Oligodendroglioma II, recurrence after 2 and a half years

dana748 said:

Stage III Mixed Oligio-anaplastic Astrocytoma
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 said:

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

websterbr said:

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.

tamlyn54 said:

Husband Has Oligodendroglioma Anaplastic III
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.

chiligrl1 said:

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.

 

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 said:

Me too!

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.

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.