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Oligodendroglioma

Sybille
Posts: 2
Joined: Feb 2004

Hallo

I am intrested in people who are deal with the same brain cancer. My husband had surgery (about 90 % resection) in october 03 (oligo grade II/III) and than he had radiation therapy (36 x , tot. 60 gray) and now he is under chemo (Temodal). Fortunately he is very well, without any handycaps and pains. He can go to work and is all the time in a good mood... We live in Europe and I ask you if there is some hope for a long survival time?

Thank you for your answer and kindest regards and good luck for all.

Sybille

chiligrl's picture
chiligrl
Posts: 20
Joined: Mar 2004

Hi! I, too, had an oligo (Grade II) resected in October...90-95%..then 6 weeks of radiation and Temodar. I am doing well...good days and bad days..I finished treatment in Feb.and am at home now, working and doing well. I know that some sources show a bad prognosis relating to survival time...but my doctor assures me that it might be 20 years before my oligo returns if it ever does. Be hopeful, be happy and live every day as if it IS your last!! You know and I know that no one can tell us what is going to happen in the future. You and hubby just live it up..and remember, any of us could go any minute...Good Luck to you and Hubby!

Sybille
Posts: 2
Joined: Feb 2004

Hallo Chiligrl

Thank you for your kind answer. I am lucky to hear that you are well, too. May I ask you how old you are? I try to think positive but sometime all power leaves me... So I hope for you and all others all the best. It would be nice to keep in touch (perhaps by e-mail?) Kind regards Sybille

chiligrl's picture
chiligrl
Posts: 20
Joined: Mar 2004

Hey, Sybille! Sure,we can stay in touch. You can e-mail me at wed8@excite.com.

Dinee
Posts: 2
Joined: May 2004

Hi Sybille, My husband also has an oligodendroglioma. We are almost five years out now and have survived two surgeries, two bouts of radiation and Chemo. I finally understand what managing a brain tumor means. He is doing really great considering all of the procedures. Get back to me if you feel like chatting. Dianne

livingdtd
Posts: 1
Joined: Jun 2004

livingdtd
Hi Just a note of hope I am a 6 1/2 year survivor. 25 sessions of radiation. (Grade 2)

speciallady30188
Posts: 2
Joined: Jun 2009

Hi, It has been a month since my Brain Tumor was removed and I just finished my 4th Radiation Treatment and there will be 5 weeks of treatments total. I would like to know if I should expect to have Chemo Therapy also...no one has mentioned Chemo Therapy yet.

MistyM
Posts: 1
Joined: Jul 2009

Hi, my very good friend was just diagnosed with this same type of tumor. I have since spent over 40 hours researching case studies, various treatment types, effects of treatments, etc. From what I have read and what her neuro oncologist explained, generally speaking if your tumor is operable, which you said yours was, then radiation is a standard follow-up to surgery. This type of tumor returns in most all cases. When the tumor returns, this is when you would expect to have chemo or chemo/radiation combination treatment. Please remember you are your own advocate. Doctors are treating you based on their educated guess as to how your tumor will respond. Make certain your Doctor has ordered the test that determines your chromosome markers. Believe it or not, they don't always order this test due to cost. Usually in this type of tumor there is a 1p and 19q deletion. This is critical in determining your treatment type. Doctors are concerned with "attacking or killing" the tumor. In radiation and chemo, the "killing" of the tumor also destroys many good things, i.e., bone marrow, etc. You need to be responsible for replacing the good things through diet rich in antioxidants and supplements found in nutrition stores. (the real ones not the chains) If you find an alternative treatment you want to use in addition to your prescribed treatment, you can take the supplement to your Doctor for approval. Above all else, turn to God. He has the answer to all your questions! Hope this helps.. and hope you are doing well!

