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Grade III: Anaplastic Oligodendroglioma lifespan?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

My 26 year old son was diagnosed with an anaplastic oligodendroglioma in May of 2009. He had a craniotomy and they felt like they got all of the visible tumor out. He then had 6 weeks of radiation along with 6 weeks of Temodar. Now he's doing the 5 days of Temodar/23 days off, indefinitely. Except for nausea etc while on chemo, you'd never know that anything had ever been wrong with him.

His dr. was not optimistic. He basically gave us no hope. All he would say is that the median survival rate is 3 to 5 years. When I pressed him for some hope and asked him if anyone with this kind of cancer, a grade III, ever lived like ten or so years, he said it could be sooner, like two years.

What I am wondering....I haven't seen anything yet where someone with anaplastic oligodendroglioma says that they lived more than 5 or so years. Maybe I just missed it. Anyone out there going on 5+ years?

His FISH evaluation showed that he does not have the gene deletions that make this form more sensitive to chemo.

Thank you to anyone who can encourage me.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you very much for your encouragement. I am praying that David would live to see his old age. I am hoping that there will be a breakthrough and they will discover some new treatment that will help with the battle against brain cancers. And I'm hoping and praying that the radiation and the Temodar will continue to work for him and will prevent a recurrence for...forever.

I'm so sorry that things are not currently going well for your mom. I hope that she is getting some sort of treatment and that you have hope that she can continue on with her fight and still enjoy a good life.

David is doing really well. The Temodar is hard but it doesn't disrupt his life a huge amount. Here's a link to his blog site if you'd like to check out how he's doing: http://web.me.com/davidwebb21/Trusting_in_God/Blog/Entries/2011/3/30_Mounds_of_Blessings.html (Hopefully this link works!)

We are almost to the two-year mark of David's brain surgery and diagnosis. (May 8th and May 15th.) Our oncologist told us then that the median life expectancy is 3 to 5 years. So I torture myself by thinking that we are approaching the danger zone. But on the other hand, our oncologist also told us that every day David goes without a recurrence is another day in his favor---it shows that his body is fighting it off, and the longer he goes, the better his odds.

We are going in for our regular 3 month MRI and oncology appt on Wed. April 6th. David considers these appointment just annoying checkups but I have to fight hard to keep from being terrified, and to keep my emotions from being obvious. I don't think these MRIs will ever, ever get easier. I hate when they come due. But every one has been clear so I am telling myself to be positive and expect another good report.

Thank you again for your encouraging post!
Love and blessings,
Cindy in Salem, OR

aldworth6306
Posts: 3
Joined: Apr 2011

After 14 years I still get terrified everytime MRI day approaches. I'm sick to my stomach all morning waiting for the results.

A friend wrote this to me when we got the bad news a couple days ago. I've been hearing her words over and over again in my head. Her mom had breast cancer.

"When my mom was first diagnosed with cancer and the outcome didn't look so good, she and I had a conversation about how you can't stop planning for good things in your life. She said something to me about how while this moment was horrible, terrible, and not part of her plan, she get through it because she knew there was another side and she would come out the other side eventually. But she couldn't stop planning for good things in the future... because if she just threw up her hands and just expected the worst or gave up hope in any way, then that was tragedy. Just because bad things happen, it doesn't mean good things won't happen. You can't pick what happens to you, but you can decide if you are robbed of your hope. You have to imagine the life you want and truly believe you will get there."

You can't pick what happens to you, but you can decide if you are robbed of your hope. I keep telling myself that. As hard as it is right now, I've got to keep hoping. Can't stop planning for good things in the future.

I hope David's MRI is clear on the 6th. Good things ARE in his future. Keep telling yourself that. Imagine the life you want for him, and truly believe he will get there.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I love your Moms thinking

KAZUKOchan
Posts: 1
Joined: Apr 2011

Hi I hope all is well I would just like to tell you my daughter has the same grade 3 oligodendroglioma they took the size of a tennis ball and a half out then radiation and temodar that was in 2006 three weeks later she was back at work she was 29 years old everything was fine until just before her 4 year mark ,she has had the gamaknife done back on temodar and also avastin this last jan 26 was her 5 year mark she is having some problems had to give up work her leftside doesnt work so good but still is living life . She lives with us with her 7 year old son everyday is a blessing . IT was hard in the beginning her husband left her and thier son, any thing we help with please let me know. God bless

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for writing and telling me about your daughter's situation. I am so sorry to hear that your daughter has had a recurrence. It is so hard to see our children fight such a terrible disease. I will be prayng for your daughter and for your family.

David's MRI on April 6th was clear. No changes at all. We were so thrilled and grateful to get such a great report. I asked our doctor what would happen when David quit taking Temodar. Would the tumor grow back? My understanding of Temodar is that it puts the cancer cells into a hibernative state--it doesn't kill the cells. When you have to stop taking Temodar, then what? Our doctor said, "Let's wait and see. Our goal is to keep your son intact as long as possible. I would be willing to keep him on Temodar for seven years if he would be willing to take it for that long. And in the meantime, in the next two or three years, there could be some new developments in treatments and medicines." At first I was appalled at the thought of SEVEN YEARS of Temodar. But then I remembered that our doctor had originally told us that David's median life expectancy was 3 to 5 years, and it could be shorter, like 2 years. Now he is saying that there's a possibility of seven years. That was a big encouragement to me.

