CSN Login
Members Online: 7

Oligodendroglioma

Sybille
Posts: 2
Joined: Feb 2004

Hallo

I am intrested in people who are deal with the same brain cancer. My husband had surgery (about 90 % resection) in october 03 (oligo grade II/III) and than he had radiation therapy (36 x , tot. 60 gray) and now he is under chemo (Temodal). Fortunately he is very well, without any handycaps and pains. He can go to work and is all the time in a good mood... We live in Europe and I ask you if there is some hope for a long survival time?

Thank you for your answer and kindest regards and good luck for all.

Sybille

kathiempita
Posts: 3
Joined: Nov 2011

My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.

kathiempita
Posts: 3
Joined: Nov 2011

My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi Kathie,

I’m sorry to hear of your daughters recurrence. 12 years with clear MRI’s is a wonderful thing, but I can understand the disappointment in having it appear again.
Many new discoveries and changes in the way they do things I’m sure in the 12 years since she was first diagnosed!
My thoughts and prayers are with you and your daughter for a speedy recovery and every clear MRI in the future.

kwhipple
Posts: 1
Joined: Sep 2010

I had a seizure in Feb 10 and surgery August 5th with 95% removal of the tumor near the speech and motor areas where the Dr. woke me up to have me look at pictures and read to make sure he wasn't touching too much. I was able to get the best Neuro Surgeon in the world from UCSF to come and do it even though he was not on my insurance!! Afterward they found out it was stage II but I have about 5 Dr's in disagreement of what to do next. The radiologist insisted on that first and set me up for 30 treatments right away. Once my neurosurgeon found out about that he said no and that he and the Oncologist agreed to either watche it and have MRI's every 4 months or go ahead and start chemo for a year (5 pills a month). I am on Keppra and Dilantin due to a seizure while in the hospital after surgery. I was in the ICU for a week. Now am home recovering trying to keep my head up more and more. I am 45 with a husband and 2 teenagers - Not expecting this as we have a very busy lifestyle. The Dr's told me I shouldn't have the radiation now since I can only have it once and it would be better to have it later when it comes back in 10 years. Although the radiologist was extremely upset, we are thinking of just starting on the therapy. 3 of the Dr's said either watch it with regular MRI's or do just therapy now. Has anyone heard of only having radiation once? Now the decision is in my husband and my lap.

tommybear
Posts: 112
Joined: Oct 2009

Actually, I have had radiation once. I had surgery - partial resection in August 2009 and then stereotactic radiosurgery in December 2009. My doctors kind of gave me a choice, I could have gone without it for a while - I have a grade II astrocytoma and it has been slow growing.

I am only 39 and have two boys and one of the things that really made me go ahead and move on was that the doctors had said that the stereotactic radiation could take months or even over a year to make any difference - I guess the progress on the tumor has to do with the speed of the growth of the tumor. So, I wanted to try to kick it in the butt before it decided to take off too fast.

The stereotactic radiosurgery wasn't fun, but it was just one day. For a few days afterwards I didn't feel too well, and I have been okay since. About a month ago, I started having some swelling in my brain, which was causing headache, pressure, nauseau, confusion.... and my doc put me on steroids (which I hate!). I have been fortunate in not having seizures. I do have some "absence seizures", which really just make me goofy for a while. Anyhow, my doc says that the swelling is a pretty normal reaction to the radiation from last year....nine months later. It kind of looks like I have a cloud over a quarter of my brain from the swelling and fluid and he has said that the steroids normally will control the swelling within a few months. The tumor has not changed yet. It is a little enhanced right now, but the doc did say that was probably from the swelling.

So, I don't know if the radiation was worth it at this point. My hopes are not down yet about it making a change in the tumor....I will be so excited one day when they say it has shrunk!

I don't remember my docs ever telling me that I could only have the radiation once, but it seems that with the concentrated level of radiation with the stereotactic radiosurgery that it is less likely that I will have the radiation again anytime soon. I believe it would have to be in a more urgent situation, such as a higher grade tumor that would respond more quickly to the radiation. I haven't had chemo or anything else yet, either.

I should be grateful and normally am, but steroids suck and make me feel bad.

Hoping strength and peace for you.....

Michele S.

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

My husband also has had the partial resection -- 4.8cm to 5 mm. He did have his bone flap removed due to infection. Once that is replaced, the doc has mentioned possibilty of sterotactic radiation for him also.

However, I am wondering if Temodar is an option. My husband has to deletions and I have read this tumor is responsive to Temodar. Was that an option for you?

tommybear
Posts: 112
Joined: Oct 2009

I'll look into that. I have read a little about the deletions, but not sure if that applies to me. I wonder if my doc would know that off hand - it was never mentioned...4.8cm to 5mm is great! I can't remember exactly what size mine is right now, but they only managed to get out 25% of it. It wasn't huge - like the size of a large bing cherry maybe. It does have lovely extensions from what I understand though, that's what the problem was was the resection.

Thanks for bringing that to my attention about the deletions. I'll definitely have to do some research....

Take care....

Michele

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

I just wanted to share what we chose for David's treatment options. We got 3 different opinions. David (my 26 year old son) had an oligodendroglioma, grade III, without the gene deletions. We went to Fred Hutchinsons in Seattle and they told us to do radiation OR chemo, but not both. They said to save one of those treatments for when (not if, thanks a lot for that) the tumor returned. Said that we should not use up both of our best weapons right off. We came back and told our original oncologist what Hutchinsons had said, and he was not happy. He said that he really, really wanted us to do both, and he did not feel that we had the option to do just one, especially since it was a grade III without the gene deletion. He also said that the combined treatments had a synergistic effect...they amplified each other's effectiveness. So we were in so much turmoil. We decided to get a third opinion...from UCSF. They agreed that we should do both, so we did.

Every case is different, but I just wanted to share our experience. One of the hardest things for me personally is how all these experts--the best of the best in this field--don't agree about so many things. I guess it just goes to show you that no one really knows for sure...they don't know what is the best treatment, and they don't know what the final outcome will be. And they sure don't know when anyone will live or die.

For what it's worth...if we were closer, I think we would be going to UCSF. I was very happy with the way they treated us, and they have an outstanding reputation.

Love and blessings and peace to you,
Cindy in Salem, OR

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

I was just rereading the posts on this topic and I see that I didn't post here in this topic, that David's MRI was totally clear. No growth, no changes, nothing there except the cavity that the tumor/cyst left, and some scar tissue. I am thanking God every night, on my knees, with lots of tears, for this good report.

I believe with all of my heart, that if this can happen for us, it can happen for you. We were given such a bad prognosis. The dr and his staff are really pleased with how good David is doing. I think they are surprised. I know this isn't what they expected.

We don't know what the future holds, but we are learning to take each day, one at a time, and to be grateful for the time we have.

I pray for all of you on this board, every night, that God will bring peace and strength to all of you who are fighting cancer, and all of us who have loved ones who are battling. Please stay strong and hold on hard to hope.

