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Oligodendraglioma

mikee1
Posts: 1
Joined: Jul 2012

HI,
I have an Oligodendraglioma grade 2 on my left temporal lobe. I have been told that they will never been able to operate and also for the moment they wont use any treatment as the doctors want to use the wait and see treatment. Has anyone been through the same thing?

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Mikee1

Find another medical facility-run do not walk! I have the same Grade 2/3 Oli- left frontal lobe,
diagnoised September 26, 2011. Surgery removed 99% of my tumor, no side effects from this surgery.
Started 6 weeks Chemo (Temodar) along with 6 weeks Radiation. This type tumor has fingers, which
eventually could cross over to the otherside of your brain. My treating facilities are Roger Maris Cancer Center- Fargo, ND, Mayo-Rochester, MN and John Hopkins- Baltimore, MD. Neuro was flown into
do the surgery, biopsy was done at all three, with John Hopkins Diagnoising and doing Molecular Genetic Testing- I have 1P19Q deletions, which enhances chemo in killing cancer cells. These facilities have seen people 18-30 years out. When finished with 6 week treatment plan, I am
now doing 5 days of Temodar every 28 days for 6 months.. Only medication I am on is during my 5 day treatment plan, was on Keppra after surgery as a precaution (siezures), but never had a siezure, so was removed of drug in April. July will be my last month of Chemo. MRI scheduled 13th. All MRI's are clean, but were also, clean right out of surgery.
Fight this, go to a treating facility that has seen your type of cancer, and has the skilled
Neuro-surgeon. Find someone you are comfortable with and will answer all your questions. Wait an see is watching the tumor grow, then its more complications, problems and harder to treat- you find people on here that have gone the wait and see - they are really struggling!

Sorry you have been diagnoised with OLI 2, but don't let it get you down- stay positive. I am back working, hanging with friends and enjoying life.

Benjamin( 28 years old )

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

Hi,

My boyfriend was diagnosed with grade 2 Oligodendroglioma last August. They did operate on him, but they were only able to remove a portion. His is also on the left side but in the parietal lobe. His looked much like a large tadpole. The large part was removed, but the smaller portion stemmed to the middle of his brain, what his doctors called the “main highway” and slightly into the right side .. a place they will never be able to operate. He as well has not undergone any other treatment. Because it is very slow growing, they do not want to put him through any type of radiation if they do not have to. He did not have the favorable gene deletions we had hoped for when genetic testing came back either.

Since surgery he has been great! No more headaches (this is how we found it!) back to work, living life to the fullest. He had no side effects from surgery, the only way you would know he even had surgery is by the scar on the back of his head. He has had two MRI’s since surgery, both showing now growth, they have now pushed the MRI’s to six months apart from three.

Our thoughts and prayers are with you! Should you have any questions or just need to talk, we are here! Everyone on this discussion board is so helpful and supportive.

Ashley

EnglishMummy
Posts: 1
Joined: May 2013

Hi there,

 

My first post....My 6yr old is 4 weeks post op for removal of a tumour in the Left Temporal Lobe.  She has suffered epilepsy since the age of 2 so a lesion was detected by and MRI then but they thought it was DNET.  Her epliepsy got under control with meds after about 6 weeks and she was seizure free but because we moved country, we were in Switzerland when she was born and first diagnosed, but are British and came back to the UK, we needed to register her with a neurologist so we could continue getting the epi meds prescribed....anyway, at the Liverpool Childrens Hospital, called Alder Hey, the neurologist is exceptional!!! he insisted on re doing MRI and EEG with her and to conduct interval MRIs just in case......so even though she showed no symptoms at all we caught a change in her last interval scan. The lesion/tumour had grown from approx 4 by 2 cm to 4.8 by 2.8 cm and had a dark patch in the centre.  Was all white before and they thought it was just calcified.  So we booked her in for the craniotomoy and they told us they removed 100%. This hospital uses and inter-operative MRI suite, that means they did 2 MRIs while she was under and they could keep taking a bit more out in the one surgery. 

2 weeks post op they told us it was benign, I admit a stopped listening properly at that point and it was only a few days later at home that i needed to write on a form what she had so I googled to check the spelling and realised about the prognosis.  I did not sleep all weekend as it was a Friday night and I needed to wait to call her neurosurgeon on Monday :-( I found out that she thinks her prognosis is 'very good' because of the age, the 100% resection etc.  We have been referred to oncolgogy and for 3 monthly MRI scans for the next 5 years and she explained that is their standard post op plan in these cases and it should not suggest that they believe she will suffer again and/or get a cancerous tumor, but she also said that the grade 2 status means oncology 'consider her to have cancer' so I find that a bit herd to process becuase its benign but I guess grading is just statistics becuase I read somewhere that grade 2 implies 75% benign and up to 25% malignant ie it has the strong chance to develop into cancerous cells? Dont know if anyone else out there knows anything about that?

