Oligodendroglioma
Comments
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Hi Cindycindysuetoyou said: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
Hi!
I to only check in to see reply’s now and then. Life gets busy, completely understandable.
Jordan has been diagnosed with grade 2 Oligodendroglioma. He had surgery last month and we went in on Friday to hear some more results.
He does not have the gene deletions that would indicate the tumor will be more sensitive to chemo. It as well, like your son was not completely removed, this would have left him impaired. It had spread slightly to the right hand side in a part of the brain which is used to communicate with each side. We were told we need to just wait and monitor it now. Being grade 2 it is slow growing. Should it get to a point where they see it spreading once more, then they will start radiation. The doctors exact words were that he has “a good decade”. My heart dropped. I had hopes he would have had the deletions and we would move forward with treatments and move forward with life. I understand others have less time, and I also understand anything can happen in a decade, this is just a new “normal” I am trying to let settle in.
It is encouraging to hear that radiation worked well for your son, I too have read many discouraging stories about radiation on here. This may be partly why hearing that was the treatment we are going to eventually need to take was quite discouraging.
Jordan is back to work today, he was advised not to, as he runs heavy machinery and is at risk of seizures now, but his company and him seem to not see a threat in that? They have come to an agreement that he will be running the machines less and doing other duties, sitting at home was just making him stir crazy. He has always been a work-a-holic.
I am struggling with the choice in waiting. My thoughts are automatically wait until it spreads and then radiation to extend his life? Is this how I should be thinking? Or should I be taking comfort in the fact that they do not want to treat him immediately? This is all a huge learning curve. Not only in educating myself but emotionally as well.
Is it ok to ask if they gave your son a life expectancy? Why you think they chose radiation right away after your sons surgery in his case and not in ours?
I will be praying for you and your son as well! Thank you for your reply!
Ashley0 -
hello!AshleyWF said:Hi Cindy
Hi!
I to only check in to see reply’s now and then. Life gets busy, completely understandable.
Jordan has been diagnosed with grade 2 Oligodendroglioma. He had surgery last month and we went in on Friday to hear some more results.
He does not have the gene deletions that would indicate the tumor will be more sensitive to chemo. It as well, like your son was not completely removed, this would have left him impaired. It had spread slightly to the right hand side in a part of the brain which is used to communicate with each side. We were told we need to just wait and monitor it now. Being grade 2 it is slow growing. Should it get to a point where they see it spreading once more, then they will start radiation. The doctors exact words were that he has “a good decade”. My heart dropped. I had hopes he would have had the deletions and we would move forward with treatments and move forward with life. I understand others have less time, and I also understand anything can happen in a decade, this is just a new “normal” I am trying to let settle in.
It is encouraging to hear that radiation worked well for your son, I too have read many discouraging stories about radiation on here. This may be partly why hearing that was the treatment we are going to eventually need to take was quite discouraging.
Jordan is back to work today, he was advised not to, as he runs heavy machinery and is at risk of seizures now, but his company and him seem to not see a threat in that? They have come to an agreement that he will be running the machines less and doing other duties, sitting at home was just making him stir crazy. He has always been a work-a-holic.
I am struggling with the choice in waiting. My thoughts are automatically wait until it spreads and then radiation to extend his life? Is this how I should be thinking? Or should I be taking comfort in the fact that they do not want to treat him immediately? This is all a huge learning curve. Not only in educating myself but emotionally as well.
Is it ok to ask if they gave your son a life expectancy? Why you think they chose radiation right away after your sons surgery in his case and not in ours?
I will be praying for you and your son as well! Thank you for your reply!
Ashley
Hi, Ashley.
In my opinion, grade two is good news, especially compared to what you could have heard. We were told that grade two is usually much more slow growing. We also have been told by other doctors (at NIH) that the lack of gene deletions is not an absolute guarantee set in stone that chemo will not be as effective. My understanding (and I am no doctor--just a scared mom) is that the statistics show a more favorable response is more likely with the gene deletions than without. Our doctor at NIH said that he saw people who had the deletions and still did not do that well, and he saw people who did not have them, but still did good. I believe that's one of the problems with oligodendrogliomas...they are tricky and unpredictable. But that could work in our favor, since we don't like what they predict.
