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.
Hi, I am happy that your daughter is doing well.
Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.
I wish your daughter and your family the best.
Sincerely, Laura, Michael's Mom
Hello Laura, I'm very pleased to hear your son's survival story. Can you tell us please what was the stage of his astrocytoma? My sister is in stage 3 and I am so hoping she can make a similar recovery. Thanks.
Hi How is your sister? My son was just dx with stage 3 Just wanted ot ask some questions
I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
Take care and good luck to you and your family. I will be buying your book when available.
I know exactly how you feel when it is MRI time. Michael just had his 5 year one and I was still a mess. It is so hard. I will say a prayer for Amanda and know she will be okay. Like you, I had no idea what an astrocytoma was before Michael got sick. Now I know more medical terms than I ever wanted to.
Please be sure to keep me posted. You can send me an email anytime at firstname.lastname@example.org
Let's keep in touch.
My son was diagnosed with stage III /giloblastoma. He enjoyed 3 years of stability. Can you tell me if your son had any relapes. Charlie had 2 resection back to back and then a shunt put in. He had radiation /chemo / temadar. He suffers from poor vision and cognative effects. I really am trying to find people who have had relapes.
Hi. I read your blog and I was wondering how your son is doing. My husband was diagnosed July 2010. He had surgery and radiation and also took temodar. July 2011 the MRI showed the tumor is back on left side and also on the right side. What treatment did your son undergo after recurrence? Thanks Kathleen
Hi Laura, how are you?
My name is Margaret I live in Brazil, I read his statement on a website and would like to speak to you. I read that his son had a brain tumor and thank God he is fine .. He improved the aftereffects of a stroke?
My son operated a grade two astrocytoma in March this year, he stayed with sequels, this was without vision and with hormonal problems.
I'm very nervous, sad, looks like I'm dreaming ...
I'm using Google translator, I'm sorry because I can not speak English.
Do you have MySpace or Facebook?
May God protect your child, and if possible news.
I have AA3 also. Mine is in between the frontal and temporal lobe, deep down in the crease. They say it is inoperable. They did do open brain biopsy on NOv 9, 2010 though, but surgeion said it was too big a chance to go back in, said he would if he knew he could get it but knows he can't so doesnt wanna take away from me the chance that i can enjoy my daughter as i can now. i have short term memory loss too ans i am so forgetful its unbelievable. I was a school bus driver prier to this. I could remember 150 kids names and 2 entire bus routes everyday and i was a s healthy as can be, i was a kidney donor in 1999 and had always been extremely healthy. i first got sick with a strange sour taste all over body on march 3, 2010, second time on June 4, 2010. i was rushed to hospital this time with seizure activities, which took my driving job. i loved my job. started me on radiation and chemo pill temodar on dec21, 2010, then restarted temodar on mar3, 2011 for 5 days every 28 day cycle, now they have started me on chemo IV on august1, 2011 and i am still taking temodar as before.
I am a 30 year old newly diagnosed brain cancer patient from/in New Zealand. I had a 90% debulking from my right frontal lobe on 31 August 2011 and am halfway through my 6 weeks of radiation and chemo (Temodal). So far apart from being substantially bald in the treatment area I have managed to avoid any fatigue or nausea thus far.
I had a Anaplastic Astrocytoma, which I'm told is a grade 3 and reasonably agressive so will do ANYTHING to get rid of this 10% that remains. I am having doubts about how effective radiation is - should I expect it to be gone, or smaller or show no change in my next MRI? I'm so new to this and don't know what to expect so any advice would be greatly appreciated!
My blog details my journey thus far and is at www.wendywoo44.blogspot.com
I look forward to hearing from you
i had a grade 3 also. Last Januray they completely resected it out of the frontal lobe I had problems with thinking of what i wanted to say, which fixed itself soon after. Eight months later I started noticing mini seizers again so i got tested and surely enough I had a reoccurance. This time due to swelling i couldnt feel my right side for a week, then it took another week for me to be able to learn to walk again. Doing much better now, well except the 5 double dose days of chemo. As of now im going on almost 2 months cancer free again
How long ago did your treatment stop?