IrishMCH1968
Posts: 1
Joined: Feb 2011

MistyM - I completed 6 weeks of Temodar and daily radiation after my 2nd resection in May of 2009. My Medical Oncologist suggested the combination of chemo/radiation because the 'dna of my tumor cells would respond well to the treatment'. I was also advised that healthy brain tissue could also be damaged as a result of trying to keep tumor cells from repairing/growing. My initial resection was in 2005 with no oncologic treatment, just monitoring via MRI's. The oncologic treatment was extremely tiring, even if low dose taken at home. Although I was very educated about my medical issue, it was still difficult to deal with the side effects both physical and emotional. I've also been told that it could be 20+ years, if ever, before the tumor cells grow again. Thankfully, my tumors have both come back as benign with no change in grade (3). I'm hopeful that my hair, where the surgical flap is, will regrow to it's normal fullness and texture, but that may be a long shot.

survivor mother of 2
Posts: 1
Joined: May 2011

May 2010 I had my brain tumor removed. They said it was 100% resection. I have had no chemo or radiation at this time. They said it was stage/grade II with 1p and 19q co-deletions. All of my MRI's have come back good so far. They said my median range was 8 - 10 years. You said your tumors have both come back benign with no change in grade 3. How soon did yours come back? They did not come back as cancerous? My tumor was in my right temporal lobe. A few days after the surgery I had a seizure so I am on Keppra. Did you have any seizures or do you have to take seizure medicine? They told me I will be on this for a long time. I do not know if it is from the surgery or the Keppra but I can not eat well. I am still losing weight and I just do not feel like myself. I did lose some of my eyesight in my left eye and I feel "off" quite often. My memory is not how it use to be. I can not run or play ball with my boys. I did play bad mitten but anything on my left side I did not see. You were told it maybe 20 years before it comes back? I have a 9 and 5 year old. When I was told 8-10 median range I was and still am upset. My youngest my not even be out of high school or have his drivers license. Do you have problems with memory? If so did it get worse each time you went in to the the new tumors removed? Do you just have problems with your hair where the resection was? All of my hair is thinning. Alot of my bangs fell out. My eyelashes and eyebrows are very thin. I have not had chemo or radiation. I do not know if it is from the surgery or medicine. I just wish everything would go back to the way it was before this happened.

sadinholland
Posts: 236
Joined: Apr 2011

survivor mother of 2,

My husband has the same issue with his sight on the right side. His was a grade 3 and cancer. He is working and has never had a seizure. He is doing very well. They told him 3-5 years. We have an 11 year old and this news was very upsetting. The whole thing is hard to bear. God Bless you and your family.

FIGHT FOR LIFE
Posts: 3
Joined: Sep 2011

MY HUSBAND WAS DIGNOSIED WITH OLIGODENDROGLIOMA 2 IN AUGUST 1997. HE HAD SURGERY AND IT CAME BACK OLIGO 3. HE HAS HAD PCV, STEM CELL TRANSPLANT, TEMODAR, RADATION AND IS NOW ON AVASTIN. THEY TOLD HIM THE SAME THING 3-5 YEARS. IT HAS BEEN 14 YEARS SINCE HIS ORIGINALLY DIGNOSIS. HE STILL WORKS. MEMORY NOT GOOD. WE CAN ONLY PRAISE THE LORD FOR ALL HE HAS DONE FOR US. YOU CANNOT BELIEVE EVERYTHING THE DOCTORS SAY. GOD MADE US ALL DIFFERENT! I RESEARCH EVERYTHING I CAN FIND ON NEW TREATMENTS AND I KNOW ONE DAY THEY WILL FIND A CURE! HE HAS HAD 2 TREATMENTS OF AVASTIN AND WE GO FOR MRI OCT 20TH. SO I AM PRAYING THE BLOOD STARVING TREATMENT WILL HAVE STARVED THE TUMOR. MAY GOD BLESS YOU AND WRAP HIS LOVING ARMS AROUND YOU FOR HE KNOWS THE CRISIS YOU ARE GOING THRU! JUST REMEMBER YOU DON'T HAVE TO WORRY ABOUT TOMORROW BECAUSE GOD IS ALREADY THERE! GOD BLESS!

mom_in_CT
Posts: 19
Joined: Jun 2011

Although drs. will tell you that Keppra doesn't usually cause hair loss . . . when my daughter was on it, her hair was falling out by the handfulls. Within a few days of coming off of it, her hair stopped falling out. There are a lot of different anti-seizure medications. Maybe you can try a different one. They all have side effects.

mom_in_CT
Posts: 19
Joined: Jun 2011

When my daughter was on Keppra, she lost a lot of hair. The dr. didn't believe it was the Keppra that was causing it, but as soon as she stopped taking it, her hair stopped falling out. There are a lot of different anti-seizure medications. Perhaps you should try a different one.