I dont know if she has the co-deletions yet but i plan to ask oncology when we go.

Chemo and RT have been mentionned as options that will be discussed but most likely not essential to be used at this point.  More of a watch and see plan..... am interested in gamm and cyber knife and gene therapy that i have seen some people mentionning on this website, i need to research more into that. I also read there is a trial in Scotland, thats about 4 hours away so will have a read if thats of any use for her too.

Anyway, we are wiaitng for the oncology appointment now.  At 4 weeks post op she is 110% better. she is back at school, full of life, tells everyone openly about her surgery and the fact that she had 'Oli' in her head but he was very naughty and made her fall down so the doctors cut him out :-)

She never had any problems with speech, memory or coordination and is predominantly right handed so we have all, including the docs, been amazed that they have cut so much out of her left temporal lobe and she is completely fine.  Not so sure about loss of peripheral vision yet, as she grows taller the doc said she might bump her head on cupboard doors etc, but actually shes quite clumsy anyway, like her mum!

We have been in great care at Alder Hey and I am in awe of what the medical team have been able to do for her so fa who have similar or even far worse cases with their kids and I got a lot of strength from the sharing so I have joined this network today so that I can continue to tell Jasmines story. I was not successful in finding any other sites in the UK or anywhere actually with such young people diagnosed so of course the life expectancy and prognosis questions cannot really be answered. The way I look at it, anyone whos got Olio 2 and is still around has more chances today then anyone before them as there are medical advances all the time. Realistically if i read a blog from someone who has survived 2o years I think, wow congrats to them, but that also means my daughter may have even longer than that because her diagnosis was 2013 (although we knew something was there in 2009...)

I dont have misplaced ideas that I will see her married with kids, just as my son mught not want to follow that path either, but I do want to see them grow up and have the chance to live a fulfilling and happy life and to get past 20!!! not much to ask is it?

I will keep posting and share her story for all those mothers out there who are devastated to hear such news of their young child and then go frantic because they cant find much info on the web, or what they find is so morbid!!!!  My daughter is doing great and I am 100% sure that her positive attitude and her youth is getting her better, I;, admittedly a bit of a mesws because Im the one who googled.....lesson learned!!

Keep Positive

EnglishMummy

xx

bigjake14
Posts: 4
Joined: Apr 2013

Don't settle for just one opinion. There are so many specialized cancer centers out there. My story is erieely similar to Ben's. So close, I think we migh be realted. Tongue OutI have the same Grade 3 Oli- left frontal lobe, diagnoised Feb, 26, 2013. Surgery removed 99.9999% of my tumor, about 3cm in diameter, no side effects from this surgery. My case completely blaffed the entire staff. Since I had no health problems prior, and no problems after.

I started 6 months of Chemo (Temodar) and I will do 6 weeks of raditation after this 6 month cycle. We put off the radition b/c at the time my wife was 7 months pregant. There was no way she could handle two babies at once. My treating facility is MD Anderson in Houston, TX. They offer the team colabriation approach. Meaning, when you decide to go there. You get assigna Neuro surgeon, neuro-Oncologist, and neuro-Radiationist to your case. You see all three Drs and as a group including you, a decision is made of how to treat you cancer. While I had a more advance stage of cancer, I, too. was lucky to have 1P19Q deletions, which enhances chemo in killing cancer cellsI am now doing 5 days of Temodar every 28 days for 6 months. I am due for an MRI at the end of the month to check and see if anything is there.

I will echo Ben's statement, "Fight this." Don't settle. To me the worst treatment is the wait and see.

njecab
Posts: 6
Joined: May 2013

SPMF therapy is a new technology for treating cancere. This treatment is a non surgical process and is not painful.this therapy  use  magnetic beams,which are targeted on the affected region.This treatment has yielded good results for cancer patients.

 

For more details check there website: http://www.sbfhealthcare.com/

Sabaq1054
Posts: 3
Joined: Feb 2013

My wife haws diagnosed Anaplastic Oligodendro Glioma In right frontal lobe extending to left.  She was operated upon at Johns Hopkins in June 2012 resulting in successful debunking of substial stuff.  Cashews underwent 30 cycles of Radiation concurrently with Temodar 120 mg for 42 days.  She was advised 300mg Temodar 5/28 for six months extended to another 6 months which will end in September.  Currently she feels lethargic, fatigued and at times very sleepy.  She is very positive, but finds some difficulty in concentrating and current memory which is problematic. Please be positive, avoid heat and be away from rush.  Blood counts may remain down but not much problem.

 

sadinholland
Posts: 239
Joined: Apr 2011

My husband had this tumor. I'm glad to hear your wife is doing ok.

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