Hello I'm glad you are doing well. I'm okay but I sometimes will need to talk with those who know what it has been like. I'm pretty used to it now because it's been since 2001. Just wanted to say Hello and maybe we can discuss situations concerning tumor sometimes. I have my annual MRI tomorrow.
Thanks Jose, it is my job as well, to help others who have gone through the same thing as you & I.
Hi I'm 33 years old andvi have 5 fantastic kids I live in wales in the uk I was diagnosed with aa111 on deb 14th this year and had my surgery on 23rd of march they managed to get 95% of it out it was top right superficial and very accessible I've then completed 6 weeks of radio with no chemotherapy yet I've got my first MRI in October since I finished treatment I'm so scared I just want to be ok .. !!
Hello, first of all thank you for telling others about your story. My sister who is 26 years old and is fighting for her life. She also has Anoplastic Astroyctoma Level 3. She has two small children and I live 90 miles away. I can't express the hope it give me that there are individuals that have survived this cancer! I have been searching for ways to encourage my sister not to give up.
Can you tell us when your sister was diagnosed?
my husband was diagnosed with brain cancer oct 1, 2000. it was inoperable. went through radiation, stereo tactic radiation and chemo therapy. i believe he is alive today because first, we went to the best hospital in our area. get on line and research this for your area. too many families are so stunned that they stick with the place that diagnosed them. this is a big mistake! go to a research and teaching hospital. we drove often 5 days a week for 1 and half hours each way it was well worth it. the end result is that we still have him his children and grandchildren and i are greatful. yes, he has some problems, double vision and numbness on his right side as the tumor was on the left. he was later diagnosed with parkinson's(not a common occurence) actually it is believed that that started before the cancer. that has created further complications. had he only had the cancer to deal with he would still be working, playing golf, going to florida for the winter and pretty much living a fairly normal life.
I'm new to this message board so I'm not quite sure about it all. I was curious (maybe you've said and I missed it) where is your husband's tumor located in the brain? I am 23 years old just completed my first chemo/radiation/chemo treatments and I haven't found many places til this that talk about brain tumors. Mine is a grade III astrocytoma located in my Thalamus pretty much exactly in the middle of my brain making it inoperable. I myself have numbness on my right side. It was found when I was 20 and now I'm 23, any infomation you could suggest would be greatly appreciated! Thank You!!
his tumor was near the thalamus and inoperable. he also has experienced numbness on his right side which has never gone away. he had chemo and radiation. the chemo went on for 3 years. actually he had 3 different ones. first tremodar which did not work for him, then he went into an experimental drug which shrunk the tumor but caused too many side effects. his last course of chemo was procarbazine and ccnu. he also has double vision but, had he not been diagnosed with parkinsons' disease he would have continued on with being fairly active. the two diagnoses have no relationship to one another so do not worry about that. i hope you are going to a teaching hospital. also, if you should experience shortness off breath get to the nearest hospital not to alarm you ,but brain tumor patients can get blood clots from i believe, the chemo. my husband got clots in his lungs and they put a filter in the chest somewhere and that was the end of that problem. best of luck. also, i am assuming that this is a primary tumor not a secondary and that is a good thing(if there is such a thing)! i am sure that you know this but just remember they are only treating one cancer not many. it is rare that brain cancer spreads anywhere else in the body but other cancer can spread to the brain. also, get physical, speech and psycho therapy it will help.
would be great to exchange experiences, you can reach me at email@example.com
gvillek, don't know if you have been responded to but, want you to know that you need to go to a teaching hospital for the best chance of survival. my husband is a 9 year plus survivor. we went to henry ford hospital which was the best place for brain cancer in or area. get on line and find out the best place in your area for her cancer. it is a kick in the gut and you need to take charge when she is beaten down an advocate for her. you best chance is a teaching and research hospital. go! go! go! and good luck.
It is wonderful to hear your husband is a 9 year surivor. My son is 18 and has AAstage3 and has had 3 surg. to remove all they can see without damange and 5 wks radiation 1 week cyber knife then at the same time chemo then white counts would not come back up so they change chemo and now the PET scan comes up with nothing active ours dr's at Geaorgetown unv say that it a good sign but NIH and Childerns say it has progressed so they want to do a trial med on him please what kinds of meds did you guys get and would you let them do exp. drug trial on your Child or family mamber? Hopeful that We can kick this
All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".
