One patient with glioblastoma still alive nine years later
by Rebie85 on Fri Feb 08, 2013 05:40 PM
by gbmhost on Fri Feb 08, 2013 07:37 PM
Hello. I just joined this site. Your husband, you, and your children have entered a new world. I hope that you are not too far from a facility that specializes in the treatment of brain tumors, where you can have access to a neuro-oncologist, and, hopefully, get connected with a support network of caregivers (spouses, parents,family) who are in your position, have gone through some of what you will go through.
The effects of a brain tumor are unpredictable. The size and location of the tumor, the huge number of neural pathways and connections with other parts of the brain are different for each individual.
Physicians have not been a good source of information for me, in terms of the effects of the tumor and treatments. I have found Oncology nurses and a email-based caregivers group my wife belonged to more helpful in terms of information. Medical science is often as bewildered about brain tumors as the rest of us.
I'll try to keep in touch with this message group as I can.
CW (diagnosed glioblastoma multiforme) Oct 2003
by mollie924 on Sat Feb 09, 2013 01:57 AM
My husband was diagnosed with AA3 in Jan, 2011. He went through radiation and temodar. He is doing very well. Looking at him you would never surmise he has a brain tumor. He does have short term memory problems but that seems minor given the fact that we were expecting a lot worse when he was diagnosed. In the beginning he also was angry and took his anger out verbally on our family but over time he has come to accept his situation and has become a much more mellow and loving person. The diagnosis of a brain tumor is such a life altering diagnosis and it is not surprising to see a range of emotions displayed by the patient. I try to put myself in his shoes and then I can understand his anger and frustration.
by jpmog on Sat Feb 09, 2013 05:09 AM
I don't often write here, but found compelled to do so since you have young children as we do. My husband was diagnosed March 2011 with AA3 or GBMIV. We had four small children at the time and I was just expecting our 5th (all under the age of 8).
Just wanted to encourage you to take one day at a time ... it is a bumpy road and very different for each one.
My husbands first tumor was about half dollar size and responded amazingly well to treatment. Sept of 2012 a new tumor was found on his spine for which we just finished radiation for again and will start the monthly chemo rounds at the end of this month.
As far as the anger thing, if he is on any steroids that makes a huge difference a lot of times ... it can get better if he is able to ween off of it once treatment is completed.
The statistics are grim, but there is only one God in control and although it is still difficult, we try to focus on one day at a time and enjoy each day as best we can given the craziness of our busy household :)
Where are you located?
by Rebie85 on Sat Feb 09, 2013 01:13 PM
by Bee_Rich on Sat Feb 09, 2013 09:38 PM
hi rebie, i was diagnosed w/ a gr2-3 diffuse/infitrative astrocytoma last sept. it is mostly in my right parietal, so not much effect on my emotions, etc like a frontal. i live in gainesville, so am blessed to be very close to shands, and its brain tumor program. we looked at moffit in tampa, and am very glad we chose shands, if only for the proximity as i have had several incidents that would have made an out of town center very difficult for my wife and child.
so, i would recommend using a major facility that has a brain tumor center. i believe orlando has one affiliated w/ m.d. anderson, not sur about volusia.
by gbmhost on Mon Feb 11, 2013 12:39 AM
short comment about steroids.. Every brain tumor patient I have ever known, myself included, is put on dexamethasone (Decadron). Physicians don't have anything else in their drug formulary to deal with the swelling. After 4 1/2 years of daily use, I asked my doctor to work with me on a schedule to discontinue it, while I started taking Boswellia and Bromelain, nutritional supplements, both with anti-inflammatory properties, without the serious side-effects that chronic steroid use was having on me.
by miamib on Mon Feb 11, 2013 05:59 PM
gbm host: are those 2 natural supplements helping with the swelling? I have a diffuse astrocytoma and sometines I feel that my current symptons are the result of swelling caused by my biopsy as opposed to the tumor itself.
I didn't have any major symptoms prior to my biopsy which makes me feel like a moron for even having a biopsy in the first place
anyone have any thoughts?
May G-D bless you all with a speedy cure and fully functional long life!
by gbmhost on Tue Feb 19, 2013 09:11 PM
Yes the Boswellia and Bromelain reduce the swelling and I used them to discontinue the Decadron, after 4 1/2 years. From personal experience, symptoms can be caused by swelling and edema at the tumor site. I think that any type of surgery has the potential for damage.
You were not a moron for consenting to the biopsy. You were a person who had been told that she had a mass in her brain. Was it benign? malignant? what treatment, if any?? Nobody knew.
If you had no major symptoms, what led to the tumors discovery??
Thank you for your encouragement
CW, glioblastoma dx 10/03
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