David is being treated at OHSU...Oregon Health Sciences University in Portland, Oregon. David was diagnosed on May 15th, 2009. They told us when he was diagnosed that the median life expectancy for David was three to five years. It still makes me feel like throwing up to type that. We are at two and a half years.
NIH would not give us any life expectancy figures. They said every case is different, and every tumor is unique to the person who has the tumor. And everyone responded differently to treatment. They did tell us (and so did OHSU) that David is not "curable." I HATE hearing that, but I tell myself and them that's okay...we can live with it being "manageable." The real issue for us is, of course, how long can we "manage" it....
I think David's doctor recommended radiation and chemo for David right off because his situation was more desperate than Jordan's. Grade three is definitely more serious and more aggressive. Our doctor at first gave us the option to choose radiation or chemo...until the FISH results came back with no gene deletions. Then he said that we did not have the option...we needed to do both together. We also got a second opinion from Fred Hutchinsons in Seattle. They said to do one or the other, and save the other treatment for later. Then we got a third (tiebreaker) opinion from UCSF. They also recommended that David do both at the same time, so we did.
Is it possible that your doctor wants to take the wait-and-see approach because he doesn't want to use chemo etc. unless he sees active tumor growth? Tumors can become resistant to chemo...if it's not growing and you used chemo, could the tumor develop a resistance to the chemo, and then if it does start growing years down the road, will the chemo no longer be as effective? As far as radiation goes, our radiologist and our oncologist say that they only do radiation once, except in rare instances. Maybe your doctor wants to save that for a possible treatment option down the road? Please be sure to ask your doctor your questions. And if you wouldn't mind, could you please let me know what your doctor says?
I'm sure that Jordan's doctors will do regular MRIs and keep a careful watch on Jordan. If they see any change at all, I would think that they would immediately begin chemo and/or radiation.
Two positives to think about....1) Jordan was able to have surgery and reduce the size of the tumor. Even if they didn't get it all, any reduction in tumor size is a good thing. 2) He is young and I've read and been told that a younger age at diagnosis is a better prognostic factor. I think younger people heal better and their bodies are able to fight it off better.
I also believe that a strong will to live and a fighting attitude make a big difference. Jordan sounds like he has both of those. Please try really hard to focus on every positive thing that you hear and read about. When David was first diagnosed, I googled like a maniac and drove myself crazy. I was in a state of shock and I was trying to learn everything I could about brain tumors. I would read and reread the bad stuff and just cry and cry. Finally I stopped doing that. Now I read the negative information one time and then no more. Any positive stuff....I copy and save it and I read it over and over. I even write some of it on sticky notes and put it on my bathroom mirror. It really makes a difference in my mental outlook. And that makes me be a better support person for David.
There is not a lot I can do for my son. But I can be strong and positive and stand with him and believe that he can beat this back and live longer--a lot longer--than they say he will. How awful would it be to have brain cancer and not have anyone believe with you, that you might be able to beat it? I have a friend whose doctors told him that he had less than six months (pancreatic cancer) to live, and he is going on twelve years. His doctors don't know why. I believe that there are people who beat cancer, even brain cancer. I don't know if David will, but I don't know that he won't, either. So I will continue to keep supporting him, fighting for him, hoping with him, praying for him, believing with him. I believe in miracles.
I hope that my note will bring some encouragement and hope to you. Please stay strong and hold on tight to hope. And give Jordan a hug for me. He is one year older than my son.
Love, blessings and peace to you,
Cindy in Salem, OR0 -
Cindycindysuetoyou said:hello!
Hi, Ashley.
