Stage 4 GBM - what should be reported to doctor?

kainoa · New User Joined: 29 Oct 2007 Posts: 3

My mother-in-law received a diagosis three weeks ago of GBMIV - and was told it is inoperable due to its location and depth. The tumor was 2cm. Can someone tell me if that is considered a large tumor, small? She lives far from us, so we are not there to see her each day. (my husband of course went to see her right after we found out the news). She began radiation and chemotherapy last Wednesday. I wish someone could explain to me what kinds of questions we should be asking when we speak to her each day - I think things are happening that maybe she and my FIL are not reporting to the doctor because they don't know that it might be important. Such as short term memory loss. Having to go to the bathroom a lot through the night. She lost use of her left hand and can't walk without help. They told her she would maybe live 3 months without treatment, and with treatment hope to extend that as much as possible. It's hard being so far away, I want to know all about this disease. I read something on a hospice site that describes what to look for in the last 3-6 weeks of a patient's life - my MIL is experiencing many of those things already so I need to know if the treatment can reverse some of those things?

Thanks for any help, any and all info is so appreciated.

K

brainman

kainoa, I am very sorry about your mother-in-law's cancer. My mother died of a GBM grade IV over 9 years ago... less than 2 months after first diagnosis. She opted for no treatment but her tumor was very large. 2cm is less than 1 inch and in most cases is thought of as "small." However, in the brain it really depends where it is located. In order to get clear margins, the surgeon would have to remove a much larger piece of her brain. By the nature of a GBM, it is not like a solid mass but more like a fuzz ball with little threads going out in all directions. Any of those threads left behind can be a source of a recurrence.

The list of questions you should ask also depends on the location of the tumor. Her short-term memory may or may not be an issue. But the left hand weakness and difficulty walking is an issue for sure. I would talk with your FIL or someone who is with her daily to get a third-party's opinion on how she is really doing. My mother lost vision in her left eye but she did not even notice it. Others around her did notice. I was eating supper with her one night. I was sitting to her left and my father to her right. She told my father to call me to come before the food got cold. I spoke and she turned her head and then she could see me. It is thinks like that that are so unpredictable that only an observer might be aware of.

I will be thinking about and praying for you and your mother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kainoa · New User Joined: 29 Oct 2007 Posts: 3

Jim, thanks very much for your prompt reply as well as kind words. It is so good of you to be here on this forum to assist those of us who are going through what you have already experienced.

As I said, the most challenging thing for me and my husband is our distance right now. I know my MIL has good days and not so good with respect to her outlook, attitude, mood, etc. I want to help her have as many good days as possible. She has 7 children, my dh is the oldest and everyone is sort of looking to him (us) for guidance. We believe strongly in life after death, so although the prospect of having to say goodbye is very very sad, we know it is just a parting and that we will see each other again one day. Even so, my goal is to try to help everyone see that every day, hour, minute counts and so we have to be vigilant about her condition. She is sort of in the denial phase right now, still believing in a miracle, not really paying attention to her treatment (she is taking medication/therapy and following instructions, but passively, not actively, if that makes sense). Her talking about miracles troubles some of her children, but in a way, I think it is more positive than being totally depressed. Can you remember anything that helped your mom in her last weeks/days? What sorts of things really made a difference?

Thank you, and anyone else who cares to share their thoughts....

brainman

Hi kainoa,

As I often tell others, if my prognosis had been correct, I would have died at least 5 years ago. Although the odds of surviving more than a couple of years is very slim, there are people who do survive. I do not want to give you any false hope. My cancer was only a grade II so my odds where much better than for your mother. But a prognosis is just a statistical probability. Some live longer. I did ask for my prognosis and did my own research about it but just to have some idea in order to prioritize the things I still wanted to do. However, after that I basically set aside my prognosis and started doing those priority things.

My parts had 5 children. When my mother became ill, none of us lived closer than 3 hours away. Since her brain cancer came after mine, I knew how serious it was from the moment I saw her first MRI. I knew before the doctor even told her that it was inoperable and would lead very quickly to her death. However, she is the one who made the "no treatment" decision. During the following 2 months, I spent as much time with her as I possibly could. I suggest that your husband go see his mother as soon as possible. There is really know way of telling how long she was.

