Grade III: Anaplastic Oligodendroglioma lifespan?
Comments
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memory losscindysuetoyou said:Hi, Ravibalgi
Hi, Ravibalgi.
I'm sorry that we are linked by such a bad situation, but I appreciate your greeting.
We too are hopeful but it's been a rough few months for us. After being cancer free for over two years, David's tumor reappeared and has grown rapidly. You can see some of what we have been through under the thread entitled "our ordeal...sorry it's so long." It is a long post, but a lot has been happening in a short amount of time.
I've heard of PVC...David hasn't taken it yet. He started out on Temodar (after surgery and during radiation, then two years after radiation) and he just now started carboplatin and toposide and melathon. He's only had one treatment and we are waiting to see how David will respond. He has an MRI on 11/28.
I'll be praying that your aunt's FISH evaluation is favorable. Thank you again for your note.
Love and blessings,
Cindy
PS I posted pictures in the "expressions" area on my csn space if you'd like to put faces to our names.
hello
i would like to ask that is it normal to loose memory and logic
after brain surgery? because my brother lost memory, logic after 3 surgeries and even 3 months passed (with chemotherapy and radiotherapy)and it came back only a little?\
I would really appreciate if you help
Anvar0 -
memory and general cognitive imparimentanvar said:memory loss
hello
i would like to ask that is it normal to loose memory and logic
after brain surgery? because my brother lost memory, logic after 3 surgeries and even 3 months passed (with chemotherapy and radiotherapy)and it came back only a little?\
I would really appreciate if you help
Anvar
Hi Anvar,
I had surgery in September for a grade II oligodendroglioma. I have not had any further treatment but I am having similar issues. I have a hard time remembering details and what my GP calls sequencing of events (what task comes next). I have trouble concentrating and comprehending information. I tried to make rice crispy squares and burned then. WHO BURNS RICE CRISPY SQUARES!?!? They are so easy to make. I also had trouble following simple directions to make pancakes for me niece. I just stood there and stared at the cupboard. When this happens I get really overwhelmed and give up. I don't have much confidence to do things that I have in the past few months screwed up. I could not follow conversations at a Christmas party and looked like a fool when everyone laughed at a joke and I didn't get it. My GP says it is not necessarily the tumor but the actual craniotomy because they cut through all of the nuerons and "brain connectoins". My GP told me to listen to Mozart to help with memory and do crossword and word searches at a grade 5 level. She told me to set small goals throughout the week such as putting the dishes away one day and putting away laundry then next. This will give a sence of achievement and not tire the brain to the point of having trouble functioning. I have good days when I think everything is great and then I do too much (like clean the whole house) and then get physically tired and cannot put the steps together to make dinner. I am awaiting a neuropsych assessment to target the exact issues I am having and the type of rehab I need to do to get it back. They say it all takes time but it is very frustrating! My independence is gone. I cannot drive and taking the bus is an issue. I am a Medical Secretary for three doctors at a hospital and I am not able to return to work. I used to work full time and go to some type of exercise class three times per week. Now I am trying to do a bit at home and have to function around other's schedules for help. They say it will come back with time but a neuropsych assessment might be helpful. Hope this helps.0 -
I'm 26 same stuff diagnosed
I'm 26 same stuff diagnosed when 21 had surgery' radiotherapy, injected chemo, and now the temodar cycle.
Have had my second surgery after 4 years. So last year. (how many surgeries can one have for this cancer, I would like to know)
I gone through very bad times and at the moment feel on verge of losing it. I feel my parents no longer love me or care about my wellbeing and feel trapped in their house as I cannot work and move elsewhere. recently they even admitted since I no longer have value of earning money for their old age they treat me worse. They don't understand I have cancer and in particular my brain is broken, I have OCD and really short term memory.
Back to subject my doctor wouldn't tell me beyond 5 either. But I have survived so far, it's just so difficult not knowing how long, and whether I should try and for example train to get a job, make new friends, save money,etc. After my diagnosis and initial treatments, I have been optimistic and had started a university level course in law as well as continually looking for a job. But now I have all but given up now since my second surgery.
Although I don't often read about, constipation has been a real problem of mine aswell. Since diagnosis I have tried to eat as I like kind of way, not terrible food just tasty food. But unfortunately it does seem a diet of excessive fruit and veg is the best hope to prevent some of the bad episodes I have experienced.
Sorry if my writing doesn't make sense, English is my second language I am dyslexic and have a part of my brain missing.0 -
My heart goes out to you.Howee said:I'm 26 same stuff diagnosed
I'm 26 same stuff diagnosed when 21 had surgery' radiotherapy, injected chemo, and now the temodar cycle.
Have had my second surgery after 4 years. So last year. (how many surgeries can one have for this cancer, I would like to know)
I gone through very bad times and at the moment feel on verge of losing it. I feel my parents no longer love me or care about my wellbeing and feel trapped in their house as I cannot work and move elsewhere. recently they even admitted since I no longer have value of earning money for their old age they treat me worse. They don't understand I have cancer and in particular my brain is broken, I have OCD and really short term memory.
