Oligodendroglioma

Sybille
Sybille Member Posts: 2
edited March 2014 in Brain Cancer #1
Hallo

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

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

Sybille
«13456

Comments

  • chiligrl
    chiligrl Member Posts: 20
    Hi! I, too, had an oligo (Grade II) resected in October...90-95%..then 6 weeks of radiation and Temodar. I am doing well...good days and bad days..I finished treatment in Feb.and am at home now, working and doing well. I know that some sources show a bad prognosis relating to survival time...but my doctor assures me that it might be 20 years before my oligo returns if it ever does. Be hopeful, be happy and live every day as if it IS your last!! You know and I know that no one can tell us what is going to happen in the future. You and hubby just live it up..and remember, any of us could go any minute...Good Luck to you and Hubby!
  • Sybille
    Sybille Member Posts: 2
    chiligrl said:

    Hi! I, too, had an oligo (Grade II) resected in October...90-95%..then 6 weeks of radiation and Temodar. I am doing well...good days and bad days..I finished treatment in Feb.and am at home now, working and doing well. I know that some sources show a bad prognosis relating to survival time...but my doctor assures me that it might be 20 years before my oligo returns if it ever does. Be hopeful, be happy and live every day as if it IS your last!! You know and I know that no one can tell us what is going to happen in the future. You and hubby just live it up..and remember, any of us could go any minute...Good Luck to you and Hubby!

    Hallo Chiligrl

    Thank you for your kind answer. I am lucky to hear that you are well, too. May I ask you how old you are? I try to think positive but sometime all power leaves me... So I hope for you and all others all the best. It would be nice to keep in touch (perhaps by e-mail?) Kind regards Sybille
  • chiligrl
    chiligrl Member Posts: 20
    Sybille said:

    Hallo Chiligrl

    Thank you for your kind answer. I am lucky to hear that you are well, too. May I ask you how old you are? I try to think positive but sometime all power leaves me... So I hope for you and all others all the best. It would be nice to keep in touch (perhaps by e-mail?) Kind regards Sybille

    Hey, Sybille! Sure,we can stay in touch. You can e-mail me at [email protected]
  • Dinee
    Dinee Member Posts: 2
    chiligrl said:

    Hey, Sybille! Sure,we can stay in touch. You can e-mail me at [email protected]

    Hi Sybille, My husband also has an oligodendroglioma. We are almost five years out now and have survived two surgeries, two bouts of radiation and Chemo. I finally understand what managing a brain tumor means. He is doing really great considering all of the procedures. Get back to me if you feel like chatting. Dianne
  • livingdtd
    livingdtd Member Posts: 1
    Sybille said:

    Hallo Chiligrl

    Thank you for your kind answer. I am lucky to hear that you are well, too. May I ask you how old you are? I try to think positive but sometime all power leaves me... So I hope for you and all others all the best. It would be nice to keep in touch (perhaps by e-mail?) Kind regards Sybille

    livingdtd
    Hi Just a note of hope I am a 6 1/2 year survivor. 25 sessions of radiation. (Grade 2)
  • speciallady30188
    speciallady30188 Member Posts: 2
    livingdtd said:

    livingdtd
    Hi Just a note of hope I am a 6 1/2 year survivor. 25 sessions of radiation. (Grade 2)

    Oligodendroglioma Grade II
    Hi, It has been a month since my Brain Tumor was removed and I just finished my 4th Radiation Treatment and there will be 5 weeks of treatments total. I would like to know if I should expect to have Chemo Therapy also...no one has mentioned Chemo Therapy yet.
  • speciallady30188
    speciallady30188 Member Posts: 2
    Oligodendroglioma Grade II
    Looking for more information on this Cancer diagnosis. Could anyone help me find out more about this particular cancer?
    I'm in my 3rd week of Radiation Therapy and want to know more about Oligodendroglioma tumors.
    Need anyone that can help me.
  • MistyM
    MistyM Member Posts: 1

    Oligodendroglioma Grade II
    Hi, It has been a month since my Brain Tumor was removed and I just finished my 4th Radiation Treatment and there will be 5 weeks of treatments total. I would like to know if I should expect to have Chemo Therapy also...no one has mentioned Chemo Therapy yet.

