Oligodendroglioma Grade ii

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RE: Oligodendroglioma Grade ii

by vwxyz on Sun Aug 07, 2011 10:06 PM

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Heather, I am in the same boat as you as far as never can do anything right at times.  It is the medication and mental and physical stress of this lifestyle change for your loved one.  It is quite an adjustment for both of you. My son is a step higher than Grade 2 Oligodendroglioma. He is Anaplastic Oligodendroglioma, grade 3 in the cerebellum.  (80% dx.Feb ., 26, 2010 @ Boston Beth Isreal Deaconess,MA., last radiation treatment on July 1, 2011, Temodar(chemo pills) 5/28 days/month til now)@ Boston Mass General Hospital.  This tumor in that part of the brain creates balence, weakness on dx side of body, cognative, short term memory issues that is more pronounced when being radiated and especially on Temodar chemo for 5/28 days/ month.   It has been a frustrating road for my son. We are thankful he finished his college courses before the dx and was able to walk on the stage to receive his college diploma.  It caught him/us off guard without any insurance other than college campus ins. because we were thinking he would be getting a great job with complete coverage after he graduated. He is now on disability.  I have heard on this message board that Aflac and AAA has excellent life and medical insurance.  There are people living much longer than what the Drs feel comfortable admitting and able to work, etc.  Grade 2 Oligodendroglioma("where it is just as much a threat as all other c cells") is still considered a lower grade.  I am glad to hear the Docs found it at an earlier stage, dx'd 100%,  and they can keep a strong eye on it for the future of you both. Every hospital deals with tumors differently. Temodar seems to be THE drug. My son has one deletion, which means he has 50/50 chance the Temodar will be most effective fighting this. Does your loved one have the 2 deletions?  If so, he has a more fighting chance at being more chemo sensative.  If I can remember, correct me if I am wrong, it is 1P and 19Q deletions.  Or the other way around.  Keeping the both of you in prayer, Jan   

RE: Oligodendroglioma II

by ezzojc on Fri Jan 20, 2012 08:10 PM

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On Jul 23, 2009 12:00 AM claudhoff wrote:

 

On 6/4/2009 linekelei wrote:

Hello all-

I posted above about my husband having a craniotomy for a grade II oligo back in March 2009.  He has his first MRI check-up today, which we are anxiously awaiting. 

 The pathology report came back in March as grade II, significant calcification, and deletion of the two chromosomes (thank goodness for that).  Dr. Liau (UCLA) recommended surgery only, since the resection was considered 100%.  We are hoping for a good MRI outcome today.  As for side effects, my husband is back to feeling quite normal.  He returned to work after 5 weeks (he's an attorney), and while the first week was tiring, he was back to feeling like himself within an additional week.  His short-term memory was a little weird at first, but he now has no memory problems at all.  He's physically active and runs/exercises 5-6 days a week.  

For anyone who's interested, you might want to read the Anti-Cancer Cure, a book written by a doctor who had a grade III brain tumor (think it was an astrocytoma), who has done extensive research on diet and environmental factors and how they relate to cancer.  The book has led to my husband completely changing his diet, taking up meditation, and eliminating as many environmental toxins from his life as possible.  We hope that this will help prevent a reoccurrence of the tumor in the future, or at the very least, make any recoccurrence less severe.

  


Who is the author of this book, would love to get it but having trouble finding it. Thanks

I was diagnosed with an Oligo. II in Aug of 2009.  Had 2 surgeries and opted to take Apricot seeds and extracts.  Have had clear MRI's since with some short term memory loss recently.  I'm 31 with a wife and 3 year old son.  Dr. Liau at UCLA performed my resection (gross).  Looks like I have scar tissue build up.  Surgery made me weak on the left side.  I woke up from my surgery with no feeling on the left side of my body from the chin down.  Had to live at a rehab facility to re-learn everything.  I'm so nervous that my family will have to watch me die slowly; especially my young son, but I feel I have to do something different, hence the seeds.  I'm always available to talk.