Back to subject my doctor wouldn't tell me beyond 5 either. But I have survived so far, it's just so difficult not knowing how long, and whether I should try and for example train to get a job, make new friends, save money,etc. After my diagnosis and initial treatments, I have been optimistic and had started a university level course in law as well as continually looking for a job. But now I have all but given up now since my second surgery.
Although I don't often read about, constipation has been a real problem of mine aswell. Since diagnosis I have tried to eat as I like kind of way, not terrible food just tasty food. But unfortunately it does seem a diet of excessive fruit and veg is the best hope to prevent some of the bad episodes I have experienced.
Sorry if my writing doesn't make sense, English is my second language I am dyslexic and have a part of my brain missing.
My heart goes out to you. You see, I am a parent, and along with my husband, primary caretaker of son, who is 34. He has grade 3 anaplastic astrocytoma, diagnosed last April, and can no longer live independently. So, he had to give up his independence and move home with us, which was one of the hardest things for him, and us, to accept.
I can't imagine that your parents don't love you anymore because you have cancer, and have to live with them and can't get a job. Everyone has good and bad days, and I think that when they said that, it must have been one of those bad days.
We love our son beyond comprehension. But we have bad days too. Our son's docs have said that his cancer won't go away. so there are no good options. We retired in 2008, and had big plans for our retirement. Now, that has all changed. Of course, we wish we had our life back, to travel like we did during our first two years. So, it's natural to wish this would all go away so we could return to our former life. But then the reality sets in: if that happens it means our son will no longer be with us. And that is just too painful to think about. So, like I said, there are no good options. The best we can do is to try to enjoy and savor the time we have with him.
Have you tried finding a brain tumor or cancer support group? Or seeing a counselor who specializes in counseling cancer patients and their families?
Good luck to you. Hope things get better.0 -
Hello - Can you please tellsue Siwek said:coming at this from a 10 yr.
coming at this from a 10 yr. survival of my husband. i would tell you that you must make a choice. either oncologist or go with natural medicines. our 10 yr survival has been with traditional medicines. you must be careful about combining traditional and natural medicines as they do not always get along. you need him to be around i understand but be sure that you are at a research and teaching hospital because it is your best chance. 10 yrs ago we drove for over an 1hr 1/2 to get the best care. it was worth it. my husband was in a clinical trial and it shrunk his tumor. not with out some problems but he is with us. i might add that he was also diagnosed with parkinsons(a separate brain disorder but complicating his recovery) please before you add anything natural or holistic check with your oncologist and neurologist.
Hello - Can you please tell me which type of traditional medicines to used?
Thx0 -
There's always hope
I am 2.5 years out from my surgery, and the most recent MRI showed no evidence of a tumor recurring. My current neurosurgeon put me on a two-year recall for the MRIs, for which I am grateful.
I had a craniatomy in July 2009 to remove a large anaplastic oliglodendroglioma from my left frontal lobe. Because it was stage III and also because I had the gene defect, I did the radiation and the Temodar, followed by six months on Temodar.
My scans since the surgery have all been clean, but I did suffer from daily headaches up until last summer when I tried acupuncture. Since late fall, I have far fewer headaches, and the remaining ones I attribute to seasonal allergies.
My original neurosurgeon who removed my tumor did tell me about the statistics, but he also said statistics are not people, and individuals can out perform average life expectancies.
I chose to believe that, and returned to work just 12 weeks after my surgery.0 -
Lifespan Anaplastic Oligodendroglioma
Cindysuetoyou--
I am very sorry to hear of your son's diagnosis, but I hope that my comment here can give you even the faintest glimmer of hope. My mother was diagnosed in 2004 with an anaplastic oligodendroglioma, right parietal. Very long story as short as possible: three resections, massive radiation and a few rounds of Temodar. She did have the 1p/19q gene deletion but wasn't able to tolerate the chemotherapy or her prognosis would most likely have been even better. She made it eight years almost to the day of her diagnosis. We were told initially 2-3 years would be what we should expect. She showed them! Please don't give up hope. (I apologize, I just found this thread. I hope that my timing isn't bad.)
Attitude means so much when battling these things. My mother never gave up hope, never stopped fighting. She refused to give up on any level. Her doctors were baffled by how strong she remained and how hard she was able to fight.
I hope in some small way this helps.
