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Anyone know the progessive effects of gliomatosis cerebri?

Tubbs
Posts: 51
Joined: Jul 2009

My wife had a brain tumor diagnosed over three years ago (anaplastic astrocytoma, grade III). All of her MRIs looked good over the last few years but we got a bad surprise in December, 2011. A couple of small lesions had formed away from her original tumor.

So, a gamma knife was scheduled a few weeks later and she was put back on low doses of temodar.

The gamma knife was cancelled the day of the procedure when the pre-op MRI showed that the lesions had jumped around and grown to about 10. Also, the previous lesions -- especially the bigger of the two -- had doubled in size in a very short time.

My wife had a biopsy later that week and goes in for her second avastin and CPT11 drip tomorrow (along with a ton of anti-nausea and steroid drips). She is scheduled for six months of chemo, once every two weeks. She understandably hates it and has mentioned more then once that she has pondered not doing any more chemo due to the awful side effects.

As far as the pathology report goes, the tumor board at her hospital believes she has gliomatosis cerebri, but as with so much of brain cancers, cannot be 100% certain.

She has not shown any of the 'usual' signs, however, such as seizures, loss of balance, etc. I am hypersensitive to looking out for any problems, but maybe am over-thinking it.

Has anyone been through this, or is currently going through this? I am so lost...I just don't know what to expect.

Thanks.

JTHennessey
Posts: 6
Joined: Mar 2010

My name is James and I am located in Houston, TX. I was told that I had Gliomatosis Cerebri on March 17th, 2010 after a biopsy was completed. Since then, I have gone through Temodar, IMRT Radiation & Temodar, Gamma-Knife and now am on a weekly treatment of CPT-11 & Avastin while taking Temodar on a 5/28 schedule. While the side effects of CPT-11 are not good, I am very happy to still able to be here and feel blessed for that. I have been on the Chemo Drip since August of 2011 and will not be off until there is a cure for this disease. The drugs have kept my Gliomatosis Cerebri Stable at this time, but has not reduced the size of the lesions. If you have any questions, do not hesitate to email or post on here. Where are you located at?

Speak to you soon,
James

Tubbs
Posts: 51
Joined: Jul 2009

James: Thank you for your insight. It is very much appreciated! Can I ask, how far spread was your glio cerebri when it was diagnosed? I'm thinking if you were able to do the gamma knife, you didn't have as many lesions as my wife, but I'm not an expert. And, how long do the doctors think it took for your treatments to stablize your glio cerebri?

And what is IMRT radiation? Is that 'whole brain' radiation?

Finally, have you (or others around you) noticed any affects of the glio cerebri? The oncologist said that my wife may experience lower back pain and neck pain, mainly I think, because one of the lesions has formed near her spinal cortex. She has lesions on both side of her brain, "jumping around" as the doctors say.

Sorry if that's a lot of questions, but this part of her cancer is all new to me. Her original tumor was so much simpler to understand.

Thanks again for your insight.

JTHennessey
Posts: 6
Joined: Mar 2010

I am not too certain as to how far spread it was when they confirmed it on March 17th, 2010. I can tell you that I was having signs and symptoms around November of the year before and then an episode in February that caused some concern. After the confirmation on March 17th, I was placed on Temodar for weeks and it started to slow the progression and was able to start reducing the size of the main tumor. Once the Tumor started to shrink, we moved over to 6 weeks of IMRT Radiation and 42 days of daily Temodar. This process would show great results 3 months later and thats when the Doctor decided to keep me on Temodar and fought with my Insurance Company so that I could take CPT-11 and Avastin by IV while keeping me on an Oral Temodar Schedule of 5/28. That was in November of 2010 and have been doing that until September in 2011 to tackle a small area of growth by Gamma-Knife. After that was treated, it was back to the CPT-11/Avastin/Temodar Schedule and thats what I am on now and still going strong. I have an MRI scheduled for March 27th and should have the results later that day.

The only affects that I have noticed and my family has noticed is the Semi-Partial Seizures that I have had on my Right Side. The Doctors have me on a combo of Keppra and Valsporic Acid to stop those and things are going good. At this time I have not had any back issues as I do not believe any of my lesions are near my spinal cord, however I will ask on the 27th when they read my results. I have been able to maintain a good quality of life and still work full time. I find myself tired more oftern but the sleep feels really good.

