What To Expect From Here.

Back at Christmas my grandmother went from being a very active women to a very un-energetic person just sitting on the couch.  She went to the cardiologist and it was determined that she needed to have a valve replacement surgery.  On the day of her surgery, the doctors decided to do an MRI since she was being so lethargic.  They found the tumor and had to cancel the surgery. 

 When they did the biopsy it was determined that she had a gliobalstoma.  In the last four months she has gone from traveling the world to not being able to walk herself to the bathroom.  Due to the fact that the tumor is too deep they have been unable to remove the tumor. 

 Due to the fact that I live out of state, I have not been able to see her as often as I would like.  I was shocked when I went back this weekend as she has deteriorated unbelievably in the last few weeks.  The last time that i saw her she was not very active, but she was able to get up and walk around the house if she wanted to.  This weekend she is using a walker/wheel chair to get around anywhere.  When I helped her home last night I practically had to carry her from the chair lift to the couch like I carry my children.  It just breaks my heart to see her this way.

 She is constantly falling asleep if you are not talking to her directly and going to sleep earlier and earlier (last night by 7:00).  She hardly has any use of her legs as she gets so tired after just a few steps even with the walker.  She has also recently starting having severe leg pain at night that is keeping her up even with the use of Vicadin. 

 Basically I am trying to figure out about how much longer and what to expect at the end.  It is not something that I look forward to watching her experience, but I was so shocked this weekend that I feel it would be better to know what to expect from this point forward.

 I will thank you all in advance for any assistance you can give me. 

First of all, let me say how sorry I am about your Grandmother.  I had no idea how devastating this disease is until someone close to me was similarly diagnosed.

 You might try www.brainhospice.com for information on what to expect.  The web page author, Diane Phillips, lost her father to this disease and has dedicated herself to informing others.

Good luck and good life.

I am sorry to hear of your grandmothers diagnosis. Even though it is inoperable, there are some treatments that are likely available to her. Has she discussed things like radiation or chemotherapy with her medical team? Is she currently taking decadron or any other medicine that directly relates to her GBM? These treatments and medicines may have a fatiguing effect on her. It is important, in my opinion, that even if therapies are not what your grandmother wishes, that she have access to a medical team so that they can help her control symptoms of this disease and to try and insure her comfort as it progresses. I wish you and your grandmother all the best.

Thank you both for responding.  She is taking Decadron as well as other pills (can't recall all the names off the top of my head).  She does seem to have a great group of doctors.  Luckily my mother has been in the medical field for over 25 years and has gone to almost every appointment and test that has been done and is able to ask the right questions and make sure that the doctors are doing everything possible for her.

As far as the radiation and chemo therapy are concerned, she did do 4 weeks of radiation therapy and we are waiting for the results of the MRI which she had done this morning.  However, due to her heart condition she is unable to withstand the effects of chemo.  It does not appear that the radiation has helped as she has deteriorated so significantly over the last month.

 

Keep in mind that Radiation continues to work for a long time beyond the actual treatment, and the side effects from it also continue to be a hurdle for some time after. My wife experienced a lot of fatigue and really only recently seems like herself again, some 9 months after the radiation treatments, that is when she is not taking Temodar which also fatigues her for a few weeks out of the month. So, its possible that your grandmother will still benefit further from the radiation treatments as time passes. I know this transformation in her must be very difficult for you to deal with, this journey is not pleasant for anyone involved, the best we can do is keep a positive outlook in the face of such trials and do all we can to keep our loved ones comfortable and safe. All the best to you both.