Oligodendroglioma

cindysuetoyou

MSDixieDiva said:

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. Brown

Thank you
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

MSK3

Woodsymom 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.

Sister with same DX
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.

Godworks1ders2011

Oligodendroglioma or Mixed Grade 2-3 HELP!!
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.

Mamike

lauraatvalley said:

Oligo grade II
This is my first time responding, but I wanted everyone to know that I had a grade II oligo removed in January of 2003 with no follow-up radiation or chemo. It was located in my right temporal lobe and the the surgeon told my family he "got everything he could see." At he 5 year mark the MRI showed some contrast enhancement (something we had never seen before even before the resection)but they think that is more than likely scar tissue. I just passed the 7 year mark and no changes:) I have my annual MRI tomorrow morning and I am sure all will be fine. Although I am very nervous and have spent the last week scouring the web looking for recurrence rates (something I tend to do every year) I am remaining positive (well, kind of, I tend to get more nervous as the years go on since I've heard they can come back.) Not knowing if or when it might return is the scary part, but I have tried very hard to convince myself that I will never see it again:) It is nice to read your stories and know I am not alone:)

Olio
Hi, I also had an Olio removed this past June, June 27th actually. I was told that they got got all of it out but the oncologost reccomended 6 weeks radiation followed by chemo. I have been in contact with Duke University, Dr. Friedman. He has all my records and he is reccomending doing nothing more now than just watching and monitoring this thing with MRIs every two-three months. I'm going down to see him at the end of August for a two day work up. I am so confused about what the right thing to do. Any advice?

Mamike

IrishMCH1968 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.

No Follow Up
IrishMCH:

I also had a craniotomy for a grade 2 Olio this past June. I am now 6 weeks out from surgery and have yet to start a follow up program of treatment. One oncologist reccomended radiation with Temador. Dr. Friedman from Duke reccomended doing nothing, just monitoring with MRI's every couple of months. I really don't know what to do. My Olio was located in the left frontal lobe so I'm actually doing pretty well all things considered. I'm going to Duke at the end of this month for a two dauy work up. Maybe he can clarify things for me. Wish me luck.

banana0424

Kanoki said:

Still Here....
This is my first post as well so I will give you a little background first. I was diagnosed in September of 2003 with a grade II mixed Oligodendroglioma. I was given the option of doing nothing and taking a wait and see approach or being more aggressive and attempting to remove as much as possible with surgery. I chose the surgery option and they were able to remove about 2/3 of the tumor from my left frontal lobe. While I was on the table the surgeon spoke to my family and told them he could try to get the rest but he would have to remove so much good brain tissue that damage was likely and there was a large risk of me coming out of the surgery a different person. Fortunately my family made the right decision and decided against any further removal. I started Temodar in December of 2003 and continued that until February of 2006 with a lapse due to the onset of some severe side effects that required stopping treatment for about 4-5 months.

My doctors were going to do radiation therapy but at the last moment it was decided to hold off. My oncologist has been consulting with M.D. Anderson in Texas since my diagnosis and they actually recommended holding off on radiation due to the long term side effects in someone my age ( I was 34 at time of diagnosis)and the fact that radiation results apparently are a mixed bag when it comes to Oligo's.

I give you all that to say I am still well and the tumor remains stable. I am down to having MRI's every 6 months and it appears there has been no progression of the tumor at all after 7 years. I am so thankful that in my case we decided not to go with the radiation treatment. Like you, I do have the 1p-19q deletion and from what I am told that is a great prognostic factor and means the tumor will normally have a much greater response to chemo treatment.

I wish I could tell you the tumor was gone but unfortunately it is still there, just not doing anything. I have never had a seizure but in your case it sounds like you don't have much of a choice, 28 Gran Mals is obviously not something that can go unchecked. My best recommendation would be to talk at lenght to your doctor's and find out the pro and cons of the different available treatments and what your individual risk factors are. There is an awful lot of information out there on the web and a lot of it is conflicting and most of it can scare you to death. Take it with a grain of salt but keep looking as your best defense right now is arming yourself with information so that you know the questions to ask your doctors.

