Nov9, 2010. They just started me on Chemo Iv on aug 1 , 2011 and I am also still taking temodar for 5 days every 28 day cycle. After my radiation, they did MRI and it showed my tumor had grown instaed of shrinking. thats when they decided to start the IV. Thank God you are doing well in your fight, praying for you to stay cancer free. i pray for a cure everynight. Please just add me to your prayer list.

smwone
Posts: 3
Joined: Feb 2012

Kitkatkaz, Wow! Cancer free...that's amazing! I am a survivor 2.5 yrs. G2 Astrocytoma. I have yet to hear the words Cancer free...would love to!

smwone
Posts: 3
Joined: Feb 2012

Kitkatkaz, Wow! Cancer free...that's amazing! I am a survivor 2.5 yrs. G2 Astrocytoma. I have yet to hear the words Cancer free...would love to!

In_it_for_the_l...
Posts: 17
Joined: Jan 2012

Tell your sister I survived it twice and im still going strong

kmd1019
Posts: 1
Joined: Oct 2008

Jose,

This friday it will be 4 weeks since my 90% resection of my Astrocytoma Tumor. Yesterday I met with the Oncologist to get the next step. I found out that the next step will be 6 weeks of radiation and chemotherapy. I am trying to be strong and not doubt. Everyday I wake up and say that I am going to beat this thing.
I am 28 years old and my husband and I just celebrated our 6th wedding anniversary on the 19th.
What lead you to your tumor discovery? How did you cope with the times of doubt? My surgeon has been amazingly positive so I try to cling to that, but still get discouraged.
I pray that all is still well with you, and if you could please fill me in on your journey.

Thank You,
Kara

mish101
Posts: 2
Joined: Sep 2009

kmd1019 how are you??

dc9md80
Posts: 4
Joined: Aug 2010

My husband was 35 when he was diagnosed and he is a 21 year survivor! He believed from the start that he could beat the cancer and he did, with a lot of prayers and great medical care. Not to say it has been all a picnic, there have been rough spots, especially now as he gets older. His neurosurgeon once told him that his brain age is about 15 years older than his real age because of the radiation. So that presents challenges, but he was able to see both of his children grow up, attend college, marry and have their own families. It can definately be done! He had a grade 3 Astrocytoma.

Haley75
Posts: 8
Joined: Aug 2011

I hope and pray that I'm as lucky as your husband I also have aa111 and I want to see my five fantastic kids grow up ... I'm finding it all very hard I've had surgery they removed 95% of it it was in the top right superficial .. I just want to get better x

ronefx
Posts: 11
Joined: Jan 2009

I posted in another thread, but I had a grade 3 astrocytoma tumor on the right frontal lobe. It was completely removed and have been cancer free as far as I know for 15 + years. I am looking to find other's stories of long term problems and issues they have had.

momfor2
Posts: 8
Joined: Apr 2009

Did you have any further treatment? My daughter has grade II astrocytoma left frontal lobe. The Dr. said he completely removed tumor and she needs no further treatment for now. She is having short term memory problems but not so bad that she cannot work.

momfor2
Posts: 8
Joined: Apr 2009

How are you doing today ronefx. Did you had any chemo or radiation. Glad to know you have remained cancer free for so many years.

ronefx
Posts: 11
Joined: Jan 2009

sorry, it took me so long to respond, I don't check here that often. I had 6 weeks of Radiation & 6 courses of chemo. I am still doing good, just get tired here & there, so I take a nap(which I enjoy anyways) but, that could be from everyday stress, I normally don't think about the fact I had cancer, cause it has been so long.

Haley75
Posts: 8
Joined: Aug 2011

I hope to be like you one day .. People like you give me so much hope x

dsteras
Posts: 8
Joined: Nov 2009

Wow I am so glad to see that you are 15 plus cancer free! my son is going through grade 3 astrocytoma tumor treatment now has had 3 recetions radiation and 2 chemo 1 bio drug now NIH would like to have him in a trial they thinck it has progressed and our dr's did a PET scan and showed no actived so we are so confused about letting them so more but I want my son to have the same wonderful result as you have can you shed some light on this

ronefx
Posts: 11
Joined: Jan 2009

.

