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What to expect next ?

Gayle Schaffner
Posts: 4
Joined: Nov 2009

My mother is 73 years old and was diagnosed with GBM 4 in June 09. The tumor is not operable. Her doctors told us she would have 6 to 18 months. We started the radiation and chemo on July 6th. She had 7 weeks of radiation and started the temador at the same time. She has been also been taking steroids since her diagnosis, which are awful. We had to stop the temador rather quickly because her platelettes were so low and she had to have 6 transfusions to get them back to where they should be. After the radiation ended she really went down hill very quickly. She can not get out of bed and we have had to have hospice come in everyday. My sisters and I care for her round the clock. Her appetite is getting a little less now and she sleeps a lot. She doesn't communicate very much and doesn't seem to be in any pain or discomfort. She is very confused and doesn't seem to know or care what is happening around her. There are small changes in her all the time now. She has always been so active and smart and it's so hard to see her like this. There is no dignity with this disease. I would really like to know if anyone can tell me what to expect next.

onlyhuman
Posts: 102
Joined: Sep 2009

Hi
My husband (50 yrs old) was diagnosed with GBM4 in Mar 09. He had a resection and 6 months of temodar. The latest scan however shows a recurrence in the old site and several new growths. Over the last 2 weeks or so he has rapidly deteriorated and now has difficulty walking and talking. There is not much material about what to expect because different people have different experiences. The website www.brainhospice.com has a section called "stories from the trenches" that details several people's experience with GBM 4. That may help.
I wish you all the best.
Take care.
Sangeeta

vickie whitener
Posts: 6
Joined: Nov 2009

My husband was diagnosed in Feb, 09 with a golf-ball sized gbm grade. He had it resected and did all of the current treatments of chemo (temodar) and radiation. He has had an additional resection in 8/09 and from that developed a severe brain infection and sepsis. He has deteriorated very quickly. He has a large blood clot in his lung and is extremely weak. The most difficult thing to deal with currently is his total loss of reality. He doesn't know that he is at home, he doesn't sleep more than an hour or two at night. He gets very agitated and refuses to be comforted. He is beginning to talk about situation that are more like a horrible nightmare but to him they are absolutely real. He imagines that people are doing things to him and well...it just goes on and on. I don't know if this is common with all gbm, but it has become his most difficult symptom thus far. We have Hospice here now to help with his care and they are trying to get his medications adjusted so that he can at least sleep. The hardest thing is to see this darling, sweet man so tormented. I hate this thing that has taken away the man I have loved for more than 40 years. It is simply horrible to see. I am so sorry that you are facing this. I don't know how common my husband's symptoms are but I wanted to share them with you. As with your husband, he can no longer walk or do anything for himself. I am a truly so sorry.

Gayle Schaffner
Posts: 4
Joined: Nov 2009

Hi Vickie,
I am truly sorry for what you are going through. I have heard that agitation is common with gbm. My mother just sleeps all the time and nothing she says makes any sense at all. I think her vision may be going she barely opens her eyes anymore. Hospice has been coming in for the past 6 weeks and they are wonderful. We have a hospital bed at the house and we just try to keep her comfortable. Her breathing is labored lately and that very scary. It seems that her body is just slowly shutting down. It is very difficult to watch. I'm sorry your husband is so tormented that really breaks my heart. You only wish they have peace and you just don't know what they must be thinking. I wonder everyday what my mother is thinking or if she is thinking at all. Thank you so much for your reply and my thoughts and prayers are with you and your family.

MinersPark
Posts: 1
Joined: Jun 2009

My mother and I are in a very similar situation! She is 73 years old and was diagnosed with a GBM4 November 2008. The tumor is located in the right parietal side of her brain. Initially, we were told an operation would leave her in a wheel chair with no control of the left side of her body. Her quality of life was described as being so poor she began hospice. We found a neurosurgeon in Charlotte NC who stated he could get most of the tumor out with little affect to her quality of life. She had a brian resection the first week of December 2008. Most of her tumor was removed however it is fibros and had attached to an artery in her brain. After surgery, she returned home and led a fairly normal life. She completed radiation and was prescribed Temodar. The radiation was very harsh and the Temodar was not working. She was put on Avastin, The second chemo drug showed improvement in the reduction of her tumor, however after one year she is beginning to lose control of her left side. She also sleeps a lot and I believe her confusion is beginning to increase. She is in no pain related to the tumor, however she has incontinence problems and says she cannot feel if she needs to use the restroom. She fell this evening after using the restroom and seems to have overall weakness to her left side. She has been on steroids for a year now. It used to help immensely but now I fear it is doing more harm than good. I understand what you mean about this disease being absolutely awful. To watch her slowly fail and lose herself piece by piece is torture. I wish I had more answers for you, but I just don't know what will happen next! The imagination only makes it worse. I am sorry to hear about your mother. From one care giver to another, Hang In There!

