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

steve68's picture
steve68
Posts: 9
Joined: Jan 2010

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

fergieyo
Posts: 1
Joined: Jan 2010

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's picture
steve68
Posts: 9
Joined: Jan 2010

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
Posts: 3
Joined: Jun 2010

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

tusya7823
Posts: 2
Joined: Jul 2010

Hi Steve! How are things with you?

alohajimmy
Posts: 7
Joined: Nov 2010

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.

Sofia13
Posts: 3
Joined: Jun 2010

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
Posts: 1
Joined: Jun 2010

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
Posts: 1
Joined: Jun 2010

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!

rdrichard
Posts: 3
Joined: Oct 2010

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.

rdrichard
Posts: 3
Joined: Oct 2010

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

alohajimmy
Posts: 7
Joined: Nov 2010

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
Posts: 1
Joined: Oct 2010

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
Posts: 7
Joined: Nov 2010

My daughter's initial radiation ends today. In 90 minutes we make a decision about how much additional radiation if any. One three day additional treatment or two three day treatments. Fortunately, the oncologist says she has seldom seen such a favorable result from whole brain radiation. But it remains and unfortunately the center of the remaining is in the part of the brain that is most vital. Any thoughts you can give me on what we can do to assist our daughter once the radiation is over would be appreciated.

alohajimmy
Posts: 7
Joined: Nov 2010

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's picture
edslas
Posts: 19
Joined: Dec 2010

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
Posts: 112
Joined: Oct 2009

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's picture
edslas
Posts: 19
Joined: Dec 2010

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
Posts: 51
Joined: Oct 2008

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
Posts: 1
Joined: Dec 2010

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.

Frenchie08
Posts: 2
Joined: Dec 2010

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's picture
the_liz_army
Posts: 40
Joined: Mar 2009

Hey Frenchie08:

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

Curiously,
Liz

Frenchie08
Posts: 2
Joined: Dec 2010

Hi Liz

His tumour is situated in right frontal-temporal-parietal lobes and apparently this is where his motor area is to control the left hand side of his body.

That's an impressive scar. Hope you have recovered well.

Andrea

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

HI liz

They say that if you are a left-handed person most of your motor skills are controlled by the right portion of your brain, and vice-versa if you are right-handed. so if a persons right portion of the brain gets damaged then that could impair his/her motor skills in the left side of the body.

Livvie
Posts: 6
Joined: Feb 2013

Hi Frenchie,

Currently find ourselves in the same situation with my 60 year old husband having recently been diagnosed with the same condition.

We are currently waiting for results to give a definitive,  yes it is grade 11 so that treatment options can be looked at. Surgery is out. Have also had some interesting responses along the line of 'Why don't they just cut it out?'

Love the positive attitude - that's our approach too.

Any experience you can share our strategies that have worked for you two would be most welcome.

Cheers

 Livvie

 

Caquigg46's picture
Caquigg46
Posts: 3
Joined: Feb 2013

Livvie, 

I was diagnosed with a low grade astrocytoma in 2007. It is diffuse so it is inoperable. I went to Duke and Hopkins and the advice I got from both was to do nothing until it changed. It ended up growing in 2009 and they put me on temodar for a year (oral- 80 mg every day). Since then it has shrunk tremendously and I am pretty healthy. However, I think the actual biopsy may be what caused it to change. They knew it was there starting in 2005 and I pushed for the actual biopsy. my advice for anyone going through this is to definitely see a neuro psychologist! Because I always looked well and felt pretty good, I didn't realize how the tumor in my frontal lobe was altering my personality and inhibitions drastically, I ended up losing my marriage in the process. I think hospitals should require brain tumor patients to seek emotional support and to give patients more Knowledge of the emotional and psychological effects. God Bless!

Livvie
Posts: 6
Joined: Feb 2013

Hi Caquigg46,

 Many thanks for your response  - it is really helpful to hear from someone who is living with the same issues as my my husband. The bioposy reults are yet to come in, but they think grade two (fingers crossed - he such a high achiever, I keep telling him this is one time we want him to get a low score!) THe decision not to have surgery was easy - this is a man whose life has revolved around his speaking abilities.

Temodar has been mentioned as an option - thank yoiu for sharing how this treastment has wortked for you.

 Your insights into seeking emotiuonal support along with psychological are ones we have started to look at - the journey is both emotionally and psychologically draining - and that is without the effects on personality etc being taken into account!

I hope this post finds you still fighting the good fight,

Livvie

riakojohn
Posts: 2
Joined: Jan 2011

my good friend was just diagnosed with this Gliomatosis cerebri and he wants me to go online to findout places where he can go to get help. We live in Canada and anything to help us will be great even if you can call that would be awsome. I really do not know what to do here I'm so worried about him.

nuezdallas
Posts: 3
Joined: Apr 2011

My mom was diagnosed with Grade 3 (Sep,14,2010) I hope all is well. :( its hard .. specially for my little sister and I. We were very close. But we are thankful :) she is okay

elisha777
Posts: 1
Joined: Feb 2012

Hello to all!
I just recently discovered that page when i was googleing about grade 2 astrocytoma. One of my very close friend had mini-insult in October 2011 and then his doctors invited me and one of his friend to appointment and I learned that my close friend had been already almost thirty year this grade 2 astrocytoma.
Because my mom died into another cancer, I was little bit shocked when I heard those news. Unfornately as I have heard, this kind of brain tumors are very complicated to operate so there is only one option in my case- to trust God that He will help my friend out of that.

Because I am working in another country at moment, recently I had opportunity to meet with him and right now she have suffering hearing unstability- which means that one moment she might listen perfectly but in next moment she don´t hear nothing.
And also she have discovered dancer of remain blind in august 2011 which means taking some medicine to prevent it.

Livvie
Posts: 6
Joined: Feb 2013

Hi Steve,

My husband has just been diagnosed with the same thing - reading your post was like some one was in our heads expressing exactly what we are oing through and feeling.

If you are able to share any of your journey so far, high and lows, it would be appreciated.

Keep up the good fight,

Livvie

Livvie
Posts: 6
Joined: Feb 2013

Hi everyone,

 new to the network. Great thsat there is a place for discussion.

 Cheers

 Livvie

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