Mamike
Posts: 3
Joined: Jun 2011

IrishMCH:

I also had a craniotomy for a grade 2 Olio this past June. I am now 6 weeks out from surgery and have yet to start a follow up program of treatment. One oncologist reccomended radiation with Temador. Dr. Friedman from Duke reccomended doing nothing, just monitoring with MRI's every couple of months. I really don't know what to do. My Olio was located in the left frontal lobe so I'm actually doing pretty well all things considered. I'm going to Duke at the end of this month for a two dauy work up. Maybe he can clarify things for me. Wish me luck.

a018528
Posts: 4
Joined: Sep 2011

Mamike, I recently found out I have Stage 2 Olio and afterward a biopsy proved it to be non-malignant. It was actually found in 2007 and was 4cm in size. This summer, an inner ear infection triggered some seizures which prompted the biopsy. During my research on Oligodendrogliomas, I found a recent article from Duke U. about gene mutations. While you were at Duke, did they happen to mention anything about it? The article was published by Johns Hopkins and Duke U. at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720101/

Like you, my neuro-surgeon recommended doing nothing other than monitoring with MRIs. The tumor is 6cm now but I don't have any symptoms since this summer. I take Keppra now, but would like to see other treatment options than craniotomy for these low grade tumors.

A11brown
Posts: 1
Joined: Jan 2012

Mamike,

Just wanted to see how you are doing. I just under went surgery on 12/12/11 for an oligo grade 2 in right frontal lobe. I experienced a post op stroke which has limited my movement on my left side mainly my left arm/hand/ foot, but rehabbing to get as close to "normal" as possible. Dr. Friedman at Duke also performed my surgery and has not recommended any radiation etc at this time.Just curious to see what type of treatment you are on now. Originally doc said he could remove at least 60% but my last follow up MRI on1/24 Friedman stated he got a lot more than he anticipated which is good news. After looking at the MRI I could barely see anything, but of course my eyes are different from the docs. Again just curious to see how you are doing and if any treatment plans are in the near future other than monitoring every 2 months? I wish you luck! Friedman is one of the best in the nation!

speciallady30188
Posts: 2
Joined: Jun 2009

Looking for more information on this Cancer diagnosis. Could anyone help me find out more about this particular cancer?
I'm in my 3rd week of Radiation Therapy and want to know more about Oligodendroglioma tumors.
Need anyone that can help me.

sotosol
Posts: 3
Joined: Nov 2009

Merry Christmass
Oligo is a slow growth tumor that you have nothing to woring about it.This tumor respon very good at hemo and radiation very fast.I have oligo 11 and i had only radiosurgery Gamma knife 2 years ago.Iam good and iam taking only Keppra and toppamax.Ihave many friends that i met on line that they have tha same problem over 15 and 20 years in USA . Acually iam from Cyprus a small island near Greece so sorry for my mistakes.
take care
Maria

betsyB610
Posts: 6
Joined: Jan 2010

I was diagnosed 8 years ago. The "Alien", as we call it, is large, spreads from temporal lobe to occipital area and a tad beyond. I had 30 radiation treatments, then 6 rounds of chemo - PCV.

The treatment has helped - it was, as of the MRI last week, stable. The long term impact leaves me disabled but I'm relearning skills I forgot, cooking, writing and much more. I am very grateful that this is slow growing and that the treatment seems to have helped.

I'll be here if there is anything I can do.

dannywf
Posts: 2
Joined: Mar 2010

I am on 3 types of chemo and maybe radiation soon. Were you really sick or just some times. I just finished my 3rd round and my body hurts, no energy and lately always sick to my stomach. Is this going to get worse?
I found this out 2 weeks after I had a baby girl. So as you know it is taking so much out of me. Nothing seems to make me feel better.

dmsmyself
Posts: 1
Joined: Apr 2010

I was diagnosed the same and had surgery two day later after a seizure 2-16-2010.Just getting a clear head a doing research. Would like to have any info you would like to share.

LarissaM
Posts: 1
Joined: Jan 2012

Dannywf,

I was diagnosed with oligo in 2003, had a surgery, took chemo for 12 months and , I do not know why, was never offered any radiation treatment. I am doing all right now and would like to say something.
In several years after my surgery I met a neurologist ( one of the best I have ever met ) who said it was very good I had not had any radiation because
in long run she always can see some damage done to the brain in those patients who had radiation.
if you can do without radiation- think about it.

a.s.
Posts: 3
Joined: May 2010

hi betsy seems like your condition is very similar to my husband, did u have surgury too or just radiation and chemo?????do u have any partial seizures?