It sounds like you know quite a bit about the Oligodendroglioma
I am looking for some answers for my 19 year old son. I see that you are 7 years out on your sugery, and I was wondering if you know anything about what has been going on with him. He had his 50 cent piece size tumor removed about a year and a half ago. No radiation or chemo afterwards. He seemed to be doing very well but a couple of months ago admitted to me that every once in awhile his hand and arm would sort of "sieze up" on him, along with one side of his face. I asked him how long and how often, and he said it seemed to be only when he had a shot of adrenaline-my boy is fearless, and has always been the best athelete, etc. But he said it happened when he got excited. Then this morning, he was actually brought home by the police after staying the night at a friends because he was "out of sorts". They thought he was trying to break into someone's car or house, but once I talked with him ,I realized that he was not himself. I actually thought that he was on drugs or something and took him to the hospital. I had him tested and I told them his history with the brain tumor. They did a cat scan, and could see he'd had surgery. The tumor is not coming back, and the drug test was clean. We're not sure what caused him to lose what we can figure was about 8 hours. He can't remember anything from that time period. It is very strange. Has anyone else experienced this sort of thing after a tumor removal? He has a followup and MRI scheduled for the 24th, but I am very worried about him in the meantime. Any info would be helpful! Thanks!

sadinholland

Godworks1ders2011 said:

Oligodendroglioma or Mixed Grade 2-3 HELP!!
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.

Has anyone had this happen that has a Anaplastic Olio Grade 3?
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

ktboxler

cindysuetoyou said:

Please be encouraged.....
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

Husband recently passed from an Anaplastic Oligodendroglioma
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

ktboxler said:

Husband recently passed from an Anaplastic Oligodendroglioma
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

Hi, Tracy.
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

cindysuetoyou

Godworks1ders2011 said:

Oligodendroglioma or Mixed Grade 2-3 HELP!!
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.

Hello
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

FIGHT FOR LIFE

firemanswifeofdb said:

First timer....
I was diagnosed at the end of July with oligodendroglioma (stage 3) and I am so scared.. I read you post and it helped a bit.. I am 30 with 3 kids and worried to death.. I have not started the treatments yet. In the process of working up a plan of action. I will be starting radiation next week... After that I believe the plan is to start the Temador. Not 100% sure yet.. Unlike your case, I had a siezure and that is what sent me to the hospital. They thought that it was only high blood sugar (never had a problem with that before) but my husband and mom kept on them because I was complaining how bad my head hurt. I guess the whole fear of not knowing is what scares me the most. I look at the statistics and it does not look good. I am a fighter, but sometimes I wonder if I am strong enough for even this. I guess I am on here just looking for someone who knows emotionally what this is like..

My husband was diagnosed in
My husband was diagnosed in 1997 with oligodengroglioma grade 2 after having a seziure.
He had surgery in 1997 and they did not get it all so he had surgery again in 2000.
After the surgery in 2000 it came back anaplastic oligodendroglioma grade 3. We then
were referred to UAB Hospital in Birmingham Alabama. They told him 3/5 years survival.
We decided to go thur a clinical trial. They harvested his stem cells and froze them. He
then went thru PCV chemo for about 6 months and they put him in the hospital for the bone marrow transplant. They bottomed out his immune system. He was in isolation for about 6 weeks and they unfroze the stem cells that they had harvested previously and injected them back in his boby. Day by day he began to feel better. He did wonderful. In 2005 we went for MRI and the tumor had returned. They did surgery again and removed all that they could but it is impossible to remove the infilirating fingers. He then went on Temodar for 12 cycles and he did very well with the temodar. 2009 tumor returned. He went on Temodar again on the 21 day regimen 75 mg. He did really well. But tumor began to grow again in 2010 and he went thru radation therapy along with the Temodar. Went back August 2011 and MRI showed some changes. Tumor not any bigger but change in how it looked. Today 9/9/11 we started our first round of Avastin a blood starvin therapy. I know he is going to do great because He knows his healer Jesus Christ our Lord and Savior. Noboby can tell you how long you will survive. They told him 3/5 years and he is now going on 14 years. He does get weak and his memory is not that great but he does know that all he has been thru Jesus has been right by his and my side. I hope this will encourage you to not believe everything
you read and are told. I am looking forward to a long life with my husband and having many
wonderful times. What I want you to know is God is the mighty healer and only thru him is everything possible. You will be in my prayers! God bless!

