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Oligodendroglioma II, recurrence after 2 and a half years

Chris_W
Posts: 28
Joined: Apr 2011

I'm looking for similar experiences or support with this. I posted this on another person's comment, but I don't think this is what she was looking for. And I am looking for something myself...

I have a stage II Oligodendroglioma, and have 1p, 19q deletion. My tumour is on the left-frontal lobe, right up against my motor strip, so have suffered a lot of seizures. I was DX in 2007 after frequent seizures. The tumour was the size of a golf ball. I was 38 then, 41 now. I had awake surgery in Nov 2008 and was put on a trial, so I took Temodal (Temodar) for 2 weeks prior to my op, then a few months later I did 10 months. In that time, the tumour was showing shrinkage. I had an MRI last week, and my neuro-oncologist told me two days ago that there is evidence of regrowth. I feel so unlucky because they had always said I would live to a ripe old age, but nothing I read points to that if a recurrence occurs. They only managed to get 85% of the tumour anyway, but they were doubtful at the time that it would grow anytime soon. Well, I find this to be pretty quick!! Makes me think twice about really pursuing a career, or just enjoying life and be as stress-free as possible.

I did so much research before my op, and even had two surgeons at one point, and they were both giving different opinions. One said radiation and chemo was my only choice, the other said he could operate but didn't think I should go down the radiation-chemo road. I chose the latter surgeon, had the surgery (awake surgery isn't bad at all!), but I chose the chemo.

The reason I didn't choose radiation is because they said it was a one-off thing. That feels like my trump card... if all else fails, get the radiation. I was due to have radiation before my op, but I cancelled the day before the head-fitting. I just felt that it was the wrong thing at the time.

After being told 2 days ago that there is new growth scares me, and just puts me back at square one (well, that's how it feels).

I'm scared, everyone on here seems to have someone in their lives, and I'm single, can't drive due to seizure disorder and don't know that I can go it alone. I have had to move back in with my mother due to my long rehab, and am so tired all the time. I started a Masters degree 2 years ago, and I finish it in a couple of months. Now I don't know what to do with it!

Sorry, I'm not being very helpful here, feeling rather negative at the moment. I feel lucky that it's not a more aggressive type of tumour, but I feel like there's no point in saving for retirement :-(

They say that this is the slowest growing type of tumour, yet they found lesions in 2004 and they wanted a wait-and-see approach. It took 3 years for a lesion the size of a pin to grow into a golf ball. Now that I still have that annoying 15% left, and it's growing, who knows how long it'll take until I'm back to having seizures all the time and have to potentially have surgery and go through that awful year of physical rehab. I'm still very weak on my right side.

Sorry for the long post. Be positive everyone, I'm trying! Being single doesn't help. I can't depend on my mother, it's too much stress on a lovely lady who should be enjoying her retirement.

Krissalee85's picture
Krissalee85
Posts: 4
Joined: Jul 2011

Hey Chris,
I too have the oligo grade 2, mine is left temporal. After about 7 years of partial complex seizures, I had a total resection in March of last year and am on the watchful waiting plan. I don't have the 1p19q codeletion so that worries me that it won't be long until recurrence and progression. I am also in grad school, finishing up my first year. I always question whether or not I should continue. My expected graduation is Fall 2014. I wonder if it will be worth all of the debt I'm getting myself into. I'm 26 and have also stopped planning for down the road. Definitely not saving for retirement! I've also decided not to have children because of this. My NO hasn't given me an expected survival time. If it wasn't for the internet, I'd have no idea what my pathology report translated into in layman's terms, which may have been a good thing.
What an emotional rollercoaster it must be to be told that there is regrowth. Apart from weakness on your right side, did you have any other symptoms due to regrowth? Headaches or personality changes? My next MRI is in September and I am constantly worrying that I'm going to be told it's back. My left temple has been twitching nonstop and I feel that something is not right with me. I'm foggy and irritable no matter how much I sleep. Because of this, worrying about tumor regrowth boggles down my thoughts all of the time! Really gets in the way of doing homework.
I definitely understand that it is difficult to stay positive. As cliche as it sounds, I love going to the movies. It really helps to bring my focus on something else for awhile. I'm trying to get into meditation as it's a well known stress reliever but it takes a lot of practice to focus solely on breathing. Animals are also a big help. Do you have any pets? I wish there was someway I could brighten your mood!