Love, blessings, peace, and healing to you,
Cindy in Salem, OR

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

My husband was diagnosed in March at 36 yrs old- go read my Don't get discouraged post.

We originally weren't given the best prognosis, however he proved them wrong.
His scan was also clear (we just got the news on Wednesday) !

Don't give up !

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

Hi, Stacey.

I just read your "about me" section. I just wanted to make a comment about your treatment with radiation, and not doing chemo ....

You mentioned two things that I think are very important positives. One, that your tumor was a grade two. (David's was a grade 3.) And that you had the gene deletions. (David does not have the gene deletions.) Those are two very important factors in your favor. In your comments, I read that you had radiation with no chemo and you hoped that it wasn't the wrong thing to do. If David's tumor would have been a grade two with the gene deletion, we would have done radiation or chemo, but not both. Our doctor was letting us pick which treatment we would do...until the FISH report came back and showed no deletions. After getting the report, our dr. very strongly recommended that David do both because of the grade and the lack of the gene deletion. We got a second opinion from Fred Hutchinsons in Seattle, and they thought we should do one or the other, but not both. So that was very hard for us....we ended up getting a third opinion from the University of California at San Francisco, and they also thought that David should do both, so that's what we finally decided to do.

A side note.....here's what happened to us when we first started on this journey: when David's tumor was removed, the neurosurgeon warned us that nothing was for sure until we got the pathology report, but the frozen slides showed that it was a benign tumor and David wouldn't need any further treatment. We were all so overjoyed and happy! Laughing and crying and hugging each other in the hospital's waiting room. We went home from the hospital five days later, and we planned a huge bbq with all of our friends and family to celebrate the good news. Two days before the party, I called to confirm our appointment time to go over the pathology report and they told me that we didn't even have to go up to Portland (an hour drive) to get the results. We could just call the next day and they would talk to us over the phone. The next day, (the day before our party) we called the first thing in the morning--put it on loudspeaker so all of us could hear the good news--and they said to come up to Portland immediately. We begged them to tell us why but they would not....they said that we needed to meet with a doctor. We hung up, and David and all of us (my husband, our 3 other kids) started weeping. We knew it was bad. So we went up there and they told us and it was the worst thing that ever happened to any of us.... that they were sure we would lose David in the very near future.

Well, I won't go into all the details but I will say that the first part of all of this "new normal" life was very, very hard. We were all brokenhearted and terrified for David. (I cried every single day for over a year...by myself in the shower, in bed at night, when I was alone in the car, out in the woods when I was riding my horse....but not in front of David.) But little by little, we went forward, and he recovered from the surgery, then he did the radiation and recovered from that (took a little while) and now he's doing Temodar and he is learning how to deal and cope with that. And in the meantime, I am reading about more and more people who are beating the odds and surviving....and living well.

I just wanted to tell you that for us, it got a lot, lot easier. The first 9 months were just so hard...so many unknowns. I did not believe it would get better. I just thought that things would go downhill, but it hasn't been like that at all. It's so much better now. I cannot believe, looking back a few months ago, how far we have come. I hope that hearing this from me will help you and give you some encouragement.

I believe that it's critical to keep as positive as possible and to keep a fighting mentality. David said that he does not believe that he is going to die any time soon and he is not going to live like he is going to die soon. He went back to school for his Bachelor's degree and he moved up to Portland and he's back at work (part time) and he's riding his bike all over, and working out at the gym and playing basketball and doing things with his friends and family. Just living life...with a lot more appreciation.

I'm grateful for our doctors and the nurses and all the high tech stuff that they can do, but I am putting my trust in God. I thank Him every night for how good David is doing. I believe with all of my heart that His hand is on David and He is preserving David's life. I am so grateful for God's mercy and grace on David and on our family.

I've been thinking of you and praying for you, Stacey. I hope that hearing about David and what we have experienced and where we are now will be at least a little encouraging to you.

Love and blessings and peace and strength and healing to you,
Cindy

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

That is such wonderful news, Bassystacey! I have been checking this site every few days to see how you are doing. I've also been praying for you every night too. I am just so happy to hear that your tumor is shrinking!!!

Please let us know what you decide about the chemo. We didn't have an option in our situation....David's was a grade III without the gene deletion, and our doctor STRONGLY advised us to do chemo AND radiation. I am glad we are doing that. I agree...we want to fight with every weapon at our disposal and kick --- too! :) BTW, I don't know what type of chemo you would take, but if it's Temodar, you stand a good chance not to lose any more hair. David lost his hair during radiation but it came back even though he never stopped taking the chemo.

Keep fighting hard and keep being positive!

Love and blessings to you,
Cindy in Salem, OR

j_waffles
Posts: 22
Joined: Jun 2010

Stacey,

Good to hear about your Oligo shrinking. Just like you, I'm young and have a grade II Oligo with the co-deletion... plus I'm also single and live in Illinois (Chicago though, which I know is way different from Carbondale). Sounds like the radiation is already doing the trick, but I'll agree with cindysue to say that if you do Temodar, you won't lose hair. Co-deletions respond well to Temodar, or so my doc says. But Temodar + radiation can result in hair loss, I think.

I'm just on the Temodar (round 5 for November), and I've never had hair loss. Because of the size of my tumor (look in my expressions if you want to see how big it was before surgery), I can't do radiation because it would do too much harm to good brain cells. I have another scan at the end of this month, so here's hoping my results are as good as yours!

Good thoughts and vibes to everyone on here, including cindysue. I like hearing good news about your boy.

Jenny in Chicago

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

Stacey- My husband also has Oligo, Stage 2. After two craniotomies, infection surgery and then bone flap removal, MRI doesn't show any sign of tumor. We are getting a second opinion to see if they recommend Sterotatic Radiation incase they are any "hidden tumor" in the healthy brain. How many radiaiton treatments did you do? Was it Sterotatic radiation?

You are an inspiration !

CRLM
Posts: 4
Joined: Nov 2010

Over a year since surgery for Oligodendroglioma

Now MRI scans are showing progression.
The team are talikng surgery, beam radiation, and chemo.

I'm curious about the new cyber knife.

Not happy about my predicament.
How can I make a difference?

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

My son was diagnosed last year with Oliogodrendroglioma Gr III. He has been doing well and actually we were told cancer-free February 23, 2011. On June 28, he had a very involved seizure and was taken to the emergency room. An MRI was done, only to find a different tumor in a different area in his brain. We are now diagnosed Anaplastic Astrocytoma Gr IV and I am devastated. Fearful for him and his wife of 10 months. Prayer has carried me through the challenges but this is almost more than I can bear. We will be getting a treatment plan from a neuro-oncologist affiliated with Emory University Hospital on 7/5/2011 after he has met with the Tumor Panel at Emory. It is all so surreal right now.

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

Oh, Woodysmom, I am so sorry and so grieved to hear this. I have been praying for you and your son and his wife for months now, and I will pray even harder.

My son David had a seizure last night in his sleep. He didn't even know it until he woke up with a chunk missing out of his tongue. He called the dr and they are reviewing his last MRI to make sure they didn't miss anything and they want him to call the dr office on Tuesday when the full staff is in. I am very frightened but trying to be strong for my son's sake. I dont know what it means that he had a seizure but I know it's not good.