sadinholland

FIGHT FOR LIFE said:

My husband was diagnosed in
My husband was diagnosed in 1997 with oligodengroglioma grade 2 after having a seziure.
He had surgery in 1997 and they did not get it all so he had surgery again in 2000.
After the surgery in 2000 it came back anaplastic oligodendroglioma grade 3. We then
were referred to UAB Hospital in Birmingham Alabama. They told him 3/5 years survival.
We decided to go thur a clinical trial. They harvested his stem cells and froze them. He
then went thru PCV chemo for about 6 months and they put him in the hospital for the bone marrow transplant. They bottomed out his immune system. He was in isolation for about 6 weeks and they unfroze the stem cells that they had harvested previously and injected them back in his boby. Day by day he began to feel better. He did wonderful. In 2005 we went for MRI and the tumor had returned. They did surgery again and removed all that they could but it is impossible to remove the infilirating fingers. He then went on Temodar for 12 cycles and he did very well with the temodar. 2009 tumor returned. He went on Temodar again on the 21 day regimen 75 mg. He did really well. But tumor began to grow again in 2010 and he went thru radation therapy along with the Temodar. Went back August 2011 and MRI showed some changes. Tumor not any bigger but change in how it looked. Today 9/9/11 we started our first round of Avastin a blood starvin therapy. I know he is going to do great because He knows his healer Jesus Christ our Lord and Savior. Noboby can tell you how long you will survive. They told him 3/5 years and he is now going on 14 years. He does get weak and his memory is not that great but he does know that all he has been thru Jesus has been right by his and my side. I hope this will encourage you to not believe everything
you read and are told. I am looking forward to a long life with my husband and having many
wonderful times. What I want you to know is God is the mighty healer and only thru him is everything possible. You will be in my prayers! God bless!

They keep telling my husband
They keep telling my husband the same thing, 3-5 years as well. He is doing so well. I am so scared though. I have a strong faith and I believe in God. I am human though and sometimes get veru upset as time goes by. I have mixed emotions. Happy that a year has past, then scared that it's closer to something happening again. I am going to keep praying for him and everyone else fighting this battle! God Bless!

AshleyWF

cindysuetoyou said:

Hello
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

Glad I found you!
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

a018528

Mamike said:

No Follow Up
IrishMCH:

I also had a craniotomy for a grade 2 Olio this past June. I am now 6 weeks out from surgery and have yet to start a follow up program of treatment. One oncologist reccomended radiation with Temador. Dr. Friedman from Duke reccomended doing nothing, just monitoring with MRI's every couple of months. I really don't know what to do. My Olio was located in the left frontal lobe so I'm actually doing pretty well all things considered. I'm going to Duke at the end of this month for a two dauy work up. Maybe he can clarify things for me. Wish me luck.

Elusive Gene Mutations
Mamike, I recently found out I have Stage 2 Olio and afterward a biopsy proved it to be non-malignant. It was actually found in 2007 and was 4cm in size. This summer, an inner ear infection triggered some seizures which prompted the biopsy. During my research on Oligodendrogliomas, I found a recent article from Duke U. about gene mutations. While you were at Duke, did they happen to mention anything about it? The article was published by Johns Hopkins and Duke U. at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720101/

Like you, my neuro-surgeon recommended doing nothing other than monitoring with MRIs. The tumor is 6cm now but I don't have any symptoms since this summer. I take Keppra now, but would like to see other treatment options than craniotomy for these low grade tumors.

FIGHT FOR LIFE

sadinholland said:

anaplastic oliodendroglioma
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.