The signs that your MIL has days rather than weeks to live are:

1. Sleeping more and more
2. Not eating or drinking much
3. Difficulty breathing
4. Significant change in blood pressure and/or heart rate

My mother died peacefully in her sleep... just the kind of death we all wish for ourselves. That is the only blessing of this cursed cancer; most people do experience a peaceful death.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

hello Kiona~ So sorry to hear of your moms diagnosis.
I agree with what the other said. See her as much as you can!! Their health can change very quickly. My Dad had GBM IV. One day he woke up and could'nt talk anymore. So you'll just have to see how things go. I't a very difficult journey. Lot's of support here on this board if you need to talk.
Take care.
{{{{{{{hugs}}}}}}} and lots of prayers!!
_________________
Kevan

Dad diagnosed GBM IV Nov. 1995.
Passed away Dec. 31 1996.
64 YO

kainoa · New User Joined: 29 Oct 2007 Posts: 3

Kevan, Jim, thank you.

We are all flying out to the West to visit with Mom next week. My husband (her eldest son) has been out twice already, and she said it was calming to have him there. Each of her 7 kids are taking turns flying in to visit - two sons live near her, the rest are far away. I think the hard part is waiting, wondering if her body will respond to the therapy. It has only been three weeks since her confirmed diagnosis. One other thing, I have spoken with a woman who is very knowledgeable about dealing with cancer - she is in remission herself from a rare stomach cancer. She told me that one of the most helpful things for her to get through the treatment phase was to be diverted - into positive and meaningful things to do while her body was working through the treatment. Can anyone suggest ideas for this? She suggested having someone record mom's life story, ask her questions about her youth, life, what she loves, etc.

Thanks again...

brainman

Recording her story is a great idea!! That way, her descendants will have a recorded of her life's story. Ask open ended questions like: "What was your life like when you where a teenager?" or more targeted and speculative questions like: "If you could change one thing about your past, what would you change?" I have a book that my kids gave to me last Christmas called "A Father's Legacy: Your Life Story in Your Own Words." It is filled with questions and space for me to answer them. You might want to get one to use as a guide to other questions. I would also suggest that you digitally videotape her telling her story. That way, it will be easier for you to make copies for your large family Wink

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat

Hi Kainoa,
Just wanted to say how sorry I am to hear about your MIL's diagnosis. Your family must be reeling from this terrible news!
Can you say why this tumour is inoperable? Is it because of it's position or some other reason?
My Bro was diagnosed in Feb 07 with a GBM IV & told it was inoperable. He has had 2 surgeries since then to debulk tumour as it was causing many serious defects. The tumour is on his brain stem; R frontal lobe.
He started chemo & radiation almost straight away but the radiation was stopped after 4.5wks as the tumour was growing aggressively whilst having treatment & he was having seizures & L sided weakness in his leg & arm. Untimately, since surgery in May he has been left with a severe deficit on his L side & has been unable to walk or function with L side since. He is still with us though & has an incredible fighting spirit, a fantastic & wicked sense of humour & most importantly faith in our God!
He told me yesterday if it grows back again he will have surgery again to debulk.
I tell you this as I wonder why your MIL can't have tumour debulked with surgery? This will almost definitely buy some time. My Bro's tumour was .5mm at diagnosis in Feb, much smaller than your MIL.
I pray you will continue to be an advocate for your MIL, it's a rocky road this one, no doubt. I will keep you & yours in my thoughts & prayers.
Welcome to this forum too. This forum has been an invaluable resource for me in coping with my Bro's illness. We are like a large community here, lots of support, advice, information & loving & caring people.
Cheers, Aussie Angie.
PS Recording her story is a wonderful idea & I just might poach this idea for my Bro!
PPS MIRACLES DO HAPPEN!
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

jenugl

Hi kainoa, I'm so sorry to hear that your MIL has been struck down with GBMIV. My partner was diagnosed with it in May 06. His tumour was 4cm but they managed to completely remove it - it was positioned on his right temporal lobe. He is still showing no signs of tumour recurrence after surgery, radiotherapy and chemo. I feel sorry for you being so far away, there is nothing worse than not being able to be there when loved ones are sick. Jim's suggestion to video is a great idea. Since my partners diagnosis I have bought a video camera and use it constantly. I hope that your MIL treatment helps to some extent. Hope your visit goes well and that you enjoy the time together even in such a terrrible circumstance. My thoughts, prayers and support are with you and your family. Love to all. Jen.

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