I will be praying that the neuro-oncologist wll come up with a good treatment plan for your son. And I will pray for strength and peace and grace for you.

Love and blessings,
Cindy in Salem, OR

MSDixieDiva
Posts: 2
Joined: Jul 2011

I'm so sorry to hear about these changes. I know about the roller coaster ride of news from doctors. My son Michael died June 30, a few weeks ago, but not from the oligodendrogliomas. There was a house fire while he stayed with his father and he was so weak from chemo he couldn't make it out in time.

I just posted news about gene therapy, which I think someone else has also mentioned in previous posts. Duke University has a program as well as Cedars-Sinai, but I'm not sure if they have open clinical trials at the moment. C-S in L.A. does have a program open at the moment, so please email them and give them your son's prognosis. The tumors have to be at stage iii or iv before the vaccine can be made, so he may well be a candidate. You'll have to send your medical records, or have your doctors do it, but the doctors here in my area were thrilled that Michael was getting the opportunity to participate so I don't think your doctors will have a problem.

I wish you luck, and I know well what you're going through. Stay strong and fight!

MSK3
Posts: 1
Joined: Jul 2011

Hello Everyone - I'm a first time poster. I've been following Woodsymom's posts as my sister has been diagnosed with the same tumor. (Oliogodrendroglioma Gr 111.) She was dx in Dec. 2010 and had surgery to remove it from her right hemisphere. Her symptoms were severe headache, brain fluid running down the back of her throat (due to the tumor displacing the brain fluid) and she thought she had a bad sinus infection. Finally the MRI revealed her tumor. She went through surgery well and even did 6 wks. of radiation well. She started Temodar and takes it for 5 days, w/23 days off. Since her surgery in Jan. 2011, and with all her on-going treatment, we were hoping for more progress. She is epileptic now and suffers gran-mal seizures - even with potent meds. She takes an anti-anxiety med which causes her to sleep 20 hrs. out of the day. Her left side is very weak. She uses a cane or has to lean on someone to walk, and she has no feeling in her left hand or arm and it just dangles at her side. She can't exert herself at all or she will have a seizure. She can't spell well anymore, and her numbers are off if she attempts to make out bills. I always have to help her. She is 58 yrs. old and has always been the healthiest person in the family. She led the most healthy life-style - always eating right and exercising everyday. She had a great job that she loved, but now she is on leave. They said they will keep her position open for a year.

She is fast losing faith I think. Her life was full before this, but now she sits in her chair sleeping most of the day. She can't cook anymore, can't climb stairs, can't clean etc. Her husband is her caretaker most of the time, with me and her daughter filling in. I expect her to be bedridden soon. Her doctors told her that she would have a quality of life after her treatment. She was also told that this tumor always comes back, but at least she should have a life for a while until it comes back. She finishes treatment the end of October. (Finishes the Temodar.) We are waiting month after month for some kind of progress, but she just goes more downhill.

I am up-beat around her. I am only stating the reality here in this forum. I attended a seminar on brain tumors given by Strong Memorial Hospital in Rochester, NY and they told us up-front that each tumor is different and no two will ever be the same or have the same outcome. We're waiting for the 'quality of life to begin'. It's not that the Temodar has such an adverse side-effect on her. Yes - it's a potent chemo drug, but she handles the effects well with medication. It's the languishing now, and the definite signs of going downhill physically and mentally that is disturbing. We're trying to be hopeful. We're hoping she'll pick up. Does anyone know at what point this should happen? I will say that God plays a very important role for our family too. Woodsymom - surreal is the word all right. Thank you for this site. It's very informative.

Also - she's had two MRI's since she finished radiation and her doctors have told us that she has too much inflammation to tell whether or not the tumor is gone or still there. She goes again soon for another MRI. We hope they can tell us more. She goes every 6 wks. and will have to go that often even after treatment in over.

monie's picture
monie
Posts: 5
Joined: Nov 2010

God bless you Stacey! I'm happy your latest scan is better! I'll pray for you evey day!

VinnyNY
Posts: 1
Joined: Jul 2011

My wife is a seven year survivor of Oligodendroglioma, inoperable. If you have any questions, I may be helpful to you. Keep your faith and stay strong. Vinny

LuvmyJeff
Posts: 8
Joined: Feb 2012

My husband was diagnosed in May 2008, Oli 3, inoperable. He did 6 weeks of radiation and chemo. To date, he has had no change, no more treatments. The only problem he had was from the steriods they put him on for swelling. We are coming up to the 4 year mark of great MRI's and is due for his next one on March 20. He has gone back to work and is even working on his ticket to be a heavy duty mechanic!! He was 42 years old when diagnosed,no seizures, just confusion, dizzyness, vision problems and mild headaches. He also had some paranoia. Thought I was poisoning him! I hope all goes well for you!! :)

monie's picture
monie
Posts: 5
Joined: Nov 2010

Hi everyone. It's so frustrating. I was DX with a Grade ll Oligo and was told my life expectancy is 5.6- 11.5 yrs.I had what my Oncologist calls a MRI total resection on May 7th 2010.There after the doctor said with additional treatment I could extend my life expectancy to perhaps 20 yrs. I am 30 years old,HAPPILY MARRIED WITH 2 BEAUTIFUL GIRLS. My doctor says my last scan shows something where the tumor originally was and he says it can be scar tissue or possibly tumor regrowth... yet he says everythings fine. I have all the same symptoms back as I did in the beginging,seizures,pain,vomiting nausea etc yet he doesn't seem to think I need further treatment. I never received radiation nor chemo. I had a consultation with another oncologist a few weeks ago and he seems to think there is sooooooooo much more that should be being done for me. Do any of you know if it's normal not to receive follow up treatment??? thank you so much and God bless! I FEEL I should change to the other Oncologist...I am my own advocate.

CRLM
Posts: 4
Joined: Nov 2010

More than just frustrating.
Surgery resolved my headaches over a year ago. But they didn't get it all and it's looking bigger on the MRI now.

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

I am so sorry for the regrowth. Did they do any chemo or radiation after surgery? How much was left from first surgery?

My husband had two craniotomies, then surgery for infection, then surgery for bone flap removal and as of last week, surgery to implant acrylic bone flap. Past two MRI's don't show tumor.

Reason I ask is because he is due to have MRI in JAN, and then possibly stereotatic radiation.

Praying for you.

Carrie

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

My husband was originally told after brain biopsy that tumor was inoperable. We got second opinion -- his 4.8 cm tumor was resected down to 5 mm they thought. However past two MRI show nothing. We go the beginning of Jan to get second opinion on stereotatic radiation.

I am only the wife and caregiver and worrier and researcher of this for the past 9 months. YES do whatever you can for your husband and girls. If we listened to first opinion we won't be where we are today. My husband was 36 yrs old, healthy and we were only married 3 months. Also Temodar (oral chemo) taken 5 days a month, is responsive to this type of tumor. Especially if you have the 1p and 19q deletions. YOU MUST BE YOUR OWN ADVOCATE !!

