Diffuse Astrocytoma Grade II/Gliomatosis Cerebri -- anybody out there?

steve68
steve68 Member Posts: 9
edited March 2014 in Brain Cancer #1
Hi,

I was diagnosed with diffuse astrocytoma grade II (gliomatosis cerebri) in September 2009. Inoperable. We have found it difficult and confusing to understand the treatment options and prognosis. We eventually chose radiation therapy (whole brain radiation) and temodar. Radiation is now complete and temodar continues. Going for my first RMI scan post-radiation in a few weeks which will set a baseline to measure progression in the future. Anyone else out there have the same diagnosis? It would be helpful to me and my family to hear your experiences.

Steve
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Comments

  • fergieyo
    fergieyo Member Posts: 1
    Diffused Astrocytoma II
    Hi, They found my tumor by accident 3 years ago. I was having what I thought were migraines. A brain biopsy was done in Jan of 2007. Mine is in R frontal lobe, pushing on the L frontal lobe, non-operative. It is only about the size of a green grape with a tail on the end. I was treated with IMRT radiation for 6 weeks. I do not remember the Gy number used. I did lose all my hair, was tired for about a year. I have an MRI once every 6 month now. It never shrank but has not grown either. The doctor told me I might always have some swelling around the tumor, but I feel blessed and some days I actually don't think about it. I am lucky that my Faith, Doctors and Family have really helped me through this. They won't say I am "cured" because they don't know. I do my best to live my life as best as I can. I have searched the internet and WebMD has a good article on Brain Tumors. God Bless, Good Luck. Hope this helped a little. I was 45 when they found it I will be 48 in May of 2010.
  • steve68
    steve68 Member Posts: 9
    fergieyo said:

    Diffused Astrocytoma II
    Hi, They found my tumor by accident 3 years ago. I was having what I thought were migraines. A brain biopsy was done in Jan of 2007. Mine is in R frontal lobe, pushing on the L frontal lobe, non-operative. It is only about the size of a green grape with a tail on the end. I was treated with IMRT radiation for 6 weeks. I do not remember the Gy number used. I did lose all my hair, was tired for about a year. I have an MRI once every 6 month now. It never shrank but has not grown either. The doctor told me I might always have some swelling around the tumor, but I feel blessed and some days I actually don't think about it. I am lucky that my Faith, Doctors and Family have really helped me through this. They won't say I am "cured" because they don't know. I do my best to live my life as best as I can. I have searched the internet and WebMD has a good article on Brain Tumors. God Bless, Good Luck. Hope this helped a little. I was 45 when they found it I will be 48 in May of 2010.

    thanks
    Hi fergieyo,

    Thanks for writing. I am about the same age, turning 46 this spring, diagnosed about 4 months ago, surgery not an option.I had whole brain radiation because the astrocytoma is very widely dispersed (right occipital, right parietal, right frontal, right temporal, corpus collosum, left parietal). I also found the radiation tiring, although I feel considerably more awake during the day now than I did three weeks ago when radiation finished. I am hopeful this trend continues and doesn't take a year.I dDon't know my Gy number but will find out. I will be starting a 25/5 regimen of Temodar at the end of January.

    I have found it very difficult to get a clear idea of prognsis from either doctors or internet. It seems to just be not well understood.
    It sounds like your astrocytoma is in a stable state which is great. Best of luck to you.

    Steve
  • Sofia13
    Sofia13 Member Posts: 3
    steve68 said:

    thanks
    Hi fergieyo,

    Thanks for writing. I am about the same age, turning 46 this spring, diagnosed about 4 months ago, surgery not an option.I had whole brain radiation because the astrocytoma is very widely dispersed (right occipital, right parietal, right frontal, right temporal, corpus collosum, left parietal). I also found the radiation tiring, although I feel considerably more awake during the day now than I did three weeks ago when radiation finished. I am hopeful this trend continues and doesn't take a year.I dDon't know my Gy number but will find out. I will be starting a 25/5 regimen of Temodar at the end of January.

    I have found it very difficult to get a clear idea of prognsis from either doctors or internet. It seems to just be not well understood.
    It sounds like your astrocytoma is in a stable state which is great. Best of luck to you.