    oligodendroglioma grade 11
    Hi, my very good friend was just diagnosed with this same type of tumor. I have since spent over 40 hours researching case studies, various treatment types, effects of treatments, etc. From what I have read and what her neuro oncologist explained, generally speaking if your tumor is operable, which you said yours was, then radiation is a standard follow-up to surgery. This type of tumor returns in most all cases. When the tumor returns, this is when you would expect to have chemo or chemo/radiation combination treatment. Please remember you are your own advocate. Doctors are treating you based on their educated guess as to how your tumor will respond. Make certain your Doctor has ordered the test that determines your chromosome markers. Believe it or not, they don't always order this test due to cost. Usually in this type of tumor there is a 1p and 19q deletion. This is critical in determining your treatment type. Doctors are concerned with "attacking or killing" the tumor. In radiation and chemo, the "killing" of the tumor also destroys many good things, i.e., bone marrow, etc. You need to be responsible for replacing the good things through diet rich in antioxidants and supplements found in nutrition stores. (the real ones not the chains) If you find an alternative treatment you want to use in addition to your prescribed treatment, you can take the supplement to your Doctor for approval. Above all else, turn to God. He has the answer to all your questions! Hope this helps.. and hope you are doing well!
  • This comment has been removed by the Moderator
  • sotosol
    sotosol Member Posts: 3

    Oligodendroglioma Grade II
    Looking for more information on this Cancer diagnosis. Could anyone help me find out more about this particular cancer?
    I'm in my 3rd week of Radiation Therapy and want to know more about Oligodendroglioma tumors.
    Need anyone that can help me.

    Hi
    Merry Christmass
    Oligo is a slow growth tumor that you have nothing to woring about it.This tumor respon very good at hemo and radiation very fast.I have oligo 11 and i had only radiosurgery Gamma knife 2 years ago.Iam good and iam taking only Keppra and toppamax.Ihave many friends that i met on line that they have tha same problem over 15 and 20 years in USA . Acually iam from Cyprus a small island near Greece so sorry for my mistakes.
    take care
    Maria
  • betsyB610
    betsyB610 Member Posts: 6

    Oligodendroglioma Grade II
    Looking for more information on this Cancer diagnosis. Could anyone help me find out more about this particular cancer?
    I'm in my 3rd week of Radiation Therapy and want to know more about Oligodendroglioma tumors.
    Need anyone that can help me.

    me too
    I was diagnosed 8 years ago. The "Alien", as we call it, is large, spreads from temporal lobe to occipital area and a tad beyond. I had 30 radiation treatments, then 6 rounds of chemo - PCV.

    The treatment has helped - it was, as of the MRI last week, stable. The long term impact leaves me disabled but I'm relearning skills I forgot, cooking, writing and much more. I am very grateful that this is slow growing and that the treatment seems to have helped.

    I'll be here if there is anything I can do.
  • dannywf
    dannywf Member Posts: 2
    betsyB610 said:

    me too
    I was diagnosed 8 years ago. The "Alien", as we call it, is large, spreads from temporal lobe to occipital area and a tad beyond. I had 30 radiation treatments, then 6 rounds of chemo - PCV.

    The treatment has helped - it was, as of the MRI last week, stable. The long term impact leaves me disabled but I'm relearning skills I forgot, cooking, writing and much more. I am very grateful that this is slow growing and that the treatment seems to have helped.

    I'll be here if there is anything I can do.

    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
    dannywf Member Posts: 2

    Oligodendroglioma Grade II
    Looking for more information on this Cancer diagnosis. Could anyone help me find out more about this particular cancer?
    I'm in my 3rd week of Radiation Therapy and want to know more about Oligodendroglioma tumors.
    Need anyone that can help me.

    I also have oligodendroglioma
    just wanted to know if you ever learned anything from anyone?
  • dmsmyself
    dmsmyself Member Posts: 1
    dannywf 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.

    same
    I was diagnosed the same and had surgery two day later after a seizure 2-16-2010.Just getting a clear head a doing research. Would like to have any info you would like to share.
  • a.s.
    a.s. Member Posts: 3
    betsyB610 said:

    me too
    I was diagnosed 8 years ago. The "Alien", as we call it, is large, spreads from temporal lobe to occipital area and a tad beyond. I had 30 radiation treatments, then 6 rounds of chemo - PCV.

    The treatment has helped - it was, as of the MRI last week, stable. The long term impact leaves me disabled but I'm relearning skills I forgot, cooking, writing and much more. I am very grateful that this is slow growing and that the treatment seems to have helped.

    I'll be here if there is anything I can do.

    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?
  • single3rd
    single3rd Member Posts: 18
    Low/medium grade oligo tumors: real-life, experiences
    I do not intend to cite vast chunks of Internet research, merely personal experiences, BUT

    My first oligo (grade II/III) was diagnosed in Nov. 1998, followed by 30 daily radiation treatments. In Aug. 2007, I was diagnosed with a recurrence (same grade), followed by immediate recision (approx 95%), and 5/23 Temodar chemotherapy (360mg). Last month
    (April 2010) I was diagnosed with a second recurrence (same grade). I have just started PCV chemotherapy, as recision of the new tumor has been ruled out.