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ajd1234
Posts: 3
Joined: Apr 2009

Hi, my niece has AA, the doctors are not giving us a lot of time.
She was diagnosed 4 months ago , had radiation done, chemo. Please help if anyone has a child with non-operatable AA grade 3.
May G-d help all who are suffering with any illness. thank you, angela

‹ Childhood Medullablastoma Is No Treatment an option? ›

Anniepanda
Posts: 1
Joined: Jan 2018

how is your Niece?

 

bain0906@gmail.com

kempenl
Posts: 13
Joined: Jan 2005

Can you and all survivors please tell us what long-term effects you've had from chemo and radiation?
thank you so much.

janmiz
Posts: 2
Joined: Oct 2004

I am the mother of a 47 yr old daughter who had AA grade 3.She is 7 yrs.clean.she is going to have her MRI in may and every time I cross my fingers.I have tried to ask docs about the long term effects with no answers.I finally realized that they just don't know, as most people don't last long enough to do studies on them.I saw that my daughter didn't lose hair from the temedar but she lost hair from the radiation.large strip that didn't come back. she has gone to a doctors for tests and has short term memory loss ,fatigue,cognitive problems ,impulsivness, loss of common sense ,anxiety and some times depression.each year that she takes the tests it gets a little worse.I blame the radiation to her brain.I am sure that it has killed good cells as well as bad cells.she certainly is very frustrated.I feel it is getting worse little by little.

dsteras
Posts: 8
Joined: Nov 2009

my son was dig. with AAgrad 3 june 2008 and had 3 surg. radiation and chemo "His hair has not come back completely where the cyber knife was" now waiting for a trial to start at NIH hope that we can kick this as you have please any advice? frustrated is a under statment.

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kishi
Posts: 3
Joined: Apr 2009

Hi
I have Grade 3 Astrocytoma and can take any help I can. Diagnosed in Dec.2005. Chemo and Radiation and now I am trembling. Hope all with cancer will someday be saved and be cancer free. I believe we cancer patients are suffering but never as much as those who love us and are looking at us everyday helpless wishing they could do anything to make us feel better.

sue Siwek
Posts: 280
Joined: Jun 2009

where are you going for treatment? the trembling may be short term. please go to a teaching hospital, it will have the latest treatments. yes as a caretaker we will do anything to save our loved ones, to save our loved one. go with it find the strength to do this. there is a place in your state or a near state that may extend you life. you have had a kick in the gut, get up or have and advocate get up and fight for you, it is not over.

momfor2
Posts: 8
Joined: Apr 2009

jose,

how are you doing now. Do you have yearly mri's. Did you have radiation or chemo

kishi
Posts: 3
Joined: Apr 2009

Hello My friend

I had radiation, chemo and regular MRI's on agenda. I am scared but trying to act or look tough for familly. Hope you are ok and cool.

Regards.

ChristyM
Posts: 38
Joined: Jun 2008

I had my surgery one year ago, May 11 2008--on Mothers day. I have since completed radiation and 6 months of chemo (beyond the daily I was taking during the radiation) I am going to be starting another 6 months here soon-My husband and I were working with a fertility doctor before we started again.
I have had some short term memory loss, but I find reading and relaxing (I think this is the most important thing) have helped me a lot. I also lost some hair from the radiation but none from the chemo.
My one year MRI is scheduled for next Monday, the 11th. I am looking forward to celebrating one year clear soon. (In other words, keep the positive attitude and statistics dont matter!)

PBJ Austin
Posts: 347
Joined: Mar 2009

I will be thinking of you on Monday and wishing you the best on your MRI.

Priash
Posts: 22
Joined: Apr 2009

Hello Christy:

How are you doing? Please keep us posted.

God Bless
Priash

ChristyM
Posts: 38
Joined: Jun 2008

I had my MRI and follow up with my surgeon today. There is no reoccurence! We will be moving my MRIs to every 6 months now.