    Steve

    gliomatosis cerebri
    I have a very dear friend who just had a brain biopsy to see if he has gliomatosis cerebri. He will get the results from the biopsy later this week. Based on his MRI scans and symptoms, several neurologists and his neurooncologist suspect that this is what he has. Please tell me how this progressed for you and how it was diagnosed? How are you doing now, several months later than when you last posted a message?

    -Sofia
  • Sofia13
    Sofia13 Member Posts: 3
    gliomatosis cerebri
    Please, if anyone has information about this disease I would appreciate your sharing it with me (i.e. a neurooncologist referral, research study info, new drugs to prolong life, or even a hopeful story).

    Thank you.

    Sincerely,
    Sofia
  • dianne_51
    dianne_51 Member Posts: 1
    My son
    Hi Steve, First of all let me tell you that I think you are doing well. My son was diagnosed July 2009 with Grade 2 Diffused Astrocytoma. My heart breaks for anyone that hears anything like that. My son underwent whole brain radiation as well and was doing Temodar. In April the doctors decided the temodar wasn't working any longer and now he is doing Avastin infusions. An additional MRI is showing shrinking already and our hopes are great that it is helping. Jason has been on Decadron (steriod) for almost 1 year now because of brain inflammation and he is having much swelling and bloating. We hope to start decreasing that in August if MRI shows more shrinkage. I don't know if he would be up to communicating on this site, but I will mention it to him. I think it would be helpful. You are in my thoughts. Dianne
  • Stephanie1206
    Stephanie1206 Member Posts: 1
    Grade II Astrocytoma
    I was diagnosed with a grade II astrocytoma in the frontal lobe in 2006. I had a craniotomy in 2006 and so far this has been the only treatment I have recieved. I came out of surgery with very little issues which luckily were only temporary! I have had a new mass for a little while now and it seems each time I go back (which is every 3 months) all they seem to tell me is that there has been a small change but that we should just continue to watch it. However, at different times they have wanted to do radiation or surgery on me but in the end the team decides not to do it. I am looking for all the help I can get. Looking into getting a second opinion from another doctor. I am only 26 years old and I am wanting to continue to have a long and healthy life. I will keep you all in my thoughts and prayers!
  • tusya7823
    tusya7823 Member Posts: 2
    steve68 said:

    thanks
    Hi fergieyo,

    Thanks for writing. I am about the same age, turning 46 this spring, diagnosed about 4 months ago, surgery not an option.I had whole brain radiation because the astrocytoma is very widely dispersed (right occipital, right parietal, right frontal, right temporal, corpus collosum, left parietal). I also found the radiation tiring, although I feel considerably more awake during the day now than I did three weeks ago when radiation finished. I am hopeful this trend continues and doesn't take a year.I dDon't know my Gy number but will find out. I will be starting a 25/5 regimen of Temodar at the end of January.

    I have found it very difficult to get a clear idea of prognsis from either doctors or internet. It seems to just be not well understood.
    It sounds like your astrocytoma is in a stable state which is great. Best of luck to you.

    Steve

    Hi Steve! How are things
    Hi Steve! How are things with you?
  • rdrichard
    rdrichard Member Posts: 3
    Wife has Gliomatosis cerebri -- just joined group
    Hello,

    Glad to find you all and sorry we had to meet this way. My wife had a seizure 26 months ago and we found out she had the brain tumors. A few months later they operated and took out a large clump of the tumor, but much of it was and continues to spread like plant roots throughout her left side with some attempting to push over to the right side. I know I will be here frequently now that I found it, but some of you seem like it has stopped growing or got better – is that true or am I just reading into it wrong?

    Regards,

    Richard
  • rdrichard
    rdrichard Member Posts: 3

    Grade II Astrocytoma
    I was diagnosed with a grade II astrocytoma in the frontal lobe in 2006. I had a craniotomy in 2006 and so far this has been the only treatment I have recieved. I came out of surgery with very little issues which luckily were only temporary! I have had a new mass for a little while now and it seems each time I go back (which is every 3 months) all they seem to tell me is that there has been a small change but that we should just continue to watch it. However, at different times they have wanted to do radiation or surgery on me but in the end the team decides not to do it. I am looking for all the help I can get. Looking into getting a second opinion from another doctor. I am only 26 years old and I am wanting to continue to have a long and healthy life. I will keep you all in my thoughts and prayers!