Praying for you and your family.

Carrie

Richard_Palmer
Posts: 2
Joined: Nov 2010

Greetings Monie,

My first diagnosis of rt. temporal lobe oligodendroglioma was in Oct. 1989 (severe dizzy spells, headaches, and occassional loss of conciousness). Surgery removed the tumor (and most of my rt. temporal lobe), but scar tissue and probably undetectable dendrites remained. Besides anticonvulsants, I had no further treatment. I see a Neurologist as my primary physician for brain tumor/epilepsy issues. My primary care physician is an Oncologist, but he defers to my Neurologist for any brain related matters.
After two recurrent bouts of regrowth (at the edge of the scar tissue) and subsequent Gamma Knife radiosurgery, I've been a lucky one. New symptoms have begun, so my next MRI will be soon.
The best thing that my original primary care physician did for me was to refer me to a Neurologist, who specializes in brain related disorders. My suggestion is to ask for a reference to see a well qualified Neurologist. He can then work with an Oncologist and, where necessary, a Neurosurgeon, to provide the best care possible.
This 29 November, I celebrate 21 years of survival after my initial diagnosis. Here's wishing you the same, and more.
Continuing to be your own advocate gives you some control, at least, of how your health issues transpire. Seeing a Neurologist may be your next step.

Aloha,
Richard

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

Twenty one years is awesome !! Your post was what I needed as we now wait to see a Oncologist debating on Stereotatic Radiaiton or observation.

Italmanu
Posts: 1
Joined: Dec 2010

Hi everyone,
I’ve read your posts and I want to share my story with you. My 29 years old brother has been diagnosed in April 2010 with a oligodendroglioma grade II, after we have spoken to different doctors (they ALL say and suggest you different things..it’s so frustating not knowing which one is the best option) he decided to have a craniotomy that could define the type and grade of the tumor. The tumor could not be removed due to the fact that is big (approximately 6cmx4cm), spreads through the corpus callosum and is infiltrating. The histological report confirmed a grade II oligo but only 19q deletion. As my brother has decided to trust only one oncologist (that is supposed to be the most expert in this field here in Italy but…who knows!!) and has decided not to listen to all thes different opinions about what to do with this terrible disease, he decided to go on a 28-days cycle conventional radioterapy directed to the whole brain (started mid-September). On Thursday he will have the first follow up MRI scan and I’m so scared..I just try being positive with him and my parents, trying to convince them and myself that we don’t have to expect too much from this MRI, that can be several months before radio shows some results but that doesn’t mean we have to give up with hope…I just want to keep back before we see the results in order not to be too much sad if we don’t receive the good news we all are expecting.

The disease first showed in April, with 3 seizures in the same day, one at work and two in the hospital. Before that, he has never showed any related simptom. In March 2010 he has received his PHD degree in engineering and now, 9 months later, he is not able to work anymore, has problems with short-term memory, is frequently tired and dizzy..has anyone experienced any of this symtoms? I’m wondering if things are going to get any better someday..and if he’ll be able to return to the job he liked to much and his passions, bike-riding above all.. He used to be super positive at first with the whole tumor-problem but now that time is passing by and he doesn’t see any improvement it’s getting harder and harder... I keep on suggesting him to LIVE STRONG, even though it’s so hard for us caregivers to know what’s going on in our illed loved ones!

Hope you all are doing each day better and get some strenght with learning other’s experiences. I have, and will pass this new strenght and hope to my dear brother and family.

Manuela

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

Hi, Manuela.

I am so sorry to hear about what your brother and you and your family are going through. It's a hard, hard road to have to take in life. I hope that I can give you a little bit of encouragement by telling you what our experience has been.

My 26 year old son David (26 at the time of his diagnosis of grade three oligodendroglioma, no deletions at all) had a craniotomy and 6 weeks of radiation. Now he is taking Temodar for 5 days every month. He has had some of the same symptoms that your brother is dealing with. As time goes by, he is improving. But it is a slow process...but as long as he is going forward, that's what we focus on. He was diagnosed and had his craniotomy in May of 2009. I can tell you that things are much, much better now than they were back then. I wish we had known then how much better it would get for David. The first six months were an absolute nightmare for us.

Like you, we were also frustrated when we got second and third opinions and the experts did not agree. But that showed me that they really do not know everything there is to know about brain cancer, especially oligodendrogliomas. So they cannot be so very sure about how the condition will progress, and they cannot predict life spans with complete certainty either.

One thing that our nurse at the oncologist's office told me that was helpful to me: she said that every brain tumor patient has had brain trauma. The tumor is a trauma to the brain, the surgery is a trauma, the radiation is a trauma, and the chemo is a trauma. She told me that the brain needs some time to heal from all these traumas. You mentioned that your brother is tired, dizzy, has short term memory loss...David has had to deal with all those things too. He is a year and a half out from diagnosis and surgery, and he is still recovering. It takes time to get over all these things going on to the brain, but your brain does recover. It might help your brother if he can try to be patient with his body and focus on how he is healing still, and that he IS healing and going forward, even if it's slow. It's still forward.

David also spoke to another dr who said that the brain can actually learn new ways to process information. He said that the brain develops new pathways from neurons or dendrites or something...I'm not a brain surgeon and I don't remember the exact terms, but I know what he was saying. He told David to brush his teeth with his left hand (David is right-handed) and to fold his arms the opposite way than he usually does. He says those are ways to exercise his brain. That dr also stressed the importance of getting exercise and especially stressed the importance of a positive, fighting attitude. We believe that a positive attitude is the so very, very important, and we fight hard to keep positive as much as possible.

Our oncologist also told us that David could go to rehab for his memory issues. They can actually give you exercises (mind exercises) that help you recover your memory. David chose not to go to rehab since his memory is slowly getting better with the things he is already doing. (School, work, etc)

David just recently (in Sept.) went back to college. At first, he was really thrown off by how hard it was for him to read, study, learn, and retain information. He had to read things over and over, and it shook him up that he didn't get it the first time through. But as the school year progressed, it became easier and easier. He said that he needed to relearn how to learn.

Please tell your brother that the improvement can be slow and very subtle. We didn't even notice some of the improvements until friends pointed them out to us. It was just so gradual that we didn't notice it happening. Like the improvements in David's headaches. That is still a battle for David, but he has come a long way. For the first year, he had to take very strong painkillers for chronic headaches. Now he only takes them occasionally and he can sometimes even just take over the counter pain medicine. That is a big improvement.

About the first MRI....our dr told us that the first MRI was for more of a baseline to compare against future MRIs. He told us that it could even look bad since David was still recovering from surgery and and then radiation. So you are right to not expect a lot from that first MRI.

Please also let your brother know that he needs to allow himself some time to heal from the radiation treatment. That was way harder on David than we expected. It took David about 6 months to start feeling better. I think he's still getting over it. David went back to work part time and is going to school full-time. (Portland State University). He needed a year off to recover before he was able to do this.