Kris

dana748
Posts: 3
Joined: Mar 2011

Mine isn't exactly the same but the feelings are. I was just diagnosed this year, had surgery and the doctor advised it was a 98% resection which I think is just standard doctor talk cause everyone who has had this surgery in my area had 98% resection. I am always wondering if it's growing back, is it growing further into my brain, how long do I really have. My oncologist said it is very likely that I will be gone in 5years, my radiologist said 3-5 years and everything online says about the same. I have twin 11-year-old boys and I never thought how much I want to see them graduate. I hope I get to. I am positive most of the time but I just finished my 1 week on of Temodar double dose and it really makes me depressed and emotional. I would like to share more but have to go for now.

Dana

Krissalee85's picture
Krissalee85
Posts: 4
Joined: Jul 2011

What is your tumor type?

dana748
Posts: 3
Joined: Mar 2011

Mine is a stage III mixed oglio-anaplastic astrocytoma.

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Dana 748,
In reading your reply, I was wondering why your physicians gave you a time line. I have
Oli-Grade 2/3, had 99% removed, diagnoised September 2011. My treating facilities are Roger Maris Cancer Center - Fargo, ND, Mayo - Rochester, MN and John Hopkins - Baltimore, MD. These three
centers, came up with a treatment plan, 6 weeks radiation(temodar) with 30 chemo rounds, along
with 6 months of Temodar 5 days every 28 day. As of today, I am still totally free of any growth, and will be off all medication by middle of July. I never suffered any defects from removal of tumor from my left front lobe, but was put on Keppra as a precaution from brain surgery. I was
removed off that in April. I was taking Decradon for low platelet count from Temodar 4 days before I started my month Temodar (5 day). Also, took Ondansetron one hour before temodar for Nausea. Have
not suffered any side effects. These treating facilities have seen patients with this type of cancer 18/20 years out and some even 30 plus years. I do have the 1p19q deletions. So, fight,fight
fight, and don't give into what doctors are saying. If you are not satified with your care, move on
until you find a treating facility that meets your needs. It is wrong to give timelines, advances
are coming everyday, it how each facility incorporated them into there practices.

Stay strong, think positive thoughts and live each day fully!

Benjamin

HeatherB5
Posts: 1
Joined: Jul 2011

Kris,
Your tumor is very similar to mine, but mine is in the right temporal lobe. Mine is also grade 2 and no deletion of 1p19q. I had surgery and they were able to remove most of the tumor. I then had 24 months of Temodar. The good news is I'm now 5 years out from diagnosis and no recurrence as of yet. Still, I have the same dilemma regarding the long-term. It's like having a ticking time bomb in your head.
I absolutely agree about the animals. I have been riding horses most of my life. My experience with the horses and my tumor have led me to start a therapeutic riding program. I'm determined to have something good come out of this.
It sure would be nice if we could see the time remaining clock on our tumors.
Heather

Chris_W
Posts: 28
Joined: Apr 2011

Hey Kris

Ditto to the "wish there was a way to brighten your mood"! I have done meditation for years, it really does help. Since I posted that first I finished my dissertation and much to my shock, came in the top 20% of my class! It was a super happy day, I was really amazed. I wish I had the right answer for you in regards to your studies, my degree was paid for and I'm on disability payments (a whole $800 a month), so the studies were just something to do. In my other life I was a lawyer and this was a post-grad degree in law - now I have nothing to do with it, except add a few more letters after my name.

How was your MRI? My next one is in 4 weeks, and I'm not feeling super positive about it. I wish we could all be in the same place and meet to chat about these things. My medical team have started to see me as just another post-op patient and playing the waiting game to see when my tumour turns anaplastic (Grade III). I've started having twitches in my right hand, and my thumb.

I think it's the meds that make us foggy and irritable... Well, the meds and the reality of having to live with this everyday. It's tiring and depression is always at the doorstep, I try very hard not to let it in.