    Stephanie -- you seem to be on the same track as my wife
    Your comments, I had a craniotomy in 2006 and so far this has been the only treatment I have recieved. I came out of surgery with very little issues which luckily were only temporary! I have had a new mass for a little while now and it seems each time I go back (which is every 3 months) all they seem to tell me is that there has been a small change but that we should just continue to watch it. However, at different times they have wanted to do radiation or surgery on me but in the end the team decides not to do -- mirror what is going on with us -- I friended you on the site and hope to figure out how to email you.
  • alohajimmy
    alohajimmy Member Posts: 7
    rdrichard said:

    Wife has Gliomatosis cerebri -- just joined group
    Hello,

    Glad to find you all and sorry we had to meet this way. My wife had a seizure 26 months ago and we found out she had the brain tumors. A few months later they operated and took out a large clump of the tumor, but much of it was and continues to spread like plant roots throughout her left side with some attempting to push over to the right side. I know I will be here frequently now that I found it, but some of you seem like it has stopped growing or got better – is that true or am I just reading into it wrong?

    Regards,

    Richard

    gliomatosis cerebri
    I just found this site. My 18 year old daughter was diagnosed with this rare disease in May, 2009 (17 years old). Grade II. Very diffuse. Surgeon at very well known national medical center believes it is too diffuse for surgery and radiology would possibly kill too much of the brain. She was on a high dose of Temozolomide and then off for a long period 5/25?. MRI showed no improvement. They changed the dosage to 45 days on at a lower dosage and 15 days off. No worsening or improvement for about 4-6 months but recently the MRI showed new growth. Doctor estimate life expectancy of 1-2 years. Oncologist is suggesting a phase I trial using another drug in combination with temozolomide. We are being told that because our daughter is 18 years old and she is considered to have a grade II tumor, she is not allowed to participate in adult trials. We will probably seek out another medical center to review our daughter's case and give us a second opinion on which is the best trial for our daughter. Any suggestions? US News rates MD Anderson and Sloan-Kettering 1 & 2. But we want to find the center that is best for this particular disease.
  • fran4040
    fran4040 Member Posts: 1

    gliomatosis cerebri
    I just found this site. My 18 year old daughter was diagnosed with this rare disease in May, 2009 (17 years old). Grade II. Very diffuse. Surgeon at very well known national medical center believes it is too diffuse for surgery and radiology would possibly kill too much of the brain. She was on a high dose of Temozolomide and then off for a long period 5/25?. MRI showed no improvement. They changed the dosage to 45 days on at a lower dosage and 15 days off. No worsening or improvement for about 4-6 months but recently the MRI showed new growth. Doctor estimate life expectancy of 1-2 years. Oncologist is suggesting a phase I trial using another drug in combination with temozolomide. We are being told that because our daughter is 18 years old and she is considered to have a grade II tumor, she is not allowed to participate in adult trials. We will probably seek out another medical center to review our daughter's case and give us a second opinion on which is the best trial for our daughter. Any suggestions? US News rates MD Anderson and Sloan-Kettering 1 & 2. But we want to find the center that is best for this particular disease.