I am hoping and praying with all of my heart that David can beat this, with God's help. Even though this is like a nightmare for me, I have to say that things really going good for David. He has a rough time with the chemo, and it's so hard to live as a cancer patient, but he's doing great, going to college and getting great grades, working part time, working out at his gym, doing stuff with friends and family...I never thought back when he first was diagnosed, that he would be doing so good two years later. Here's a link to his blogspot if you'd like to read some stuff that he wrote:

http://web.me.com/davidwebb21/Trusting_in_God/Blog/Entries/2011/3/30_Mounds_of_Blessings.html

Thank you again for writing. I hope that you and your daughter and your family will stay strong and keep fighing and praying hard.
Love and blessings,
Cindy

sadinholland
Posts: 226
Joined: Apr 2011

I am new to this site. My husband did not have a seizure, he had headaches that the doctor kept putting off as due to high blood pressure. Finally the doc requested an mri that the insurance denied. He didn't try to get the insurance to approve it,as he was still thinking blood pressure. I called to get it approved, thinking my husband may have a stroke if they don't do something for him. 45 minutes after the mri, we get a call that they found something significant. We weren't expecting them to say a 4.5 X 6 brain tumor! At first they thought it was the glioblastoma and said he may have 6 months to live.This was just by looking at the mri. Admitted in the hospital the same day, July 2,2010 and given meds for swelling, and many test to rule out cancer in other parts of the body, we left there on July 10 for a second opinion appt on July 15. Went to Cleveland Clinic for second opinion and possible surgery and was admitted and had surgery on July 15. Results came back as a grade 3 anaplastic olio. Better than what they thought but still bad. Had 6 months of chemo/temador and radiation, after one month break, started the 5 day temador. Mri in April showed something, according to doc, unsure if it is from the radiation or something new so started 21d temador and now waiting for June to come to see what's happening on the next mri. That's my story. I tried to make it as short as possible. My husband is working and driving and doing very well. It is me who is constantly on edge. Watching, wandering, crying, trying to be strong in front of him and the kids. Thinking what right do I have to be like this, he is the one going through it. Everyday I worry. I feel like I'm going crazy sometimes not knowing from day to day. I have a strong relationship with God and I pray that we will beat this thing, beat the odds. I have visited another site, and there is one person on there that lifts my spirits when I get down. I thank God for that person. I praying for everyone that has this dreaded cancer and ask that you too try to keep the faith. We all need to live our lives to the fullest. Nothing is promised to any of us.

Beckymarie
Posts: 358
Joined: Aug 2009

It is extremely difficult being the spouse of someone who is fighting this horrible cancer. Your job becomes managing his cancer, being the cheerleader, the stoic one. Meanwhile you feel like your world is coming down around your ears. The waiting is very anxiety provoking. We did this for 15 months with my husband when he was diagnosed with a GBM in March 2009. I went to counseling and went onto anti=depressants. Hated taking them but had to admit they helped. Try to get some form of exercise, even a quick walk can help give you a reprieve. I am sorry for what you are going through...you are in my thoughts.

sadinholland
Posts: 226
Joined: Apr 2011

I have been going for walks lately since our weather has finally decided to break! My husband doesn't have another MRI until June, it's every 2 months, if I haven't stated that already. Meanwhile I can't sleep, I "stress" eat and I am a nervous wreck. I just read the side effects of dex. That was NEVER told to us. His is taking a small dosage right now, 1mg but now I am scared about that. I am trying to keep the faith, I really am. Good to hear about people surviving longer than 3 years with this horrible thing!

MeaganShane
Posts: 1
Joined: May 2011

G'day from Australia, I understand exactly what you mean about how hard it is to be the spouse of someone who is fighting Cancer. My Journey has just began and I am already feeling the strain. My husband was diagnosed with Grade 3 Anaplastic Astrotoma and Oligod on the 5th of April 2011. (My husband had to make sure that if he got anything he had to make it an extra special one and get two types of Cancers). My Husband went to hospital November last year and was told that he had high blood pressure and to go home and see his local GP what the hospital didn't pick up was that he had his first mild seizure. At the end of November we went back to the hospital with again the mild seizure plus he had a pain in his stomache. He was rushed into emergency surgery as they belived his appendix was going to burst. He has the appendix removed and we thought that was the end of our trouble. Flash forward to April 04 2011 my husband experienced another mild seizure. He beged his local GP for a Cat Scan as he knew that their was something extremely wrong with him. We attended the Cat Scan imaging on April 05 2011 we where told to go directly to the Local Dr's ASAP. I knew straight away that something major was about to start. I was crying all the way to the Dr's. The Local GP started to say "I am so glad you brought your wife with you, I afraid I have some bad news" I think this Dr has worked all his life to deliver such a traumatic phrase as this one. We were told to go to the hospital ASAP my Husband has a really large tumour. My husband handled the first part of this news extremely well, I on the other hand did not. I also new that I had to break the news to my Children both boys aged 16 and 9 (this was extremly hard i must say). We rushed my husband to the hospital and they said they couldn't tell us much as they would have to do an MRI on him. We waited until the next day. My Husband had a 4cm tumour growing on his right frontal lobe. 5 days later my husband went into surgery where they removed most of the tumour they were not able to get the full tumour as the tumour was in a very hard position. My husband made a remakable recovery the neurosurgen believed the tumour would come back as a stage 1 tumour. My husband was struck down with an extremly bad headache on day 4. 6 days later the lab results where back and of course the news was not great. He was was diagnosed with a grade 3. My husband was released from Hosptial two days before Easter. Since my husband has been home he hasn't really been the same. He has had some short term memory loss and he unable to get himself of a really bad funk. I guess the news since coming out of hospital hasn't really been that good. We saw the Oncologist on the 3rd of May and he advised us that he has not seen my husband type of cancer before as the tumour is sitting in a very strange place, the oncologist is not sure on how to treat him. He thinks he will trial him on Radiation and Chemotherapy together as this is how they treat stage 4. We see the Oncologist tomorrow to see if my husband has the 1 19 deletion rate. Fingers crossed. I guess tomorrow we will find out on how they are going to treat him. So I will update with the news. I hope he does have the 1 19 delation as from what i have read this will help with the oligod tumour. I am glad that his website is available as we do not have one in Aussie Land. I have tried to get as much information on this type of Brain tumour but i guess the information is very limited. I have been going through the rollercoaster motions and I am hoping this website will help me in my ways. My children seem to be okay with what is going on and I am trying to keep them informed to my best abilities. Hope all is well with yourself and your partner.

sadinholland
Posts: 226
Joined: Apr 2011

I hope all will be well for you and your husband as well Meagan. My husband was the same way when he came home from all the surgery,radiation,a chemo in Sept. He slept most of the time, hardly ever getting out of bed. I was so scared and worried, He went back to work in November and his whole outlook changed. I think he needed to go back to work to keep his mind off of his illness. They told us the same thing, they treat it like a stage 4.He did his 6 weeks of radiation and chemo pill after his surgery, off for a month and then started the 5 day chemo pill. He is still working and doing OK. I just worry about the MRI in June, since they increased his temodar, and wondering if what they saw was something to worry about or radiation effects! I have not read where anyone is on 21 day cycle of chemo. If there is anyone out there, please respond. I pray that everyone on here continues to be strong and lean on the Lord! God Bless!

lclydes
Posts: 2
Joined: Apr 2009

For Stage III Oligodendroglioma (with gene deletion) is Friday. (4/30/2008 hospitalized for seizure). I don't believe they've ever said mine was anaplastic - but I wasn't awake a lot those days... Anyway, I have continued to thrive after brain surgery for biopsy, 33 days radiation and Temodar, then weekly or biweekly chemo with three different IV types and the same Temodar treatment 6 days on - 28 off. Two hospital stays totalling 15 days.