PBJ Austin
Posts: 347
Joined: Mar 2009

I'm so happy for your MRI results, ChristyM!! You give me hope that my sister will have good results from her treatment also. Thank you for sharing your news.

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PBJ Austin
Posts: 347
Joined: Mar 2009

Thank you for your stories. I rejoice every time I hear of a survivor of any cancer, especially AA. My sister has tumors in her left frontal lobe. One of her tumors was removed and the remaining 2 tumors are small. The tumor they removed was sent to a lab and AA was just diagnosed in March. At first we all imagined the worst but stories like yours do so much to lift my spirits.

She has just finished 6 weeks of radiation at MD Anderson. They will wait 3 weeks to do an MRI, then 2 years of chemo will begin. We had a big celebration for her radiation graduation. We are taking it all one day at a time and enjoying every day.

Thanks to all on this board, I love hearing from AA survivors.

Priash
Posts: 22
Joined: Apr 2009

New member. Same illness as yours.

God Bless
Priash

tmiles's picture
tmiles
Posts: 1
Joined: Jan 2008

I had a Grade 1 Astrocytoma removed from my front right hemisphere in 01/2004. I have had no reoccurrance per the last 5 MRI's. Thank God!
I am now 5 years clear, with guilt for having survived with nothing debilitating and I am starting to have emotional problems. Anger, depression, memory recall and I don't know how to cope with it much less how to correct the problem. I live in the Riverside, Ca. and I am looking for help with the psychological side of this. Does anyone out there have some information or contacts that can point me into the right direction?

Tony
LNTMILES@earthlink.net

Mannie
Posts: 52
Joined: Oct 2008

Tony,

I don't have any info or contacts but I wanted to at least reply to you. I don't think there's anything wrong with feeling guilty for surviving but I disagree that you had nothing debilitating. In my opinion, having any grade tumor is debilitating to a person's brain to cope with, especially when it's located in the area of the brain responsible for emotions/reasoning. My tumor was in my right frontal lobe and I can whip through emotions when I'm run down. I notice that my memory and my decision making capabilities are pathetic when I'm tired.

I actually think you're completely normal in your reaction to having a tumor, it's part of the grieving process we all have to go through. Except, online here, I don't hear that mentioned too much whereas I do hear this mentioned a lot in the "live" brain tumor support group I go to twice a month.

Take Care of Yourself Tony,
Mannie

Flav1234
Posts: 14
Joined: Jul 2011

Hi Tony

How are you doing now? I hope you found the help you needed... because I need help now. My fiance also had the same tumor (Right Front temporal lobe) and its been 12 years and he is so far gone with Anger, depression, social problems, fatigue ... hes now mimicking many mental disorders. I have been with him for alittle over a year and I am trying to find him help and failing miserably.

If you found a treatment facility please advise...

thanks
Tracy

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joannterrell
Posts: 1
Joined: Jun 2009

My husband just got his brain tumor operated on by Dr. Allen Friedman at Duke. We were originally told it was a grade 1 or 2. Once they took out the tumor they said it was a grade 3 tumor. He is 45 years old and is in great shape. They took out a tumor the size of the orange but there is a small bit left they was in healthy tissue. They are going to talk with us tomorrow about the radiation and chemo.

kempenl
Posts: 13
Joined: Jan 2005

Hi -
was your tumor recently upgraded to AAO3? Here's a pretty good forum for info - hope you find it helpful.
http://www.cancercompass.com/message-board/cancers/brain-cancer/1,0,119,5.htm

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

Hi,

Yes, Michael's tumor was a low grade 2 astrocytoma. I wish your sister a full recovery. Keep me posted if possible.

Thank you.
Laura

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dsteras
Posts: 8
Joined: Nov 2009

my son is 18 stage 3 AA and has had 3 surg., radiation and chemo 3 kinds.One hosp. thinks the tumor is stable becuase the PET scan has no activity, NIH and Childerns hosp. thinks the tumor has progressed and want to try a exp. drug trial on him. Would you let them and what kind of chemo did you undergo?

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