In my opinion, grade two is good news, especially compared to what you could have heard. We were told that grade two is usually much more slow growing. We also have been told by other doctors (at NIH) that the lack of gene deletions is not an absolute guarantee set in stone that chemo will not be as effective. My understanding (and I am no doctor--just a scared mom) is that the statistics show a more favorable response is more likely with the gene deletions than without. Our doctor at NIH said that he saw people who had the deletions and still did not do that well, and he saw people who did not have them, but still did good. I believe that's one of the problems with oligodendrogliomas...they are tricky and unpredictable. But that could work in our favor, since we don't like what they predict.
David is being treated at OHSU...Oregon Health Sciences University in Portland, Oregon. David was diagnosed on May 15th, 2009. They told us when he was diagnosed that the median life expectancy for David was three to five years. It still makes me feel like throwing up to type that. We are at two and a half years.
NIH would not give us any life expectancy figures. They said every case is different, and every tumor is unique to the person who has the tumor. And everyone responded differently to treatment. They did tell us (and so did OHSU) that David is not "curable." I HATE hearing that, but I tell myself and them that's okay...we can live with it being "manageable." The real issue for us is, of course, how long can we "manage" it....
I think David's doctor recommended radiation and chemo for David right off because his situation was more desperate than Jordan's. Grade three is definitely more serious and more aggressive. Our doctor at first gave us the option to choose radiation or chemo...until the FISH results came back with no gene deletions. Then he said that we did not have the option...we needed to do both together. We also got a second opinion from Fred Hutchinsons in Seattle. They said to do one or the other, and save the other treatment for later. Then we got a third (tiebreaker) opinion from UCSF. They also recommended that David do both at the same time, so we did.
Is it possible that your doctor wants to take the wait-and-see approach because he doesn't want to use chemo etc. unless he sees active tumor growth? Tumors can become resistant to chemo...if it's not growing and you used chemo, could the tumor develop a resistance to the chemo, and then if it does start growing years down the road, will the chemo no longer be as effective? As far as radiation goes, our radiologist and our oncologist say that they only do radiation once, except in rare instances. Maybe your doctor wants to save that for a possible treatment option down the road? Please be sure to ask your doctor your questions. And if you wouldn't mind, could you please let me know what your doctor says?
I'm sure that Jordan's doctors will do regular MRIs and keep a careful watch on Jordan. If they see any change at all, I would think that they would immediately begin chemo and/or radiation.
Two positives to think about....1) Jordan was able to have surgery and reduce the size of the tumor. Even if they didn't get it all, any reduction in tumor size is a good thing. 2) He is young and I've read and been told that a younger age at diagnosis is a better prognostic factor. I think younger people heal better and their bodies are able to fight it off better.
I also believe that a strong will to live and a fighting attitude make a big difference. Jordan sounds like he has both of those. Please try really hard to focus on every positive thing that you hear and read about. When David was first diagnosed, I googled like a maniac and drove myself crazy. I was in a state of shock and I was trying to learn everything I could about brain tumors. I would read and reread the bad stuff and just cry and cry. Finally I stopped doing that. Now I read the negative information one time and then no more. Any positive stuff....I copy and save it and I read it over and over. I even write some of it on sticky notes and put it on my bathroom mirror. It really makes a difference in my mental outlook. And that makes me be a better support person for David.
There is not a lot I can do for my son. But I can be strong and positive and stand with him and believe that he can beat this back and live longer--a lot longer--than they say he will. How awful would it be to have brain cancer and not have anyone believe with you, that you might be able to beat it? I have a friend whose doctors told him that he had less than six months (pancreatic cancer) to live, and he is going on twelve years. His doctors don't know why. I believe that there are people who beat cancer, even brain cancer. I don't know if David will, but I don't know that he won't, either. So I will continue to keep supporting him, fighting for him, hoping with him, praying for him, believing with him. I believe in miracles.
I hope that my note will bring some encouragement and hope to you. Please stay strong and hold on tight to hope. And give Jordan a hug for me. He is one year older than my son.
Love, blessings and peace to you,
Cindy in Salem, OR
Hi Cindy,
Thank you for your email. Your positive attitude in all this is very uplifting.