Best wishes to all of you, God bless you.0 -
Question's
Hello Cindy, I am BenLenBo's mother, was viewing his site, and found you. I have a few questions about the type of Oli your son had. Where on his brain? and did David have the
1p19q deletions? We have been through so much as a family when Ben was diagnoised, first
neuro-surgeon from Mayo said 6 months to 3 years. His biopsy was done at Mayo, then was forwarded on to John Hopkins, for diagnoises. This took 6 weeks, felt like a lifetime and we were fighting time we thought. John Hopkins performed a Molecular Genetic Study - and was diagnoised with Grade III Oli with 1p/19q deletions. 99% of his tumor was removed from his left frontal lobe, he suffered no side effects. About 7 weeks out, he started having fluid build up on his forehead, which was releaved by placing a shunt, in and out of surgery (scary). But, were told they do this with newborns. He started 30 radiation and daily temodar while receiving treatment. 1 month out MRI showed no cancer present, but then no tumor was present on MRI right out of surgery also. Ben is presently, taking Temodor, larger dose 5 days on, 28 days off for the next six months as a precaution. Also
will have MRI every 3 months, then six months after two years. We are doctoring at Roger Maris Cancer Center in Fargo, ND. They are affiliated with Mayo and John Hopkins, his doctors only specialize in one area, but work together. They make us feel like family
)
I as a mother, worry, has this been to easy? Will we have a surprise coming? I have read a few posts- I pray for strenth for your son to conquer this cancer and live a long long life. Carol0 -
Hello...BenLenBo said:Question's
Hello Cindy, I am BenLenBo's mother, was viewing his site, and found you. I have a few questions about the type of Oli your son had. Where on his brain? and did David have the
1p19q deletions? We have been through so much as a family when Ben was diagnoised, first
neuro-surgeon from Mayo said 6 months to 3 years. His biopsy was done at Mayo, then was forwarded on to John Hopkins, for diagnoises. This took 6 weeks, felt like a lifetime and we were fighting time we thought. John Hopkins performed a Molecular Genetic Study - and was diagnoised with Grade III Oli with 1p/19q deletions. 99% of his tumor was removed from his left frontal lobe, he suffered no side effects. About 7 weeks out, he started having fluid build up on his forehead, which was releaved by placing a shunt, in and out of surgery (scary). But, were told they do this with newborns. He started 30 radiation and daily temodar while receiving treatment. 1 month out MRI showed no cancer present, but then no tumor was present on MRI right out of surgery also. Ben is presently, taking Temodor, larger dose 5 days on, 28 days off for the next six months as a precaution. Also
will have MRI every 3 months, then six months after two years. We are doctoring at Roger Maris Cancer Center in Fargo, ND. They are affiliated with Mayo and John Hopkins, his doctors only specialize in one area, but work together. They make us feel like family)
I as a mother, worry, has this been to easy? Will we have a surprise coming? I have read a few posts- I pray for strenth for your son to conquer this cancer and live a long long life. Carol
Hello, Carol.
My son's oligodendroglioma was/is on his right frontal lobe. David did NOT have the gene deletions, and when our doctor told us that news, he said that it really impacted the estimate they gave us for his median survival rate. They gave him three to five years. He was diagnosed in May of 2009 so we are nearing the three year mark.
Please forgive me...my memory is terrible these days...but I think that when he was first diagnosed, they thought he would probably have the gene deletions, and I'm pretty sure that they told him that he would most likely not face a recurrence for 15+ years. But I just am not sure if I remember that correctly. That was almost 3 years ago, and I have been so stressed and have had so many different things said to me that I am not sure if that's right.. I do know that the gene deletions are believed to be a significant positive prognostic indicator, so I am very glad to hear that your son has the deletions.
David took Temodar for two years. He skipped two months---May and June of 2011. He skipped May because he was taking college finals and he didn't want "chemo brain" to mess up his scores on his finals. Then he had an appt with a specialist in June about his stomach issues and he didn't take Temodar in June, to see if that would impact his stomach problems. The first week of July, he had two seizures, on the 3rd and 7th. They did an MRI and that's when we found out about the "disease progression." Translation: recurrence.
David asked his NO in May and in June before he skipped the Temodar, and both times, his NO said that since he had been on it for two years, he had enough in his system that he would be okay with skipping it for two months. His NO said that most doctors won't keep you on Temodar more than 2 years anyway. When he had the recurrence, his NO said he would have had it even if he'd taken Temodar those two months. And NIH said the same thing. But I will always wonder...what if he hadn't skipped those months? Would he still be cancer-free? Our NO had told us before that he would keep David on Temodar for as long as SEVEN YEARS...if David could tolerate it. Well, now we will never know, because we are far beyond the use of Temodar. We've moved up to the really nasty chemos...carboplatin, etoposide, mephalan.
You said that as a mother, you worry....has it been too easy? I don't know....but I think that it's great that you are starting off on this road (this road being the battle against brain cancer) with your son doing so well. I had a physical therapist tell me something that I quote here on CSN all the time....you will find that your days will be like the weather...some days will be sunny and bright and everything will go great, and some days will be dark and gloomy and rainy. But just because one day is dark and bad doesn't meant that tomorrow won't be sunny and bright again. Our personal battle has been full of the most terrible low times, followed by incredible highs and great news. I am slowly learning to live one day at a time.