Gliomatosis Cerbri is a very unique disease with a very grim outlook, however I am here to tell you do not believe all that you read online. I am 29 years old going on 30 and with my doctors here in Houston, I am confident that what they are doing with my case is going to help others live longer! Where are you and your wife located at?

JTHennessey
Posts: 6
Joined: Mar 2010

Double Posted... At the doctors office right now getting CPT-11 and Avastin.

Tubbs
Posts: 51
Joined: Jul 2009

James:
Your post is very helpful and hopeful. It sounds like my wife's sitution is more advanced then yours (not to understate the importance of your situation!) since they have ruled out gamma knife treatment and put her nearly immediately on avastin and CPT11 (along with Temodar, since she had good non-growth results with that after her original tumor was 80% removed; located in her left frontal lobe).

As of the last MRI, the docs say that it appears to be 'tracking,' meaning it's moving fast, so they're throwing the big guns at it. Most fortunately, the hospital she's being treated at has a program that covers her Avastin and CPT11. We are very, very lucky for that!

Indeed, all the research I've come up with does not make the prognosis for gliomatosis cerebri look promising, but your experience gives me some encouragement.

We'll have a much better idea if the Avastin and chemo are working when she has her first MRI since starting treatment, in about a month.

She had her second treatment two days ago and after a shot of something or another, her nausea and fatigue are not nearly as bad as the first treatment. The worst side affect seems to be the accompanying grouchiness and depression. Hard to get her out of the slump, but I understand how she might feel mentally and physically. I just tell her that I understand and don't take it personally.

We are located in southern California (prefer not to give specific city...would be happy to in a private email).

Thanks again for your hopeful information and I hope your treatment yesterday is NOT kicking your arse too badly!

JTHennessey
Posts: 6
Joined: Mar 2010

Completely understand... While the tumor is moving fast, don't let it get you down. These drugs are effective, however will not work overnight! 1 Month MRI may not show any signs of improvement so be prepared and keep pushing.. For me the Avastin and CPT-11 have allowed the Gliomatosis Cerebri to stop growing, however not shrink it. Temodar has been the only thing that I can prove caused the tumor to shrink.

Gamma-Knife was used on me simply because it was in a location that they could get to safely and it was causing me to have some seizures.

The company I work for does have an office in Lake Forest, CA. I have visited the location when I went to see Dr. Keith Black at Cedars.... Have you ever heard of him?

I will send you my email address by PM, do not hesitate to email me anytime ok?

Speak to you soon,
James

Brikren
Posts: 2
Joined: Aug 2012

Read your posts and wanted to let you know you're not alone. My wife (age 48) was diagnosed last July (2011) with GC. Honestly been a rough road since then, but we're pressing through. Went through biopsy, debulking, radiation, cemo, and on 5/28 chemo regime now. In our case the disease has impacted 5 lobes to date. Chemo seems to be keeping it at bay for now, but the nerves on both of us start ratcheting up before each MRI. we're doing an MRI every 2 months. We are working through UPENN, and we too were unsuitable for Gamma Knife. We have not done Avastin to date, but think that may be next depending on if/when the tumor(s) starts to grow again.

angrene
Posts: 2
Joined: Nov 2012

Hello there,
I am a friend/caregiver for a 51 yom with glimatosis ceribri. I am new to this discussion, but your wife's situation is so similar to my friends, I was hoping to connect with you and see how all of her treatments are going?

My friend just got done with 5 weeks of radiation, CPT11 and temodar. He is now on a 6 week "break", but does continue with the Avastin.

I hope for the best for you and your wife and appreciate your time.

Kindly,
angrene

Tubbs
Posts: 51
Joined: Jul 2009

Hi Angrene. I am sorry to hear about your friend's diagnosis. Unfortunately, my wife passed away just over a month ago. Her tumor(s) were advanced enough to where she was thought to have more of a GBM in her last month. Either way, they are both forms of gliomas.