I'm hopeful now, but I still have extra anxiety right this minute - the MRI results are painful to wait for. Luckily, my neuro-oncologist has access to the results by the time I get back to his office from the MRI lab in Swedish.

I'm going for 10-15 years, and will be thrilled for each day I wake for the rest of my life!!! I have learned to live through pain, then the fear, then the hope, and more other feelings than I would care to mention, but I'm here, and I don't give up easy! Don't you, either.

sadinholland
Posts: 226
Joined: Apr 2011

Now this is what I love to hear! I am so glad you are doing well. I pray you will continue to stay on that path!

imprezagm4
Posts: 3
Joined: Feb 2011

I recently found out about a gentlemen in town (Bend Oregon) who is at the 8 year mark (oligo) and had no treatment (aside from surgery) until just this year. I saw him at the oncology center. He is doing fantastic it seems.

I don't understand where this 2-3 or 3-5 year number is coming from. Nobody (be it a patient or family member) I have spoken to has succumbed to this type of tumor that quickly.

dave f
Posts: 1
Joined: Jun 2011

Hi Cindy

I am a patient here in the UK fighting a Grade III Oli in my right temporal lobe. I was originally diagnosed in 1998 (when I was 34 and had 1 child with 2nd due in a few months)following a grand mal in the middle of the night. The powers that be decided to leave it at the time... and i had no other problems for 7 years until October 2005. Then it heamorrhaged. I was taken into hospital and had surgery to take out 95% ('size of a lemon') of the tumour. It was now graded IV.
I had radiotherapy followed by chemo (temozolimide) which seemed to have minimal impact on me and i continued to work in central London. In Oct 2008 it came back and i had further surgery, gliadel wafers and then PCV chemo treatment. This time it had a bigger impact on me and it has taken some time to get back to 'decent health' (for a brain cancer patient!) again. - Now i am cycling, walking, swimming to help recuperate and build muscle and doing pretty much most things. Although I am not allowed to drive (past 2.5 years) which is a real drag!
I am not working - i spend 100% of my time with my family looking after myself and getting myself stronger.
I am now 47 (13 years on from original diagnosis - girls now 15 and 12!). I am on regular 2/3 month scans (MRI and PET) and there is something the consultants are keeping an eye on and will want to treat although until my next scan in sept. So I have the summer to look forward to which is great! Onwards and upwards! :-)

So - be positive, be strong and we can win this fight!

Hope this is of some help,
Kindest regards
David

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Well, hello, David!

Your message helps me so much! I am always so happy when I hear of a victory story like yours! So happy for you, and so encouraged about our situation!

It's been a little over 2 years since David was diagnosed, and he's doing so well! I can feel hope building in me for David's future. I still am battling the fear, but mixed with that is a growing hope that David can beat this, with God's help. I do believe with all of my heart that David is doing this good because of God's hand on his life.

Thank you again for your so very welcome post! I really appreciate your note and your encouragement!
Love and blessings to you,
Cindy in Salem, OR

mirjo
Posts: 1
Joined: Jun 2011

I was diagnosed in 1998 with a right frontal lobe oligo when I met with the surgeon, he offered a best-case of a 10 year survival rate. The radiation oncologist offered five. Neither was acceptable to me since I had two small children at the time and couldn't bear the thought of leaving them to grow up without me. Fortunately, I was referred to a brain tumor treatment center that didn't offer numbers, just good long-term survival rates with that particular tumor and the treatment regimen they used. Chemo & radiation turned out to be the one-two punch it was promised to be and I have been in remission since 2000. Everyone is different and therefore responds differently to medications, but medicine is really a whole lot of guesswork, backed by a little but of science. If you think about it--all the things we know to be medical facts now, came to be because someone took a chance on a wing and a prayer and determined it to be so.

Temodar came on the market near the end of my chemo cycles, so I was never given it. Don't ever be afraid to seek a different doctor,if you feel you aren't getting what you need from the one you have. I don't mean you should doctor shop for the diagnosis you want, but they all have different opinions about which meds to use or try. Temodar, which seems to be the preferred option these days, may not be effective for everyone. There is no reason you can't pose that question.

I wish the best for you and your son.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you so much for your post. I can't tell you how much it helps me and encourages me to read posts like yours. When I feel terrified about the future, I re-read these posts and it helps me to regain my strength and hope.

We are thanking God for David's continuing good reports and are beginning to have hope for a long life for David.

Thank you again--love and blessings to you,
Cindy in Salem, OR

penzo
Posts: 3
Joined: Jun 2011

i am new to the site and i read all the postings when posting about my brother this morning - I read that NO Dairy and double checking for food with hormones and additives and staying away from them helps? There are some wonderful positive experiences that help when trying to deal with this disease! Thank you all

penzo
Posts: 3
Joined: Jun 2011

Mirjo - i have just seen your posting and am very grateful for your insight and advice. We are from Africa but I will certainly look into Temodar treatment and question the Doctor further. Sometimes we lay people are too afraid to question the Doctor.

penzo
Posts: 3
Joined: Jun 2011

I have a brother who was diagnosed with an oligodendroglioma at the age of 45 - he was completely asymptomatic until he had a seizure when out one evening having dinner. They operated and removed the tumor - he underwent Radiation for 7 months. The last six years he has been absolutely fine taking only epilepsy medication. Last week he went for his annual check up and they found a new tumor - he had the surgery this morning and the Surgeon said it was very agressive grade 4 - can any one cast some light on prognosis with this second tumor?