I think that the three best prognostic factors are 1) getting as much tumor removed surgically as possible. 2) a younger age at diagnosis 3) the 1p/19q deletions. You didn't mention how old your son is, but I'm thinking he's in his 20's? If so, then you have all three of the most important factors in your favor. Even if your son is in his thirties, that's still young enough to be able to fight hard and resist this disease and also to be able to tolerate the treatments.
Please hold on to hope, and keep us posted here at CSN.
Love, blessings, and peace to you and your son, and your entire family,
Cindy in Salem, OR0 -
Hi, Rachel.rachelgreene said:Lifespan Anaplastic Oligodendroglioma
Cindysuetoyou--
I am very sorry to hear of your son's diagnosis, but I hope that my comment here can give you even the faintest glimmer of hope. My mother was diagnosed in 2004 with an anaplastic oligodendroglioma, right parietal. Very long story as short as possible: three resections, massive radiation and a few rounds of Temodar. She did have the 1p/19q gene deletion but wasn't able to tolerate the chemotherapy or her prognosis would most likely have been even better. She made it eight years almost to the day of her diagnosis. We were told initially 2-3 years would be what we should expect. She showed them! Please don't give up hope. (I apologize, I just found this thread. I hope that my timing isn't bad.)
Attitude means so much when battling these things. My mother never gave up hope, never stopped fighting. She refused to give up on any level. Her doctors were baffled by how strong she remained and how hard she was able to fight.
I hope in some small way this helps.
Best wishes to all of you, God bless you.
Hi, Rachel.
Thank you for your note. I'm sorry that I didn't reply sooner.
I'm really sorry that you lost your mom. It must have been a really rough road for you. I know I'm hating the road we are on right now....
Thank you for sharing about your mom and her eight years. I hope it works out like that for David....I hope it's even longer...but he does not have the gene deletions and most of the doctors that we've seen have told us that not having the deletions really impacts your survival time. I hope that they are wrong in David's case.
They say that the gene deletions make the tumor more sensitive to chemo, but David doesn't have the deletions, yet he had a very favorable response to the last chemo treatment he had in December, so maybe he will be lucky and his tumor will be more sensitive to the chemo than the doctors think. We will see..he will do more chemo as soon as he recovers from the ordeals we went through in December and January. I am afraid that the tumor is growing unchecked while we hold off on doing chemo, but there's nothing we can do about it. We cannot put David through another chemo treatment until he recovers.
Thank you again for your note, and again, I am very sorry to hear that you lost your mom to this terrible, terrible disease.
Love and blessings,
Cindy in Salem, OR0 -
Benjamin had just turned 28!cindysuetoyou said:Hello...
Hello, Carol.
My son's oligodendroglioma was/is on his right frontal lobe. David did NOT have the gene deletions, and when our doctor told us that news, he said that it really impacted the estimate they gave us for his median survival rate. They gave him three to five years. He was diagnosed in May of 2009 so we are nearing the three year mark.
Please forgive me...my memory is terrible these days...but I think that when he was first diagnosed, they thought he would probably have the gene deletions, and I'm pretty sure that they told him that he would most likely not face a recurrence for 15+ years. But I just am not sure if I remember that correctly. That was almost 3 years ago, and I have been so stressed and have had so many different things said to me that I am not sure if that's right.. I do know that the gene deletions are believed to be a significant positive prognostic indicator, so I am very glad to hear that your son has the deletions.
David took Temodar for two years. He skipped two months---May and June of 2011. He skipped May because he was taking college finals and he didn't want "chemo brain" to mess up his scores on his finals. Then he had an appt with a specialist in June about his stomach issues and he didn't take Temodar in June, to see if that would impact his stomach problems. The first week of July, he had two seizures, on the 3rd and 7th. They did an MRI and that's when we found out about the "disease progression." Translation: recurrence.
David asked his NO in May and in June before he skipped the Temodar, and both times, his NO said that since he had been on it for two years, he had enough in his system that he would be okay with skipping it for two months. His NO said that most doctors won't keep you on Temodar more than 2 years anyway. When he had the recurrence, his NO said he would have had it even if he'd taken Temodar those two months. And NIH said the same thing. But I will always wonder...what if he hadn't skipped those months? Would he still be cancer-free? Our NO had told us before that he would keep David on Temodar for as long as SEVEN YEARS...if David could tolerate it. Well, now we will never know, because we are far beyond the use of Temodar. We've moved up to the really nasty chemos...carboplatin, etoposide, mephalan.
You said that as a mother, you worry....has it been too easy? I don't know....but I think that it's great that you are starting off on this road (this road being the battle against brain cancer) with your son doing so well. I had a physical therapist tell me something that I quote here on CSN all the time....you will find that your days will be like the weather...some days will be sunny and bright and everything will go great, and some days will be dark and gloomy and rainy. But just because one day is dark and bad doesn't meant that tomorrow won't be sunny and bright again. Our personal battle has been full of the most terrible low times, followed by incredible highs and great news. I am slowly learning to live one day at a time.