Gayle Schaffner
Posts: 4
Joined: Nov 2009

Hi MinersPark
Thanks for your response. I am so sorry about your Mom. My mother had fallen a couple of times before she became completely unable to walk also, it's very scary. She has also been inconstant for several months which at first was more difficult for her then it was for us. She hated the idea of her adult daughters changing her. I feel the same way about the steroids but they tell us they keep the swelling in her brain down and without them we are afraid of seizures. My mother was given 1 treatment of Avastin but she went down hill so quickly we had no time for a second. Now we just try to keep her as comfortable as possible. Thank God there is no pain. She sleeps almost all the time and the last couple of days even when she is awake her eyes are closed. I think her vision may be going. There is no communication at all she just mumbles a lot. We do have Hospice come in now everyday and they are a blessing. You and your Mom are in my thoughts and prayers. Take care of yourself.

vickie whitener
Posts: 6
Joined: Nov 2009

Everyone who is going through or has gone through GBM knows what this awful monster can do! However, after 10 months of treatment, 3 surgeries, an enormous brain infection, gallbladder surgery, a blood clot the size of a tennis ball in his lung--my husband began a miraculous turn-around on Wednesday before Thanksgiving. He began to eat ( he had not eaten much in 5 weeks or more), showered, shaved and was able to have Thanksgiving dinner with our family in the dining room. The changes have been more than our surgeon and our hospice nurse could believe. His blood pressure, urine output and all of his vitals are excellent!! We are a family that totally believes in the power of prayer. Our church family and our friends prayed diligently and daily for his recovery. Well...today we are seeing a walking miracle! We have, over the last 3 weeks had dinner out with friends, gone back to church services that we love, spent time with our precious grandson and on and on it goes!!! No one who saw him a month ago believed that he would be with us on Thanksgiving. He has NOT taken any new medications, seen a doctor or changed anything at all in regards to his medical care. We have no idea or thought as to how long this will continue. All we know is that we had prepared ourselves to lose him and now we are preparing ourselves to enjoy a blessed Christmas. We are scheduled for another MRI on 1/11/10 with an appt with his surgeon on 1/14. We are just giddy with joy over this.

Gayle Schaffner
Posts: 4
Joined: Nov 2009

Hi Vickie,
That is truly wonderful news. I am so happy for you and your family. This gives me such hope for my Mom. She is not doing very well right now. She does now seem adgitated although she really can not communicate anything. She is taking morphine and sleeping a lot, she is eating less as well. We are just wondering what we should be preparing for next. I am so glad that your husband is doing so well that is a real miracle there is no other way to look at it. I pray everyday for the same. My best to you and your family. Have a wonderful holiday.

vickie whitener
Posts: 6
Joined: Nov 2009

Hi Gayle,
We are so happy to know that Christmas will be so special this year. I am so very, very sorry about your Mom. This is such an awful disease and going through this at this time of the year makes it even worse. Has your doctor prescribed Seroquel for your Mom's agitation? This is the only medicine that helped my husband with his. He also took Atavan for the anxiety. I understand that sleeping a great deal comes with this "monster" and I suppose that can be a blessing. Please know that your Mom has been added to our weekly prayer list at our church and, of course, you and your family. We are praying that God will extend His mercy and grace to all of you this beautiful season and throughout the next year. God bless you and a very Merry Christmas. Please take care.

vickie whitener
Posts: 6
Joined: Nov 2009

Our family would like to send to everyone a wish and prayer for a blessed and joyful holiday season. Anyone who still has the blessing of having their loved one with them this time of the year is truly blessed. We all know the anguish and heartache of GBM but to be able to still see and touch our loved ones is something that most of us did not think would be happening. We pray for each one on this discussion board and pray for the doctors that are treating them and for the researchers who are looking for our cure. God bless us everyone!

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