Although most said they'd let their physician know if asked, survey finds
by kc9136 on Fri Apr 16, 2010 04:23 PM
I haven't posted in a long while. My mom was diagnosed with GBM in Nov. 2008. She had surgery/radiation, Temodar and MRI's every 3 months. She had tumor recurrence in February of this year and started Avastin/CPT11. It seems as if she is slowly slipping away. I don't know if it is the tumor or the chemo but she is so weak & confused and her speech has dwindled to almost nothing. We go for the first MRI on Mon. since she began Avastin. I hope for good results but if it is not the tumor causing the decline, then it has to be the chemo. What about quality of life? How do we choose? My mom has always been so full of life, outgoing, always smiling, the life of the party. Now, well - sadness, drained of any hope of beating this thing. Thanks to all of you who pour out your hearts to this web site. It is so comforting to know that we are not alone in this horrible battle.
by heart_and_soul on Fri Apr 16, 2010 05:47 PM
Kristy, I'm so sorry to hear about this... it is super scary. You'll know more after the MRI. You said 'if not the tumor then it has to be the chemo' but it could also be radiation... the delayed side-effects. As I understand it, they can include mood, energy, intelligence, and every function from the neck down.
Just love her to smithereens the whole weekend. Life is very fragile but love is strong. : )
by saw10128 on Fri Apr 16, 2010 06:03 PM
I know the terrible empty feeling you have as you look at your mother and wonder what happened to the lively person you once knew. Sometimes getting the MRI result is even more confusing, especially when they tell you there is no progression and you wonder what is causing all of her symptoms. I am convinced that a majority of people's symptoms is causedby the radiation, because it destroys so much of the healthy brain while trying to target the tumor. Never give up hope, she will probably have days again that she shows some improvement, although it is only relative, it makes you feel better!
by cep123 on Fri Apr 16, 2010 06:30 PM
Itis so very emotional seeing the change over time and riding the rollercoaster of improvement then decline ...maintaining hope is hard and some days are better than others...Even though I am new to this journey,I wondered where your mom was as far as steroids? Maybe a topic you could revisit with the doctors?
Stay strong but remember we all have our weak hopeless moments and it is OK!!! Ten strength and hope return and we continue the good fight...
Hugs to you...
by gleassu on Fri Apr 16, 2010 07:33 PM
I wonder, how old is your mom? We just lost my mother to the beast on March 15th this year. She was diagnosed in November 2009, had surgery on December 8, 2009. Started Temodar, radiation, and Avastin on January 11, 2010. She never even made through a full four weeks of treatment. She started to decline rapidly in her fourth week. An MRI showed nothing because the Avastin kind of alters the reading on the MRI. She spent the last two weeks of February in the hospital with them trying to identify what was going on. She lost her ability to eat by herself, couldn't walk and seemed lost, really not with it at all.
I'm so sincerely sorry that you are going through a similar situation. Keep the faith and keep on the doctors to give you ANSWERS. Be aggressive and ask a million questions. Keep yourself informed and keep a log of your discussions with the doctors.
Best of luck to you and your mom and the family.
Daughter of JoAnne 12/14/29 - 3/15/10
by kc9136 on Fri Apr 16, 2010 07:37 PM
Thanks for your reply. My mom is taking decadron. She started back on it when she began Avastin in Feb. The doctors said that it is part of the chemo treatment. They give her the steroid via IV just before the Avastin infusion. Then she also takes the steroid 2 times daily. I have asked about taking her off of them but they say she needs them with the Avastin. You're right, it is an emotional roller coaster. I try so hard to "look at the bright side", but I still am angry that this has taken over her life. Thanks for listening. Kristy
by kc9136 on Sat Apr 17, 2010 01:46 AM
My mom will be 68 on July 4th. It sounds like your mom hardly got started with the battle. I'm sorry. This tumor really is a beast. My mom really did well to start with. She had some speech deficits but that improved somewhat over time. Her speech was never 100% but she got to where she could eventually say what she wanted. Now she doesn't talk much at all. I think it is too frustrating for her. She is having trouble with incontinence and she is noticeably weaker on her right side. She still smiles and laughs at all my jokes and she is still so beautiful to me. I want so much for them to find a cure for this beast so I can have my mom back. Thanks again for listening. Kristy
by kc9136 on Sat Apr 17, 2010 01:56 AM
Thanks Sarah for your reply. I love to read your responses. It sounds like you've done a lot of research. I WILL love her to smithereens. This has been a hard reminder of how short and fragile life really is. We're not guaranteed tomorrow so we have to make today count.