    Prior to the 2007 recision, my neurosurgeon did advise me that there was a strong likelihood of one or more recurrences of the tumor, despite followup treatments. Obviously, he was correct!
  • lauraatvalley
    lauraatvalley Member Posts: 2
    single3rd said:

    Low/medium grade oligo tumors: real-life, experiences
    I do not intend to cite vast chunks of Internet research, merely personal experiences, BUT

    My first oligo (grade II/III) was diagnosed in Nov. 1998, followed by 30 daily radiation treatments. In Aug. 2007, I was diagnosed with a recurrence (same grade), followed by immediate recision (approx 95%), and 5/23 Temodar chemotherapy (360mg). Last month
    (April 2010) I was diagnosed with a second recurrence (same grade). I have just started PCV chemotherapy, as recision of the new tumor has been ruled out.

    Prior to the 2007 recision, my neurosurgeon did advise me that there was a strong likelihood of one or more recurrences of the tumor, despite followup treatments. Obviously, he was correct!

    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:)
  • lauraatvalley
    lauraatvalley Member Posts: 2
    single3rd said:

    Low/medium grade oligo tumors: real-life, experiences
    I do not intend to cite vast chunks of Internet research, merely personal experiences, BUT

    My first oligo (grade II/III) was diagnosed in Nov. 1998, followed by 30 daily radiation treatments. In Aug. 2007, I was diagnosed with a recurrence (same grade), followed by immediate recision (approx 95%), and 5/23 Temodar chemotherapy (360mg). Last month
    (April 2010) I was diagnosed with a second recurrence (same grade). I have just started PCV chemotherapy, as recision of the new tumor has been ruled out.

    Prior to the 2007 recision, my neurosurgeon did advise me that there was a strong likelihood of one or more recurrences of the tumor, despite followup treatments. Obviously, he was correct!

    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.
  • Misty01
    Misty01 Member Posts: 1

    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.

    Stay Positive
    This is my first post, and to be honest I'm not sure what to say. You got through it once before and after you sit down and take a few deep breaths, you will find the inner strength to face this challenge head on again.
    I was diagnosed in April '10 with a grade II oligo after suffering an unexpected seizure. My MRI showed a 5x5 cm tumour in my Parietal lobe. I had a partial resection in early May. Unfortunately 4 weeks ago I suffered 28 grand mal seizures in 24 hrs. After a further MRI, it shows there is still 50% of the original tumour in my brain. I am scheduled to see my surgical team next week to discuss further surgical options such as a repeat proceedure, or whether to be awake this time as the remaining tumour is so close to my sensory and motor control centre. I was hoping someone may have had their surgery while awake and could let me know what I would be in for...good or bad. Only way to know is to ask someone who has experienced it.
    I do have the 1p-19q deletion, and the idea of chemo/radium has been discussed, but I am getting conflicting advice from the oncolgist/radium therapist about whether or not to have the treatment. I am so confused and feel overwhelmed, I felt I needed to seek help and advice from those who understand exactly where I am coming from. Any replies would be most welcome.
    My thoughts and prayers are with all who are battling their own "Terry the tumour"
  • Kanoki
    Kanoki Member Posts: 1
    Misty01 said:

    Stay Positive
    This is my first post, and to be honest I'm not sure what to say. You got through it once before and after you sit down and take a few deep breaths, you will find the inner strength to face this challenge head on again.
    I was diagnosed in April '10 with a grade II oligo after suffering an unexpected seizure. My MRI showed a 5x5 cm tumour in my Parietal lobe. I had a partial resection in early May. Unfortunately 4 weeks ago I suffered 28 grand mal seizures in 24 hrs. After a further MRI, it shows there is still 50% of the original tumour in my brain. I am scheduled to see my surgical team next week to discuss further surgical options such as a repeat proceedure, or whether to be awake this time as the remaining tumour is so close to my sensory and motor control centre. I was hoping someone may have had their surgery while awake and could let me know what I would be in for...good or bad. Only way to know is to ask someone who has experienced it.
    I do have the 1p-19q deletion, and the idea of chemo/radium has been discussed, but I am getting conflicting advice from the oncolgist/radium therapist about whether or not to have the treatment. I am so confused and feel overwhelmed, I felt I needed to seek help and advice from those who understand exactly where I am coming from. Any replies would be most welcome.
    My thoughts and prayers are with all who are battling their own "Terry the tumour"

    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.