I think that the three best prognostic factors are 1) getting as much tumor removed surgically as possible. 2) a younger age at diagnosis 3) the 1p/19q deletions. You didn't mention how old your son is, but I'm thinking he's in his 20's? If so, then you have all three of the most important factors in your favor. Even if your son is in his thirties, that's still young enough to be able to fight hard and resist this disease and also to be able to tolerate the treatments.
Please hold on to hope, and keep us posted here at CSN.
Love, blessings, and peace to you and your son, and your entire family,
Cindy in Salem, OR
Thanks for responding so soon Cindy. I find this site frustrating sometimes, reading through all the different stories. Each area of the country seems to tackle brain cancer with their own agenda. Benjamin's story is under his profile, along with a picture. He was the picture of health before and still looks the same, except for the mohawk under his baseball cap. Benjamin has gone back to work full-time, enjoying ice-fishing at Lake of the Woods, and hanging with is family and friends. This has really drawn our family closer, and we were a close family to begin with. His doctor's are amazing, and so positive all the time, one even comes into the room with a huge smile on his face. Staff has be outstanding, and treats everyone like they are special. His Chemo/Doc is Ped/Onc originally from Canada-wonderful, we couldn't have asked for better.
Like you, doctors do make the difference, glad our first Neuro/Surgeon was totally wrong, the replacement has been nothing but positive. I've learned like you to take it one day at a time, and ask questions until I get the right answers, because my son would not ask one question. My daughter who is having her first child this summer, grilled his doctor's for over 40 minutes on this first few meetings. They answered all questions until she was
satisfied. We go to all his appointments as a family, watching individuals going through this on their own is heartwrenching. A hug goes a long way!
When did your son start having seizures? Neuro did an EEG on Ben shortly after surgery, and are planning on doing another in about 2 months. He had surgery siezures- little
electric charges- being controlled by Keppra, but is to come off that drug, because he has had no siezures since surgery- precaution by Doctor's.
Also, did your son take a Motion Sickness Med 20 minutes before his Temodar, and after a meal and before bedtime? That has been our routine! Hope David is going better today, will keep him in our prayers and added him to our prayer chain.
Benjamin say's HI!
Carol
Carol0 -
me too!BenLenBo said:Benjamin had just turned 28!
Thanks for responding so soon Cindy. I find this site frustrating sometimes, reading through all the different stories. Each area of the country seems to tackle brain cancer with their own agenda. Benjamin's story is under his profile, along with a picture. He was the picture of health before and still looks the same, except for the mohawk under his baseball cap. Benjamin has gone back to work full-time, enjoying ice-fishing at Lake of the Woods, and hanging with is family and friends. This has really drawn our family closer, and we were a close family to begin with. His doctor's are amazing, and so positive all the time, one even comes into the room with a huge smile on his face. Staff has be outstanding, and treats everyone like they are special. His Chemo/Doc is Ped/Onc originally from Canada-wonderful, we couldn't have asked for better.
Like you, doctors do make the difference, glad our first Neuro/Surgeon was totally wrong, the replacement has been nothing but positive. I've learned like you to take it one day at a time, and ask questions until I get the right answers, because my son would not ask one question. My daughter who is having her first child this summer, grilled his doctor's for over 40 minutes on this first few meetings. They answered all questions until she was
satisfied. We go to all his appointments as a family, watching individuals going through this on their own is heartwrenching. A hug goes a long way!
When did your son start having seizures? Neuro did an EEG on Ben shortly after surgery, and are planning on doing another in about 2 months. He had surgery siezures- little
electric charges- being controlled by Keppra, but is to come off that drug, because he has had no siezures since surgery- precaution by Doctor's.
Also, did your son take a Motion Sickness Med 20 minutes before his Temodar, and after a meal and before bedtime? That has been our routine! Hope David is going better today, will keep him in our prayers and added him to our prayer chain.
Benjamin say's HI!
Carol
Carol
Hi, Carol.
I find this site frustrating too! Right now I am reading through a bunch of posts, trying to see how some people are doing...I haven't seen posts from them for a while. I wish there was a way to search for just their comments so I could see when they posted last, and what they said. That's one of the hard things about this site....people suddenly stop posting and you don't know why. I'm afraid of why some of them stop posting....
David started having seizures in July of 2011. He had two pretty bad ones in his sleep, and after the second one, we took him to the ER and they did an MRI and told us that they saw "disease progression." That's doctor-talk for "more tumor." We were absolutely devastated. It's been a rough road for us ever since.