ravibalgi
Posts: 6
Joined: Nov 2011

hi penzo,

i am so sorry to hear about tumor recurrence. how have the tumor blocks responded to 1p19q co-deletion tests. they tell about how sensitive will one be to the chemo as also the prognosis of AO(Grade 3) AOA(Grade 4) tumors.
here is one article that you may find with little information. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007104/pdf

i pray and wish for your brother's recover and pray that he is able to get well and strong

anvar
Posts: 4
Joined: Oct 2011

hi people my brother has oglidendrioglioma 3rd grade, he is actually treated in germany
he is just 19, and i don't want to lose him because i love him too much. i am ready to do everything for him, can u please give me information, about treatments avilable and treatment are being prepared?
i would really appreciate if you hel

Anvar Mahammad

luvs2run's picture
luvs2run
Posts: 8
Joined: Oct 2011

Anvar, I'm sorry to hear about your brother's diagnosis. I was diagnosed with the same thing in June. My neuro-oncologist told me that if you have to get brain cancer, this is the best one to get. This is a slow growing tumor, and depending on the genetic profile of the tumor, can be very responsive to chemotherapy. You brother should make sure that they do genetic testing to determine if the 1p & 19q genes are deleted. If so that is very good news and the tumor will respond to chemo. Typically they will try to remove as much of the tumor as possible (if they can get a total resection that is also very good news). Since there are always so cells remaining, most doctors will recommend either radiation, chemo or both for a grade 3. I had a total resection and was lucky to have the deletions so my doctor only recommended chemo, which has been very tolerable. My doctor told me that although it is likely that the tumor will return some day, that I should expect a very long life and that if the tumor returns we'll treat it and "reset the clock again". My advice is to ask lots of questions of the doctors, don't be afraid to get a second opinion and to encourage your brother to keep a positive outlook. I wish you and your brother a very long and happy life.

Dave

sadinholland
Posts: 226
Joined: Apr 2011

Wanted to bring some good news and hope to this topic. My husband had his MRI after being on chemo for 1 year. 21day cycle for 6 months and 5day cycle for 4. There is no sign of a reoccurance! Praise God! Like Cindy's son David, my husband as very little side effects. Just a small bit of short term memory loss. Keep the faith. I think having a positive attitude, as my husband has had the whole time, is what keeps him doing so well, and God of course!

anvar
Posts: 4
Joined: Oct 2011

thank you very much Dave you can not imagine how much thankful
you really encouraged me, i wish happy long healthy life for you
God bless you, and i wish that it never appears again

Anvar

rangel
Posts: 1
Joined: Oct 2011

hi everyone
i just have a few questions my boyfriend was diagnosed aug 2005 back than we had not meet yet we just meet in august 2010 started dateing this pass june 2011...i have known about his cancer AA grade 3 since we meet...he is by far the most amazing man i could go on forever bout him but my question(s) is how long can one live i have read the 2-3 yrs some 5 ...he did chemo and radiation when 1st diagnosed but no surgery as the he has 2 tumors one the drs will not be able to get the other only a 30% chance he would make it some he decided no to do it.....he lives on meds..has good days bad days days he doesnt move cause the pain is so bad but also amazing days i know i am blessed he has made it to 6 years but im wondering how long some of you or your family members have he is just 40 im 32 and i always joke we have to make to 60 and 52 but i think i know that is not a real plan.....we enjoy each day we are giving and make memories with my boys and i make sure i am always taking pics...any advice i would love thanks

ravibalgi
Posts: 6
Joined: Nov 2011

Hi Cindy,
My Aunt(44) too has been diagnosed with anaplastic oligodendroglioma. After her operation, she was put on a RT+ PCV which happens to be a very good post operation treatment for such rare form of cancer. Here is a Cochraine link, which also verifies the same.
http://onlineclibrary.wiley.com/doi/10.1002/14651858.CD007104/pdf

The reports for FISH evaluation for 1p19q co-deletion are yet to come and we are waiting for it. She did not show any signs of loss of fine and gross motor skills, memory. She is weak due to the huge medical procedures that she had to grow through. We are hopeful. So should you be.
We are companions. Thank you for sharing

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Ravibalgi.

I'm sorry that we are linked by such a bad situation, but I appreciate your greeting.

We too are hopeful but it's been a rough few months for us. After being cancer free for over two years, David's tumor reappeared and has grown rapidly. You can see some of what we have been through under the thread entitled "our ordeal...sorry it's so long." It is a long post, but a lot has been happening in a short amount of time.

I've heard of PVC...David hasn't taken it yet. He started out on Temodar (after surgery and during radiation, then two years after radiation) and he just now started carboplatin and toposide and melathon. He's only had one treatment and we are waiting to see how David will respond. He has an MRI on 11/28.

I'll be praying that your aunt's FISH evaluation is favorable. Thank you again for your note.

Love and blessings,
Cindy
PS I posted pictures in the "expressions" area on my csn space if you'd like to put faces to our names. :)

anvar
Posts: 4
Joined: Oct 2011

hello
i would like to ask that is it normal to loose memory and logic
after brain surgery? because my brother lost memory, logic after 3 surgeries and even 3 months passed (with chemotherapy and radiotherapy)and it came back only a little?\

I would really appreciate if you help

Anvar

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

Hi Anvar,

I had surgery in September for a grade II oligodendroglioma. I have not had any further treatment but I am having similar issues. I have a hard time remembering details and what my GP calls sequencing of events (what task comes next). I have trouble concentrating and comprehending information. I tried to make rice crispy squares and burned then. WHO BURNS RICE CRISPY SQUARES!?!? They are so easy to make. I also had trouble following simple directions to make pancakes for me niece. I just stood there and stared at the cupboard. When this happens I get really overwhelmed and give up. I don't have much confidence to do things that I have in the past few months screwed up. I could not follow conversations at a Christmas party and looked like a fool when everyone laughed at a joke and I didn't get it. My GP says it is not necessarily the tumor but the actual craniotomy because they cut through all of the nuerons and "brain connectoins". My GP told me to listen to Mozart to help with memory and do crossword and word searches at a grade 5 level. She told me to set small goals throughout the week such as putting the dishes away one day and putting away laundry then next. This will give a sence of achievement and not tire the brain to the point of having trouble functioning. I have good days when I think everything is great and then I do too much (like clean the whole house) and then get physically tired and cannot put the steps together to make dinner. I am awaiting a neuropsych assessment to target the exact issues I am having and the type of rehab I need to do to get it back. They say it all takes time but it is very frustrating! My independence is gone. I cannot drive and taking the bus is an issue. I am a Medical Secretary for three doctors at a hospital and I am not able to return to work. I used to work full time and go to some type of exercise class three times per week. Now I am trying to do a bit at home and have to function around other's schedules for help. They say it will come back with time but a neuropsych assessment might be helpful. Hope this helps.