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

A.S. i have AA3. i had open brain biopsy, radiation and temodar (chemo Pill) dec 21, 2010 to feb 3 2011 restated pill mar3, 2011 then started chemo Iv on aug 1, 2011. I also take keppra cause i have partial seizures. i am very forgetful and have a lot of short term memory loss.

balloon
Posts: 1
Joined: Oct 2013

hi there,

sorry to hear about this...my granny also got detected with this and has already undergone radiation and chemo (temodar). her tumour is in the right side of her brain and that has affected her left side body...she's not able to move herself...we are not sure whether post radiation and chemo, there is significant amount of weakness to the extent that the patient is not able to lift herself...? if yes, how long does this painful period last...and how quickly does the recovery take place post radiation and chemo....even if temporary? any experiences to share about post-radiation and chemo period?

 

thanks a lot...to everyoneo on this platform for sharing their experiences....it helps a lot.

mccindy
Posts: 82
Joined: Jun 2013

it depends on whether the weakness is from the tumor, or the treatment, or swelling.  Sometimes steroids can help if it's from swelling.  If it's from the tumor, it may improve if the tumor responds to the treatment.  If it's from the radiation, it's likely permanent, as radiation can be damaging to healthy brain cells as well as tumor cells.  Every patient is different and it's very difficult to say how long it will take to recover if the effect is temporary.

dannywf
Posts: 2
Joined: Mar 2010

just wanted to know if you ever learned anything from anyone?

nikkipernell
Posts: 3
Joined: Jun 2009

Hi, my name is Nikki Pernell. I was diagnosed with grade II Oligodendroglioma 4 years ago. I have had 2 surgeries and radiation. Do not give up hope with this one. The life expectation is how you look at it. I know that it a very rare tumor, and has 4 stages. I have learned many ways to deal with what to expect. Don't look back only look forward. Mine is in my speech and had a 90% resection for my tumor. I had to learn many things over, but I take it as it goes. I hope that is information is helping you. Don't feel like you are in this alone. You can always talk to anyone. Take care and hope to hear from you soon.

single3rd's picture
single3rd
Posts: 18
Joined: May 2010

I do not intend to cite vast chunks of Internet research, merely personal experiences, BUT

My first oligo (grade II/III) was diagnosed in Nov. 1998, followed by 30 daily radiation treatments. In Aug. 2007, I was diagnosed with a recurrence (same grade), followed by immediate recision (approx 95%), and 5/23 Temodar chemotherapy (360mg). Last month
(April 2010) I was diagnosed with a second recurrence (same grade). I have just started PCV chemotherapy, as recision of the new tumor has been ruled out.

Prior to the 2007 recision, my neurosurgeon did advise me that there was a strong likelihood of one or more recurrences of the tumor, despite followup treatments. Obviously, he was correct!

lauraatvalley
Posts: 2
Joined: Jul 2010

This is my first time responding, but I wanted everyone to know that I had a grade II oligo removed in January of 2003 with no follow-up radiation or chemo. It was located in my right temporal lobe and the the surgeon told my family he "got everything he could see." At he 5 year mark the MRI showed some contrast enhancement (something we had never seen before even before the resection)but they think that is more than likely scar tissue. I just passed the 7 year mark and no changes:) I have my annual MRI tomorrow morning and I am sure all will be fine. Although I am very nervous and have spent the last week scouring the web looking for recurrence rates (something I tend to do every year) I am remaining positive (well, kind of, I tend to get more nervous as the years go on since I've heard they can come back.) Not knowing if or when it might return is the scary part, but I have tried very hard to convince myself that I will never see it again:) It is nice to read your stories and know I am not alone:)

Mamike
Posts: 3
Joined: Jun 2011

Hi, I also had an Olio removed this past June, June 27th actually. I was told that they got got all of it out but the oncologost reccomended 6 weeks radiation followed by chemo. I have been in contact with Duke University, Dr. Friedman. He has all my records and he is reccomending doing nothing more now than just watching and monitoring this thing with MRIs every two-three months. I'm going down to see him at the end of August for a two day work up. I am so confused about what the right thing to do. Any advice?

lauraatvalley
Posts: 2
Joined: Jul 2010

I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.

