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

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 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

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

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?

Stephanie1206 said:

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 said:

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.

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

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.

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.

Johnny Bravo said:

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!