RE: Oligodendroglioma Grade ii

by jew8mend on Tue Jan 24, 2012 02:23 AM

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On Aug 07, 2011 10:06 PM vwxyz wrote:

Heather, I am in the same boat as you as far as never can do anything right at times.  It is the medication and mental and physical stress of this lifestyle change for your loved one.  It is quite an adjustment for both of you. My son is a step higher than Grade 2 Oligodendroglioma. He is Anaplastic Oligodendroglioma, grade 3 in the cerebellum.  (80% dx.Feb "" target="_blank" rel="nofollow">http://dx.Feb " target="_blank" rel="nofollow">dx.Feb ., 26, 2010 @ Boston Beth Isreal Deaconess,MA., last radiation treatment on July 1, 2011, Temodar(chemo pills) 5/28 days/month til now)@ Boston Mass General Hospital.  This tumor in that part of the brain creates balence, weakness on dx side of body, cognative, short term memory issues that is more pronounced when being radiated and especially on Temodar chemo for 5/28 days/ month.   It has been a frustrating road for my son. We are thankful he finished his college courses before the dx and was able to walk on the stage to receive his college diploma.  It caught him/us off guard without any insurance other than college campus ins. because we were thinking he would be getting a great job with complete coverage after he graduated. He is now on disability.  I have heard on this message board that Aflac and AAA has excellent life and medical insurance.  There are people living much longer than what the Drs feel comfortable admitting and able to work, etc.  Grade 2 Oligodendroglioma("where it is just as much a threat as all other c cells") is still considered a lower grade.  I am glad to hear the Docs found it at an earlier stage, dx'd 100%,  and they can keep a strong eye on it for the future of you both. Every hospital deals with tumors differently. Temodar seems to be THE drug. My son has one deletion, which means he has 50/50 chance the Temodar will be most effective fighting this. Does your loved one have the 2 deletions?  If so, he has a more fighting chance at being more chemo sensative.  If I can remember, correct me if I am wrong, it is 1P and 19Q deletions.  Or the other way around.  Keeping the both of you in prayer, Jan   

I have the 1p 19q deletion and the Temodar holds my tumor at bay.  But it dont make me feel very well.  My stomach gets all tied up in knots and im very tired when I take it.  I have been on and off of it for the last few years and now Im back on it.  My tumor started to grow again :(  I know I will survive this!!  That is the only option I have.  

I am curious how your son is doing? I hope the Temodar is working for him. 

Lynn

RE: Oligodendroglioma Grade ii

by liana432 on Wed May 02, 2012 12:18 AM

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Hi everyone,  I am so glad I went online and entered oligodendrolglioma who ii looking for some answers.  I had my left temporal lobe removed on March 13, 2007.  Everything happened very fast.  I had major headaches and dizziness, told my PCP who said I was stressed for handling so many things, work, staff, husband and kids.  One day in between a meeting I was holding I switched from English to Spanish.  My assistant tapped my arm...I couldnt believe it.  Saw a neurologist  and was told it was nothing and the mri taken showed a small cyst that was prob there all my life.  January 17th on my way home to NJ from a road trip I had a grand mall seizure in PA.  That was January...March I had surgery. 

So far I've had a good MRI every year but I was told it could reoccur since I am still so young, 32.  Just like many of you, I have memory problems, I have to write things down so I don't forget, my cognitive skills have def been impacted, my left eye twitches constantly but noone can see it, but of course I can feel it. 

I haven't found a good neurologist.  My neurosurgeon was excellent, but he was in NY.  I need someone in South Jersey or Philly that can tell me what to do or what to take if anything to get better.  So far everyone Ive met just sends me for an MRI, say Im fine and say I should be on seizure meds which I refuse to take since I've had no seizures since the tumor was removed.

I ask myself everyday...will i be getting worst??? 

RE: Oligodendroglioma Grade ii

by Brian_M_4 on Wed May 02, 2012 02:08 AM

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I had my operation in June 2004 and have been fine since. To me, I have one of the best neuro oncologist available. Her name is Dr. Susan Weaver. I realize its a trip for you, but it would be very worthwhile for you to take a ride up here (The Albany, NY Medical Center) for an appointment. She speaks to you directly and will answer any/all questions. Ask her if she has any suggestions as far as a neurologist/neuro oncologist in your area.

Good Luck!!

RE: Oligodendroglioma Grade ii

by liana432 on Wed May 02, 2012 02:01 PM

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Thanks Brian, I will def contact her! Its hard to find a neurologist that has dealt with patients like us.

RE: Oligodendroglioma

by Ilovemasonandli on Fri Oct 09, 2015 12:26 AM

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I'm was 36 and had brain surgey in Oct of last year grade 2 at umpc in Pittsburgh PA I also have been on tremador. I have horrible headace all the time I work on a oil rig 14 12hr shift.my hard hat is putting toms of press on my heads.was on disability for a yr went to back to work one day and was back in the ER with a horrible horrible headache. They could only get 80% of it other 20% they said was to close to motor skills can be one tell me y the headache r so bad PLEAEE help????