ChrisMFL97
Posts: 2
Joined: Mar 2012

Websterbr,

I had a grade III anaplastic oligodendroglioma removed from my right parietal lobe 15 years ago, followed by radiation. I still remember being overwhelmed by some tasks in the months after surgery and radiation, and experiencing sensory overload when there was too much conversation, noise, motion or light around me. My brain would seem to shut down, I would become exhausted and wanted to get somewhere quiet. With time this improved greatly. I also couldn't do puzzles easily, and could only do them based on shape, not color. Over time the neurons reconnected as I did more mental gymnastics and physical exercise. Given the location doing some exercise that shifted weight from the right to left foot (like tennis or golf) helped very much. My doctor stressed staying physically and mentally active, but paying attention to my body and taking time to rest as needed.

Stay positive, the brain has an amazing ability to heal and reteach itself. It just needs the right stimulus!

Regards,

Chris

Howee
Posts: 1
Joined: Jan 2012

I'm 26 same stuff diagnosed when 21 had surgery' radiotherapy, injected chemo, and now the temodar cycle.
Have had my second surgery after 4 years. So last year. (how many surgeries can one have for this cancer, I would like to know)

I gone through very bad times and at the moment feel on verge of losing it. I feel my parents no longer love me or care about my wellbeing and feel trapped in their house as I cannot work and move elsewhere. recently they even admitted since I no longer have value of earning money for their old age they treat me worse. They don't understand I have cancer and in particular my brain is broken, I have OCD and really short term memory.

Back to subject my doctor wouldn't tell me beyond 5 either. But I have survived so far, it's just so difficult not knowing how long, and whether I should try and for example train to get a job, make new friends, save money,etc. After my diagnosis and initial treatments, I have been optimistic and had started a university level course in law as well as continually looking for a job. But now I have all but given up now since my second surgery.

Although I don't often read about, constipation has been a real problem of mine aswell. Since diagnosis I have tried to eat as I like kind of way, not terrible food just tasty food. But unfortunately it does seem a diet of excessive fruit and veg is the best hope to prevent some of the bad episodes I have experienced.

Sorry if my writing doesn't make sense, English is my second language I am dyslexic and have a part of my brain missing.

connsteele
Posts: 232
Joined: May 2011

My heart goes out to you. You see, I am a parent, and along with my husband, primary caretaker of son, who is 34. He has grade 3 anaplastic astrocytoma, diagnosed last April, and can no longer live independently. So, he had to give up his independence and move home with us, which was one of the hardest things for him, and us, to accept.

I can't imagine that your parents don't love you anymore because you have cancer, and have to live with them and can't get a job. Everyone has good and bad days, and I think that when they said that, it must have been one of those bad days.

We love our son beyond comprehension. But we have bad days too. Our son's docs have said that his cancer won't go away. so there are no good options. We retired in 2008, and had big plans for our retirement. Now, that has all changed. Of course, we wish we had our life back, to travel like we did during our first two years. So, it's natural to wish this would all go away so we could return to our former life. But then the reality sets in: if that happens it means our son will no longer be with us. And that is just too painful to think about. So, like I said, there are no good options. The best we can do is to try to enjoy and savor the time we have with him.

Have you tried finding a brain tumor or cancer support group? Or seeing a counselor who specializes in counseling cancer patients and their families?

Good luck to you. Hope things get better.

JVS12
Posts: 3
Joined: Jan 2012

I am 2.5 years out from my surgery, and the most recent MRI showed no evidence of a tumor recurring. My current neurosurgeon put me on a two-year recall for the MRIs, for which I am grateful.
I had a craniatomy in July 2009 to remove a large anaplastic oliglodendroglioma from my left frontal lobe. Because it was stage III and also because I had the gene defect, I did the radiation and the Temodar, followed by six months on Temodar.
My scans since the surgery have all been clean, but I did suffer from daily headaches up until last summer when I tried acupuncture. Since late fall, I have far fewer headaches, and the remaining ones I attribute to seasonal allergies.
My original neurosurgeon who removed my tumor did tell me about the statistics, but he also said statistics are not people, and individuals can out perform average life expectancies.
I chose to believe that, and returned to work just 12 weeks after my surgery.

rachelgreene
Posts: 1
Joined: Feb 2012

Cindysuetoyou--

I am very sorry to hear of your son's diagnosis, but I hope that my comment here can give you even the faintest glimmer of hope. My mother was diagnosed in 2004 with an anaplastic oligodendroglioma, right parietal. Very long story as short as possible: three resections, massive radiation and a few rounds of Temodar. She did have the 1p/19q gene deletion but wasn't able to tolerate the chemotherapy or her prognosis would most likely have been even better. She made it eight years almost to the day of her diagnosis. We were told initially 2-3 years would be what we should expect. She showed them! Please don't give up hope. (I apologize, I just found this thread. I hope that my timing isn't bad.)

Attitude means so much when battling these things. My mother never gave up hope, never stopped fighting. She refused to give up on any level. Her doctors were baffled by how strong she remained and how hard she was able to fight.

I hope in some small way this helps.

Best wishes to all of you, God bless you.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Rachel.

Thank you for your note. I'm sorry that I didn't reply sooner.

I'm really sorry that you lost your mom. It must have been a really rough road for you. I know I'm hating the road we are on right now....