Jordan has booked an appointment to see his doctor as soon as possible. We are going to get our hands on all the information we need and get a second opinion. He has been content in letting things sit the way they are, but agreed it may be best just to hear it twice. This brought some comfort to me.
I struggle on my own time with what is going on. Tears fall, I question god, I question everything for that matter, but always on my own. I stick to being positive and letting him know how wonderful and amazing he is when we are together, I assure him everything is going to be fine as well and we are going to fight this. It’s hard not to be positive when speaking about it with him, he has no doubt that he has plenty more years than what they stated. I sometimes see it as denial, but you are correct in keeping positive and how that will help win this fight!
I received my patient & family handbook yesterday from the Brain tumour foundation of Canada. This is when I read they use radiation once due to the damage it can cause. This answered some of my “why wait” questions, but still think there is something else we can be doing now. Doing nothing at all just is not sitting right with me, something in my gut is telling me there is more we can do.
I have started sharing brain tumour awareness with family and friends. Encouraging donations to the brain tumour foundation website. We will be fundraising next month as well. Whatever it is I can do, I will on my end! I will fight this in my own way alongside Jordan. Fighting for a cure, spreading awareness, this helps ease some part of me. “There is not a lot I can do for my son” I know that feeling to well, learning and educating others seems to replace that helplessness. I to have stopped goggling information and try to stick to the positive stories! My heart breaks for those who have lost loved ones to this cancer, and one day that could very well be me, but for now, while he is here, I will not take for granted one minute and I will do what I can to help Jordan and everyone else who’s life has been effected by this.
My thoughts and prayers are with you, and when we receive any new news, I will be sure to let you know!
Ashley in Vancouver, BC0 -
tamlyn54 UAB Hospital Birmingham Alabamatamlyn54 said: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.
Tamlyn54,
My husband has been seeing Dr. Nabors a neuro-oncologist at the Kirkland Clinic in Birmingham. I have the up most respect for this doctor. He loves me and my husband and really cares about finding the right treatments for my husband. He is a wonderful doctor and I would recommend him to anyone. Our Lord and Savior and Dr. Nabors has kept my husband alive for all these years. My thoughts are always on my husband and this tumor.
We live in Decatur, Alabama which is about an hour and a 1/2 drive to Birmingham and the whole time I am driving my husband down there I am praying to God that his MRI is stable
and that I am thankful for all God has done for us. This last MRI showed change and Dr. Nabors put my husband on Avastin. On the way home I thanked God again for all he has done for us even though it wasn't what I wanted to hear. I get so scared and sometimes forget what I am doing because the fear just overwhelms me. Then I have to go back and remember that God is in control and I just need to put my faith in him and let God carry it for me.
But sometimes I take it back and here comes the fear again. Sorry to go on and on but my husband 3rd Avastin treatment is tomorrow and I am in tears right now because I love him with all my heart and I hate what this tumor does to him. Dr. Nabors #205-934-1432. The hospital is wonderful as well. We were there 4 months when my husband got a bone flap infection. We went to the Spain Rehab where he had to learn to crawl,walk,talk,feed his self everything just like a new born baby. They were wonderful people and they took care of all his needs. When we left they had taught him everything and you would have never know that he had been thru all that. You and your husband will be in my prayers daily and if I can help you in any way let me know and I will give you my telephone # or e-mail address. May God bless! Pam0 -
Oligodendroglioma, Grade 2ish (2 - 3)lauraatvalley said:I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.
Hang in there Laura. My son's tumor was in the Lfrontal lobe, and he had resection in 2006, now to repeat beginning of December. "Debulking" surgery, they call it, and he was ok for 5 years as well. He's scared of everything related to his quality of life, Job, health, and continued progression of this "ALIEN". THey plan to radiate several weeks after surg, when they can safely. He has some processing problems, but nothing anyone who didn't know would be able to discern readily, and this has been since first surg.
Stay positive, as best you can, under the stress, and use this network, as we're all in the same boat, in one capacity or another. Oh, he is 36 years old, and original tumor was the size of a lemon. Dr. said he got as close to motor cortex at the time, as he possibly could, and said the "fingerings" of this type of tumor will continue.