I hope that hearing about our experience has helped you even a little bit. I know that it's hard, but please try to be strong and very positive for your brother. It's the best thing you can do for him. I will be thinking of you and your brother. Please keep us updated on how you both are doing.

Peace and blessings to you,
Cindy

ktboxler
Posts: 1
Joined: Sep 2011

Hi. I'm new to the site and I wanted to comment to Cindy. I've seen many of your posts. My husband was diagnosed in May of 2001 with a Grade II oligo. At the time, they told us that he would have a resection and that statistics had shown that should be it and all should be good. There are no Neuro-oncologists here and since the doctors here don't know much about the tumors, I guess that's why they never told us that he had "cancer". It grew back a year later and again, he had surgery and followed with radiation that time and again it was because "that's what the statistics said to do next". All was good for 5 years. No seizures, no nothing and clear MRI's. Again, they never told us that he had cancer. They always said the tumor itself was cancerous and that it was contained in a fluid filled cyst and they got it all. We later found out from our docs at MD Anderson Cancer hospital in Houston, that they can never get rid of all the tumor cells even if they say they do. You had asked if anyone had been around for 10 years. Well, my loving husband was around for exactly that. He had his last surgery in July of 2009 at MD Anderson and that's when we found out it was in fact cancer and that yes, it would come back and yes, that would be his demise. The docs there said there is a 10 year life span on a grade II and by golly, that's what it ended up being exactly. That last surgery in 2009 showed Grade III. These past 2 years he's had to quit his job as a restaurant general manager and go on disability. After 3 major brain surgeries, it tends to take it's toll and his memory got so bad that he was forgetting to do critical things at work. We decided it just wasn't worth it. We LOVED having him home every day and he cooked and did everything. To make a long story very short, he was on about 6 different chemos in the past 2 years. All the sudden things got bad very quickly. We had gone on a fantastic 10 day vacation to Cancun with our 2 kids (13 & 15) this June and had such a great time. By the time we got back, his hand was numb and useless and he was starting to stumble. a week after that trip our oncologist here said that she thought that he had less than 6 months left. We went to our appointment at MD Anderson on July 11th and hoped to hear better news. Nope, the tumor had grown very aggressively and we declined to see the images. His was in his left frontal lobe and was growing back into the speech and motor area. His speech had been declining for the past year and by a week after that trip he was unable to talk at all. He knew what he wanted to say, but it wouldn't come out. The docs at MD Anderson gave us the same news. He was crushed and it hit him so hard that by the time we got back to where we were staying, he was no longer able to help us get him out of the car or sit up. By morning, the swelling in his brain was causing him to vomit and couldn't lift his head. By the time we drove to KC the next day, we had to have hospice meet us at home and he passed away a week later. I don't tell you this to discourage you at all, but to let you know that YES, they are always coming up with new drugs. We had a very well known Neuro-oncologist at MD Anderson and he told us that he has an oligo survivor that is 17 years out. I sure wish we could have made it that far! He was so optimistic and never led us to believe that we should stop doing anything or any treatments. You really need that in a doctor. Our surgeon there was a little less optimistic. He sounded like your doctors. In fact the first thing he said was "I'm sure you've been told you won't be growing old together". Of course, since we didn't know much about the cancer at that time, we were so crushed. Being only 40 when he passed away was just way too young. He died July 18th and we miss him so much. Tell your son to keep on fighting, it's the only thing that will keep him going. Keith was such a fighter and until the week before he died, if you would have asked him how he was, he would have said "just fine". But, that was his attitude. I truly believe that had we not had that vacation that we had planned for almost a year and were so looking forward to, he would have gone sooner. I know he was just holding out for all of us. I wish you all the best and sure know the journey you all are on.

Tracy

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

Thank you for writing to me and for sharing about your experience. I'm so sorry that your husband wasn't able to beat this disease. Ten years is a long time to survive when you are fighting such a monster--a brain tumor--but it's so short compared to the life we expected to share with our loved ones. I have to fight hard mentally not to be paralyzed by fear about what the future holds for David.

I guess since you mentioned that you had been reading my posts, you know where we are at in David's battle. We leave tomorrow am for NIH and another round of every test they can think of. PET, MRI, bloodwork, etc. I am dreading what they will find and what they will tell us. How can I prepare myself for what I am afraid they will say? How can I help David? I've been praying and doing my best to try to stay strong.

David has been having headaches off and on. I guess it's a good thing that it hasn't been just one long horrible continuous headache. David is a fighter too, and he is hopeful. He sent me a little note today just to let me know what a great time he had when he went out to lunch with a family that we have known for years. Their 16 year old daughter is in a battle for her life too--fighting osteosarcoma--and she and David are good buddies and they laugh and joke around, and also talk seriously about what it's like to be fighting cancer. His note today was cheery and hopeful. He inspires me to hold on to hope and to have a positive attitude. Right now I am just really struggling...

Thank you again for your note. May you find peace and comfort and strength for the days ahead. Blessings to you and your children...I am so sorry that you lost your husband and the father of your children.

Love and blessings,
Cindy in Salem, OR

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

if i have been told ive had all the radiation i am allowed to have, than i wouldnt be able to have the stereotatic radiation, would I? or the cyberknife? i have herd some things about these, but I am afraid to go any further with any type of radiation since i was already told it could cause brain damage if i had any more.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Monie, i agree i think u have to be your own advocate, i think u should get the second opinion. i have oliodendroglioma AA grade 3. i had open brain biopsy on NOv 9, 2010. radiation and chemo pill from dec 21 2010 to feb 3 2011, then restarted chemo pill on mar 3, 2011. they have now startted me on chemo iv on august 2, 1011 and im also still doing the pill for 5 days every 28 day cycle. my tumor is inoperable.

MSDixieDiva
Posts: 2
Joined: Jul 2011

My son, Michael Scott Brown, was diagnosed with a frontal lobe glioma in 2003; doctors said it was benign, and as he didn't have insurance, said to get cat scans a couple times a year. Fast forward to 2007, his grand mal seizures became much worse and doctors then discovered the benign glioma had acclerated to malignant oligodendroglioma level 1. They operated, removed most of it, leaving him with slight paralysis on his left side. Within a month the tumor had returned, this time much larger. Michael fought these tumors right up until June 30, 2011 when he was killed in a house fire while visiting his father.

A few days before he died I had discovered a promising new clinical trial that has had great success in Scotland at the Edinburgh Research Center. It's gene therapy, and the best way I can describe it is that they make a vaccine out of level 3-4 oligodendrogliomas, mix it with leukocytes and process it into a specialized vaccine targeting the individual's cancer. It's my understanding that Scotland has had as much as a 90% success rate with this new way of fighting this particular kind of tumor. Since I live in the US, I trolled the Internet looking for a clinical trial closer to home. I found it at Cedars-Sinai in L.A. California. They have open trials, and had actually asked for Michael's medical records so he could travel to CA for treatment. We were so excited about this new treatment, and I saw hope in my son's eyes for the first time in a long while. If he'd not been killed in the fire, perhaps he would even now be in L.A. receiving treatment. I don't know.