I feel like I have so much to say... I didn't actually know anyone had answered my post until today, I thought I would get an email saying that I had a response. I hope this finds you well.
Chris

tamlyn54
Posts: 5
Joined: Aug 2011

My husband was diagnosed in 2003 with a grade II. He had surgery and radiation and really no real problems until re-growth last year. Had surgery again this time the grade was elevated. They have put him on temodar for two years if he can tolerate. He is 47 yrs old. At first he felt very much like you. He was divorced, no children, and felt very much alone. Through much prayer God opened some new doors for him. We married in 2005, he has three step sons that are just like his, we even moved to another city for a better job opportunity for him. Yes, there have been challenges and a lot of rough days for both of us and I am sure there will be more. The point I want to make is "it ain't over till God says it's over." He holds our life in His hands. Doctors and researchers are making tremendous strides in brain tumor research. Live your life and don't give up.

God Bless You and everyone that is dealing with this disease.

Chris_W
Posts: 28
Joined: Apr 2011

That is hopeful for me :) He found a great person in you, I can tell by the way you write about him. Did he have any long term effects from the radiation? I am still praying every night, for myself and all the people I care about... I care more for them than I do about myself. In fact, they're what keep me going. I am blessed to have such a great mother and such wonderful friends. They're the source of my strength, and of course, I include my dog in that group! I feel like I have a purpose on this planet, and I hope I am being true to it, and I hope I complete it before I go. In the meantime, there's a lot of coping to do, and it's a daily thing. Almost like a waiting game - sometimes I wish the tumour was quick growing, just so I'd know. It's like watching golf on TV, it gets boring (at least for me!) and you just want it to go faster and swing already! Being "slow growing" doesn't seem to help me deal with it better for some reason.

Struggling Girl...
Posts: 3
Joined: Jul 2012

Hello,

I am 27 years old and my partner is 29 years old. We have only been together a year but we fell head over heels in love the day we met and have been inseparable since.

3 months ago he had 2 nocturnal seizures whilst in bed with me and as time unfolded it became apparent it was a tumor. He had a partial resection, they could remove only 50% of it as it is was very large and had invaded inoperable parts of the brain. The results showed that he had a grade 3 oligondendroglioma.

I have stuck by his side over the last 3 months, taken endless time off work, been to every appointment and spent every night with him and his family.

What I am now feeling is an overwhelming sense of fear about the life that lies ahead. They have given no prognosis beyond it is unlikely he will live more than 10 years. It terrifies me as it certainly not the way I imagined meeting the man of my dreams to be, and it doesn't offer the stability I had hoped for. He won't be able to support me and children as he likely will be off work a lot himself? I'll need to be mother, father, carer and breadwinner.

I just want to hear from someone who has been through it, how hard it actually is? Whether you get used to it? and whether the joy from love ever reaches a point it balance out the pain?

I would really appreciate your response?

Thanks

CatherineSch.
Posts: 14
Joined: Oct 2011

I'm pretty new to this board, but am compelled to return daily, for hope, encouragement, and strength. My son (36), has a Oligodendroglioma, Grade "2-ish", left frontal. Resection done in 2006, with no following tx. This August was told it was creeping back, and after being presented to the Brain Tumor Board, it was decided another surg., with radiation following would be best. (His original tumor was the size of a lemon(!), and propbably had for 7-9 years.

I know how you must be feeling, as John seems to want to avoid the whole thing, and has till Dec. 1 to set up surg. and come home here to Strong Memorial Hospital (Rochester, NY), from Florida. I do GET IT, the everyday first thought, is I'm sure of this life impacting reality. He has a great girl, and the talk of marriage, children, is not discussed. How does one with this challenge, and life dx., make plans?? He does NOT want to discuss most recent development, and if conversation is attempted, he quickly will bring it to an end...

