Oligodendroglioma
Comments
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GRADE ll OLIGODENDROGLIOMA
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.0 -
Over a year since surgeryCarrie King said:Tumor shrinking
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 !
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?0 -
from six months to a year, to maybe ten years with treatmentmonie said:GRADE ll OLIGODENDROGLIOMA
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.
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.0 -
Moniemonie said:GRADE ll OLIGODENDROGLIOMA
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.
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.
Carrie0 -
CRLMCRLM said:from six months to a year, to maybe ten years with treatment
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.
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.
Carrie0 -
Oligodendroglioma recurrencemonie said:GRADE ll OLIGODENDROGLIOMA
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.
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,
Richard0 -
RichardRichard_Palmer said:Oligodendroglioma recurrence
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
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.0 -
My brother's storyCarrie King said:Richard
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.
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.
Manuela0 -
Please be encouraged.....Italmanu said:My brother's story
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
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,
Cindy0 -
Agreed!MistyM said:oligodendroglioma grade 11
Hi, my very good friend was just diagnosed with this same type of tumor. I have since spent over 40 hours researching case studies, various treatment types, effects of treatments, etc. From what I have read and what her neuro oncologist explained, generally speaking if your tumor is operable, which you said yours was, then radiation is a standard follow-up to surgery. This type of tumor returns in most all cases. When the tumor returns, this is when you would expect to have chemo or chemo/radiation combination treatment. Please remember you are your own advocate. Doctors are treating you based on their educated guess as to how your tumor will respond. Make certain your Doctor has ordered the test that determines your chromosome markers. Believe it or not, they don't always order this test due to cost. Usually in this type of tumor there is a 1p and 19q deletion. This is critical in determining your treatment type. Doctors are concerned with "attacking or killing" the tumor. In radiation and chemo, the "killing" of the tumor also destroys many good things, i.e., bone marrow, etc. You need to be responsible for replacing the good things through diet rich in antioxidants and supplements found in nutrition stores. (the real ones not the chains) If you find an alternative treatment you want to use in addition to your prescribed treatment, you can take the supplement to your Doctor for approval. Above all else, turn to God. He has the answer to all your questions! Hope this helps.. and hope you are doing well!
MistyM - I completed 6 weeks of Temodar and daily radiation after my 2nd resection in May of 2009. My Medical Oncologist suggested the combination of chemo/radiation because the 'dna of my tumor cells would respond well to the treatment'. I was also advised that healthy brain tissue could also be damaged as a result of trying to keep tumor cells from repairing/growing. My initial resection was in 2005 with no oncologic treatment, just monitoring via MRI's. The oncologic treatment was extremely tiring, even if low dose taken at home. Although I was very educated about my medical issue, it was still difficult to deal with the side effects both physical and emotional. I've also been told that it could be 20+ years, if ever, before the tumor cells grow again. Thankfully, my tumors have both come back as benign with no change in grade (3). I'm hopeful that my hair, where the surgical flap is, will regrow to it's normal fullness and texture, but that may be a long shot.0 -
oligodendrogliomaIrishMCH1968 said:Agreed!
MistyM - I completed 6 weeks of Temodar and daily radiation after my 2nd resection in May of 2009. My Medical Oncologist suggested the combination of chemo/radiation because the 'dna of my tumor cells would respond well to the treatment'. I was also advised that healthy brain tissue could also be damaged as a result of trying to keep tumor cells from repairing/growing. My initial resection was in 2005 with no oncologic treatment, just monitoring via MRI's. The oncologic treatment was extremely tiring, even if low dose taken at home. Although I was very educated about my medical issue, it was still difficult to deal with the side effects both physical and emotional. I've also been told that it could be 20+ years, if ever, before the tumor cells grow again. Thankfully, my tumors have both come back as benign with no change in grade (3). I'm hopeful that my hair, where the surgical flap is, will regrow to it's normal fullness and texture, but that may be a long shot.