You're in my thoughts and prayers.
Catherine0 -
oligolauraatvalley said:I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.
Dear Laura, I just joined the Cancer survivor network and was reading through the posts and yours stood out to me as you never posted again after posting you had found another tumour. My son was dx at age 8 (4 years ago) with an Oligo grade II and he going soon for his 4yrs MRI check up. He too had no Radiation or chemo like yourself and just had a resection performed and was told they thought they got it all. I know from the amount of research I've done that that means nothing and that this ugly tumour will rear it's head again some time and I live in dread of that day hoping that every MRI will not be "the one". I understand where you must have been coming from when you posted your last blog and was just wondering how things are going for you at the moment. All good I hope ( well as good as it gets with BT patients). Please drop me a line if you feel up to it as I'd love to give you some support or just someone to talk to who knows the walk. Kind Regards Fiona0 -
My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.lauraatvalley said:I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.
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My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.lauraatvalley said:I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.
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My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.lauraatvalley said:I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.
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Kathiekathiempita said:My daughter had surgery in 1997 for an Olio.11.. benign. Her recent mri showed the tumor has returned and a bit larger. So she was without occurance for 12 years without ever having chemo or radiation. I think this time around she wont be able to dodge it. Her surgery is scheduled for this December. We are numb.
Hi Kathie,
I’m sorry to hear of your daughters recurrence. 12 years with clear MRI’s is a wonderful thing, but I can understand the disappointment in having it appear again.
Many new discoveries and changes in the way they do things I’m sure in the 12 years since she was first diagnosed!
My thoughts and prayers are with you and your daughter for a speedy recovery and every clear MRI in the future.0 -
Thanks so much for the phoneFIGHT FOR LIFE said:tamlyn54 UAB Hospital Birmingham Alabama
Tamlyn54,
My husband has been seeing Dr. Nabors a neuro-oncologist at the Kirkland Clinic in Birmingham. I have the up most respect for this doctor. He loves me and my husband and really cares about finding the right treatments for my husband. He is a wonderful doctor and I would recommend him to anyone. Our Lord and Savior and Dr. Nabors has kept my husband alive for all these years. My thoughts are always on my husband and this tumor.
We live in Decatur, Alabama which is about an hour and a 1/2 drive to Birmingham and the whole time I am driving my husband down there I am praying to God that his MRI is stable
and that I am thankful for all God has done for us. This last MRI showed change and Dr. Nabors put my husband on Avastin. On the way home I thanked God again for all he has done for us even though it wasn't what I wanted to hear. I get so scared and sometimes forget what I am doing because the fear just overwhelms me. Then I have to go back and remember that God is in control and I just need to put my faith in him and let God carry it for me.
But sometimes I take it back and here comes the fear again. Sorry to go on and on but my husband 3rd Avastin treatment is tomorrow and I am in tears right now because I love him with all my heart and I hate what this tumor does to him. Dr. Nabors #205-934-1432. The hospital is wonderful as well. We were there 4 months when my husband got a bone flap infection. We went to the Spain Rehab where he had to learn to crawl,walk,talk,feed his self everything just like a new born baby. They were wonderful people and they took care of all his needs. When we left they had taught him everything and you would have never know that he had been thru all that. You and your husband will be in my prayers daily and if I can help you in any way let me know and I will give you my telephone # or e-mail address. May God bless! Pam
Thanks so much for the phone number. He is the doctor I have been reading about. We go to MD Anderson in Dec and I will get our Doctor there to make the recommendation. We move back to Bama in January so we will need to have all that set up. I truly understand how you feel. We have gone through so many changes with this last surgery and I hold my breath everytime we have a MRI. I have to also renew my mind and allow the Lord to take the driver seat in this thing and know that He is directing our path. My email is tamalyn54@aol.com. If you can drop me a line would like to hear from you.