Misty01
Posts: 1
Joined: Jul 2010

This is my first post, and to be honest I'm not sure what to say. You got through it once before and after you sit down and take a few deep breaths, you will find the inner strength to face this challenge head on again.
I was diagnosed in April '10 with a grade II oligo after suffering an unexpected seizure. My MRI showed a 5x5 cm tumour in my Parietal lobe. I had a partial resection in early May. Unfortunately 4 weeks ago I suffered 28 grand mal seizures in 24 hrs. After a further MRI, it shows there is still 50% of the original tumour in my brain. I am scheduled to see my surgical team next week to discuss further surgical options such as a repeat proceedure, or whether to be awake this time as the remaining tumour is so close to my sensory and motor control centre. I was hoping someone may have had their surgery while awake and could let me know what I would be in for...good or bad. Only way to know is to ask someone who has experienced it.
I do have the 1p-19q deletion, and the idea of chemo/radium has been discussed, but I am getting conflicting advice from the oncolgist/radium therapist about whether or not to have the treatment. I am so confused and feel overwhelmed, I felt I needed to seek help and advice from those who understand exactly where I am coming from. Any replies would be most welcome.
My thoughts and prayers are with all who are battling their own "Terry the tumour"

Kanoki
Posts: 1
Joined: Aug 2010

This is my first post as well so I will give you a little background first. I was diagnosed in September of 2003 with a grade II mixed Oligodendroglioma. I was given the option of doing nothing and taking a wait and see approach or being more aggressive and attempting to remove as much as possible with surgery. I chose the surgery option and they were able to remove about 2/3 of the tumor from my left frontal lobe. While I was on the table the surgeon spoke to my family and told them he could try to get the rest but he would have to remove so much good brain tissue that damage was likely and there was a large risk of me coming out of the surgery a different person. Fortunately my family made the right decision and decided against any further removal. I started Temodar in December of 2003 and continued that until February of 2006 with a lapse due to the onset of some severe side effects that required stopping treatment for about 4-5 months.

My doctors were going to do radiation therapy but at the last moment it was decided to hold off. My oncologist has been consulting with M.D. Anderson in Texas since my diagnosis and they actually recommended holding off on radiation due to the long term side effects in someone my age ( I was 34 at time of diagnosis)and the fact that radiation results apparently are a mixed bag when it comes to Oligo's.

I give you all that to say I am still well and the tumor remains stable. I am down to having MRI's every 6 months and it appears there has been no progression of the tumor at all after 7 years. I am so thankful that in my case we decided not to go with the radiation treatment. Like you, I do have the 1p-19q deletion and from what I am told that is a great prognostic factor and means the tumor will normally have a much greater response to chemo treatment.

I wish I could tell you the tumor was gone but unfortunately it is still there, just not doing anything. I have never had a seizure but in your case it sounds like you don't have much of a choice, 28 Gran Mals is obviously not something that can go unchecked. My best recommendation would be to talk at lenght to your doctor's and find out the pro and cons of the different available treatments and what your individual risk factors are. There is an awful lot of information out there on the web and a lot of it is conflicting and most of it can scare you to death. Take it with a grain of salt but keep looking as your best defense right now is arming yourself with information so that you know the questions to ask your doctors.

stephaniejo
Posts: 1
Joined: Aug 2010

Hi everyone
This is my first post so a little about whats goin on... I was diagnosed in March 2010 with Oligodendroglioma. I had no seizures or symptoms of anything being wrong. I had had an extremely bad headache one time on vacation in February that lead me to call my doctor because I never had a headache like that before. She suggested an MRI and luckily we caught it because without that MRI I would have never known anything was wrong. I had my surgery in April and had a surprisingly easy recovery. I am currently on Temodar 5 days on 23 off. Which again for the circumstances I feel lucky. The pills are convenient and easy to take and I dont have to go to the hospital at all. I have bloodwork done once a month and MRIs right now, every 3 months. For the most part I feel good day to day. Still a few things getting used to though even though its been a few months. Its just now becoming a little easier to have late nights like I used to and Im feeling ok now about going on trips. I have a few questions for everyone though.... Has anyone flown since theyve had surgery? I am to be going away with my boyfriend in about a week and despite the doctors saying everything will be/is fine, Im still nervous! Any input would be great! Also, from time to time I have anywhere from a day to a week of not feeling quite right. Such as being dizzy or just overly tired. Does anyone else feel like that? The tiredness doesnt bother me so much as the dizziness because sometimes I cant drive or go to work because of it. Any feedback?