    diffused astrocytoma in the brain
    Hi aloha,
    Sorry to hear about your daughter,,,,, My 22 yr old son also was diagnosed with a rare tumor in the brain Oct of this year,,,It's inoperable and diffused. He was attending Yale University and had to medically withdraw for his last year... I've taken him to Sloan Kettering in New York, and there are great doctors there, He had started chemo and whole brain radiation this week seems to do fine so far. There is a sloan kettering also in New Jersey which is a bit closer for us then New York but the same doctors from New York facilate there as well. He also has a grade 2 tumor with some stage 3 cells,,,They really don't know what the out come will be but hoping for the best. He has to do Raditaion for 33 days and chemo for at least 1-2 years. At this point we can only hope and pray, but the doctors there are very optomistic. Very clean and proffessional place to bring my son as a in and out patient. They do also clincal trials there so i think you should look into that one in New York first. There is a doctor Poznor who is been there for years and everyone thinks very highly of him, the smartest man on the face of the earth,,,he will tell u like it is and if there is anything that they would do different, my son is currently under his care and made reconmendations to the other two docters for the chemo and radation. My prayers are with you if you need any other info that i may be able to help please let me know.
  • alohajimmy
    alohajimmy Member Posts: 7
    whole brain radiation
    Hi Steve! In a further discussion with our oncologist, she said that should my daughter have a full brain radiology treatment, her life expectancy would be 5-10 years. But, as her tumor is slow growing, she is suggesting we postpone this treatment for quality of life reasons until we have no other options or the tumor turns cancerous. We are currently reviewing several trials. - How has your whole brain radiology treatment impacted your life?
  • edslas
    edslas Member Posts: 18
    Similiar diagnosis
    Steve,
    I was just diagnosed (November 2010) with diffuse astrocytoma Grade II, in the right occipital parietal lobe. I found out last week that it was inoperable.
    The doctors are still waiting on biopsy results to determine the best treatment. I have not been able to get a prognosis out of my doctors. When I ask, I get 'everyone's journey is different', and I will will be dealing with this for the rest of my life. I am glad too see someone who was diagnosed a year ago and is still kicking.

    You can read the my whole story in my blog:
    http://edslas.blogspot.com
  • tommybear
    tommybear Member Posts: 111 Member
    edslas said:

    Similiar diagnosis
    Steve,
    I was just diagnosed (November 2010) with diffuse astrocytoma Grade II, in the right occipital parietal lobe. I found out last week that it was inoperable.
    The doctors are still waiting on biopsy results to determine the best treatment. I have not been able to get a prognosis out of my doctors. When I ask, I get 'everyone's journey is different', and I will will be dealing with this for the rest of my life. I am glad too see someone who was diagnosed a year ago and is still kicking.

    You can read the my whole story in my blog:
    http://edslas.blogspot.com

    Hi there....
    Just wanted to say hello....I was diagnosed last year with a grade II Astrocytoma in my left temporal lobe. Had about 25% removed in August, then stereotactic radiosurgery in December. My tumor has extensions, kind of like tentacles, so they couldn't remove it all. It's still there - and yes, I agree with your doctors - "Everyone's journey is different" and yes, I believe that I will have this the rest of my life.

    I'm still kicking, too! Have had some issues, but doing alright. Sometimes I think I would be better off if I tried to stop thinking and owning the brain tumor all along. But, it is kind of hard to act like it is not there.

    Anyway, take care. I'll go check out your blog!

    Michele S.
  • edslas
    edslas Member Posts: 18
    edslas said:

    Similiar diagnosis
    Steve,
    I was just diagnosed (November 2010) with diffuse astrocytoma Grade II, in the right occipital parietal lobe. I found out last week that it was inoperable.
    The doctors are still waiting on biopsy results to determine the best treatment. I have not been able to get a prognosis out of my doctors. When I ask, I get 'everyone's journey is different', and I will will be dealing with this for the rest of my life. I am glad too see someone who was diagnosed a year ago and is still kicking.

    You can read the my whole story in my blog:
    http://edslas.blogspot.com

    Statistics - Mortality rate?
    One other thing I forgot to mention about the doctors unwillingness to offer up a prognosis. In a conversation with the PA, she mentioned that any statistics that are gathered quickly become obsolete because of the advances in treatment. One would think that some organization would track diagnosis to end of life and be able to provide an average that would filter out differences in age, general health, etc. But this PA pointed out that everyone is treated differently, and advances in the field are constantly offering up new treatment options.

    I was talking to a friend about this last night, and he pointed out some philosophical issues with even asking this question. He asked, why would you even want to know this? If you feel that you would live your life differently knowing you only have a couple years to live, you should start these changes even if you had 100 years to live. Of course this excludes immoral behavior (like running up credit cards), this will not improve your life.