MY HUSBAND WAS DIGNOSIED
MY HUSBAND WAS DIGNOSIED WITH OLIGODENDROGLIOMA 2 IN AUGUST 1997. HE HAD SURGERY AND IT CAME BACK OLIGO 3. HE HAS HAD PCV, STEM CELL TRANSPLANT, TEMODAR, RADATION AND IS NOW ON AVASTIN. THEY TOLD HIM THE SAME THING 3-5 YEARS. IT HAS BEEN 14 YEARS SINCE HIS ORIGINALLY DIGNOSIS. HE STILL WORKS. MEMORY NOT GOOD. WE CAN ONLY PRAISE THE LORD FOR ALL HE HAS DONE FOR US. YOU CANNOT BELIEVE EVERYTHING THE DOCTORS SAY. GOD MADE US ALL DIFFERENT! I RESEARCH EVERYTHING I CAN FIND ON NEW TREATMENTS AND I KNOW ONE DAY THEY WILL FIND A CURE! HE HAS HAD 2 TREATMENTS OF AVASTIN AND WE GO FOR MRI OCT 20TH. SO I AM PRAYING THE BLOOD STARVING TREATMENT WILL HAVE STARVED THE TUMOR. MAY GOD BLESS YOU AND WRAP HIS LOVING ARMS AROUND YOU FOR HE KNOWS THE CRISIS YOU ARE GOING THRU! JUST REMEMBER YOU DON'T HAVE TO WORRY ABOUT TOMORROW BECAUSE GOD IS ALREADY THERE! GOD BLESS!

cushla69

a.s. said:

my husband
hi betsy seems like your condition is very similar to my husband, did u have surgury too or just radiation and chemo?????do u have any partial seizures?

A.S. i have AA3. i had open
A.S. i have AA3. i had open brain biopsy, radiation and temodar (chemo Pill) dec 21, 2010 to feb 3 2011 restated pill mar3, 2011 then started chemo Iv on aug 1, 2011. I also take keppra cause i have partial seizures. i am very forgetful and have a lot of short term memory loss.

cushla69

monie 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.

Monie, i agree i think u
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.

cushla69

Carrie 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.

if i have been told ive had
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.

tamlyn54

FIGHT FOR LIFE said:

My husband was diagnosed in
My husband was diagnosed in 1997 with oligodengroglioma grade 2 after having a seziure.
He had surgery in 1997 and they did not get it all so he had surgery again in 2000.
After the surgery in 2000 it came back anaplastic oligodendroglioma grade 3. We then
were referred to UAB Hospital in Birmingham Alabama. They told him 3/5 years survival.
We decided to go thur a clinical trial. They harvested his stem cells and froze them. He
then went thru PCV chemo for about 6 months and they put him in the hospital for the bone marrow transplant. They bottomed out his immune system. He was in isolation for about 6 weeks and they unfroze the stem cells that they had harvested previously and injected them back in his boby. Day by day he began to feel better. He did wonderful. In 2005 we went for MRI and the tumor had returned. They did surgery again and removed all that they could but it is impossible to remove the infilirating fingers. He then went on Temodar for 12 cycles and he did very well with the temodar. 2009 tumor returned. He went on Temodar again on the 21 day regimen 75 mg. He did really well. But tumor began to grow again in 2010 and he went thru radation therapy along with the Temodar. Went back August 2011 and MRI showed some changes. Tumor not any bigger but change in how it looked. Today 9/9/11 we started our first round of Avastin a blood starvin therapy. I know he is going to do great because He knows his healer Jesus Christ our Lord and Savior. Noboby can tell you how long you will survive. They told him 3/5 years and he is now going on 14 years. He does get weak and his memory is not that great but he does know that all he has been thru Jesus has been right by his and my side. I hope this will encourage you to not believe everything
you read and are told. I am looking forward to a long life with my husband and having many
wonderful times. What I want you to know is God is the mighty healer and only thru him is everything possible. You will be in my prayers! God bless!

Anaplastic Olio 3 Fight For Life
Thanks for posting your information. My husband first diagnoses in 2003 olio 2 surgery with radiation. Second round of surgery last year 2010 and it came back as anaplastic olio 3. He has taken the temodar and so far tolerated well. He is off of it right now. I see that you guys used UAB hospital in Birmingham, AL. How do you like the doctors and hospital? The reason I ask is we are originally from that area and are looking to move back soon and will need a local neuro-oncologist. Right now we are with MD Anderson/Houston.
God Bless you and yours.

cindysuetoyou

AshleyWF said:

Glad I found you!
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

Hi, Ashley.
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