RE: Ogliodendroglioma Grade 3

by JaneJane on Fri Oct 16, 2015 10:13 PM

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Hi, My husband was diagnosed with Oligo grade 2 in January. Had few seizures, MRI shows that no operation can be done, because of location of the tumour. Back then it's was 3,8cm. Two biopsies done, with 1p19q (which is good I guess). We refused chemo and radiotherapy, my husband thinks it's gona be the end. We tried alternative treatment in Moscow for 7 month. Didn't help, tumour progressing, it's 4,7cm now. He is on few other alternative treatments at the moment, such as homeopathic, THC, turmeric, Boswellia and ect, and anti epileptic drugs (Keppra 2000, Epilim 600). But it's seems to be not working, couse he had seizure few days ago (probably tumour progressing again ). Had MRI scan today, we'll get answers after 4 days, when will meet chemotherapist. Then probably will start radio and chemo, because have no time anymore to try alternative treatment. Feels like our world is crashing. I'm crying every day, but wont stop believing that we will get read of it .. We have two little kids, 3 and 7 years old, and we will do everything to leave!! Jane

RE: Oligodendroglioma Grade ii

by cazwinn on Wed Oct 28, 2015 10:26 PM

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On Jul 04, 2005 12:00 AM Dilton2__Heather wrote:

Hi, I'm Heather, and I belong to a 37 year old firefighter diagnosed in March with a Grade II Oligodendroglioma. We would like to hear from anyone with a similar diagnosis, as there is very little information available on the internet regarding this type of tumor. Also, any survivor stories would be great. He presented with seizures on Feb 27 and March 7th of 05. Met with the neurosurgeon on March 17th, and had a total resect on April 12th at Barnes Jewish Hospital in St. Louis (very positive experience). Began Temodar in June. Side effects from the surgery are some difficulty finding the correct word, difficulty with names and short term memory loss (the biggest hurdle). Side effects of the diagnosis....of course anger and some depression. Any help in coping with so much in such a short time, and any caregiving tips for me (I seem to step on my own toes alot....too much or too little....never just right) would be greatly appreciated. Thanks Heather

Hi Heather I was diagnosed last year with a grade II oligodendroglioma after having a number of seizures.  I had surgery in September and a week later had an MRI scan.  Then I had another MRI scan in March this year.  I live in NZ and am a singer.  I went on tour with the Pink Floyd experience so I didnt see my oncologist til aug 31st.  He told me I had a suspicious mass growing from the leftover tumor on the left travelling to the right of my brain and explained that I need radiotherapy.  Of course I was shocked but decided against radiation and chemotherapy.  However I just had a seizure last saturday so the Radiotherapist wants me to get an MRI this week.  Just to go back to when I first came out of hospital...i had lots of family support.  I struggled to speak, to write, to stop shaking, to sing but i was determined with the help of a speech therapist and occupationaltherapist they helped in getting me back to doing things independantly.  I can honestly say in some areas like multitasking, decision making, short term memory i'm still struggling.  I havent had any treatment and want to do it naturally however because I had a seizure last Saturday and the radiologist knows about it they want me to have an MRI asap.  when the oncologist dealt me the news on aug 31st i decided to go on the internet.  I found out that cancer loves sugar and decided to stop all sugar as well as processed food.  I began a ketogenic diet then I met Shari on here who had the same tumor as I did and she said she did chemo and radiation then her tumor returned after a couple of years so she tried this all plant based diet and gave me what info she had because she wished she hadn't agreed to the radiation and chemo and I had written saying I didn't want to either.  I have 7 children ranging from 28 - 9 yrs old.  5 of them are living with me so I know the risks are high and are reliant upon my choices.  I attend church and most of all love God and trust him.  Shari gave me her supplements  which I was blessed to get but only because I had this seizure last week so now I've been taking my supplements which cost $650 I know they are working.  I took 1 anti seizure tablet when i had the seizure and felt so ill that I prayed to God to bless me that I would not have another seizure and stopped taking that pill too.  I'm sharing my experience with you in the hope that you will not give up with your husband.  Just be patient, i suffered from aphasia which is knowing what you want to say but not being able to process those words...be patient...loving and when the going gets tough, if u can take a break and let someone else fill in for a while.  Through out my search on the internet I found through Shari a site called chisbeatcancer he has lots of info...i also found Ty and Charlene Bollinger on their global quest on The truth about cancer.  They have lots of alternative treatments but thats if you are wanting to take that route.  I personally want to do it.  May God be with you in your journey or whoever that higher power is for you, I will certainly pray for you as Charlene Bollinger offered to me and thanks for letting me tell my story I hope it helps you...

Wini Baxter

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