What to expect next?

Angie205 · New User Joined: 25 Nov 2007 Posts: 6 Location: Wisconsin

Hi all,

I am new to the site and in desperate need of support and guidance.

My mom is 69 and diagnosed with a Stage IV GMB Sept 1st. She had a cluster of three tumors. (1cm, 2 cm, and 3+ cm). The largest was debulked to about half the size. Radiation followed, but we quit with three days to go because Mom was sick in the hospital with pnemonia/bronchitis. Temodor was taken for only a week as Mom's blood counts were too low.

Here's the deal. Mom has had a great attitude and understands this is the end. She has never asked how long and the doctors have never given me much of a guideline either. They said 6-9 months for a recurrence of growth, but I don't believe it.

The steroids have been so hard on Mom she has trouble getting out of her chair and can only do a few steps if there is a sturdy guard rail. She has come down with steroid induced diabetes and has to give herself 4 shots of insulin a day. Her vision is fuzzy and her memory not great. She was so beat down by the treatments and meds that she ended up in the hospital in pretty bad shape. She's had three rounds of antibiodics and is finally getting strength back. The steroids are being tapered off from 6 mg a day down to 2 mg a day.

Latest problem as of the day before Thanksgiving, Mom has been having delusional moments. She tells us things that have happened that are total falsehoods. She has never lied a day in her life and she fully believes these things are happening. Anyway, the docs said to increase her steroids because the swelling must be causing problems.

Here is my question. Do you think it's tumor regrowth?

Her surgery was 2 1/2 months ago. Do you think upping the steroids will make her more mentally sound?

With all her complications do you think this means a much abbreviated timeline? Any examples from anyone?

When it comes to all the signs of dying, she's been having a lot of them since she was diagnosed, so I don't know if that is the best indicator.

I look forward to hearing from people and thanks for being here.

Angie

brainman · Posted: Mon Nov 26, 2007 5:19 pm Post subject: Re: What to expect next?

Hi Angie. I am very sorry about your mother's diagnosis. My mother also had a GBM Grade IV. She died a little over 9 years ago only two month after her diagnosis. But she opted not to have any treatments and surgery was out of the question because the tumor was so large. She died peacefully on Sunday morning with my father and I by her side. She was almost 75 at the time and never really had any loss in terms of memory or personality changes.

I also have a glioma but it is a Grade III. You can read most of my story at the link in my signature block.

As for your mother's situation... it could be regrowth. The only way to know for sure is by having an MRI done. The steroid can help reduce the swelling that is causing the disorientation be not 100%. In other words, steroids are not a form of chemotherapy... just palliative care to try to help with your mother's quality of life. Is hospice involved in her care? If not, you might want to ask her medical team to order it. Hospices are a wonderful source for first hand information and support.

I am sorry but I do not have an answer to your question about "timeline." It does sound like her condition is getting worse but whether it is to be expected so soon after debulking, I really do not know. I do not know what to expect tomorrow for myself. I just try to do today what I can in order to the do the things that I want to do with the remaining days/months/years of life that I have.

Angie, you and your mother are in my thoughts and prayers.
_________________
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/

Angie205 · New User Joined: 25 Nov 2007 Posts: 6 Location: Wisconsin

Thanks Jim.

Today Mom's doctor raised her steroids from 4mg a day to 8 mg a day. We are all hoping this helps bring Mom more clarity. However we are finding that having delusional moments didn't bother her much. It upsets the rest of us more. I guess it's a lesson for me to relax and let go of control more.

The down side is that Mom has a lot of problems with steroid side effects. Diabetes, swelling of her legs and feet, weakness in her hips that prevent her from doing steps, etc.

I'm sorry to hear about your mother. Two months is very quick. I understand her desire not to get treatment. If we could do things over, I would not recommend the radiation and chemo for my mom. It has drastically weakened her and caused some bad side effects. She has been coughing and hacking for an entire month now due to pnemonia or bronchitis. The doctors don't know which.

The surgery went very well and we asked the doctor to be very careful about avoiding her speech area. Mom preferred the ability to speak over a few more weeks with none. The surgeon was great. However, he was only able to debulk the largest tumor by about half in order to not jeopardize her speech.

Hospice was called about two weeks ago. Not because Mom is in the end stages of dying, quite the contrary, she is extremely mobile and busy. We called them in because navigating the health care system and all the different doctors, appointments, medications, insurance, etc. was overwhelming. The idea of centralized care and having our own team following Mom's progress was what we needed. Already they have saved me so much time and headache. They know what to do and who to call and offer to do so much. I love them already.

This is getting long so I'll wind it up. Mom finally is getting another MRI on Dec 4th. Considering all her side effects, I don't have a good feeling about this, but I'll stay tuned in here with more questions I'm sure.