It is a slow grower, its true, but we were also told he would live to a ripe old age, and probably be clear for 9-11 years! And its 5. John is on two brain sedatives (Kepra, and Dilantin), his Neuorsugeon here, has told him for the past two years, he could come off the Dilantin, and be most likely safe from seizure, but John has never gotten a Neurologist to monitor meds. in Fla. and his wonderful Neurologist at Strong, has moved away. John says "if it ain't broke, don't fix it". He's avoids so much of this, its scary.
I know everyday, they're making strides in research efforts, but not fast enough for so many.

Most importantly, Chris, you can depend on your MOM. She wants to help, and have you lean on her, I'm sure of it, as I want my son to, so badly. We always love our "children", and hold them close in our hearts. It IS stressful, OK, but more stressful, when kept at a distance.
Hang in there, and God Bless you. I wish only the best outcome for you, and my son, and hope you will keep me posted.
Catherine

Chris_W
Posts: 28
Joined: Apr 2011

Hi Catherine

Thank you for sharing that. You sound very strong, and as concerned as my mother. It's hard being the patient, I was like John for so long - I couldn't stand changing drugs all the time. One thing I tell everyone though, is to get off Dilantin, it messes up the teeth and ceases to be effective after a certain amount of time. It's an old drug, but Keppra is great, I take it along with Lamictal. I also have to take anti-anxiety meds, I think the tumour increases the anxiety in me, even if it is only in a psychological way.

It's funny (strange), we know it's a slow-growing tumour, but what does that mean? When I mentioned that after my MRI in April, my medical team said "yes, it's been 2 years, that's a long time". Is it? In the scheme of life, 2 years is meant to be a short time! Now they're just waiting for the "thing" to become a stage III, and it isn't operable, so I'm stuck.

The reason I didn't come on here until now is because I spent the summer on chemo and it was horrible. I had done Temodar before, but this time around I had an allergic reaction, and now they're talking radiation. I refuse to do radiation, I feel like my brain has gone through enough now and I went through a depression (perhaps I still am) because of that. As much as I don't want to keep thinking about it, every 12 hours my alarm goes off and it's time for my anti-seizure meds. There is no way of forgetting about it.

I like that you said it has become his reality. It doesn't have to be the only reality, I actually got a dog 2 years ago to re-focus my reality. I don't have anyone to take care of (I try waiting on my mother at times, but she refuses and still insists on making supper!), so my dog has become a really important part of my life. She can make my day with just a look.

I have my next MRI in a month, and I'm not being very positive about this one. I have new neurological symptoms, and my guess is that they'll talk about increasing my medication. If I refuse to do radiotherapy, then they'll say to just do a watch-and-see approach.

I feel like all I'm doing is being negative, I'm not actually a negative person. I guess I just need to vent to people who "get it" and can relate.

God bless as well and thank you :)

AndrinafromEngland
Posts: 10
Joined: May 2012

I don't want to write an essay to you about all of my experiences until I know that you are still looking on this site. If you are, please just reply to this and tell me how you are and how you are dealing with this at the mo.I would love to hear from you.

Regards

Andrina

websterbr's picture
websterbr
Posts: 20
Joined: Oct 2011

Hi Chris,

Sorry in advance for the novel. I was diagnosed with the same tumor but in the right frontal lobe in June 2011 and had resection in September 2012. They told me that it will be 20 years when or if it comes back but in saying that they told me that it can never be 100% removed because it spreads like a spider web and they cannot see it until it grows. My post-op appts started off positive and have since become more sceptical. Onco says there is likely residual tumor that they are seeing on my MRI but surgeon says it is just swelling from the surgery. Now we wait for it to grow....
I feel you frustrations and uncertainty about the future. I am 27 years old and two years ago my husband and I bought a big 3 bedroom house planning to start a family. Now that all of this has happened we have decided on dogs and got another one as a pup in May. It was the best decision I have made since my surgery. She gives me a reason to get up in the morning and watching the two of our dogs play keeps my laughing. I am not able to return to work due to memory and comprehension deficits since my surgery and will be off until at least April 2013. My dogs keep me from going insane while I am home alone.
We have decided to stop worrying about rushing to pay off debt (such as a mortgage)and travel and do the things that we have always wanted to do but put off for another day.
Staying positive in our situation is extremely hard especially after seeing the doctors. I was told to do tai chi to help relax and heal the brain and to find something that will give me a sense of accomplishment.
They say live life to the fullest but you never really know what that means until are faced with cancer and are uncertain how long your life will be. Someone on here told me to invision putting all your thoughts in a box and put it on a shelf. It is out of your way but not gone forever. The way I have come to look at it is that you can spend your time worring or you can try to enjoy the time you have. You cannot change the way things are and I am starting to accept that. I still have really bad days but then I do something so small like watch a movie I loved as a child or laugh so hard I might pee my pants or lay on the grass and listen to the bird and I start to feel like I can get through this. I am not sure if any of this helps you but you are not alone in your feelings.