Thank you for sharing about your mom and her eight years. I hope it works out like that for David....I hope it's even longer...but he does not have the gene deletions and most of the doctors that we've seen have told us that not having the deletions really impacts your survival time. I hope that they are wrong in David's case.

They say that the gene deletions make the tumor more sensitive to chemo, but David doesn't have the deletions, yet he had a very favorable response to the last chemo treatment he had in December, so maybe he will be lucky and his tumor will be more sensitive to the chemo than the doctors think. We will see..he will do more chemo as soon as he recovers from the ordeals we went through in December and January. I am afraid that the tumor is growing unchecked while we hold off on doing chemo, but there's nothing we can do about it. We cannot put David through another chemo treatment until he recovers.

Thank you again for your note, and again, I am very sorry to hear that you lost your mom to this terrible, terrible disease.

Love and blessings,
Cindy in Salem, OR

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

Hello Cindy, I am BenLenBo's mother, was viewing his site, and found you. I have a few questions about the type of Oli your son had. Where on his brain? and did David have the
1p19q deletions? We have been through so much as a family when Ben was diagnoised, first
neuro-surgeon from Mayo said 6 months to 3 years. His biopsy was done at Mayo, then was forwarded on to John Hopkins, for diagnoises. This took 6 weeks, felt like a lifetime and we were fighting time we thought. John Hopkins performed a Molecular Genetic Study - and was diagnoised with Grade III Oli with 1p/19q deletions. 99% of his tumor was removed from his left frontal lobe, he suffered no side effects. About 7 weeks out, he started having fluid build up on his forehead, which was releaved by placing a shunt, in and out of surgery (scary). But, were told they do this with newborns. He started 30 radiation and daily temodar while receiving treatment. 1 month out MRI showed no cancer present, but then no tumor was present on MRI right out of surgery also. Ben is presently, taking Temodor, larger dose 5 days on, 28 days off for the next six months as a precaution. Also
will have MRI every 3 months, then six months after two years. We are doctoring at Roger Maris Cancer Center in Fargo, ND. They are affiliated with Mayo and John Hopkins, his doctors only specialize in one area, but work together. They make us feel like family :o)
I as a mother, worry, has this been to easy? Will we have a surprise coming? I have read a few posts- I pray for strenth for your son to conquer this cancer and live a long long life. Carol

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello, Carol.

My son's oligodendroglioma was/is on his right frontal lobe. David did NOT have the gene deletions, and when our doctor told us that news, he said that it really impacted the estimate they gave us for his median survival rate. They gave him three to five years. He was diagnosed in May of 2009 so we are nearing the three year mark.

Please forgive me...my memory is terrible these days...but I think that when he was first diagnosed, they thought he would probably have the gene deletions, and I'm pretty sure that they told him that he would most likely not face a recurrence for 15+ years. But I just am not sure if I remember that correctly. That was almost 3 years ago, and I have been so stressed and have had so many different things said to me that I am not sure if that's right.. I do know that the gene deletions are believed to be a significant positive prognostic indicator, so I am very glad to hear that your son has the deletions.

David took Temodar for two years. He skipped two months---May and June of 2011. He skipped May because he was taking college finals and he didn't want "chemo brain" to mess up his scores on his finals. Then he had an appt with a specialist in June about his stomach issues and he didn't take Temodar in June, to see if that would impact his stomach problems. The first week of July, he had two seizures, on the 3rd and 7th. They did an MRI and that's when we found out about the "disease progression." Translation: recurrence.

David asked his NO in May and in June before he skipped the Temodar, and both times, his NO said that since he had been on it for two years, he had enough in his system that he would be okay with skipping it for two months. His NO said that most doctors won't keep you on Temodar more than 2 years anyway. When he had the recurrence, his NO said he would have had it even if he'd taken Temodar those two months. And NIH said the same thing. But I will always wonder...what if he hadn't skipped those months? Would he still be cancer-free? Our NO had told us before that he would keep David on Temodar for as long as SEVEN YEARS...if David could tolerate it. Well, now we will never know, because we are far beyond the use of Temodar. We've moved up to the really nasty chemos...carboplatin, etoposide, mephalan.

You said that as a mother, you worry....has it been too easy? I don't know....but I think that it's great that you are starting off on this road (this road being the battle against brain cancer) with your son doing so well. I had a physical therapist tell me something that I quote here on CSN all the time....you will find that your days will be like the weather...some days will be sunny and bright and everything will go great, and some days will be dark and gloomy and rainy. But just because one day is dark and bad doesn't meant that tomorrow won't be sunny and bright again. Our personal battle has been full of the most terrible low times, followed by incredible highs and great news. I am slowly learning to live one day at a time.

I think that the three best prognostic factors are 1) getting as much tumor removed surgically as possible. 2) a younger age at diagnosis 3) the 1p/19q deletions. You didn't mention how old your son is, but I'm thinking he's in his 20's? If so, then you have all three of the most important factors in your favor. Even if your son is in his thirties, that's still young enough to be able to fight hard and resist this disease and also to be able to tolerate the treatments.

Please hold on to hope, and keep us posted here at CSN.

Love, blessings, and peace to you and your son, and your entire family,
Cindy in Salem, OR

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

Thanks for responding so soon Cindy. I find this site frustrating sometimes, reading through all the different stories. Each area of the country seems to tackle brain cancer with their own agenda. Benjamin's story is under his profile, along with a picture. He was the picture of health before and still looks the same, except for the mohawk under his baseball cap. Benjamin has gone back to work full-time, enjoying ice-fishing at Lake of the Woods, and hanging with is family and friends. This has really drawn our family closer, and we were a close family to begin with. His doctor's are amazing, and so positive all the time, one even comes into the room with a huge smile on his face. Staff has be outstanding, and treats everyone like they are special. His Chemo/Doc is Ped/Onc originally from Canada-wonderful, we couldn't have asked for better.

Like you, doctors do make the difference, glad our first Neuro/Surgeon was totally wrong, the replacement has been nothing but positive. I've learned like you to take it one day at a time, and ask questions until I get the right answers, because my son would not ask one question. My daughter who is having her first child this summer, grilled his doctor's for over 40 minutes on this first few meetings. They answered all questions until she was
satisfied. We go to all his appointments as a family, watching individuals going through this on their own is heartwrenching. A hug goes a long way!

