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GBM of the spine, anyone else?

MrsPlate
Posts: 19
Joined: Jun 2010

My husband had a spinal tumor found February 28th, we got the pathology back from Brigham & Womens and John Hopkins saying GBM mid March. His brain is clear, no tumors there. They removed about 80% of the tumor surgically and he's done Radiation and Temodar for treatment. The first MRI after treatment has shown no new growth, we have another MRI later this month to check for growth etc. He's just finnished his first week of maintenance Temodar last week- 300mg 5 days. Two days after finnishing that dose was pretty ugly, he got so sick this time. He had an MRI on his brain because he's been having terrible headaches, but in the last 4 weeks he's had 2 CT scans and they were clear.

This whole thing has been such a rollercoaster and crazy, it's like he takes 1 step forward and 2 steps back. The Tumor effects his left leg function and some of the bladder and bowel function, though thankfully it hasn't been too bad there.

He's also on dexamethazone (steroid) for the swelling around the surgical site and the tumor, has been on it since January actually, every time we step down something new happens and we have to go back up. He hates the puffy face that comes from the steroid but needs to stay on it to be able to walk.

He's had a pulmonary embolism that "should have killed him" and is also on cumodin to prevent any more of them, which lead to nose bleeds that were un-stoppable. Like I said, roller coaster.

Prior to this GBM, he was a healthy 37yr old. We have 2 kids- a 12 yr old and a 4 yr old, and one on the way (in the next 4 weeks actually). The 12 yr old is pretty aware of the situation, but we try to keep everything all positive with both kids... to say this whole thing was unexpected would be an understatement, for sure. It's so hard to even imagine what's comming next, or what to look for since it's not in his brain, started on his spine and hasn't spread so far... I would love to connect with others that are going through this- and it would be very helpful to know if there is anyone else out there where their tumor started in the spine?

Our neurologist is working with doctors all over the place, specifically Duke medical, as well as our Radiation Oncologist and regular Oncologists are working with docs at Sloan, & Brigam and Womens.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

so far i have not found another member with GBM of spine that has not had cancer located in brain. Perhaps someone in CSN community will step up that has your spouses profile.

try link below as well

Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)
http://www.cancercompass.com/message-board/message/all,633,21.htm?mid=324138

CONTACTS FOR MORE INFORMATION, WEB SITES

The definitive bt links site; http://www.virtualtrials.com/btlinks/
National Brain Tumor Foundation (NBTF) 800-934-CURE; http://www.braintumor.org
American Brain Tumor Assn. (ABTA), Des Plains, IL, 800-886-2282, http://www.abta.org/
The Brain Tumor Society (TBTS), 1-800-770-8287 http://www.tbts.org
The Brain Tumor Foundation of Canada http://www.btfc.org
The National Cancer Institute (NCI) 1-800-4-CANCER
ONCOLINK, http://oncolink.upenn.edu/

Stories of Hope
David M. Bailey http://www.davidmbailey.com

MrsPlate
Posts: 19
Joined: Jun 2010

Thank you for the resources, I appreciate them all...

It's so frusterating that there aren't any others with the same kind of GBM, it makes it difficlt to know what to expect next... I've heard of only one other person that presented the same way, who made it less than 2 years. I was hoping there would be someone on here... or someone that knew someone...

single3rd's picture
single3rd
Posts: 18
Joined: May 2010

My oncologist believed that the new tumor growth diagnosed on my recent brain MRI was a GBM, and had already started drafting "begging letters" to my insurance company for preauthorization for avastin. Fortunately (?), the biopsy pathology report diagnosed it as a II/III glioma, the same class as the tumor that was resected in 2008. It's inoperable, so he's changed my chemo from Temodar to PVC. I did a lot of on-line research on GBMs, and wished I hadn't.

May God bless you both.

BruceAllardyce
Posts: 1
Joined: Sep 2011

I have a GBM 4 soley in the spine.

I have spent months trawling the Internet looking for similar stories. I have GBM in my spine at t7 of my spine and was diagnosed in Feb 2011. however, I have been paralyzed from t7 since July 2008 and it was never diagnosed properly.
I have done the whole temodar and radio treatment which apparently hasn't worked. I am now on the PCV treatment as we can't get Avastin in the UK. I don't know how long the tumour was a stage 4 as I was undiagnosed for so long.