God Bless You.0 -
Radiationdannywf said:I was diagnosed 5 months ago with oligodendroglioma ll
I am on 3 types of chemo and maybe radiation soon. Were you really sick or just some times. I just finished my 3rd round and my body hurts, no energy and lately always sick to my stomach. Is this going to get worse?
I found this out 2 weeks after I had a baby girl. So as you know it is taking so much out of me. Nothing seems to make me feel better.
Dannywf,
I was diagnosed with oligo in 2003, had a surgery, took chemo for 12 months and , I do not know why, was never offered any radiation treatment. I am doing all right now and would like to say something.
In several years after my surgery I met a neurologist ( one of the best I have ever met ) who said it was very good I had not had any radiation because
in long run she always can see some damage done to the brain in those patients who had radiation.
if you can do without radiation- think about it.0 -
Duke - dr. FriedmanMamike 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.
Mamike,
Just wanted to see how you are doing. I just under went surgery on 12/12/11 for an oligo grade 2 in right frontal lobe. I experienced a post op stroke which has limited my movement on my left side mainly my left arm/hand/ foot, but rehabbing to get as close to "normal" as possible. Dr. Friedman at Duke also performed my surgery and has not recommended any radiation etc at this time.Just curious to see what type of treatment you are on now. Originally doc said he could remove at least 60% but my last follow up MRI on1/24 Friedman stated he got a lot more than he anticipated which is good news. After looking at the MRI I could barely see anything, but of course my eyes are different from the docs. Again just curious to see how you are doing and if any treatment plans are in the near future other than monitoring every 2 months? I wish you luck! Friedman is one of the best in the nation!0 -
My husband was diagnosed inunknown said:This comment has been removed by the Moderator
My husband was diagnosed in May 2008, Oli 3, inoperable. He did 6 weeks of radiation and chemo. To date, he has had no change, no more treatments. The only problem he had was from the steriods they put him on for swelling. We are coming up to the 4 year mark of great MRI's and is due for his next one on March 20. He has gone back to work and is even working on his ticket to be a heavy duty mechanic!! He was 42 years old when diagnosed,no seizures, just confusion, dizzyness, vision problems and mild headaches. He also had some paranoia. Thought I was poisoning him! I hope all goes well for you!!
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Cindy/AshleyAshleyWF said:Cindy
Hi Cindy,
Thank you for your email. Your positive attitude in all this is very uplifting.
Jordan has booked an appointment to see his doctor as soon as possible. We are going to get our hands on all the information we need and get a second opinion. He has been content in letting things sit the way they are, but agreed it may be best just to hear it twice. This brought some comfort to me.
I struggle on my own time with what is going on. Tears fall, I question god, I question everything for that matter, but always on my own. I stick to being positive and letting him know how wonderful and amazing he is when we are together, I assure him everything is going to be fine as well and we are going to fight this. It’s hard not to be positive when speaking about it with him, he has no doubt that he has plenty more years than what they stated. I sometimes see it as denial, but you are correct in keeping positive and how that will help win this fight!
I received my patient & family handbook yesterday from the Brain tumour foundation of Canada. This is when I read they use radiation once due to the damage it can cause. This answered some of my “why wait” questions, but still think there is something else we can be doing now. Doing nothing at all just is not sitting right with me, something in my gut is telling me there is more we can do.
I have started sharing brain tumour awareness with family and friends. Encouraging donations to the brain tumour foundation website. We will be fundraising next month as well. Whatever it is I can do, I will on my end! I will fight this in my own way alongside Jordan. Fighting for a cure, spreading awareness, this helps ease some part of me. “There is not a lot I can do for my son” I know that feeling to well, learning and educating others seems to replace that helplessness. I to have stopped goggling information and try to stick to the positive stories! My heart breaks for those who have lost loved ones to this cancer, and one day that could very well be me, but for now, while he is here, I will not take for granted one minute and I will do what I can to help Jordan and everyone else who’s life has been effected by this.
My thoughts and prayers are with you, and when we receive any new news, I will be sure to let you know!