When did your son start having seizures? Neuro did an EEG on Ben shortly after surgery, and are planning on doing another in about 2 months. He had surgery siezures- little
electric charges- being controlled by Keppra, but is to come off that drug, because he has had no siezures since surgery- precaution by Doctor's.

Also, did your son take a Motion Sickness Med 20 minutes before his Temodar, and after a meal and before bedtime? That has been our routine! Hope David is going better today, will keep him in our prayers and added him to our prayer chain.

Benjamin say's HI!

Carol

Carol

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Carol.

I find this site frustrating too! Right now I am reading through a bunch of posts, trying to see how some people are doing...I haven't seen posts from them for a while. I wish there was a way to search for just their comments so I could see when they posted last, and what they said. That's one of the hard things about this site....people suddenly stop posting and you don't know why. I'm afraid of why some of them stop posting....

David started having seizures in July of 2011. He had two pretty bad ones in his sleep, and after the second one, we took him to the ER and they did an MRI and told us that they saw "disease progression." That's doctor-talk for "more tumor." We were absolutely devastated. It's been a rough road for us ever since.

David took Zofran with the Temodar. He didn't always take it because it made him pretty tired. Overall, David tolerated Temodar pretty well. He hated the "chemo brain" effect the most. It made it hard for him to work--he worked for Apple, selling and troubleshooting Apple products...iphones, iPads, laptops, all their products and apps. He loved it. He had to quit back in July though, once he had the recurrence. Chemo brain from the Temodar also made college hard for him too, but he stuck it out for two years, until the recurrence. The recurrence really changed his life a lot.

Please tell Benjamin hello for me too! And tell him that I hope he catches lots of fish when he goes ice fishing....I love to fish and I think ice fishing sounds so fun! :)

Thank you for your prayers for David....I will continue to pray for Benjamin also!
Love and blessings,
Cindy
PS can you ask Benjamin to check out this link below? It's a cool YouTube video of fishing under ice. I really liked it!

http://www.youtube.com/watch?v=VIs00QjiJZQ

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Carol.

I find this site frustrating too! Right now I am reading through a bunch of posts, trying to see how some people are doing...I haven't seen posts from them for a while. I wish there was a way to search for just their comments so I could see when they posted last, and what they said. That's one of the hard things about this site....people suddenly stop posting and you don't know why. I'm afraid of the reason why some of them stop posting....

David started having seizures in July of 2011. He had two pretty bad ones in his sleep, and after the second one, we took him to the ER and they did an MRI and told us that they saw "disease progression." That's doctor-talk for "more tumor." We were absolutely devastated. It's been a rough road for us ever since.

David took Zofran with the Temodar. He didn't always take it because it made him pretty tired. Overall, David tolerated Temodar pretty well. He hated the "chemo brain" effect the most. It made it hard for him to work--he worked for Apple, selling and troubleshooting Apple products...iphones, iPads, laptops, all their products and apps. He loved it. He had to quit back in July though, once he had the recurrence. Chemo brain from the Temodar also made college hard for him too, but he stuck it out for two years, until the recurrence. The recurrence really changed his life a lot.

Please tell Benjamin hello for me too! And tell him that I hope he catches lots of fish when he goes ice fishing....I love to fish and I think ice fishing sounds so fun! :)

Thank you for your prayers for David....I will continue to pray for Benjamin also!
Love and blessings,
Cindy
PS can you ask Benjamin to check out this link below? It's a cool YouTube video of fishing under ice. I really liked it!

http://www.youtube.com/watch?v=VIs00QjiJZQ

randolphlee
Posts: 1
Joined: Mar 2012

I have spent all morning reading everyone's posts. My prayers will now be with you also. My spouse was diagnosed a couple of years ago with a Grade 3 Oligo with 1p and 19p deletions and that is where most of the similarities stop.

My spoouse (50) was unable to have SX due to the size of the tumor--lemon size on the right temporal lobe. Chemo started and completed first--@18months of Temodar, a couple of months break and then 30 sessions of radiation (not whole brain). MRIs are now every 3 months since completion of radiation.

Is there anyone else who is going through this and NEVER had SX? My spouse continues to work, drive and is somewhat living a normal life.

LuvmyJeff
Posts: 8
Joined: Feb 2012

Does SX mean removal/resection? My husband was diagnosed in May 2008 and couldn't have surgery due to the location of his tumor. 4x2x3cm on his corpus callusom. Too deep for removal. He did 6 weeks of radiation and chemo and nothing since. He was however on high doses of steriods (Dexadron) and that caused Cushing Syndrome which almost killed him. Congestive heart failure, blood clots, etc. However, since they got him off them, he has been steadily getting back to his old life. Driving, working, golfing, mechanicing etc. I was worried about his last MRI on Mar 19, 2012 but it came back perfect!!!!! I was so relieved! So now we are just going to keep doing what we do, looking forward to our daughters graduation in May, and a possible move to Vancouver Island.
PS-- My husband was 42 years old when he was diagnosed, the only symptoms he had was mild confusion, paranoia, and dizzyness. Never had seizures (THANK GOODNESS! They sound scary!)He also has Grade 3 Aniplastic Oligo and we don't know if there is the deletion.

gdowns
Posts: 1
Joined: Jul 2012

Hey Cindy,

I was diagnosed last year with a grade 3 oligodendroglioma, had a partial resection followed by 12 months of temodar, and I was "lucky" enough to have the 1p19q deletions.

16 months now since my one and only seizure, just had an MRI last week and it looks good (says my neuro-oncologist).

How has David dealt with independence (or lack thereof)? I'm heading back to school in the Fall and I'm extremely worried that something is going to happen in this next year. I'm moving away from home again for the first time in 3 years and it's nerve racking.

JDRinAz
Posts: 2
Joined: Apr 2012

There is a guy out there that is 12 yrs out and still going

JDRinAz
Posts: 2
Joined: Apr 2012

I have been dealing with the different stages for 20 yrs. Don't get involved with Dr's predictions please! Good Dr's won't predict. They are wrong all the time. Find great success stories, and live based on those. I was told 5 yrs originally, so I spent 5 yrs getting ready to die. Patients are heros---just go be one of them.

amyshait
Posts: 1
Joined: May 2012

first of all happy mothers day.

