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Oligodendroglioma grade 2

ashleybell's picture
ashleybell
Posts: 2
Joined: Jan 2014

Hi, my name is Ashley and I am from Portland Oregon. I never thought I would have the courage to talk to others about what I am going through. It has been almost 2 years since I had a seizure then surgery where they took out about 98% (or so) of my Oligodendroglioma grade 2 tumor. It was in my left temporal lobe and the surgery went great. They said I have had the tumor for about 10 years. I can't believe I never knew it was growing. I get worse headaches now then I ever did before the surgery. Ever since the surgery I have horrible short term memory, trouble functioning with reading and writing, mood problems and a few seizures. It could be much worse so I am just happy to be alive and living life! One thing that kills me is knowing if/when it is going to come back and the life expectancy I have (unfortunately). I was 22 when it all happened. My parents were there through it all and they keep telling me I am going to live a long life and that the doctors said theres a chance it wont come back. I know they don't want to scare me, but they have to realize I just want to know. I thought I would ask others who are going through this what they know. 

Along with that is there any good recommendations anyone has that will help? Things to eat? Things to do? I want to live my life to the fullest and do whatever I can to stay healthy and beat this thing! Thank you so much 

mccindy
Posts: 82
Joined: Jun 2013

Hi Ashley! 

The good news is you have an Oligo, and that they were able to get so much of it out.  I've heard of many people with Oligos that lived for 15-20 years before any new growth or recurrence.  They are slow growing and less prone to upgrade, which is good news. 

I also have headaches that have come back since my surgery last July.  I'm on a pretty high dose of Keppra so I don't have seizures, but I do have a terrible short-term memory and a lot of problems with multi-tasking. It's really just a matter of figuring out how to funcition with this "new normal" for us. 

I try to avoid sugar because I've heard as an inflammatory it can be very bad for cancer, and I also try to add turmeric to my food frequently, as it has some cancer-fighting properties.  Mainly just try not to worry and stress yourself out, get exercise and eat a healthy diet.  And find something positive in every day!

ashleybell's picture
ashleybell
Posts: 2
Joined: Jan 2014

Wow, thank you so much!!! It feels so good to talk to someone else about everything we are going through. This "new normal" is hard for my family and friends to understand, especially cause I have such a hard time talking and explaining about the things I go through. Another thing I have been thinking about is having kids. I am about to turn 25 and I just got married last October. I absolutely love children and before everything happened I was suppose to be an elementary school teacher. I graduated with my degree but when I tried to go back there was no way I could, it was too much. At least right now, hopefully things will get better! Anyway, have you heard or do you know (or anyway else!) about the risk factors for having children. I don't know if I will be able to go off my seizure meds (is that dangerous for pregnancy?) and then theres always that thought about "should I bring someone else into all this" knowing the things that could happen. 

Another thing I was wondering about was 1p 19q co-deletions, which I see people talking about. That was something I didn't have and don't know much about. Do you or anyone know exactly what this is? I know its good to have! One thing I do have is low split ratios though. Ah sorry for all the questions! This is the first time I have ever talked to someone else I can relate to. 

Thank you again! :)

mccindy
Posts: 82
Joined: Jun 2013

I don't mind the questions.  It's hard for those of us going through this type of thing because it's so rare, not many peole know what it's all about.  As far as having children, I do know of people who have had children.  This would probably be a good time for you, as you have the tumor out and are in "wait and watch" status.  The anti-seizure meds on the market now are a lot safer than the old ones when it comes to pregnancy.  Check with your doc to be sure, but I know they'd rather have you on them than not while pregnant, because a seziure would be much more dangerous than the meds to the baby.  Children are a gift, and you could have a lot of time ahead of you, so don't worry about bringing a child into your situation.  None of knows the future, and people die in accidents all the time, so don't worry too much about that.

