gliomatosis cerebri

Not alone...
My name is James from Houston, TX and I am 29 years old with a Gliomatosis Cerebri Stage 3 as well. My disease is all over my brain as well and they were able to do my biospy from one of the bigger nodules.

Where are you presently getting treatment at? I found out in March of 2010 and will tell you the best treatment to date has been temodar with radiation like what you are doing right now. I look forward to connecting with you and sharing information as we both fight this battle. What do you think?

annstillhere said:

I am so glad to finally
I am so glad to finally connect with someone who seems to be walking the same path. I am getting temodar and rad at evanston hospital, kellogg treatment center in evanston IL. I do have complete confidence in my doctors but this is a "walk by faith not by sight" journey. I will have no indication if this treatment has any result until my MRI Aug 20. It gives me great confidence to see that you have been dealing with this over a year and you are still here. I would love to connect with you.

Completely Agree...
I couldn't agree more with wanting to connect. I found out in March of 2010 of the disease I have and immediately reached all over the internet to find others. I was able to find a few recent cases where members had posted on a site called CaringBridge.Org, however the results of their treatments have not been successful. Those 3 that I found were young children though and I am sure you know everyones case is completely different.

My treatments are being done at Memorial Hermann in the Houston Texas Medical Center. I did Temodar for the first 3-4 months with great results of slowing the Tumor down for growth but it was still getting bigger. The doctors decided that we would do the 6 weeks of IMRT Radiation along with low doses of temodar daily. Combined it was 42 days of dual treatment, but I made it. After radiation, you will probably be asked to wait about 30-60 days before another MRI because Radiation can cause Scar Tissue that shows up on the MRI as an enhanced area. When I had my scan, the treatment worked at shrinking the tumor which made me happy, however it did not remove it completely. Now I am on a weekly treatment of IV Chemotherapy using CPT-11 and Avastin. My last scan was in June and it showed that the IV Chemo has been stopping the tumor from growing, however it was not shrinking it. They then noticed two new areas of slight enhancement. Since there was enhancement, the IV Chemo is not working 100% at killing it. I just got approved after a very long battle to take Temodar and IV Chemo concurrently which has shown to be the best treatment in clinical trials. I am excited to see how it works but scared as to the side effects I am going to have placing that much poison through my body at once.

Thats where I am today. Let me know how you would like to connect. Email would be best and am wouldn't mind talking to you on the phone if you would like. Let me know.

James

JTHennessey said:

Completely Agree...
I couldn't agree more with wanting to connect. I found out in March of 2010 of the disease I have and immediately reached all over the internet to find others. I was able to find a few recent cases where members had posted on a site called CaringBridge.Org, however the results of their treatments have not been successful. Those 3 that I found were young children though and I am sure you know everyones case is completely different.

My treatments are being done at Memorial Hermann in the Houston Texas Medical Center. I did Temodar for the first 3-4 months with great results of slowing the Tumor down for growth but it was still getting bigger. The doctors decided that we would do the 6 weeks of IMRT Radiation along with low doses of temodar daily. Combined it was 42 days of dual treatment, but I made it. After radiation, you will probably be asked to wait about 30-60 days before another MRI because Radiation can cause Scar Tissue that shows up on the MRI as an enhanced area. When I had my scan, the treatment worked at shrinking the tumor which made me happy, however it did not remove it completely. Now I am on a weekly treatment of IV Chemotherapy using CPT-11 and Avastin. My last scan was in June and it showed that the IV Chemo has been stopping the tumor from growing, however it was not shrinking it. They then noticed two new areas of slight enhancement. Since there was enhancement, the IV Chemo is not working 100% at killing it. I just got approved after a very long battle to take Temodar and IV Chemo concurrently which has shown to be the best treatment in clinical trials. I am excited to see how it works but scared as to the side effects I am going to have placing that much poison through my body at once.

Thats where I am today. Let me know how you would like to connect. Email would be best and am wouldn't mind talking to you on the phone if you would like. Let me know.

