My Mom has a GBM

Roxanne Sparks · Posted: Tue Jan 16, 2007 10:45 am Post subject: My Mom has a GBM

My Mom was diagnosed the Monday after Thanksgiving with an inoperable GBM. I know things are going to get rough. I am an only child and my Father passed away July 2003 with cancer. Thankfully, I am able to take a leave of absence from work starting in a few days to take care of my Mom. She's doing well at this point. She has 2 wks of radiation left and is taking Temodar. I'm just not sure what to expect after the radation stops. We're planning a trip to Vegas in 3 weeks, since this is something she wants to do. Any advice you can give me about caring for my Mom will be greatly appreciated.
Roxanne

brunette · Posted: Tue Jan 16, 2007 11:10 am Post subject: Re: My Mom has a GBM

Hello, sorry to hear about your mum. Mine was diagnosed in August 2006 and also had radiotherapy.

I dont know how your mum will feel afterwards, but mine is so weak now that she can barely do anything for herself.

Im sure your doctor will tell you that once radiotherapy has finished your mum will probably be left feeling extremely fatigued, not just normal tiredness but very very exhausted. My mum was admited to hospital on Boxing Day, and shes still there. As you read the various posts on this forum, and gain more information you will build up an idea of what to expect, its not great.... sadly.

I wish you luck with your battle with this disease, its a truly terrible one. Love from Jen xxx

Roxanne Sparks · Posted: Tue Jan 16, 2007 1:22 pm Post subject: low blood count

We were just told that my Mom's blood count is too low and she cannot do radiation or chemo for the rest of the week. Is this normal? I'd like to know if there is anyone out there who could not have surgery, but is still living and doing well???
Worried,
Roxanne

andersonjw · New User Joined: 05 May 2006 Posts: 3

I'm so sorry to hear about your mother.

My mother was diagnosed last Easter, and got almost all the way through her Temodar treatments, before they had to stop them. From what I understand, Temodar is pretty hard on the blood cells, and that low counts is a typical side-effect.

It's tough to say what you will be able to do with your mother afterwards; it will depend on what the tumour is affecting. My mother had a partial re-section, and was fairly immobile afterwards, it affected her sense of balance, and the side effects robbed her of her energy and motor skills.

I hope that you enjoy the time you have with your mother and make the most of it.

Best wishes,
James

brainman · Posted: Tue Jan 16, 2007 8:27 pm Post subject: Re: low blood count

[quote="Roxanne Sparks"]We were just told that my Mom's blood count is too low and she cannot do radiation or chemo for the rest of the week. Is this normal? I'd like to know if there is anyone out there who could not have surgery, but is still living and doing well???
Worried,
Roxanne[/quote]

Roxanne, unfortunately, I do not have any good news for you. My mother died within 2 months of her diagnosis of GBM. Others might have more positive stories. However, the statistics are not good. What I can tell you is to help your mother enjoy whatever time she has left. The only difference between your mother and you or me is that she knows that she does not have long to live. The rest of us also have an uncertain future… we are just not as aware of it. Live one day at a time.

I will be praying and thinking about 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/

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Roxanne,
I am so sorry to hear about your mom. My dad's was inoperable as well. He had to stop treatment for a couple of days and then was able to finish the remainder. He was very weak afterwards and while we we thought we would be able to have a "finished with treatment" get together, he was much too tired to do anything for several days after the treatment.

I wish you the best and I hope we can be a suppport to you.

Michele
_________________
Michele

Roxanne Sparks · Posted: Wed Jan 17, 2007 11:16 am Post subject: Thank you

Thanks you guys for the words of encouragement. My Mom's tumor starts at the thalmus (spelling?) and goes down to the pons, close to the brain stem. This is why they can't do any type of surgery. I truly don't think my Mom has come to the realization that this is a terminal condition. She thinks that when she goes back for her MRI, following treatment, that the tumor will be gone. I don't know how she will handle finding out that it's not gone. Her neurologist has told me that it won't be gone, but I don't have the heart to bring her to reality.
Thank goodness for all of you!!!
Roxanne

sara pokrass · Posted: Wed Jan 17, 2007 6:45 pm Post subject: Re: My Mom has a GBM

Hi Roxanne,
I just joined this site. too. I'm taking care of my mother in law Doris who was diagnosed with glioblastoma of left frontal lobe by brain biopsy on
Nov. 30. She had had symptoms of peripheral vision loss for months
and had been going to eye doctors until she walked into the wall. MRI
was done which showed a tumor. Unfortunately it was also inoperable.
We had planned palliative radiation but she unexpectedly had a sudden
period of unresponsiveness lasting 12 hours. She came out of it but has been confused and not able to speak well since, so she went to terminal hospice care as a result because she has signed a living will not wanting
to have treatment if her quality of life had changed.She is in all other ways healthy (she was a health nut-never ate salt, sugar, fat, caffeine,
alcohol, tobacco, etc.). Her demise has been rapid. She is bedbound,
rouses to eat, but that's about it. The one thing as of yet is she doesn't
seem to have pain. She just sleeps most of the time.
This is an unusual journey for the cargivers for sure. sara
_________________
snep