What I do know is that my son has the biggest, most generous heart I've ever known, and that he'd want others with his same affliction to have the same hope, and perhaps even a cure or 20+ year remission. This is a fairly new treatment, and I know researchers are speaking cautiously, but if this is something anyone reading this would like to explore, I have an email address for the one in the US:

Jaime.Richardson@cshs.org

Also, Oregon has a clinical trial program for oligodendroglioma patients, although I'm not sure that it's the gene therapy:

hedrickn@ohsu.edu

Below is a link to science news about the possibilities presented with gene therapy:

http://www.sciencedaily.com/releases/2006/08/060816012351.htm

I hope this helps someone or their loved one suffering from this type of tumor. If any of you try it, please let me know how/if it works for you. Saving lives would make Michael so happy, and I'd like to think he made a difference for others.

My thoughts are with all of you. Stay strong, never surrender, nurture hope.

V. Brown

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

Thank you, Ms. Dixie, for your note.

What a tragedy for you---that your son had fought cancer so hard and was winning---and then to be killed in a fire. I am so sorry for your loss. It is a terrible thing to lose a child...it's every mother's worst nightmare.....

I am too drained to write much, but as of right now, we are trying to get David into that Oregon clinical trial that you mentioned. The day before they were going to start the chemo for that clinical, we found out that his insurance company denied coverage for it. We met with the dr today again and he tried to explain it but I still do not understand why the hospital doesn't pay for it if it's a clinical trial and David is willing to be a candidate. If it's not a trial, then why won't the insurance pay? They try to explain it saying it's off protocol, or it's on protocol. All I know is that David is sitting here with "disease progression" and we are waiting for an answer to our appeal to the insurance company.

Please pray that the insurance company reverses their decision and covers David for that clinical trial. David does not have the gene deletions that make his tumor type sensitive to chemo, so this clinical would really benefit him, since it disrupts the blood brain barrier and allows more chemo to reach the tumor. We are trusting God and holding on to hope, but this has really been devastating.

Love and blessings,
Cindy

Godworks1ders2011
Posts: 1
Joined: Aug 2011

I know this is an older post, but there are some current comments so I'm hoping this is still a continuing conversation. I'm a 27 year old at-home mom/ wife with 2 precious girls, 3 years and 7 months. I'm still considered post partum. In May 2011 I had an MRI of my head because of migraine headaches that I developed during my second trimester of pregnancy (back in October I was hospitalized for these headaches and because I had what I believe to be a Grand Mal seizure - the only way I can describe it is if my brain had a guitar string inside, someone plucked it HARD, lol, and I blanked out) and it revealed a marble-sized tumor in the right temporal lobe of my brain. It is near my brain stem and amygdala.

I was referred by my neurologist to a local neurosurgeon who ordered a few CT scans. He told me that since my tumor was partially calcified, it has most likely been there for a long time and was probably nothing to worry about and we would just track it by CT scans annually, but wanted a reliable second opinion, after all the tumor 'lights up under contrast" (which I later found out suggests cancer). He started explaining Epilepsy to my husband and I. The local neurosurgeon was uncomfortable handling this by himself, so he referred me to an incredible neurosurgeon (Dr. Fady Charbel - you can google him if you like) at U of I Chicago (we live in a suburb of Chicago).

Hubby and I met with Dr. Charbel this past Monday. This is what he told us: The tumor is a Grade 2-3 Oligodendroglioma or Mixed Oligodendroglioma. I will be undergoing my first craniotomy on August 24th, just a few days from today. Hubby is in complete denial about what is going on here. He thinks this surgery is going to be a one time, cure all deal and that it's just going to go away after this. "Doctor said you'll be fine in two weeks." I am SO frustrated with him for taking such a "head in the sand" approach. I am also finding myself really irritated with people who are acting like I'm dying tomorrow.

I'm just so angry that this is happening. I'm an incest survivor, having nothing but an uphill climb since I was a kid. I was diagnosed when I was 17 (ten years ago) with Grave's Disease/ hyperthyroidism, but since the birth of my 2nd daughter in December I am now hypothyroid. Turns out I am positive for both sets of thyroid attacking antibodies. I have both Grave's Disease and Hashimoto's Disease. In a nutshell, I have severe autoimmune disease. I'm so very worried that because of my already severely compromised immune system, I won't be a long-term survivor. Does anyone have a separate autoimmune disease going on while managing their cancer? I am eating only lean meats, veggies, fruits, nuts, and beans until surgery to try and cool my immune system, but just feel so very hopeless.

sadinholland
Posts: 231
Joined: Apr 2011

The muscle right under my husband's eye has been moving all the time lately and I have also notice his shoulder and arm will sometimes do it as well. His arm movement sort of looks like when you squeeze something real tight and your body "shivers" for lack of a better word. It's hard to explain but I was wondering if anyone else has experience unusual movement such as this. His eye muscle is like it is pulsating all the time. He is not and has never been on seizure meds. He has never had a seizure

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

I wish I would have seen your post and replied sooner. How are you doing since your surgery?

Reading your post, it would seem like you have already won some battles in your life. I'm thinking that you are a fighter, and I believe (and drs have told us) that having a fighting attitude makes a huge difference when battling brain tumors. Please stay strong and keep fighting!
Another thing I have heard from several doctors--brain tumors are very unpredictable. The dr that we are seeing at NIH said that he's seen cases where everything seemed favorable for a long outcome, and yet the patient did not do as well as expected. And he said he saw patients who had the odds stacked against them, and against all expectations, they did really well. I think that the unpredictability can work in our favor.

I'm sorry that I don't know anything about autoimmune diseases and how they might impact someone who is fighting cancer. I would recommend that you go to a teaching hospital or university or somewhere that sees a lot of brain cancer cases. Please keep searching until you find someone who knows about autoimmune diseases and how they relate to cancer treatments.

Someone posted this on my son's Facebook wall:
Looking at them, Jesus said, "With people it is impossible, but not with God; for all things are possible with God." Mark 10:27

I really like that Scripture. I believe it, and it gives me hope and helps me to continue on with the battle for my son David's sake. Please hang on to hope and keep fighting.

Love, blessings, and peace to you.
Cindy in Salem, OR

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi Cindy,

First, to everyone who has posted on here, both stories of pulling through and those who have passed on, my thoughts and prayers are with you. What amazing strength I have seen in both those diagnosed and those who stand beside them in this fight. Amazing people, all of you!.

My name is Ashley. My boyfriend Jordan, who is 29 years old, has been diagnosed with oligodendroglioma. We were first told it was Anaplastic Astrocytoma, we have now gone through surgery and await the full pathology. The doctors at the cancer clinic have named it oligodendroglioma, but we have yet to receive a grade.