I live with a man who at 36 was dx with a grade 3 oligo
same tx with radiation and surgery and temodar, as your son.

This June will be 5 years.
I am silently ecstatic, shocked daily and am truly amazed.
I never should have listened to a word the doctors said....
i wish i can go and forget their theories, none proved true.....

lalat
Posts: 1
Joined: May 2012

It very nice that you have posted regarding your son's condition here. I hope that he will be in his best of health as long as god's willing so that he can enjoy life as long as he could. Allow me to introduce myself. I am not a cancer survival but I am a neurosurgical trainee - in my final year. Dealing with cancer patient is one of the things i have to do everyday. Indeed anaplastic oligo is a rare form of brain tumour which I currently have one patient i just operated days ago. She was a bubbly charming 7 year old girl who presented to me for bleed in her brain. Fortunately, after her operation, she came out well without any neurological deficit. My worst fear came today as her histopathological report came back - anaplastic oligo. Her tumour was large and situated in the important areas that controls her limb movements (internal capsule) and what made it worst is that there is not much good plane between the tumour and the normal brain, so only a subtotal resection was achieved, in a bid to preserve her intact neurology - say 70-80% resection. I would prefer my patients to be happy with good quality of life, rather than complete excision but at the expense of compromised neurology.I now know that she need radiotherapy and chemotherapy as the next step of treatment.

Obviously, and naturally will come the next question from the family regarding the prognosis or life span... how long is her life? As some of you pointed out, whatever answer we give is based on the evidence gathered from numerous studies and articles and yes, statistic. Progression free survival, overall survival, median survival are just numbers calculated from the data collected from the studies and it actually give us an idea regarding whatever data we are looking at, so we will have a overall picture of what to expect from the natural history of the disease progression. But this doesn't mean that the numbers are the whole truth. In medicine, there is always exception. Yes, there are few numbers occasionally, patient live beyond the number of years stated in the statistic and its actually good news. For me, there is always hope. If you don't try anything, all hope is loss, its better to try and fail rather than to fail to even try.

Medical field is advancing day by day with more and more research result coming out, findings of a new therapy for certain illness, and naturally the treatment option for certain illness will increase the outcome of our patients. I don't think doctors are here to dictate how long you can live if u have certain disease but i belief, we are here to inform you what the medical field has found today, to inform you the current information regarding the disease and its treatment option with the expected result. The results will never be the same in some illness as things improves over time especially when the tumour research has gone into molecular genetics. But have in mind, that research takes years to bear result. Its because of patient, that a research could be carried out for the benefit of future patients. The hero is actually the patients.

I take great pleasure reading from this forum so that hopefully i can view a illness from the patient's perspective and see to the needs of patient and their family.

I felt obligated to voice out my opinion when i saw some reader commended on not to believe what a doctor says. He/she may be frustrated at the advice of the doctor regarding some information citing that the knowledge is outdated due to old statistics but i am sure the doctor did his/her best to inform their respective patients based on the best available data. From this, it struck me that I have to constantly be reminded that there is always new things in medicine for which i need to be constantly on my toes regarding any new valid information regarding any illnesses or i will be quoting the outdated information to my patients.

Anyway there is always hope and thanks all for sharing valuable information regarding the disease from the patient's point of view. Hopefully with these extras, i would be able to holistically render the best available treatment for my patient.

From a doctor's point of view, every patient is an individual and no individual is the same. Its really difficult to see my patient loosing the battle especially in tumour cases, even so when you know nothing much u can offer after battling the illness with whatever known medical ways has to offer. On the other hand, the smile and joy of a patient or their family is the best reward a doctor can have. That's what keep me going and THERE IS HOPE.

Hope for the best for you and family and all the rest out there. Cheers!!

feelinggood's picture
feelinggood
Posts: 27
Joined: Dec 2004

Still hanging in there:

1994: Presented with a seizure. Surgery for grade II Oligo with no further treatment- 18yo - Right frontal lobe - University of Michigan

http://en.wikipedia.org/wiki/Oligodendroglioma

2000: Surgery for grade II/III Oligo plus PC (without the V) chemotherapy. 1P/19Q deletions found University of Michigan

2004: Surgery for grade III Oligo plus one year of Temodar 5/23 - University of Michigan / Cleveland Clinic / Mayo Clinic

2007: Blood Brain Barrier Disruption program with Carboplatin, Melphalan and Etoposide Phosphate - Oregon Health and Sciences University / MD Anderson

http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/brain-cns-tumors/treatment-options/medical-therapy/blood-brain-barrier-disruption.cfm

2009: Brain Surgery at University of Michigan Hospitals – all visible tumor removed

2009: Proton Radiation at Mass. General Hospital

http://www.massgeneral.org/radiationoncology/AboutProtonTherapy.aspx

June 2009-October 2010: Vaccination clinical trial at University of Pittsburgh – Hillman Cancer Center

http://www.neurosurgery.pitt.edu/news/2006/tumor_vaccine.html

October 2010 - Gamma Knife Radio-surgery for focal recurrence - Hillman Cancer Center

August 2011 - Possible recurrence noted on MRI

May 2012 - Surgical removal at UCLA plus donor T-cell clinical trial

http://www.virtualtrials.com/pdf/ImmunotherapytrialNCT01144247.pdf

misskittycat68
Posts: 3
Joined: Jul 2012

Hi Cindy,

My husband at age 35 was diagnosed with the same tumor anaplastic oligodendroglioma grade 3( he was having seizures ) on his right parietal area in oct of 1998 it was ( they said completely) removed followed by six weeks of radiation. He had his first recurrence the end of april this year he will start re-radiation for six weeks and temodar for the full six weeks during radiation than they said one week out of the month for up to two years. Also back in 1998 they did not check for the deletions but this time they did and he only has one deletion on #1 . The studies they have done show most live a average of 11 years with both deletions but my husband only has the one deletion on #1 so I dont know what to think of that. They told us back in 1998 up to five years but its been almost 14 now so dont give up hope god bless you and your son!

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