In my wife's situation, she had multiple tumors, so her case was a bit extreme and less hopefull. Still, she went to the hospital every two weeks like a trooper up until about 6 weeks before her passing to get treatment.

I don't know about your friend's situation, and I am not a fan of throwing out medical advice, but has your friend looked into gamma knife radiation?

I hope you and your friend are keeping your spirits up through this. Best of luck!

abradner
Posts: 2
Joined: May 2013

Dear Tubbs -

I have been reading these posts and am saddened to hear about your wife...you must be missing her terribly.  My father was diagnosed 2 days ago (but we have ahd some inkling for almost 6 weeks now) with GMC.  His whole left side ofhis brain lights up on the MRI - and is a lot like the spiderweb that Birken talked about.  Of course, no one will give us a prognosis...but operating is not an option.  Do you mind telling me how large your wife's was when she was diagnosed and how long she fought it?  Thank you so much for your openness - may you find peace in the memories of the life you two shared.

Sincerely,

abradner

Tubbs
Posts: 51
Joined: Jul 2009

Hi Angrene. I am sorry to hear about your friend's diagnosis. Unfortunately, my wife passed away just over a month ago. Her tumor(s) were advanced enough to where she was thought to have more of a GBM in her last month. Either way, they are both forms of gliomas.

In my wife's situation, she had multiple tumors, so her case was a bit extreme and less hopefull. Still, she went to the hospital every two weeks like a trooper up until about 6 weeks before her passing to get treatment.

I don't know about your friend's situation, and I am not a fan of throwing out medical advice, but has your friend looked into gamma knife radiation?

I hope you and your friend are keeping your spirits up through this. Best of luck!

angrene
Posts: 2
Joined: Nov 2012

Thank you for reaching out Tubbs. I am so sorry to hear about your wife and hope that you are finding comfort every day in the memories you have of your life together. I am sure she fought hard.

Appreciate your words of encouragement and hope. My friend has not had gamma knife yet, but it has been talked about down the road. I truly appreciate any advice or input as this is a bit of a guessing game since it is a very rare tumor. We will see what direction he decides to go. Either way, it will be a long road as you are unfortunately aware of. He does have multiple tumors as well and before the first round of treatments, his tumor doubled in size in a month. Things have not progressed after the first round of treatments, but things have not shrunk in size either. So, it is a waiting game until the next mri.

Wishing you healing days ahead. Thank you again for your response.
Kindly,
Angie

Brikren
Posts: 2
Joined: Aug 2012

Angrene,

I guess its good to have someone else going through the same thing.  My wife has been unable to do gamma knife as the tumor is more a spider web than a clear tumor.  We're doing the best  we can, but have honestly been in and out of hospitals and rehab centers since my previous post.  Her tumor (to date) doen't seem to be growing yet, but the side affects from all the treatments have been rough on us.  She's home now and i'm hoping for a period of stability.  last MRI about 2 months ago showed a small "possible" growth.  One scheduled later this month, so we'll see what that leads to.  I've looked at Avastin as well as some trials on stem cell replacement.  Most of those seem to be occurring out west though (UCLA), so being we're on the east coast we are not a viable candidate.

abradner
Posts: 2
Joined: May 2013

Hi Brikren -

I hope your wife is doing alright and that the MRI did NOT show growth.  My father has a very similar story - they did not call it spiderweb - they used the word "diffuse area" which translated into the whole left side of his head lights up on the MRI.  Do you mind me asking what the doctors said the treatments would do for your wife?  It sounds like they are keeping the tumors from growing.  When she gets a breather from the treatment has she stopped declining?  Does she have any periods where she feels okay and is able to do some of the things that matter to her?  My father is 77 adn in the last 6 weeks he has declined markedly (but he hasn't been given any treatments of any kind yet).  We are wondering what to expect.  Anything you can share would be helpful.  I will keep you and your wife in my thoughts and prayers.

Peace to you both -

Abradner

NDM
Posts: 1
Joined: Feb 2014

Dear All,

My father was recently diagnosed with GC. I would apprieciate, if anyone would suggest good doctors in NYC or Boston area for second opinion. 

Thanking you,

Best Regards

ND

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