Jordan started having real bad migraines a month and a half ago. A doctor’s appointment led to being sent to emergency, emergency lead to CT scan, following an injection with dye and another CT scan, this lead to an emergency MRI. The MRI showed a tumour, deep lesion (2cm into the brain) on his left parietal lobe. He came through surgery two weeks ago with flying colors. No real side effects other than the feeling of water in his left ear, which we were told is normal. He was sent in for blood work, the doctor had explained that they will now do genetic testing in order to find the best way to fight this cancer. Unfortunately after surgery we were informed that they did not remove it all. It has begun to spread to the right hand side of his brain which is inoperable. Not the news we wanted to receive, but am hoping and praying that with the genetic testing, chemo, radiation, whatever the next step will be, will be the right one and we can pull through this strong.

In reading the reply’s to your original post, I had seen someone mention gene therapy, the genetic tests they are doing now, would this be considered the same thing?

I can relate to you in feeling drained, overwhelmed and almost at times on a different planet (head in the clouds) kind of drifting through the day. I am constantly trying to bring myself back to reality, keep my head straight, stand strong and help him in whatever way I can through this.

Jordan is very strong. The main thing he keeps repeating is “I’m not going to sit and dwell on it, life goes on, we will get through this” I wish I could be so strong. I am thankful for his strength, this is his fight, and positive is the way to be.

I have found someone online that has been a tremendous amount of support for me. In an email written to me the other day, he said this “There has actually been some upside in all this. Don’t get me wrong, I would trade all the upside for him not to have this but being that I can’t change that, I’ll take the upside. For one thing, we no longer take a good day for granted. We all appreciate every day, from the sun shining, to the flowers, seeing him smile over an accomplishment, and all the little things that I probably never stopped to notice” How true is this!

He has also encouraged me to watch David Servan Schreiber on you tube. There was a recent discovery less than two years ago on the gene called IDH1. If your loved one has this mutation called IDH1 his or her outcome will be better than those who do not have it. They do not yet know why that is but people who have this mutations simply do better, live longer, etc. I encourage you to ask your doctors about this gene mutation. A great site for information is www.virtualtrials.com

I would love to keep in touch through email, it seems as though we are in the same stage of this fight. I do not have all the information, I am still learning myself, but I am here should you ever need anyone to just listen!

Ash

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

Hi, Ashely.

Thank you for your post. I haven't been really careful about searching through posts to see if anyone has commented on my posts....sometimes this website isn't really easy to follow comments. I didn't see your comment until recently---that's why I've been so slow in replying. I'm sorry!

I hope that you and Jordan had a good September. Did you find out what kind of tumor you and Jordan and battling? I don't know much about oligodendrogliomas, but I've been learning as we go forward in our fight.

It sounds like the testing they were doing might have been to determine if that tumor has certain gene deletions. If the deletions are present, it is an indicator that the tumor will be more sensitive to chemo---chemo will be more effective against the tumor. My son did not have the gene deletions. He took Temodar for over 2 years and was progression free until July of this year. He just had another craniotomy on Tuesday. They were able to remove a lot of "crud" and we are waiting for the pathology report to see what exactly it is that they removed. They think it was a mix of high and low grade tumor, a cyst, and some radiation damage. They did the surgery because David's headaches had become unmanageable. It was amazing....the surgery was like a magic cure for the headaches. He has had a few headaches since, but none near the level of the ones he had been having. He is doing remarkably well.....he went back to college today. Only six days after brain surgery! His tumor was on the right frontal lobe, but it was down really deep. They were not able to remove some of the tumor on his left side because it would have impaired him. We are hoping and praying that we can attack what is left with some form of chemo, probably a chemo cocktail.

Will Jordan be doing radiation? David did radiation in May of 2009, right after his first brain surgery. He was very tired---really wiped out---and he had some temporary short term memory issues, but overall, he really did not have too much trouble with the radiation. A lot of people on this site have had some serious issues with radiation, but for us, he had two choices--maybe die later from radiation related issues, or die really soon from the cancer. We chose to do radiation, and for us, it was the right choice.

Good for your boyfriend for having such a fighting attitude! I believe that a fighting attitude is crucial in this battle. He also is so young, and that is in his favor too. I will be praying for you and for Jordan, that God will give you grace and strength to fight this battle, and that He will touch Jordan and heal him.

Please keep in touch and let me and the rest of us on this board know how you both are doing.

Love and blessings,
Cindy in Salem, OR
PS I posted pics in my expressions area

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi!

I to only check in to see reply’s now and then. Life gets busy, completely understandable.

Jordan has been diagnosed with grade 2 Oligodendroglioma. He had surgery last month and we went in on Friday to hear some more results.

He does not have the gene deletions that would indicate the tumor will be more sensitive to chemo. It as well, like your son was not completely removed, this would have left him impaired. It had spread slightly to the right hand side in a part of the brain which is used to communicate with each side. We were told we need to just wait and monitor it now. Being grade 2 it is slow growing. Should it get to a point where they see it spreading once more, then they will start radiation. The doctors exact words were that he has “a good decade”. My heart dropped. I had hopes he would have had the deletions and we would move forward with treatments and move forward with life. I understand others have less time, and I also understand anything can happen in a decade, this is just a new “normal” I am trying to let settle in.

It is encouraging to hear that radiation worked well for your son, I too have read many discouraging stories about radiation on here. This may be partly why hearing that was the treatment we are going to eventually need to take was quite discouraging.

Jordan is back to work today, he was advised not to, as he runs heavy machinery and is at risk of seizures now, but his company and him seem to not see a threat in that? They have come to an agreement that he will be running the machines less and doing other duties, sitting at home was just making him stir crazy. He has always been a work-a-holic.

I am struggling with the choice in waiting. My thoughts are automatically wait until it spreads and then radiation to extend his life? Is this how I should be thinking? Or should I be taking comfort in the fact that they do not want to treat him immediately? This is all a huge learning curve. Not only in educating myself but emotionally as well.

Is it ok to ask if they gave your son a life expectancy? Why you think they chose radiation right away after your sons surgery in his case and not in ours?

I will be praying for you and your son as well! Thank you for your reply!

Ashley

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

Hi, Ashley.

In my opinion, grade two is good news, especially compared to what you could have heard. We were told that grade two is usually much more slow growing. We also have been told by other doctors (at NIH) that the lack of gene deletions is not an absolute guarantee set in stone that chemo will not be as effective. My understanding (and I am no doctor--just a scared mom) is that the statistics show a more favorable response is more likely with the gene deletions than without. Our doctor at NIH said that he saw people who had the deletions and still did not do that well, and he saw people who did not have them, but still did good. I believe that's one of the problems with oligodendrogliomas...they are tricky and unpredictable. But that could work in our favor, since we don't like what they predict.

David is being treated at OHSU...Oregon Health Sciences University in Portland, Oregon. David was diagnosed on May 15th, 2009. They told us when he was diagnosed that the median life expectancy for David was three to five years. It still makes me feel like throwing up to type that. We are at two and a half years.

NIH would not give us any life expectancy figures. They said every case is different, and every tumor is unique to the person who has the tumor. And everyone responded differently to treatment. They did tell us (and so did OHSU) that David is not "curable." I HATE hearing that, but I tell myself and them that's okay...we can live with it being "manageable." The real issue for us is, of course, how long can we "manage" it....