That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.
Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.
Healed and whole in the name of Jesus. Drug Free, Cancer Free.
If I can help in anyway please let me know
God Bless Kitkatkaz
I'm so glad that you are doig so well and I know that GOD is the only one that can help any of us and God's taken care of my son this far and I know he wont let us down. We just have a long road ahead of us Hope its not a rocky one! we also have been to church for a healing pray. You can always help John my son with pray. so he to can be healed and whole in the name of Jesus.
Thank you for for uplifting thoughts
D Steras God bless you also
I was diagnosed with Anaplastic Astrocytoma Stage 3! They found the tumor on October 20th, 2009, and done my surgery October 29th, 2009!
The Sunday before my surgery I to went to church and rededicated my life to the Lord! Then two Sunday's from then (Sunday just past) after my surgery I gave my testimony at church. Feel free to go to facebook and request me Michelle Johnson and there is a link to You Tube to watch my testimony cause I want the world to know the power of Our Lord Jesus Christ!
My treatment plan I have typed out because it is so hard repeating it so much so I will post here for all to know because my journey begins I believe November 30th:
We received a call from UAB today before we left for my Radiologist appointment and they stated that they want me there Monday the 23rd at 11:00 AM. It is a one day appointment. They will review all of my medical records and slides to see if the treatment that the radiologist Dr. Russell, who I went to see today, and the chemotherapy Dr. Becker, that I will have to also see here in Mobile on Wednesday after I return from UAB, all agree on the best treatment possible. I go back to my radiologist Thursday for them to make a mask to mark where radiation goes. They want to do a combination of radiation that I will do 5 days a week for 6 weeks, and a Chemo Pill called Temodar I will take 7 days a week until the radiation is complete. I will see the Chemo Dr. maybe once a week to monitor blood levels throughout the therapy, but they feel this is the best way to aggressively treat and keep the Cancer from returning and spreading. The radiologist is confident that this is the BEST course of action. He is glad that it is Dr. Nabor’s in UAB that will be my second opinion as well as his consultant on treatment. Dr. Nabor’s actually did a procedure on my Radiologist, treatment for something neurological and the radiologist has not had problems since Dr. Nabor’s helped him! My Radiologist has worked with Dr. Nabor's for over 15 years. The radiation treatments they state takes 15 minutes, and 10 of that is just getting me on a flat bed. The actual treatment only lasts 5 minutes. It is not enclosed, the machine is just above my head. They will put a face mask on me that has everything marked so the radiation goes the same place each time, it also holds my head very still so that I can not move it at all to be sure the radiation is only in the same spot every time. The side effects basically are that I may lose hair at the different spots where the radiation enters the skull, maybe some nausea that they can give me meds for, and that there may not be any other side effects. The chemo pill should be very tolerable as well. The Dr is also letting me come off the steroid at a more rapid pace. Yea maybe I will get some sleep. The Radiologist also mentioned he knows Davis Pilot when he noticed where I work :) I miss you guys, and I am very positive after meeting with the Radiologist. When I come back from UAB probably Tuesday since it is a one day appointment there, I will have to meet with the Chemo Dr. Wednesday the day before Thanksgiving, and my Radiologist said they will give me the Thanksgiving holiday off, and then start treatment. So since Radiation is Monday thru Friday I feel the treatment will most likely start Monday after Thanksgiving which will be November 30th. So 6 weeks from then I should be on the road back to me :) He did say that about week 2 or 3 of the combination therapy I will most likely be real fatigued and tired, but I can live with 3 or 4 weeks of feeling yucky since I had headaches for a few months and was sick everytime I turned around. It will honestly be nothing different than what I was already feeling. I will let you guys know the exact date treatment will start when we know, and we can count down the 6 weeks!
You stay positive still kitkatkaz! I am glad to have read your story. This discussion thread had been a lifeline to me with all the insomnia from the Decadron.
Hi from Australia Michelle.
My wife of 24 years (aged 49) was also recently diagnosed with a Anaplastic Astrocytoma Stage 3. Heathers first seizure was October 10 2009 from out of the blue. Two days later surgery removed 80% of the tumour and we are now beginning week 6 of radiation treatment coupled with daily Temodal chemotherapy medication. As we all do, I scour the internet for answers solutions, alternate treatment options and other life experiences.