    Concentrate on the positive aspects of your life.
  • Mannie
    Mannie Member Posts: 52
    edslas said:

    Statistics - Mortality rate?
    One other thing I forgot to mention about the doctors unwillingness to offer up a prognosis. In a conversation with the PA, she mentioned that any statistics that are gathered quickly become obsolete because of the advances in treatment. One would think that some organization would track diagnosis to end of life and be able to provide an average that would filter out differences in age, general health, etc. But this PA pointed out that everyone is treated differently, and advances in the field are constantly offering up new treatment options.

    I was talking to a friend about this last night, and he pointed out some philosophical issues with even asking this question. He asked, why would you even want to know this? If you feel that you would live your life differently knowing you only have a couple years to live, you should start these changes even if you had 100 years to live. Of course this excludes immoral behavior (like running up credit cards), this will not improve your life.

    Concentrate on the positive aspects of your life.

    The Mortality of It All...
    I hadn't actually, seriously, thought about the mortality of my situation until I was in my oncologist's/surgeon's office this last visit (beginning of November). The only thing that had changed was that there were lot's of new patients and me. I got to hear my doc loudly tell the other patients what the standard protocol was for their treatment and I remembered what it was like when I was the new patient. I was diagnosed March 2007. It occurred to me at that moment that my doctor might not come in with my usual report of "stable" and that scared me to death. That really was the first time I had thought about the possibility that my tumor may come back.

    Originally, I was not expected to live longer than 9 months so I made sure all of my affairs were in order as much as I could. I've had good friends die from this damn disease and that doesn't make it any easier. I'm at the point now where I'm working on survivorship issues, which are in some ways more frustrating than the tumor. I'm also at the point where I don't think about having a tumor every second of everyday and it's really hard for people who are recently diagnosed to even believe that can be possible, I used to think that wasn't possible. I have learned about a gazillion things about myself, cancer, and general human response to the experience that is simply mind boggling.

    Oh, I do know people who sold their homes, racked up $1000s of debt, bought useless items, went on cruises, and also did really great things too. If you think you're going to die, I think you're more likely to get the stick out of your butt and do things you never would have otherwise done. I know I have.
  • Johnny Bravo
    Johnny Bravo Member Posts: 1
    edslas said:

    Statistics - Mortality rate?
    One other thing I forgot to mention about the doctors unwillingness to offer up a prognosis. In a conversation with the PA, she mentioned that any statistics that are gathered quickly become obsolete because of the advances in treatment. One would think that some organization would track diagnosis to end of life and be able to provide an average that would filter out differences in age, general health, etc. But this PA pointed out that everyone is treated differently, and advances in the field are constantly offering up new treatment options.

    I was talking to a friend about this last night, and he pointed out some philosophical issues with even asking this question. He asked, why would you even want to know this? If you feel that you would live your life differently knowing you only have a couple years to live, you should start these changes even if you had 100 years to live. Of course this excludes immoral behavior (like running up credit cards), this will not improve your life.

    Concentrate on the positive aspects of your life.

    Statistics-smatistics
    If it is any help or hope, I have been dealing with an inopperable astrocytoma since 2001. You never know what time and technology will bring. so have faith, live your life and focus on the positives.
  • alohajimmy
    alohajimmy Member Posts: 7
    steve68 said:

    thanks
    Hi fergieyo,

    Thanks for writing. I am about the same age, turning 46 this spring, diagnosed about 4 months ago, surgery not an option.I had whole brain radiation because the astrocytoma is very widely dispersed (right occipital, right parietal, right frontal, right temporal, corpus collosum, left parietal). I also found the radiation tiring, although I feel considerably more awake during the day now than I did three weeks ago when radiation finished. I am hopeful this trend continues and doesn't take a year.I dDon't know my Gy number but will find out. I will be starting a 25/5 regimen of Temodar at the end of January.

    I have found it very difficult to get a clear idea of prognsis from either doctors or internet. It seems to just be not well understood.
    It sounds like your astrocytoma is in a stable state which is great. Best of luck to you.