It seems that this disease soley in the spine is really rare. I should have pushed for a spinal resection but have missed the opportunity. I am pumped full of steroids and actually feel ok. Brain scans seem to clear - I have stopped asking for scans as they seem to distress my wife more than anything else. The main thing is to keep positive.

As a sufferer of this disease I am probably on the wrong forum but hey it is so rare.

I hope and pray for you and your family. If you have questions dont hesitate to ask as I am typing this oin a phone at 2 in the morning

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I am sorry that you and your family are going through this, I read your post and I just want you to know that cancer is cancer, it doesn't matter what forum you post on, we are here for you. My daughter has AA3, brain tumor, I originally was on the childhood cancer page, but there didn't seem to be too many kids with AA3. Her doctors told me that it is more of an adult cancer. So I came here and It is so nice to talk to people who understand. I will keep you and your family in my thoughts and prayers

JuliaWmom
Posts: 1
Joined: Oct 2011

my 8yo daughter was dx with a brain tumor in June 2011. She had a resection that same day and then a VP shunt in July. Started Temodar in mid july with radiation to the brain until Aug 29. a week later we were admited to the ER with protracted vomiting due to cerebral edema. two weeks later her back started to hurt, an MRI of her spine showed extensive disease process in her spine, so now, this last week, we started radiation of the spine, becauase the MD said if we didn't, she could rapidly loose function and be paralyzed, we also started irinotecan, another chemo, the other night. We will start avastin in 2-3 weeks, if she tolerates all of this .On top of that, the oncologist thinks we may only have 6-8 weeks left with her. I feel like this is insanely progressive, I learned from the beginning that this was aggressive, but this gives it a new meaning. She is my baby, has gone through way too much than any child EVER should go through, yet her body has tolerated all of this! I am wondering if maybe?????? this time, God will you make a miracle?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I am praying for a miracle for your daughter. And grace and strength for you. My heart breaks for you both....

ordinaryoddballs
Posts: 1
Joined: Feb 2012

This past June, my 14 yr old presented with mild back pain, in 3 weeks she could not walk- after resection (not much was taken out), is was a stage 4 GBM in her spinal cord- from t5-t12 in various spots- she went thru 6 weeks of cranio spianl radiation (ImRT not proton), and temodar with that. 6 week break, and then started with Avastina nd temodar(every 28 days). Her first MRI showed major swelling(fromr adiation), then last one showed signifigant reduction in the tumor beds- she jsut had a mri on Friday 2/10, and it shows spinal bleeding (from avastin- which they now took her off of), and "swelling." In the last two weeks, she was walking alittle worse than before, and has had more pain. She generall has been pain free and walking grand since her surgery and lots of rehab to help. Right now,t hey say that she has some "iffy" spots on her ponsbut they are unsure if radiation related swelling or if spread. follow our blog- ordinaryoddballs.blogspot.com

btw we are at childrens hospital in philadelphia-

jrsnyder03
Posts: 2
Joined: May 2012

I, myself, have a GBM inside the spinal cord between T-8 and T-10 I believe. It's taken my ability to walk away. As a former athlete, that's been the hardest thing about it all. I've always been independent. So, having to rely on others to help with continence issues and getting what I need is really testing my faith in God and my patience. How's she handling everything? How are you holding up? I know it must be tough for you as well. I have a child myself and it would be almost unbearable for me to see my son go through this sort of thing. God bless you and make sure she knows she's loved and important. I hope to hear back from you :-)

Cat27
Posts: 1
Joined: Jan 2012

Hi, my name is Cat,my partner was diagnosed with a anaplastic astrocytoma in his spinal cord, which has now progressed to a GBM, it has been devastating seeing him loose the ability to walk, he was fit, energetic and athletic! He is 26 and so far this diease has proven devastating for us, another thing I find as his wife, is this diease is so lonely, there isn't anyone out there with this diease in the spinal cord, we have been through lots of treatment radiotherapy, pcv chemo, temozolide, since the proper diagnoses in November 2011, Be nice to connect with others and help eachother with advice through this horrible diease, we also have a little boy who is 2, who has kept us all going,

Wishing you all well

Cat x

jrsnyder03
Posts: 2
Joined: May 2012

How's he doing?

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