The trouble I have is that Heather is a great person, fantastic mother, good christian, a wonderful wife and friend, so I am in awe as to why, if there is a God, did this happen to such a fine person?
I dont doubt belief has healing power, but my faith is questioned at this point.
Heathers treatment seems to follow the sames lines as all AA/3 patients around the world. Surgery, 6 weeks of radiation, chemo then wait? Luckily Heathers surgery was a 100% success, in that there were no side effects, and luckily she is taking all the treatment on the chin. Heather has lost a lot of hair from the radiation, is listless some days, and has a few mild reactions to the Dilantin and the Dexmothzone. Otherwise she has maintained working (three days per week school hours)and hopefully will enjoy a good family Christmas.
No one really has spoken of life expectancy, and we haven't asked, but it is always there hanging over our heads. We have two teenage children, a daughter at University and a son finishing high school. Do we set short term goals or long term? There is no one who can advise us of this, they all just say we will see when the radiation treatment is finished and a few weeks after that we ill do more MRI's.
Any answers/advice would be appreciated.
When my kid sister was diagnosed with AA3 at age 25 I had a lot of the same questions. Why her, why so young? I thought I was being punished because I knew it couldn't be because of anything she did wrong. In time I realized that cancer doesn't know or care what kind of person you are. Cancer strikes the old, the young, the good people, the bad people, etc. It is my belief that what's happening to your wife and my sister are not an act of God but an act of nature. I know how hard it is to accept and I wish I had better advice other than to say you will get used to the idea. You will never like it and you will always wish it would go away. But at some point the shock will wear thin and it becomes just a tiny bit easier to accept.
As far as life expectancy goes, everyone is different and nobody can know how much time anyone has, whether we are a cancer patient or not. New advances are made in cancer research all the time. Who is to say they will not find a cure or a much better treatment for AA3 in the next several years?
I think you should be very wary of life expectancy stats you read on the internet. Much of that info is out of date. Furthermore those are only stats and your wife is an individual person, meaning the stats might not apply to her and she might outlive everyone. My sister is convinced the stats mean nothing and she will be with us much longer than the doctors have predicted.
My sister is making some progress in her treatment. She went through radiation and she's now taking Temador. On her last MRI they discovered 5% shrinkage. I know this doesn't sound like much but it's headed in the right direction so we are celebrating. Cancer has taught us to celebrate small victories and that is what we are doing.
I wish your family the very best in this fight. I hope you will stay in touch and keep us posted on your wife's progress.
Thanks for your reply and kind words.
Today, Tuesday marks day 2 of week 6, only four more radiation treatments, and four more chemo doses. We get a break (we I mean Heather)until January 4th when the chemo dose triples for five days into a cycle of five days on 15 days off.
A break will be nice. I work each day till mid afternoon, go home, pick up my wife, take her to the radiation Clinic for a treatment, then home to get dinner ready. I really didn't think I could do it, but I made a promise that I would be there for every treatment.
Some guys aren't that lucky. The radiation clinic we go to treats over 300 people a day. More than half these people travel in from far away, alone and unaccompanied.
I feel proud that I can hold Heathers hand and walk through the door to each and every treatment.
Staying positive is hard, very hard. In the back of my mind I have these recurring thoughts. What if........
It is very encouraging to read the success stories on this site and to hear from positive people. Cancer touches more people than we know. Everyone I know, knows someone who has been affected in one way or another by this dreadful disease.
I still cant work out why. You live a good life, try to be kind to others and then get dealt this type of hand.......a hand you have almost no control over.
Still....it's Christmas. The decorations are up, the trees are trimmed, hope is in the air and Santa is coming.
Someone asked me what I want for Chistmas? I said not much....I just want my wife back, safe sound and healthy.
Peace happiness and kindess to all........pass it forward.
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.
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.
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.
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.
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,
Would you be kind to inform me of the hospital and doctor taking care of you?
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.
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!
Tell your sister I survived it twice and im still going strong
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.
kmd1019 how are you??
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.
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
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.
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.
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.
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.
I hope to be like you one day .. People like you give me so much hope x
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