j_waffles
Posts: 22
Joined: Jun 2010

I've flown a few times after surgery, but before I started Temodar, so I can't say much on how chemo affects travel or nausea. I can assure you though that the titanium plate in my skull doesn't show up on metal detectors at the airport. You'll be just fine! :)

PS- I was also lucky to have found my tumor. No symptoms except for a weird noise in my ear.... weird, huh?

firemanswifeofdb
Posts: 1
Joined: Aug 2010

I was diagnosed at the end of July with oligodendroglioma (stage 3) and I am so scared.. I read you post and it helped a bit.. I am 30 with 3 kids and worried to death.. I have not started the treatments yet. In the process of working up a plan of action. I will be starting radiation next week... After that I believe the plan is to start the Temador. Not 100% sure yet.. Unlike your case, I had a siezure and that is what sent me to the hospital. They thought that it was only high blood sugar (never had a problem with that before) but my husband and mom kept on them because I was complaining how bad my head hurt. I guess the whole fear of not knowing is what scares me the most. I look at the statistics and it does not look good. I am a fighter, but sometimes I wonder if I am strong enough for even this. I guess I am on here just looking for someone who knows emotionally what this is like..

Drlock
Posts: 1
Joined: Sep 2010

My 17 year old son is a 1 year cancer survivor who was diagonised 7/29/09, Grade III astrocytoma/oligodendroglioma mix
He underwent surgery with 95% removal, 33 treaments of radiation, and 30 weeks of IV chemo.

He had his port removed June 2010 and is living a normal teenage life and back to playing football. He is amazing and we are inspired everyday by him. He has a tatoo that reads
Live for today, fight for tomorrow, LIVESTRONG. Emotionally it is hard not knowing but you really have to stay strong, beleive you can beat it and live everyday to the fullest.
My son now says statistics should not be on people, the variables change too much.
It's 50 % medicine and 50 % your mind. He has never once cried or complained about having cancer, so we as his family have to stay strong.
Surround yourself with strong family and friends. Let people help who offer, no one needs to go this alone. It helps others to be able to help you. I wish you peace and comfort in your treatment. The worst for my son was his throat was very raw from radiation.
You can do this, show your precious kids how strong mommy can be. Good Luck!

FIGHT FOR LIFE
Posts: 3
Joined: Sep 2011

My husband was diagnosed in 1997 with oligodengroglioma grade 2 after having a seziure.
He had surgery in 1997 and they did not get it all so he had surgery again in 2000.
After the surgery in 2000 it came back anaplastic oligodendroglioma grade 3. We then
were referred to UAB Hospital in Birmingham Alabama. They told him 3/5 years survival.
We decided to go thur a clinical trial. They harvested his stem cells and froze them. He
then went thru PCV chemo for about 6 months and they put him in the hospital for the bone marrow transplant. They bottomed out his immune system. He was in isolation for about 6 weeks and they unfroze the stem cells that they had harvested previously and injected them back in his boby. Day by day he began to feel better. He did wonderful. In 2005 we went for MRI and the tumor had returned. They did surgery again and removed all that they could but it is impossible to remove the infilirating fingers. He then went on Temodar for 12 cycles and he did very well with the temodar. 2009 tumor returned. He went on Temodar again on the 21 day regimen 75 mg. He did really well. But tumor began to grow again in 2010 and he went thru radation therapy along with the Temodar. Went back August 2011 and MRI showed some changes. Tumor not any bigger but change in how it looked. Today 9/9/11 we started our first round of Avastin a blood starvin therapy. I know he is going to do great because He knows his healer Jesus Christ our Lord and Savior. Noboby can tell you how long you will survive. They told him 3/5 years and he is now going on 14 years. He does get weak and his memory is not that great but he does know that all he has been thru Jesus has been right by his and my side. I hope this will encourage you to not believe everything
you read and are told. I am looking forward to a long life with my husband and having many
wonderful times. What I want you to know is God is the mighty healer and only thru him is everything possible. You will be in my prayers! God bless!

sadinholland
Posts: 236
Joined: Apr 2011

They keep telling my husband the same thing, 3-5 years as well. He is doing so well. I am so scared though. I have a strong faith and I believe in God. I am human though and sometimes get veru upset as time goes by. I have mixed emotions. Happy that a year has past, then scared that it's closer to something happening again. I am going to keep praying for him and everyone else fighting this battle! God Bless!

