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anyone else been in the same situation?

Posts: 1
Joined: Feb 2013

Hi All.

first time on here so let me introduce my self. I am Ross 65 and my wife Christine is 62 & we live in Sydney Australia. I am Christine's carer.

I feel I have to tell the whole story here so here goes and bear with me please.

Three years ago this month Chris was doing the morning breakfast dishes and felt funny in the left arm, infact she did not know where it was. Took her to hospital &they let her out after a few tests believing it was a mild stroke. two weeks later the same thing again more tests and most likely a mild stroke.

We went to our GP and chris was refered to a neurologist who straight away sent her for an MRI.  The MRI showed up a golf ball size tumor on the right side of her brain.

Within a week she was in hospital & had the tumor removed (GBM IV) the Neurosurgeon was happy and said she got it all however it could have tenticles & gaves us on average 14 months. Because Chris was so fit and healthy they were able to give her maximum doses of Chemo (Temodal) and Radiation for the couple of months and then on the chemo maintenance programe of a week on and three weeks off for 6 months all of which she handled like a champion. An MRI in July showed that the thing was back but only small and MRI's every 2-3 months for the last 2.5 years has shown it to be stable with no further growth.

Here is my dilema. After the operation Chris was given a fair dose of Dexamethsone which caused hallucinations in hospital but she was home in three days and we quickly weened her of the Dex.

During the Radiation treatment we found that Chris was slowly becoming paralysed down her left hand side. It turned out to be quite alot of swelling caused by the radiation and it was back onto the Dexamethsone for her 16mg a day & has been for the last 2.5 years. The last three years have been hell for my beautiful wife and all because of this bloody drug.  She has been back to hospital 3 times once with pneumonia and twice for cellulitis in the left leg. for 3 years she has been covered in bruises, had weight gain and the moon face, skin tears, hallucinations, extremly moody & difficulty walking.  She hates how she looks and will burst into tears if she sees herself in a mirror.

Her GP, Oncologist and Neurologist have all said how bad the Dex is but also how good it is for its intended use however we should ttry and get her off it but may find a point where we can go no lower. We are slowly getting down but find it has taken quiet awhile and it seems to be a few mg down and the a couple of mg back up and so forth. We have now got it down to 4mg daily however all I have said above is now tenfold worse & we are trying to make things a little easier for her by taking Xanax as well.

Is there anyone who has been in a similar situation & if so how did you handle it?

Should we just try and ride through this or go back up on the Dex?

It breaks my heart to see my beautiful wife of 42 years suffering like this.  Yes they said 14 months and it has been three years but we would also like a little quality of life as well.

Sorry for being so long winded and look for forward any help offered regardless of how small you may think it is.







Posts: 13
Joined: Feb 2013

First of all, let me say that I'm sorry that you're going through this.  My husband was (65yrs) was diagnosed just last month with GBM, after his surgery to remove his brain mass.  I have no idea what you're going through with all of the medication and treatments.  We have chosen not to go down that path.  Our oncologist said 9 months without treatment and 14 months with treatment.  We decided that with a very active teenager in high school and 2 young granddaughters, we wanted to be healthy to enjoy what time we have left.  We're doing alternative treatment, and there's plenty out there.  If it gives us extra time great, if not, we were able to enjoy the time we have.  Good luck with where ever God leads you Wink

Posts: 2
Joined: Apr 2013

My father got diagnosed with GBM IV in Nov. 2012. Surgury went perfect, he did chemo and radiation.. No side effects perfect recovery. MRI results in Feb. 2013 showed the entire tumor was back and a little bigger with a new tumor on the opposite side.. It's been down hill from there. I researched and found alternative medicines that he took, but to address your question.. It is ultimately what you feel is best. My dad is taking 6mg 4 times a day of Dex but without it he goes into a como-like state because the tumor pushes on his skull and the pain shuts his body down.


It is a blessing to know she has battled this for 3 years and I hope you are able to find the right answer. I wish my father could last 3years.

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