Michele Walker · New User Joined: 17 Jan 2007 Posts: 4

Hi Roxanne, I can feel what you are going through. I recently lost my husband to GBM. He was diagnoised in August 2005 and passed away in November. His cancer was also inoperable. I wish I would have known about hospice sooner. It would have saved us many unnecessay trips to a doctor's office. The hospice staff was wonderful. My husband took the trip he wanted to take even though he was very weak. My local hospice put me in touch with another hospice in the town we were staying in. It was comforting to know there was someone close by if I needed them. They called daily to make sure we did not need anything. My daughter introduced me to this site http://www.brainhospice.com/ . It has some very useful information we wish we had available to us during my husband's illness, especially the symptom timeline. Will keep you in my thoughts and prayers.

Kris · Posted: Sat Jan 20, 2007 12:52 pm Post subject: Re: My Mom has a GBM

Dear Roxanne,

Similarly to Jim (Brainman,), my Mum also had inoperable GBM so she/we opted for palliative care - no radio, no chemo, only steroids and pain killers.
She had only 4 months to live from diagnosis, but her quality of life was really good for two beautiful months. Then we had one month with hospice care and the last one month in Hospital.

During those months I was as much with my Mum as I could, and we had the greatest discussions ever. I am so happy now that I could tell my Mum how proud I was to be her daughter. She passed away in Nov 06 knowing how much I loved her, accompanied by my endless love.

Be with your Mum the most of the time you can afford, and tell her everything, everything what you want her to know.

My prayers are with you,

Kris

Roxanne Sparks · Posted: Mon Jan 22, 2007 4:29 pm Post subject: Re: My Mom has a GBM

Hi all,
My Mom's blood count was too low again today, so no treatments. I started my leave of absense from work today. On one hand I'm thankful that I can spend this time with my Mom and on the other hand I'm going to miss my husband terribly. Anyway, we go again Thursday for blood work and hopefully her treatments will resume. She's been falling a lot over the weekend. She fell yesterday in my bathroom twice and again today on the front porch as we were leaving to go to the hospital. Luckily, two guys came running over from across the street and helped me get her up and into the car. She was down to 2 doses of decadron a day and now they want her to go back to 4. The doctor said either 1) the tumor has grown or 2) there's more swelling on her brain. It's been a rough few days, but I'm sure it's only going to get worse. I'm not sure what to do about the falling if it continues. Any suggestions?
Hope everyone is doing well and God Bless.
Roxanne

Michele Walker · New User Joined: 17 Jan 2007 Posts: 4

Hi Roxanne,
My husband had a GBM. The Decadron made his muscles very weak. He was on 10 mg 4 times a day. Without the Decadron, the swelling was worse and with it the falling increased until he had to get a walker and then a wheelchair. This disease can exhaust you. Be sure to take care of yourself so you continue to take care of your Mother. When it got too much for me, I called in hospice. They were wonderful. I always thought they were a last resort but they are not. They were very helpful. They drew blood at home and gave checkups so I did not have to take my husband to the doctor's office. I soon feared I would not be able to get him in and out of the vehicle or he would fall at some point. I will keep you in my thoughts and prayers.
Michele

Roxanne Sparks · Posted: Wed Jan 24, 2007 10:46 am Post subject: Mom is still falling

Hello,
My Mom fell again yesterday. She was sitting on a seat in the shower and fell over and hit her head. Luckily, it wasn't bad, but scared the hell out of me!!! I spoke with her neurologist yesterday and we've scheduled another MRI for the first week of February. I broke the news to my Mom that we can't travel until she stops falling. She's fine with it because I think she's scared she's going to break a bone or get seriously hurt by falling. I'm going to call an agency today and see about getting someone to come to the house a couple of times a week to help out. Has anyone heard of Xango/Mangosteen? It's supposed to rid the body of all toxins, including cancer. It's very expensive ($900 for a months supply), but we're willing to try anything!
Thanks for all of you,
Roxanne

brainman · Posted: Wed Jan 24, 2007 2:56 pm Post subject: Re: My Mom has a GBM

Roxanne, you and your mother are still in my thoughts and prayers. If you go to Baptist Hospital in Lexington, ask for Chaplain Gary Bennett. He is a personal friend of mine and he is a great guy to have around during a crisis.

I have heard about Xango Mangosteen juice but have no experience with it. You might want to post that questions on the Complementary and Alternative Medicine forum. Someone there might know more about it.
_________________
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/

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