tamlyn54
Posts: 5
Joined: Aug 2011

Thanks for posting your information. My husband first diagnoses in 2003 olio 2 surgery with radiation. Second round of surgery last year 2010 and it came back as anaplastic olio 3. He has taken the temodar and so far tolerated well. He is off of it right now. I see that you guys used UAB hospital in Birmingham, AL. How do you like the doctors and hospital? The reason I ask is we are originally from that area and are looking to move back soon and will need a local neuro-oncologist. Right now we are with MD Anderson/Houston.
God Bless you and yours.

FIGHT FOR LIFE
Posts: 3
Joined: Sep 2011

Tamlyn54,
My husband has been seeing Dr. Nabors a neuro-oncologist at the Kirkland Clinic in Birmingham. I have the up most respect for this doctor. He loves me and my husband and really cares about finding the right treatments for my husband. He is a wonderful doctor and I would recommend him to anyone. Our Lord and Savior and Dr. Nabors has kept my husband alive for all these years. My thoughts are always on my husband and this tumor.
We live in Decatur, Alabama which is about an hour and a 1/2 drive to Birmingham and the whole time I am driving my husband down there I am praying to God that his MRI is stable
and that I am thankful for all God has done for us. This last MRI showed change and Dr. Nabors put my husband on Avastin. On the way home I thanked God again for all he has done for us even though it wasn't what I wanted to hear. I get so scared and sometimes forget what I am doing because the fear just overwhelms me. Then I have to go back and remember that God is in control and I just need to put my faith in him and let God carry it for me.
But sometimes I take it back and here comes the fear again. Sorry to go on and on but my husband 3rd Avastin treatment is tomorrow and I am in tears right now because I love him with all my heart and I hate what this tumor does to him. Dr. Nabors #205-934-1432. The hospital is wonderful as well. We were there 4 months when my husband got a bone flap infection. We went to the Spain Rehab where he had to learn to crawl,walk,talk,feed his self everything just like a new born baby. They were wonderful people and they took care of all his needs. When we left they had taught him everything and you would have never know that he had been thru all that. You and your husband will be in my prayers daily and if I can help you in any way let me know and I will give you my telephone # or e-mail address. May God bless! Pam

tamlyn54
Posts: 5
Joined: Aug 2011

Thanks so much for the phone number. He is the doctor I have been reading about. We go to MD Anderson in Dec and I will get our Doctor there to make the recommendation. We move back to Bama in January so we will need to have all that set up. I truly understand how you feel. We have gone through so many changes with this last surgery and I hold my breath everytime we have a MRI. I have to also renew my mind and allow the Lord to take the driver seat in this thing and know that He is directing our path. My email is tamalyn54@aol.com. If you can drop me a line would like to hear from you.

God Bless You.

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

I had to write because your situation sounded so much like my 24 yr old son's case. He is an athlete and he was just never sick. On vacation in April 2009, he got a horrible migraine that would not go away. Dr dinked around, giving him painkillers, blood pressure medicine etc. (0ur oncologist was very critical of gp drs treatment, btw). Finally after 3 weeks, my son developed double vision and his gp finally authorized an MRI. We were terrified beyond description when we saw the MRI. He had a huge mass in his head, actually pushing his brain's midline to the side. No wonder he had such a bad migraine. So we were immediately referred to a wonderful neurosurgeon who made time in his schedule to do brain surgery on David the day after we found out about the tumor. The tumor itself, while pretty big, was only a part of the mass. It was encapsulated in a cyst, which I guess is common. It was diagnosed as an anaplastic oligodendroglioma. (Grade III) The surgeon got 100% of the tumor out, with absolutely no deficits in David. I thank God every night for that. The pathology showed that David did not have the gene deletion, which our oncologist told us is not good at all. But....God is bigger than all the doctors. I am so happy to be able to tell you that after brain surgery, 6 weeks of chemo and radiation, and now Temodar 5 days every month...David is doing wonderfully well. He gets better each day. When we go in for our 3 month MRIs, his oncologist says that his MRIs look better and better. The scar area in his brain is continuing to heal. It sure hasn't been a walk in the park, butI would like you to know that things can continue to improve. You have better days ahead! I didn't think we would ever get to where we are today....
Tomorrow is one of David's 3 month MRI/oncologist appts. I wish I could say that they get easier, but they do not. I have to pray for peace and strength before every visit. They terrify me. I hope and pray that I can get on this network tomorrow and say that his MRI is clear....
My son says that he does not believe that he is going to die any time soon and he refuses to live like he is going to die. He considers the 3 month appts as "checkups." He's an amazing man and I am so very proud of him. I believe that a large part of the reason he is doing so well is because of his strong, positive, fighting mental attitude. You are positive about your recovery---good for you! Hang on to that.
I hope that David's story encourages you even a little bit. I figured you went on that flight, but I did want to mention that David has flown a few times since his surgery and while he was on Temodar, and he had absolutely no problems. I hope that you had a great trip with your boyfriend! :)
Love, blessings, peace, and healing to you,
Cindy in Salem, OR