I think David's doctor recommended radiation and chemo for David right off because his situation was more desperate than Jordan's. Grade three is definitely more serious and more aggressive. Our doctor at first gave us the option to choose radiation or chemo...until the FISH results came back with no gene deletions. Then he said that we did not have the option...we needed to do both together. We also got a second opinion from Fred Hutchinsons in Seattle. They said to do one or the other, and save the other treatment for later. Then we got a third (tiebreaker) opinion from UCSF. They also recommended that David do both at the same time, so we did.

Is it possible that your doctor wants to take the wait-and-see approach because he doesn't want to use chemo etc. unless he sees active tumor growth? Tumors can become resistant to chemo...if it's not growing and you used chemo, could the tumor develop a resistance to the chemo, and then if it does start growing years down the road, will the chemo no longer be as effective? As far as radiation goes, our radiologist and our oncologist say that they only do radiation once, except in rare instances. Maybe your doctor wants to save that for a possible treatment option down the road? Please be sure to ask your doctor your questions. And if you wouldn't mind, could you please let me know what your doctor says?

I'm sure that Jordan's doctors will do regular MRIs and keep a careful watch on Jordan. If they see any change at all, I would think that they would immediately begin chemo and/or radiation.

Two positives to think about....1) Jordan was able to have surgery and reduce the size of the tumor. Even if they didn't get it all, any reduction in tumor size is a good thing. 2) He is young and I've read and been told that a younger age at diagnosis is a better prognostic factor. I think younger people heal better and their bodies are able to fight it off better.

I also believe that a strong will to live and a fighting attitude make a big difference. Jordan sounds like he has both of those. Please try really hard to focus on every positive thing that you hear and read about. When David was first diagnosed, I googled like a maniac and drove myself crazy. I was in a state of shock and I was trying to learn everything I could about brain tumors. I would read and reread the bad stuff and just cry and cry. Finally I stopped doing that. Now I read the negative information one time and then no more. Any positive stuff....I copy and save it and I read it over and over. I even write some of it on sticky notes and put it on my bathroom mirror. It really makes a difference in my mental outlook. And that makes me be a better support person for David.

There is not a lot I can do for my son. But I can be strong and positive and stand with him and believe that he can beat this back and live longer--a lot longer--than they say he will. How awful would it be to have brain cancer and not have anyone believe with you, that you might be able to beat it? I have a friend whose doctors told him that he had less than six months (pancreatic cancer) to live, and he is going on twelve years. His doctors don't know why. I believe that there are people who beat cancer, even brain cancer. I don't know if David will, but I don't know that he won't, either. So I will continue to keep supporting him, fighting for him, hoping with him, praying for him, believing with him. I believe in miracles.

I hope that my note will bring some encouragement and hope to you. Please stay strong and hold on tight to hope. And give Jordan a hug for me. He is one year older than my son.
Love, blessings and peace to you,
Cindy in Salem, OR

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi Cindy,

Thank you for your email. Your positive attitude in all this is very uplifting.

Jordan has booked an appointment to see his doctor as soon as possible. We are going to get our hands on all the information we need and get a second opinion. He has been content in letting things sit the way they are, but agreed it may be best just to hear it twice. This brought some comfort to me.

I struggle on my own time with what is going on. Tears fall, I question god, I question everything for that matter, but always on my own. I stick to being positive and letting him know how wonderful and amazing he is when we are together, I assure him everything is going to be fine as well and we are going to fight this. It’s hard not to be positive when speaking about it with him, he has no doubt that he has plenty more years than what they stated. I sometimes see it as denial, but you are correct in keeping positive and how that will help win this fight!

I received my patient & family handbook yesterday from the Brain tumour foundation of Canada. This is when I read they use radiation once due to the damage it can cause. This answered some of my “why wait” questions, but still think there is something else we can be doing now. Doing nothing at all just is not sitting right with me, something in my gut is telling me there is more we can do.

I have started sharing brain tumour awareness with family and friends. Encouraging donations to the brain tumour foundation website. We will be fundraising next month as well. Whatever it is I can do, I will on my end! I will fight this in my own way alongside Jordan. Fighting for a cure, spreading awareness, this helps ease some part of me. “There is not a lot I can do for my son” I know that feeling to well, learning and educating others seems to replace that helplessness. I to have stopped goggling information and try to stick to the positive stories! My heart breaks for those who have lost loved ones to this cancer, and one day that could very well be me, but for now, while he is here, I will not take for granted one minute and I will do what I can to help Jordan and everyone else who’s life has been effected by this.

My thoughts and prayers are with you, and when we receive any new news, I will be sure to let you know!

Ashley in Vancouver, BC

dtinnelly1983
Posts: 1
Joined: Mar 2012

I am in the same situation as your loved ones.I live in Vancouver, BC, but orignially from Ireland and I have a grade II Olidendraglioma on my left frontla lobe which has since been found to be ROH 1P and thus not as susceptable to Chemptherapy.

I collapsed at a music festival last year and banged my head. The resulting CT scan showed a "mass" on my brain, which was then investigated further and turned out to be a "benign" tumor. Hearing the word benign put me at ease, but turns out it shouldn't have. I have since had surgery to remove the tumor. The first surgery didn't go as well as had been hoped so I went back in a few days later and they got some more out. There were complications in that part of the tumor encased a motor nerve which they were very worried about and in the end decided not to go near it.

I have been to see the Nuerosurgoen since then and he referred me on to the BC Cancer agancy. He had mentioned the whole 10 year thing to me but I just ignored that, wanting to believe I didn't hear it and that someone else would tell me differently. My condition has been stable over the past 6 months since surgery.

I am due to undergo radiation therapy in the next few weeks. After meeting with the oncologist from BC Cancer agency I sort of blanked out and forgot all the questions I wanted to ask. The one question I did ask him was about the long term outlook and he mentioned "not being able to look beyone the horizon of 10 years". I felt sick to my stomach. It's just hitting home with me that I may not live beyond the next 10 years. I'm 28. I have to put on a brave face around my family, who flew over to visit me last year, and my friends, who all believe that the tumor resection was a sucess and that there's going to be no further issues. The word benign tends to give people, including myself, a sense of false hope.

There's very few people who I have told about my updated outlook and scheduled treatment. I have been googling this stuff non stop for the past couple of days and I have to say your posts are the ones that really struck a chord with me as it's the exact same diagnosis that I have been given.

There's not much I can do, other than get on with life and enjoy it as best I can. It's definitely given me a different outlook on life and in turn given my family and friends a different outlook too. Hopefully, they will come up with a cure for this condition in the next decade or so. One can only hope.

Daniel

Maybel1980
Posts: 5
Joined: Dec 2013

Hi,

We had the same case (grade 3) and it has been 4 years - 2 of treatment and 2 of piece :)

So yes, there is hope.

Make sure that you keep your medical records in place for the future and so that you feel in control. I use a great ipad app called Hello Doctor http://goo.gl/WJDh8K

Try it and gool luck!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network