Ashley in Vancouver, BC
I am in the same situation as your loved ones.I live in Vancouver, BC, but orignially from Ireland and I have a grade II Olidendraglioma on my left frontla lobe which has since been found to be ROH 1P and thus not as susceptable to Chemptherapy.
I collapsed at a music festival last year and banged my head. The resulting CT scan showed a "mass" on my brain, which was then investigated further and turned out to be a "benign" tumor. Hearing the word benign put me at ease, but turns out it shouldn't have. I have since had surgery to remove the tumor. The first surgery didn't go as well as had been hoped so I went back in a few days later and they got some more out. There were complications in that part of the tumor encased a motor nerve which they were very worried about and in the end decided not to go near it.
I have been to see the Nuerosurgoen since then and he referred me on to the BC Cancer agancy. He had mentioned the whole 10 year thing to me but I just ignored that, wanting to believe I didn't hear it and that someone else would tell me differently. My condition has been stable over the past 6 months since surgery.
I am due to undergo radiation therapy in the next few weeks. After meeting with the oncologist from BC Cancer agency I sort of blanked out and forgot all the questions I wanted to ask. The one question I did ask him was about the long term outlook and he mentioned "not being able to look beyone the horizon of 10 years". I felt sick to my stomach. It's just hitting home with me that I may not live beyond the next 10 years. I'm 28. I have to put on a brave face around my family, who flew over to visit me last year, and my friends, who all believe that the tumor resection was a sucess and that there's going to be no further issues. The word benign tends to give people, including myself, a sense of false hope.
There's very few people who I have told about my updated outlook and scheduled treatment. I have been googling this stuff non stop for the past couple of days and I have to say your posts are the ones that really struck a chord with me as it's the exact same diagnosis that I have been given.
There's not much I can do, other than get on with life and enjoy it as best I can. It's definitely given me a different outlook on life and in turn given my family and friends a different outlook too. Hopefully, they will come up with a cure for this condition in the next decade or so. One can only hope.
Daniel0 -
my granny got a similar one...cushla69 said: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.hi there,
sorry to hear about this...my granny also got detected with this and has already undergone radiation and chemo (temodar). her tumour is in the right side of her brain and that has affected her left side body...she's not able to move herself...we are not sure whether post radiation and chemo, there is significant amount of weakness to the extent that the patient is not able to lift herself...? if yes, how long does this painful period last...and how quickly does the recovery take place post radiation and chemo....even if temporary? any experiences to share about post-radiation and chemo period?
thanks a lot...to everyoneo on this platform for sharing their experiences....it helps a lot.
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it really dependsballoon said:my granny got a similar one...
hi there,
sorry to hear about this...my granny also got detected with this and has already undergone radiation and chemo (temodar). her tumour is in the right side of her brain and that has affected her left side body...she's not able to move herself...we are not sure whether post radiation and chemo, there is significant amount of weakness to the extent that the patient is not able to lift herself...? if yes, how long does this painful period last...and how quickly does the recovery take place post radiation and chemo....even if temporary? any experiences to share about post-radiation and chemo period?
thanks a lot...to everyoneo on this platform for sharing their experiences....it helps a lot.
it depends on whether the weakness is from the tumor, or the treatment, or swelling. Sometimes steroids can help if it's from swelling. If it's from the tumor, it may improve if the tumor responds to the treatment. If it's from the radiation, it's likely permanent, as radiation can be damaging to healthy brain cells as well as tumor cells. Every patient is different and it's very difficult to say how long it will take to recover if the effect is temporary.
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Yes there is
Hi,
We had the same case (grade 3) and it has been 4 years - 2 of treatment and 2 of piece
So yes, there is hope.
Make sure that you keep your medical records in place for the future and so that you feel in control. I use a great ipad app called Hello Doctor http://goo.gl/WJDh8K
Try it and gool luck!
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Hey first timer!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..Hello love, just read your post. Are you still around? Very very anxiously awating a response. You see I know someone who's case is exactly similar to yours, ditto. I really hope you're doing well! looking forward to hearing from you.
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