I'm sorry to hear about your return tumors. You are very strong person and I wish you continued success and strength in your battle ahead. Thanks for being here to help guide others.

Angie
Mom, 69, has stage IV GBM, diagnosed Sept 2, 2007

brainman · Posted: Mon Nov 26, 2007 11:18 pm Post subject: Re: What to expect next?

When I was in training to be a hospital Chaplain, one of my many assignments was the psychiatric unit. I know the psychotic delusions and delusions caused by a cancer are totally different things. However, I would thing one thing would still be the same: you and your family are real. You are not a part of your mother delusions. Your hugs are real; your kisses are real; your love for her is real. Grounding her in that reality is the best thing you can do for her. Like I had to do with my mother: "Look to your left Mom and you will see him standing beside you."
_________________
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/

In · Posted: Tue Nov 27, 2007 3:20 am Post subject: Re: What to expect next?

Angie205,

Hi, I don't know much about Brain Cancer, but i know the sad mental problems come with it. Also the frustration, anger and emotional devistation. Especially if their personalitie changes for the worse. Sad

I'd like you to know that i'm thinking of you, and your Family.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

ksplat · Posted: Tue Nov 27, 2007 6:20 pm Post subject: Re: What to expect next?

Dear Angie,
So sorry to hear about your Mom! My Bro is on the same "journey" at the mo.
I remember earlier on when the tumour was first diagnosed he started having seizures fairly quickly & regularly, they began steroids & the symptoms eased, so I hope your Mom's behaviour changes, with her steroid medication. I know from reading different posts the majority of sufferer's symptoms are relieved from this drug, although there are the nasty side effects to deal with as well. Sorry to hear about the diabetes, I have this too - Type 1 - & have suffered from this for the past 25yrs. Daily injections & BSL tests are the major drawbacks, I'm sure this is one of the easier things for your Mom to cope with though.
My Bro has had 2 resections done this year-in May & Oct. His surgeon, too was very careful in removing as much as he could because my Bro didn't want to be left "a dribbling mess" after surgery!
His first resection has left him disabled on the L side (he has a R Frontal Lobe tumour on his brain stem) & he has been in a wheelchair since May. The 2nd surgery in Oct has left him with no deficits & although he was initially told at dx in Feb 07 that the tumour was inoperable (brain stem tumour too hard to operate on) the 2 resections have given him more time. He says if the tumour grows back he will have surgery again to debulk. His next MRI is on 12 Dec.
Glad to hear you have enlisted Hospice assitance, this will make your lives so much more bearable.
My Bro started radiation in Mar 07 but didn't finish the 6 wk treatment. It was stopped after 4.5 wks as Mark suffered badly & the tumour continued to grow rapidly whilst doing radiation. He has taken Temodal since dx, initally every day for months & then on a 4 week cycle (5 days on 23 off) in the latter part of this year.
There is lots of hope for him, as he is still with us & we look forward to a huge family Christmas with all of us celebrating together. My Bro has just taken a vacation with his wife to Hawaii for 10 days. Although the long hours in his wheelchair took its toll, they had been planning a vacation since dx in Feb & have finally been able to do it.

Answers to your questions:
It could be regrowth but it's hard to say unless your Mom has an MRI.
As I mentioned earlier increasing steroids helped my Bro, although his memory & sight has been effected slightly from the tumour.
Your Mum's blurred vision could well be a side effect of high Blood Sugar levels. This has happened to me periodically over the years I have had diabetes.
As for the timeline for your Mom. Ask the Drs. They should have an idea. My Bro was told 12mths survival with a GBMIV but I know he plans to prove them wrong, & I've read plenty of positive stories on this forum.

Thinking of you & yours, prayers & positive thoughts.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Angie205 · New User Joined: 25 Nov 2007 Posts: 6 Location: Wisconsin

Hi Aussie Angie,

Thanks for the info on your brother. The one thing I have heard time and time again is that age is a major factor in survival. Your brother is young and strong and wish him the absolute best.

I agree that surgery seems to be a really good choice for a lot of people in controlling the tumor. None of the other treatments are working for my Mom so I would consider surgery again to buy her more time. However, the risks of surgery are also great so I'm not sure what route she will go when the time comes.

We too have planned a trip to Hawaii with Mom. We were suppose to be there over Thanksgiving, but all her side effects, diabetes, pnemonia, constant cough, etc. kept her from going. It is rescheduled for Dec. 31st. Mom's three kids and our families. I pray it happens. She has never been there and really wants to go. Unfortunately she keeps confusing the dates and thinks its sooner.

The diabetes hasn't been a big problem. My husband is Type one diabetic and has been for 15 years so Mom is very educated on the subject. At least that was a big scary thing.

Your brother sounds great. You guys have a great holiday celebration!

Angie
Wisconsin

Mom, 69, GBMIV, diagnosed Sep 2, 2007

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