David took Zofran with the Temodar. He didn't always take it because it made him pretty tired. Overall, David tolerated Temodar pretty well. He hated the "chemo brain" effect the most. It made it hard for him to work--he worked for Apple, selling and troubleshooting Apple products...iphones, iPads, laptops, all their products and apps. He loved it. He had to quit back in July though, once he had the recurrence. Chemo brain from the Temodar also made college hard for him too, but he stuck it out for two years, until the recurrence. The recurrence really changed his life a lot.
Please tell Benjamin hello for me too! And tell him that I hope he catches lots of fish when he goes ice fishing....I love to fish and I think ice fishing sounds so fun!
Thank you for your prayers for David....I will continue to pray for Benjamin also!
Love and blessings,
Cindy
PS can you ask Benjamin to check out this link below? It's a cool YouTube video of fishing under ice. I really liked it!
http://www.youtube.com/watch?v=VIs00QjiJZQ 0 -
me too!BenLenBo said:Benjamin had just turned 28!
Thanks for responding so soon Cindy. I find this site frustrating sometimes, reading through all the different stories. Each area of the country seems to tackle brain cancer with their own agenda. Benjamin's story is under his profile, along with a picture. He was the picture of health before and still looks the same, except for the mohawk under his baseball cap. Benjamin has gone back to work full-time, enjoying ice-fishing at Lake of the Woods, and hanging with is family and friends. This has really drawn our family closer, and we were a close family to begin with. His doctor's are amazing, and so positive all the time, one even comes into the room with a huge smile on his face. Staff has be outstanding, and treats everyone like they are special. His Chemo/Doc is Ped/Onc originally from Canada-wonderful, we couldn't have asked for better.
Like you, doctors do make the difference, glad our first Neuro/Surgeon was totally wrong, the replacement has been nothing but positive. I've learned like you to take it one day at a time, and ask questions until I get the right answers, because my son would not ask one question. My daughter who is having her first child this summer, grilled his doctor's for over 40 minutes on this first few meetings. They answered all questions until she was
satisfied. We go to all his appointments as a family, watching individuals going through this on their own is heartwrenching. A hug goes a long way!
When did your son start having seizures? Neuro did an EEG on Ben shortly after surgery, and are planning on doing another in about 2 months. He had surgery siezures- little
electric charges- being controlled by Keppra, but is to come off that drug, because he has had no siezures since surgery- precaution by Doctor's.
Also, did your son take a Motion Sickness Med 20 minutes before his Temodar, and after a meal and before bedtime? That has been our routine! Hope David is going better today, will keep him in our prayers and added him to our prayer chain.
Benjamin say's HI!
Carol
Carol
Hi, Carol.
I find this site frustrating too! Right now I am reading through a bunch of posts, trying to see how some people are doing...I haven't seen posts from them for a while. I wish there was a way to search for just their comments so I could see when they posted last, and what they said. That's one of the hard things about this site....people suddenly stop posting and you don't know why. I'm afraid of the reason why some of them stop posting....
David started having seizures in July of 2011. He had two pretty bad ones in his sleep, and after the second one, we took him to the ER and they did an MRI and told us that they saw "disease progression." That's doctor-talk for "more tumor." We were absolutely devastated. It's been a rough road for us ever since.
David took Zofran with the Temodar. He didn't always take it because it made him pretty tired. Overall, David tolerated Temodar pretty well. He hated the "chemo brain" effect the most. It made it hard for him to work--he worked for Apple, selling and troubleshooting Apple products...iphones, iPads, laptops, all their products and apps. He loved it. He had to quit back in July though, once he had the recurrence. Chemo brain from the Temodar also made college hard for him too, but he stuck it out for two years, until the recurrence. The recurrence really changed his life a lot.
Please tell Benjamin hello for me too! And tell him that I hope he catches lots of fish when he goes ice fishing....I love to fish and I think ice fishing sounds so fun!
Thank you for your prayers for David....I will continue to pray for Benjamin also!
Love and blessings,
Cindy
PS can you ask Benjamin to check out this link below? It's a cool YouTube video of fishing under ice. I really liked it!http://www.youtube.com/watch?v=VIs00QjiJZQ 0 -
Websterbr,websterbr said:memory and general cognitive impariment
Hi Anvar,
I had surgery in September for a grade II oligodendroglioma. I have not had any further treatment but I am having similar issues. I have a hard time remembering details and what my GP calls sequencing of events (what task comes next). I have trouble concentrating and comprehending information. I tried to make rice crispy squares and burned then. WHO BURNS RICE CRISPY SQUARES!?!? They are so easy to make. I also had trouble following simple directions to make pancakes for me niece. I just stood there and stared at the cupboard. When this happens I get really overwhelmed and give up. I don't have much confidence to do things that I have in the past few months screwed up. I could not follow conversations at a Christmas party and looked like a fool when everyone laughed at a joke and I didn't get it. My GP says it is not necessarily the tumor but the actual craniotomy because they cut through all of the nuerons and "brain connectoins". My GP told me to listen to Mozart to help with memory and do crossword and word searches at a grade 5 level. She told me to set small goals throughout the week such as putting the dishes away one day and putting away laundry then next. This will give a sence of achievement and not tire the brain to the point of having trouble functioning. I have good days when I think everything is great and then I do too much (like clean the whole house) and then get physically tired and cannot put the steps together to make dinner. I am awaiting a neuropsych assessment to target the exact issues I am having and the type of rehab I need to do to get it back. They say it all takes time but it is very frustrating! My independence is gone. I cannot drive and taking the bus is an issue. I am a Medical Secretary for three doctors at a hospital and I am not able to return to work. I used to work full time and go to some type of exercise class three times per week. Now I am trying to do a bit at home and have to function around other's schedules for help. They say it will come back with time but a neuropsych assessment might be helpful. Hope this helps.