As far as the deletions, they look for those because there have been studies that show that tumors with them are more responsive to chemo. Not having them just means they can't count on them to help chemo response, but tumors without them do respond to treatment as well, and you won't have to worry about that unless your tumor returns. 

things will get better for you, and you should be able to return to work eventually.  I have been able to return to my job.  It took a while to get to full time, but I did it.  Keep on working on getting stronger, think positive thoughts and enjoy your life!

83vthokie
Posts: 1
Joined: Mar 2014

Ashley, 

 

My name is Holly and my husband went through the very same thing last year. In December of 2012 he had a Gran Mal Seizure and was rushed to the hospital. He had a lot of headaches prior to the seizure but no other signs indicating that he had a tumor. However, after spending a week in the hospital they determined he had a brain tumor which turned out to be a oligodendroglioma grade 2. They were able to remove 100% of his tumor on Jan 16th, 2013 and he has a MRI every 3 months to watch for any regrowth. We have an amazing team of doctors who all tell us there is no reason to believe that he will not live a long and healthy life! His tumor was in the left frontal lobe near speech, and more specifically the area that affects talking. He now has a more pronounced stutter and has complex partial seizures about once a month that last for about 30 secs, where he can't get any words out. He still suffers from headaches and has a hard time focusing/concentrating and the Keppra was making him really tired and run down. Thankfully the neurologist slowly got him off Keppra and on to a new drug VIMPAT -- which is amazing!!! The Vimpat has even helped him focus more too! I know you must be scared, my husband was too and he still has bad days but he is definitely getting better each day and so far all of his MRI's have been clear!! 

 

I know this is rambling from just the wife of someone going through what you are, but I hope it helps in terms of knowing that there are others that are going through the same thing and are doing really well. You are in our prayers!! 

 

<3 

Hollyann 

gabolko
Posts: 4
Joined: Mar 2014

Hello, I have had the same kind of tumor oligodendroglioma grade 3.  I have been healing and dissipating my tumor through acupuncture, chinese herbs, and my diet, as well as vitamins and other beautiful things. 

As far as eating goes, You should google Dr. David Pearlmutter , I have been following his diets of no gluton or sugar because those change into glucose which creates cancer growth.  Also load up on asparagus, shitake, maitake mushrooms, tumeric, cawliflower, and green juice made from (cucumbers, celery, spinich, parsley and if you can add tumeric and collard greens even better)  I have many other diet tips and ideas to help you keep the tumor away as well as create fast healing in your life. 

Life is beautiful isnt it? Its going through these experiences that makes us recognize and appreciate the small things.  I am moved by your journey and courage! It feels amazing to have others that are going through a similar journey as my own.  One thing I have been doing is blogging my journey, if you are interested in checking it out at all the link is:  

brainnewbeginning.blogspot.com

If you really are curious about any other nutrition ideas, feel free to email me at gabolko@gmail.com and we can discuss more.  I would love to hear more about your journey as well.

 

Much love, Gabrielle

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

First off, I want to let you how sorry I am you had to go through all of this. It is unfair. This monster tumor should have never existed. That said, I am glad that you had a good team of doctors and that you now are living your life to the fullest.

You already got great advice expecially from McCindy. I will add my two cents regarding children. My approach is pretty practical:

In a nutshell, yes you can have children and you should. It will give you so much hapiness. I know brain tumor survivors who have kids. One of them is a doctor who has three children, practices medicine and ski every week end during the winter.

However  because of your diagnosis you cannot be as carefree as someone else when bringing a child into this world. Make sure that you have good Godparents for example, so if you have a reccurence you already have in place someone else who can help raise your children with your husband. Make sure that financially you save a lot;  continutely put money in an account for your children so if your husband becomes a single parent, they will be well provided for. Also realize that children are constantly demanding your attention, there are many many sleepless nights and that if you cannot teach elementary grade maybe you don't have the energy to parent yet. Maybe in a few years when you feel better and your concentration is back and you can hold a job, children can be something to reconsider. 

Having babies should never done lightly.

Good luck

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