May 2010 I had my brain tumor removed. They said it was 100% resection. I have had no chemo or radiation at this time. They said it was stage/grade II with 1p and 19q co-deletions. All of my MRI's have come back good so far. They said my median range was 8 - 10 years. You said your tumors have both come back benign with no change in grade 3. How soon did yours come back? They did not come back as cancerous? My tumor was in my right temporal lobe. A few days after the surgery I had a seizure so I am on Keppra. Did you have any seizures or do you have to take seizure medicine? They told me I will be on this for a long time. I do not know if it is from the surgery or the Keppra but I can not eat well. I am still losing weight and I just do not feel like myself. I did lose some of my eyesight in my left eye and I feel "off" quite often. My memory is not how it use to be. I can not run or play ball with my boys. I did play bad mitten but anything on my left side I did not see. You were told it maybe 20 years before it comes back? I have a 9 and 5 year old. When I was told 8-10 median range I was and still am upset. My youngest my not even be out of high school or have his drivers license. Do you have problems with memory? If so did it get worse each time you went in to the the new tumors removed? Do you just have problems with your hair where the resection was? All of my hair is thinning. Alot of my bangs fell out. My eyelashes and eyebrows are very thin. I have not had chemo or radiation. I do not know if it is from the surgery or medicine. I just wish everything would go back to the way it was before this happened.0 -
anaplastic oliodendrogliomasurvivor mother of 2 said:oligodendroglioma
May 2010 I had my brain tumor removed. They said it was 100% resection. I have had no chemo or radiation at this time. They said it was stage/grade II with 1p and 19q co-deletions. All of my MRI's have come back good so far. They said my median range was 8 - 10 years. You said your tumors have both come back benign with no change in grade 3. How soon did yours come back? They did not come back as cancerous? My tumor was in my right temporal lobe. A few days after the surgery I had a seizure so I am on Keppra. Did you have any seizures or do you have to take seizure medicine? They told me I will be on this for a long time. I do not know if it is from the surgery or the Keppra but I can not eat well. I am still losing weight and I just do not feel like myself. I did lose some of my eyesight in my left eye and I feel "off" quite often. My memory is not how it use to be. I can not run or play ball with my boys. I did play bad mitten but anything on my left side I did not see. You were told it maybe 20 years before it comes back? I have a 9 and 5 year old. When I was told 8-10 median range I was and still am upset. My youngest my not even be out of high school or have his drivers license. Do you have problems with memory? If so did it get worse each time you went in to the the new tumors removed? Do you just have problems with your hair where the resection was? All of my hair is thinning. Alot of my bangs fell out. My eyelashes and eyebrows are very thin. I have not had chemo or radiation. I do not know if it is from the surgery or medicine. I just wish everything would go back to the way it was before this happened.
survivor mother of 2,
My husband has the same issue with his sight on the right side. His was a grade 3 and cancer. He is working and has never had a seizure. He is doing very well. They told him 3-5 years. We have an 11 year old and this news was very upsetting. The whole thing is hard to bear. God Bless you and your family.0 -
Hair losssurvivor mother of 2 said:oligodendroglioma
May 2010 I had my brain tumor removed. They said it was 100% resection. I have had no chemo or radiation at this time. They said it was stage/grade II with 1p and 19q co-deletions. All of my MRI's have come back good so far. They said my median range was 8 - 10 years. You said your tumors have both come back benign with no change in grade 3. How soon did yours come back? They did not come back as cancerous? My tumor was in my right temporal lobe. A few days after the surgery I had a seizure so I am on Keppra. Did you have any seizures or do you have to take seizure medicine? They told me I will be on this for a long time. I do not know if it is from the surgery or the Keppra but I can not eat well. I am still losing weight and I just do not feel like myself. I did lose some of my eyesight in my left eye and I feel "off" quite often. My memory is not how it use to be. I can not run or play ball with my boys. I did play bad mitten but anything on my left side I did not see. You were told it maybe 20 years before it comes back? I have a 9 and 5 year old. When I was told 8-10 median range I was and still am upset. My youngest my not even be out of high school or have his drivers license. Do you have problems with memory? If so did it get worse each time you went in to the the new tumors removed? Do you just have problems with your hair where the resection was? All of my hair is thinning. Alot of my bangs fell out. My eyelashes and eyebrows are very thin. I have not had chemo or radiation. I do not know if it is from the surgery or medicine. I just wish everything would go back to the way it was before this happened.
Although drs. will tell you that Keppra doesn't usually cause hair loss . . . when my daughter was on it, her hair was falling out by the handfulls. Within a few days of coming off of it, her hair stopped falling out. There are a lot of different anti-seizure medications. Maybe you can try a different one. They all have side effects.0 -
Change in statuscindysuetoyou said:Hello!
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
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.0 -
Hair losssurvivor mother of 2 said:oligodendroglioma
May 2010 I had my brain tumor removed. They said it was 100% resection. I have had no chemo or radiation at this time. They said it was stage/grade II with 1p and 19q co-deletions. All of my MRI's have come back good so far. They said my median range was 8 - 10 years. You said your tumors have both come back benign with no change in grade 3. How soon did yours come back? They did not come back as cancerous? My tumor was in my right temporal lobe. A few days after the surgery I had a seizure so I am on Keppra. Did you have any seizures or do you have to take seizure medicine? They told me I will be on this for a long time. I do not know if it is from the surgery or the Keppra but I can not eat well. I am still losing weight and I just do not feel like myself. I did lose some of my eyesight in my left eye and I feel "off" quite often. My memory is not how it use to be. I can not run or play ball with my boys. I did play bad mitten but anything on my left side I did not see. You were told it maybe 20 years before it comes back? I have a 9 and 5 year old. When I was told 8-10 median range I was and still am upset. My youngest my not even be out of high school or have his drivers license. Do you have problems with memory? If so did it get worse each time you went in to the the new tumors removed? Do you just have problems with your hair where the resection was? All of my hair is thinning. Alot of my bangs fell out. My eyelashes and eyebrows are very thin. I have not had chemo or radiation. I do not know if it is from the surgery or medicine. I just wish everything would go back to the way it was before this happened.
When my daughter was on Keppra, she lost a lot of hair. The dr. didn't believe it was the Keppra that was causing it, but as soon as she stopped taking it, her hair stopped falling out. There are a lot of different anti-seizure medications. Perhaps you should try a different one.0 -
I am so sorry to hear thisWoodsymom said:Change in status
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.
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, OR0 -
Oligodendroglioma gene therapy clinical trials
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. Brown0 -
Change in statusWoodsymom said:Change in status
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.
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!0
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