I had a grade III anaplastic oligodendroglioma removed from my right parietal lobe 15 years ago, followed by radiation. I still remember being overwhelmed by some tasks in the months after surgery and radiation, and experiencing sensory overload when there was too much conversation, noise, motion or light around me. My brain would seem to shut down, I would become exhausted and wanted to get somewhere quiet. With time this improved greatly. I also couldn't do puzzles easily, and could only do them based on shape, not color. Over time the neurons reconnected as I did more mental gymnastics and physical exercise. Given the location doing some exercise that shifted weight from the right to left foot (like tennis or golf) helped very much. My doctor stressed staying physically and mentally active, but paying attention to my body and taking time to rest as needed.
Stay positive, the brain has an amazing ability to heal and reteach itself. It just needs the right stimulus!
Regards,
Chris0 -
Hi, I'm new to the sitecindysuetoyou said:me too!
Hi, Carol.
I find this site frustrating too! Right now I am reading through a bunch of posts, trying to see how some people are doing...I haven't seen posts from them for a while. I wish there was a way to search for just their comments so I could see when they posted last, and what they said. That's one of the hard things about this site....people suddenly stop posting and you don't know why. I'm afraid of the reason why some of them stop posting....
David started having seizures in July of 2011. He had two pretty bad ones in his sleep, and after the second one, we took him to the ER and they did an MRI and told us that they saw "disease progression." That's doctor-talk for "more tumor." We were absolutely devastated. It's been a rough road for us ever since.
David took Zofran with the Temodar. He didn't always take it because it made him pretty tired. Overall, David tolerated Temodar pretty well. He hated the "chemo brain" effect the most. It made it hard for him to work--he worked for Apple, selling and troubleshooting Apple products...iphones, iPads, laptops, all their products and apps. He loved it. He had to quit back in July though, once he had the recurrence. Chemo brain from the Temodar also made college hard for him too, but he stuck it out for two years, until the recurrence. The recurrence really changed his life a lot.
Please tell Benjamin hello for me too! And tell him that I hope he catches lots of fish when he goes ice fishing....I love to fish and I think ice fishing sounds so fun!
Thank you for your prayers for David....I will continue to pray for Benjamin also!
Love and blessings,
Cindy
PS can you ask Benjamin to check out this link below? It's a cool YouTube video of fishing under ice. I really liked it!http://www.youtube.com/watch?v=VIs00QjiJZQ
I have spent all morning reading everyone's posts. My prayers will now be with you also. My spouse was diagnosed a couple of years ago with a Grade 3 Oligo with 1p and 19p deletions and that is where most of the similarities stop.
My spoouse (50) was unable to have SX due to the size of the tumor--lemon size on the right temporal lobe. Chemo started and completed first--@18months of Temodar, a couple of months break and then 30 sessions of radiation (not whole brain). MRIs are now every 3 months since completion of radiation.
Is there anyone else who is going through this and NEVER had SX? My spouse continues to work, drive and is somewhat living a normal life.0 -
Does SX meanrandolphlee said:Hi, I'm new to the site
I have spent all morning reading everyone's posts. My prayers will now be with you also. My spouse was diagnosed a couple of years ago with a Grade 3 Oligo with 1p and 19p deletions and that is where most of the similarities stop.
My spoouse (50) was unable to have SX due to the size of the tumor--lemon size on the right temporal lobe. Chemo started and completed first--@18months of Temodar, a couple of months break and then 30 sessions of radiation (not whole brain). MRIs are now every 3 months since completion of radiation.
Is there anyone else who is going through this and NEVER had SX? My spouse continues to work, drive and is somewhat living a normal life.
Does SX mean removal/resection? My husband was diagnosed in May 2008 and couldn't have surgery due to the location of his tumor. 4x2x3cm on his corpus callusom. Too deep for removal. He did 6 weeks of radiation and chemo and nothing since. He was however on high doses of steriods (Dexadron) and that caused Cushing Syndrome which almost killed him. Congestive heart failure, blood clots, etc. However, since they got him off them, he has been steadily getting back to his old life. Driving, working, golfing, mechanicing etc. I was worried about his last MRI on Mar 19, 2012 but it came back perfect!!!!! I was so relieved! So now we are just going to keep doing what we do, looking forward to our daughters graduation in May, and a possible move to Vancouver Island.