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi
I have decided to write my essay after all !
I was diagnosed with an Oligodendroglioma II in 2001. They found it because I suddenly started to have Gran mal seizures. It is in my left frontal lobe next to my motor and speech areas. I was 34 then with two boys 5 and six years old. I had an op 6 months later-no other side effects accept that I had more seizures. I had no other treatment. I was told it would re-occur in about another 10-15 years time. In 2008 they found it had re-occurred (about 3x3.5cm ish) but they didn’t know when the regrowth started because I wasn’t having regular MRI’s.
Last year they told me that I will need another op but said a normal op would be too dangerous. The surgeon said that he would refer me for some more accurate scans and Neuropsychological tests in ‘a view’ to have ‘awake surgery’. If it all went ahead the positives of awake surgery will be: about 85-90 per cent of the tumour could be removed, the epilepsy would be reduced and he would be able to tell me if there were any anaplastic cells there. After the surgery he said I would need radiotherapy to kill off the rest of the tumour cells. The negatives are: potential paralysis or deficits to my muscles on the right hand side, speech and neurological deficits-and of course death.
The surgeon told me that the tumour will eventually change to a higher grade but due to its unpredictable nature, no-one knows when; it could be tomorrow or in 3, 4, 5 yrs time. The alternative to surgery is to carry on as before with ‘watch and wait’ approach with MRI’s. My boys are now 15 and 16 and the next couple of years of schooling are crucial. My youngest has exams next June and getting a place into college is dependent on his results. My eldest starts college this Sept. If I have an Op next year the stress on the boys may be detrimental to their studies- whether the post op deficits are long or short term-everything will change-I know it will be awful for all of us.
Because of this and the fact that apart from the epilepsy I am very fit and well, I have decided to leave it for now and continue having MRI’s-the surgery will have to wait. I just want to enjoy this time with my partner, children and my family while I am still healthy.

chiligrl1's picture
chiligrl1
Posts: 1
Joined: Nov 2013

Well, it is about 2:00am and here I sit on the computer. Logged in here, looking for I don't know what. Was diagnosed with Grade II oligo in Left temporal lobe in 2003, had 2 surgeries, chemo and radiation and thought all would be well. Started having symptoms about a month ago, anxiety, forgetfullness, thought, well, these are the symptoms I had originally so called and scheduled MRI. The damn thing is back. Currently waiting for biopsy that had to be sent to Johns Hopkins to determine level of malignancy. Radiation limit has been reached and the regrowth is diffuse so we are probably looking at Temodar. My deal is that, ironically, I am a hospice nurse. I can't help but wonder if I will be able to work. I know my immunity will be compromised and I had a lot of confusion last time on Temodar. The Dr. is a great doc but he is almost too unconcerned, just states it is probably low level of malignancy but I am SCARED to death. Trying to be all brave and cheerful but just this moment I am flat out scared to death.