banana0424
Posts: 1
Joined: Aug 2011

I am looking for some answers for my 19 year old son. I see that you are 7 years out on your sugery, and I was wondering if you know anything about what has been going on with him. He had his 50 cent piece size tumor removed about a year and a half ago. No radiation or chemo afterwards. He seemed to be doing very well but a couple of months ago admitted to me that every once in awhile his hand and arm would sort of "sieze up" on him, along with one side of his face. I asked him how long and how often, and he said it seemed to be only when he had a shot of adrenaline-my boy is fearless, and has always been the best athelete, etc. But he said it happened when he got excited. Then this morning, he was actually brought home by the police after staying the night at a friends because he was "out of sorts". They thought he was trying to break into someone's car or house, but once I talked with him ,I realized that he was not himself. I actually thought that he was on drugs or something and took him to the hospital. I had him tested and I told them his history with the brain tumor. They did a cat scan, and could see he'd had surgery. The tumor is not coming back, and the drug test was clean. We're not sure what caused him to lose what we can figure was about 8 hours. He can't remember anything from that time period. It is very strange. Has anyone else experienced this sort of thing after a tumor removal? He has a followup and MRI scheduled for the 24th, but I am very worried about him in the meantime. Any info would be helpful! Thanks!

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

Hello, Laura.

I have been very sporadic about checking this site. I am wondering how you are doing since this last post. I hope that things have improved and you are doing good.

I don't know if this helps or not--I hope it does. I've read that 90%+ of cancer survivors have a recurrence at some point. They battle through it and go on. No one wants a recurrence but it doesn't mean the end...it means a different weapon and a different direction to attack from.

I hope you are strong and are fighting hard. My thoughts and prayers are with you. Please post and let me (us) know how you are doing.

Love and blessings,
Cindy

CatherineSch.
Posts: 14
Joined: Oct 2011

Hang in there Laura. My son's tumor was in the Lfrontal lobe, and he had resection in 2006, now to repeat beginning of December. "Debulking" surgery, they call it, and he was ok for 5 years as well. He's scared of everything related to his quality of life, Job, health, and continued progression of this "ALIEN". THey plan to radiate several weeks after surg, when they can safely. He has some processing problems, but nothing anyone who didn't know would be able to discern readily, and this has been since first surg.
Stay positive, as best you can, under the stress, and use this network, as we're all in the same boat, in one capacity or another. Oh, he is 36 years old, and original tumor was the size of a lemon. Dr. said he got as close to motor cortex at the time, as he possibly could, and said the "fingerings" of this type of tumor will continue.
You're in my thoughts and prayers.
Catherine

Fiona and Brad
Posts: 8
Joined: Oct 2011

Dear Laura, I just joined the Cancer survivor network and was reading through the posts and yours stood out to me as you never posted again after posting you had found another tumour. My son was dx at age 8 (4 years ago) with an Oligo grade II and he going soon for his 4yrs MRI check up. He too had no Radiation or chemo like yourself and just had a resection performed and was told they thought they got it all. I know from the amount of research I've done that that means nothing and that this ugly tumour will rear it's head again some time and I live in dread of that day hoping that every MRI will not be "the one". I understand where you must have been coming from when you posted your last blog and was just wondering how things are going for you at the moment. All good I hope ( well as good as it gets with BT patients). Please drop me a line if you feel up to it as I'd love to give you some support or just someone to talk to who knows the walk. Kind Regards Fiona

kathiempita
Posts: 3
Joined: Nov 2011

My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.

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