PS-- My husband was 42 years old when he was diagnosed, the only symptoms he had was mild confusion, paranoia, and dizzyness. Never had seizures (THANK GOODNESS! They sound scary!)He also has Grade 3 Aniplastic Oligo and we don't know if there is the deletion.0 -
BTWJDRinAz said:Lifespan
There is a guy out there that is 12 yrs out and still going
I have been dealing with the different stages for 20 yrs. Don't get involved with Dr's predictions please! Good Dr's won't predict. They are wrong all the time. Find great success stories, and live based on those. I was told 5 yrs originally, so I spent 5 yrs getting ready to die. Patients are heros---just go be one of them.0 -
your son
first of all happy mothers day.
I live with a man who at 36 was dx with a grade 3 oligo
same tx with radiation and surgery and temodar, as your son.
This June will be 5 years.
I am silently ecstatic, shocked daily and am truly amazed.
I never should have listened to a word the doctors said....
i wish i can go and forget their theories, none proved true.....0 -
Dear Cindyamyshait said:your son
first of all happy mothers day.
I live with a man who at 36 was dx with a grade 3 oligo
same tx with radiation and surgery and temodar, as your son.
This June will be 5 years.
I am silently ecstatic, shocked daily and am truly amazed.
I never should have listened to a word the doctors said....
i wish i can go and forget their theories, none proved true.....
It very nice that you have posted regarding your son's condition here. I hope that he will be in his best of health as long as god's willing so that he can enjoy life as long as he could. Allow me to introduce myself. I am not a cancer survival but I am a neurosurgical trainee - in my final year. Dealing with cancer patient is one of the things i have to do everyday. Indeed anaplastic oligo is a rare form of brain tumour which I currently have one patient i just operated days ago. She was a bubbly charming 7 year old girl who presented to me for bleed in her brain. Fortunately, after her operation, she came out well without any neurological deficit. My worst fear came today as her histopathological report came back - anaplastic oligo. Her tumour was large and situated in the important areas that controls her limb movements (internal capsule) and what made it worst is that there is not much good plane between the tumour and the normal brain, so only a subtotal resection was achieved, in a bid to preserve her intact neurology - say 70-80% resection. I would prefer my patients to be happy with good quality of life, rather than complete excision but at the expense of compromised neurology.I now know that she need radiotherapy and chemotherapy as the next step of treatment.
Obviously, and naturally will come the next question from the family regarding the prognosis or life span... how long is her life? As some of you pointed out, whatever answer we give is based on the evidence gathered from numerous studies and articles and yes, statistic. Progression free survival, overall survival, median survival are just numbers calculated from the data collected from the studies and it actually give us an idea regarding whatever data we are looking at, so we will have a overall picture of what to expect from the natural history of the disease progression. But this doesn't mean that the numbers are the whole truth. In medicine, there is always exception. Yes, there are few numbers occasionally, patient live beyond the number of years stated in the statistic and its actually good news. For me, there is always hope. If you don't try anything, all hope is loss, its better to try and fail rather than to fail to even try.
Medical field is advancing day by day with more and more research result coming out, findings of a new therapy for certain illness, and naturally the treatment option for certain illness will increase the outcome of our patients. I don't think doctors are here to dictate how long you can live if u have certain disease but i belief, we are here to inform you what the medical field has found today, to inform you the current information regarding the disease and its treatment option with the expected result. The results will never be the same in some illness as things improves over time especially when the tumour research has gone into molecular genetics. But have in mind, that research takes years to bear result. Its because of patient, that a research could be carried out for the benefit of future patients. The hero is actually the patients.
I take great pleasure reading from this forum so that hopefully i can view a illness from the patient's perspective and see to the needs of patient and their family.
I felt obligated to voice out my opinion when i saw some reader commended on not to believe what a doctor says. He/she may be frustrated at the advice of the doctor regarding some information citing that the knowledge is outdated due to old statistics but i am sure the doctor did his/her best to inform their respective patients based on the best available data. From this, it struck me that I have to constantly be reminded that there is always new things in medicine for which i need to be constantly on my toes regarding any new valid information regarding any illnesses or i will be quoting the outdated information to my patients.
Anyway there is always hope and thanks all for sharing valuable information regarding the disease from the patient's point of view. Hopefully with these extras, i would be able to holistically render the best available treatment for my patient.
From a doctor's point of view, every patient is an individual and no individual is the same. Its really difficult to see my patient loosing the battle especially in tumour cases, even so when you know nothing much u can offer after battling the illness with whatever known medical ways has to offer. On the other hand, the smile and joy of a patient or their family is the best reward a doctor can have. That's what keep me going and THERE IS HOPE.
Hope for the best for you and family and all the rest out there. Cheers!!0
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