by rcassick on Sat Apr 17, 2010 11:12 AM
Speaking from the standpoint a person that has the GBM, (diagnosed for 6 months now) your head goes through so much, and so many emotions... My GBM was declared inoperable because of the depth and location (left side deep at the edge of the spinal column\brain junction)
I was completely UP during the initial discovery and Chemo (Temodar)\Radiation thing. No depression, all hope and no problems. I hit my quite period afterwards, was taken of the steroids (slowly) and ended up into a bit of a funk where all of a sudden stuff started to look really gloomy. Then after 2 rounds of Chemo they came to me and said, looks like even though you were declared inoperable at first we think we should 'go on in' and pull this thing from you anyway. Possible 20% deficit in short term memory and potential speech issues.
Then after 2 weeks of more scans to prep for that action, on the day they were going to do the pre-op admission physical they flipped and said we think we are really seeing is your brain fighting back and want to give that a more of a chance. Back on the steroids to help the mood (seems to have worked), still on my regular Temodar cycle (now 3 times what I was getting during the initial treatment) and I am now also on IV Avastin.
I have been lucky with the chemo so far in that I don't appear to be having side effects from it, but not everyone is that way. I am amazed that they apparently can't seem to understand in these cases where the deficits are coming from, but the brain is a complicated thing. To be honest they admitted that they could not tell me why I apparently have no issues with speech\memory just simply because of where my tumor is located right now. Not everyone is internally wired the same in every case. I was considering requesting to get some kind of function scan to help me determine what my brain does where so if things int he future come up we can more accurately plan, but I have not gone that route yet and not sure if the insurance would cover the 'request'.
My point here? Sudden mood changes can be the result of so many things, start looking around. It could be the drugs, it could be the tumor, it could simply be that she is feeling so overwhelmed by all of it that she simply feels 'why talk about it?. To be honest I get that way sometimes. Talking just feels so darn pointless at times. Its not going to fix it. Its not going to make it go away. Sometimes personally talking makes ME feel weak because if I can't handle it on my own then I must be weak - a guy thing I've been told - and sometimes I just don't want to talk because when I start it brings emotions that I just don't want to deal with. Then sometimes I WANT to talk about it and people have a hard time dealing with me. So I keep a journal :)
One thing that ALWAYS seems to get me, and I think a lot of people, even some that don't admit it, is that this thing has no cure. Sure, there are people that survive 5 years, I have heard even longer, but in the end there is no cure. I was always a pragmatist. I KNEW I was going to expire someday. I knew that at any time I could get hit by a car and be gone tomorrow, or live to be 100 or more. For some reason, getting the cancer really confused me with regards to this. In reality it did very little to alter the reality of my life span. I have no idea if I will still get hit by that car, or if I will be a lucky one and for some reason I will get passed the tumor (treatment or a cure will be found, etc...) nothing really changed, but I still had a mental hurdle that I am not sure I am ever going to get over about this aspect. I guess it is just a mental change in persepctive that comes along with the words 'incurable'. To be honest, at this point I am not sure if my head would really trust anyone that said we found the cure, take this shot, and a full year of scans showed no more tumor. Just a mental thing I guess.
Sorry for the long interjection... Just trying to help you understand it from one more perspective. Just don't feel alone. People are here to help. I know that words can sometimes feel insignificant, heck, even sometimes a hug just does not seem to do it for me. But you are right, you are not alone. Reach out when you need to.
by I_love_Gary on Sat Apr 17, 2010 04:57 PM
Well rcassick, that is beautiful, and best of all, enlightening. You have given me some real insight to my husband's feelings. It is the 'guy thing' that I find most confusing. Why won't he talk about it? Why does he not want to know his prognosis? Why does he act like there is nothing wrong? Well, I was accepting it, but now I think I also understand it. Thanks.
Sending all my hope your way, for stability and cure! DL
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