 

mccindy
Posts: 82
Joined: Jun 2013

I'm so sorry to hear about your recurrence.  Oligos are so slow growing, so it's not surprising that it took ten years to grow back.  HOw often were you having MRIs to watch it?  Or had you stopped after a few years of no new growth?  I hope that your biopsy shows it's still a grade II.  do you know if you have the 1p 19q deletions?  Oligos with those deletions do usually respond to chemo so hopefully you'll be able to do another round of chemo to fight it again.  Are they saying if the regrowth is operable or not? 

sadinholland
Posts: 226
Joined: Apr 2011

I am constantly on here looking,searching for information, answers, support. My husband is sleeping more since he completed his first dose of CCNU and Dex. He didn't  start sleeping so much until after he completed his dex. Am I reading too much into this? Since the temodaar didn't stop the growth and CCNU is an older chemo, I worry that it isn't working either. I read so many post where doctors gave them CCNU along with something else. Why would they only give my husband CCNU And Dex? I am so confused.

mccindy
Posts: 82
Joined: Jun 2013

Hi sadinholland,

My guess would be they are trying the CNNU instead of the Temodar.  Since they know the Temodar didn't work, it's time to try something else.  I would imagine the sleepiness is from the Dex, from everything I've heard it is a fairly common side effect and when he stops taking it, it will eventually wear off and the sleepiness will stop.  I know usually the combination of CCNU and Temodar is used  for GBM patients.  The hardest thing to do is wait, but try to give it a little time and see if the CCNU works and wait for the Dex to wear off.  And enjoy your every moment together, try not to spend that time worrying.

falcon69
Posts: 25
Joined: Feb 2012

Chiligrl1.....my son, 31 at the time, was also diagnosed with a gr 2 oligodendroglioma but his was in the right frontal lobe. He had surgery in Dec. 2011 (gross total resection)and a "watch and wait" approach with MRI's quarterly was taken. In Nov. 2012 the tumor had begun growing again. We were unpleasantly surprised since we thought (hoped) it would be several years until new growth would be observed. That just goes to show that these tumors are unpredictable and one can never predict what will happen. A 2nd surgery was performed in Feb 2013 and the path report showed that it had progressed to a grade 3. He just completed 4 rounds of the PCV treatment and has just begun 6 weeks of radiation treatments. He does have the favorable deletions which helps the effectiveness of the chemo. I know that even after the surgeries, chemo and radiation the odds are that his tumor will again begin to grow at some point and that will always remain a huge concern. Fortuantely, he has had no deficits at all, is completely normal, and has missed very little work, even through the very rough PVC treatment. He has lost 50 lbs and so is a shadow of his former self, but he has all of his mental and physical faculties in tact.

mccindy
Posts: 82
Joined: Jun 2013

Falcon69, I'm so sorry to hear about your son's regrowth.  Oligos are typically the slowest-growning type of cancerous brain tumor so it's surprising to hear he had regrowth so soon.  The upgrade I'm sure was very concerning to you also.  It does sound promising that he has the 1p 19q deletions, hopefully the chemo/radiation combo knocks that thing back for years.  I hope that you have great results from his treatment and he is with you for a very long time.  Stay optimistic.... it's what I try to do, since I am now in the "wait and watch" time period myself.  My grade II astro is supposed to grow back, but who knows when?

falcon69
Posts: 25
Joined: Feb 2012

mccindy...Thanks so much for your kind reply to my post. Your words are much appreciated! My son is optimistic and has a good attitude about his situation. He has always been the type to take things as they come and "roll with the punches". It is hard as a parent to see your child be go through something like this. I would trade places with him in a heartbeat if it were possible.  It sounds like you have a positive attitude and are getting on with life, which is as it should be. Please know that I wish you all the best:)

mccindy
Posts: 82
Joined: Jun 2013

Thank you so much for your kind wishes.  I know as aparent it must be so hard to watch your son fight his cancer.  My mother has told me she wishes she could take my place as well. I'm glad to hear your son is so strong and a good fighter.  Best of luck to you both!

Kees van Beelen's picture
Kees van Beelen
Posts: 11
Joined: Dec 2013

Hi - would just like to add my encouragement here.  The chromosone deletion is key.  If the Temodar put the tumour in its place before, it's likely to work again.  I remind myself of that every time I have my MRI and hold my breath for the results.  I think the risk of developing leukemia from Temodar goes up 5-8% each time - odds I would take.  Keep the faith.

Besides telling my nine month pregnant wife of my condition, the second hardest thing I had to do was tell my mother.  Please stay positive - I still have a hard time with the anguish this terrible disease has caused to my family and friends.  

I will keep you and your son in my thoughts.  Best wishes.

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