    Steve

    radiation
    My daughter's status was downgraded to a grade III. No more "tumor", now they call it cancer. While normally they would start whole brain radiation because of the size/diffusion of the cancer, the pediatic neuro-oncologist at UC-SF is suggesting we start a trial first. Unfortunately, no good trials available. While Temodore did not work well initially, now they will combine it with another drug. - Little by little we are slip-sliding away to whole brain radiation.Not good. If anyone has gone through this process, any thoughts/ideas about how to minimize the consequences? Of course, I will let you know if this trial helps at all.
  • Frenchie08
    Frenchie08 Member Posts: 2

    Statistics-smatistics
    If it is any help or hope, I have been dealing with an inopperable astrocytoma since 2001. You never know what time and technology will bring. so have faith, live your life and focus on the positives.

    Three-lobe Low-Grade/Grade II Astrocytoma
    It is good to hear you’re so positive after so much time.

    My 45 year old husband was diagnosed with a brain tumour of the right frontal, temporal and parietal lobes in September 2010. First symptoms were extreme tiredness, vague personality changes and then very frequent “episodes” (later diagnosed as partial seizures). He had months of tests that were all negative whilst “episodes” worsened in intensity and frequency. Eventually he had a full epileptic seizure. CT and MRI scans confirmed a three-lobe (possibly) low-grade glioma causing mass effect/midline shift which has been present for “many years”. Future treatment was advised as “wait & see with regular monitoring”.

    Numerous neurosurgeon opinions have confirmed the tumour is inoperable due to type, size, location and that he is left-handed. Currently, he is recovering from an “awake” craniotomy (respect!) to take biopsy samples. A Low-Grade/Grade II Astrocytoma was confirmed last week.

    We have had no prognosis except that which we have researched re WHO grading. For future treatment our gut feeling is to continue with the “wait & see with regular monitoring” approach as it is not a medical necessity to start radiation treatment. His health problems in recent months are due mainly to side-effects of steroids and epileptic drugs! Also, we are hoping other treatment options for this type of tumour (i.e. immunotherapy, gene therapy, biological therapy, hormone therapy etc) will be available to try at some point.

    We have had mixed responses as family, friends and colleagues have learned of the tumour. A few think we are mad to “wait and see”. Others think we are being “brave”. Actually, we are both positive people getting on with our lives and are determined to have as much fun as possible every day on our “journey” whatever its length!
  • the_liz_army
    the_liz_army Member Posts: 39

    Three-lobe Low-Grade/Grade II Astrocytoma
    It is good to hear you’re so positive after so much time.

    My 45 year old husband was diagnosed with a brain tumour of the right frontal, temporal and parietal lobes in September 2010. First symptoms were extreme tiredness, vague personality changes and then very frequent “episodes” (later diagnosed as partial seizures). He had months of tests that were all negative whilst “episodes” worsened in intensity and frequency. Eventually he had a full epileptic seizure. CT and MRI scans confirmed a three-lobe (possibly) low-grade glioma causing mass effect/midline shift which has been present for “many years”. Future treatment was advised as “wait & see with regular monitoring”.

    Numerous neurosurgeon opinions have confirmed the tumour is inoperable due to type, size, location and that he is left-handed. Currently, he is recovering from an “awake” craniotomy (respect!) to take biopsy samples. A Low-Grade/Grade II Astrocytoma was confirmed last week.

    We have had no prognosis except that which we have researched re WHO grading. For future treatment our gut feeling is to continue with the “wait & see with regular monitoring” approach as it is not a medical necessity to start radiation treatment. His health problems in recent months are due mainly to side-effects of steroids and epileptic drugs! Also, we are hoping other treatment options for this type of tumour (i.e. immunotherapy, gene therapy, biological therapy, hormone therapy etc) will be available to try at some point.

    We have had mixed responses as family, friends and colleagues have learned of the tumour. A few think we are mad to “wait and see”. Others think we are being “brave”. Actually, we are both positive people getting on with our lives and are determined to have as much fun as possible every day on our “journey” whatever its length!

    Left handedness
    Hey Frenchie08:

    Wondering... why was your husband's left handedness an issue when it came to deciding about an operation?

    Curiously,
    Liz