James

Gliomatosis Cerebri
Dear James;
My name is Sara. I am writing from Spain. My 47 year old husband has been recently diagnosed of gliomatosis cerebri. That was on June the 21 st, when he had an MRI for mild neurologic symtoms. One week after he had an open biopsy so that they could analyze the tissues and make the diagnosis. (grade III). The doctors decided to treat him with both oral temozolamide and radiotherapy. As the extension of the lesion is very important and affects also the brain stem, they indicated we should have tomotherapy (a special way to deliver the treatment). We have had already 4 radiotherapy sessions, and we expect to receive 20, and if the tolerance is good, 25. Of course he is also taking dexametasone, Keppra and omeprazol. Your letter and conversation with Ann has helped me quite a lot. I am an ophthalmologist so, as you can imagine I have read as much as I have found about gliomatosis cerebri. I would like to ask you about your Iv chemotherapy schedule, and whether you can indicate to me if there is any place where I can find doctors who are used to see this type of disease. Thanks in advance.
Sara

Dycer05 said:

hi my name is Stacy, i my

hi my name is Stacy, i my boyfriend is 32 and he was diagnosed with grade two last year, we need to talk to people who know what we are going through, he has been told that he can month ace surgery, and it's everywhere, we are waitknow to see a consultant, about chemo, can anyone help us please x

Hi Stacy:  I'm so sorry you

Hi Stacy:  I'm so sorry you and your boyfriend are going through this situation.  My wife passed away from what doctors think was gliomatosis cerebri about 3 months ago.  It sucked.  There's just no getting around it.  She lived for just under a year with the diagnosis, and struggled mostly in her last two months.  Everyone's situation is different, but what I would suggest is that if radiation is an option (my wife had it, focusing on her brain stem where a larger tumor had formed), then do it sooner than later, presuming that one or some of the tumors are causing problems with your boyfriend's functions. 

My wife had radiation in her last couple months and I think it prolonged her misery.  In hindsight, I wish she would have had it earlier, or not at all.  The radiation essentially prolonged what was not a good life in her last weeks.  I am NOT a doctor and EVERYONE'S situation is different, so keep this in mind as you read my advice.  Hopefully, your boyfriend can be treated and will have a good life...this is not an unreasonable thought.

All of my best for you.

JTHennessey said:

Completely Agree...
I couldn't agree more with wanting to connect. I found out in March of 2010 of the disease I have and immediately reached all over the internet to find others. I was able to find a few recent cases where members had posted on a site called CaringBridge.Org, however the results of their treatments have not been successful. Those 3 that I found were young children though and I am sure you know everyones case is completely different.

My treatments are being done at Memorial Hermann in the Houston Texas Medical Center. I did Temodar for the first 3-4 months with great results of slowing the Tumor down for growth but it was still getting bigger. The doctors decided that we would do the 6 weeks of IMRT Radiation along with low doses of temodar daily. Combined it was 42 days of dual treatment, but I made it. After radiation, you will probably be asked to wait about 30-60 days before another MRI because Radiation can cause Scar Tissue that shows up on the MRI as an enhanced area. When I had my scan, the treatment worked at shrinking the tumor which made me happy, however it did not remove it completely. Now I am on a weekly treatment of IV Chemotherapy using CPT-11 and Avastin. My last scan was in June and it showed that the IV Chemo has been stopping the tumor from growing, however it was not shrinking it. They then noticed two new areas of slight enhancement. Since there was enhancement, the IV Chemo is not working 100% at killing it. I just got approved after a very long battle to take Temodar and IV Chemo concurrently which has shown to be the best treatment in clinical trials. I am excited to see how it works but scared as to the side effects I am going to have placing that much poison through my body at once.

Thats where I am today. Let me know how you would like to connect. Email would be best and am wouldn't mind talking to you on the phone if you would like. Let me know.

James

Worried

Hi,

Can anyone tell me about GC whether any patient have survived from GC or live longer (e.g., 15 years or more)

 

My brother, 45 yrs old have recently been diagnosed with GC (Grade I, I guess) about 3 months ago.

 

Kindly advise, or give me some better news.

 

Thanks

Tahir

Patricia_Franse said:

Hi Jenny,
 
your post is 2

Hi Jenny,

 

your post is 2 years old so I am afraid to ask if your husband is still alive?

I am from The Netherlands as well and diagnosed with GC 4 weeks ago.

I really would like to get in contact with people who can advise me from experience,

 

Kind regards,

 

Patricia

GC stage 3

Patricia, my daughter was diagnosed a little over a year ago. she would love to hear from you.