My mother has GBM and is totally bedridden

Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

Dear all,

Our mother's name is Vasanthi and we are presently in Bangalore, India. She is a GBM patient, 65 years old ( will be 66 this december ), currently totally bedridden, has very little mobility on bed, does not utter a word when we try talking to her, sleeps all the time, and needs to be pinched to be woken up from sleep. She looks dazed and does not maintain eye contact when we manage to wake her up and try conversing with her. We are not sure what is going on. I hope the sequence of events below will help you get an idea of on what we have been doing. We are not sure if there is anything more we can do to help her.

SEQUENCE OF EVENTS
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(1) In Dec 2007, she complains of vomiting and headache. We take her to a doctor who categorises it to be migraine.
(2) In Jan 2008, she continues to complain of vomiting and headaches in the mornings. She shows signs of memory loss ( cannot remember names of her children etc ). A CT Scan was done on 21st Jan 2008, and it revealed growth of tumor on the left temporal side.
(3) On Jan 23, 2008, she was operated and the entire tumor was removed. Biopsy report classified the tumor as anaplastic astrocytoma.
(4) She was given six weeks radiation with concomitant and adjuvant temozolomide ( for six months ). Concomitant temozolomide was 120 mg daily before radiation. The adjuvant temozolomide was 250 mg for five days in a month, and for six months. She completed her treatment in Nov 08 and was doing fine. She used to work as usual in the kitchen.
(5) On Feb 17, 2009 she visited the neurosurgeon who took her CT Scan and found that she was free from tumor recurrence. The neurosurgeon was very happy with her progress.
(6) On Feb 25, 2009 she complains of tiredness while getting up from bed. She gets up with difficulty, prepares coffee and breakfast in the kitchen, and then tells us all that she wants to take rest for a while. At 10 AM in the morning, she says she cannot get up from bed anymore on her own. She was taken to the hospital. Doctors had her CT scan taken again, but there was no sign of tumor recurrence. Doctors also advised a general checkup, like BP, sugar etc and found her perfectly normal. The only thing that was happening was that she was feeling very tired and could not get up on her own.
(7) On 26 Feb 09, she manages to get up and move around at home with someone holding her hand or giving support. Her memory was weakening. She showed signs of personality changes like fear etc. But her food intake was very good. She had no other problems other than the neurological difficulties mentioned.
(8) Between Feb 09 and April 09, she would move around at home with support from others. She had problems getting up on her own from bed most of the time. Sometimes, she would manage to get up on her own.
(9) On April 20th 09, at 5.30 AM she got up on her own from bed and tried to walk without support only to fall on the floor and bruise herself badly. There were injuries on her face and her mouth was bleeding. We took her to the hospital in an emergency van. The doctors checked her neurological function and ruled out seizure or paralysis. A CT scan was taken and there was no sign of tumor recurrence ( it seems they had some doubts on a lesion developing at the site where the previous surgery was done ). Occasionally, she would talk sensibly but all along, she complained of body weakiness. Her food intake and motion were normal. Her memory was failing and she could not remember her name too at the hospital. A psycologist examined her and concluded she could be suffering from dimentia. She was given aricep tablet. Her memory and conversation improved. We could see her converse sensibly.
But she was totally bedridden. From this date onwards, most of the time she needed help to get up from bed and walk around at home. We had a home nurse helping her. Infact her condition used to improve at times. She would be able to feed herself or walk a few steps without assistance. But everytime there was improvement, the following week, she would show signs of deterioration.
(10) In august 09, we would see her sleeping most of the time. She would have sound sleep ( snoring ) all through. She kept on saying she was feeling very tired. On august 25, 2009, she vomitted the breakfast and lunch we gave her. We suspected the tumor must have come back. We took her to the hospital and a CT scan was done. The scan revealed resurgence of the tumor in the left temporal area and this time it was larger than what the doctors had seen in Jan 2008. Operation was scheduled for her on 27th August 2009 and the entire tumor was removed. The biopsy report said it was Glioblastoma Multiforme (GBM).
(11) She was conversing reasonably well after the surgery, but the speech was occasionally slurred. She had temozolomide ( 250 mg ) for five days in the month of September. We had to take her to the hospital again because of vomiting. She was admitted into ICU. A CT scan was taken on 20th September and it did not show any tumor growth. But she looked dazed, rarely talked, had slurred speech, and we had to call her several times to get her attention. The CT scan however revealed that there was fluid collection in the brain. The doctors have tried shunt method to remove the fluid, but her condition remained the same even after removal of the fluid.
(12) It is over a month now since she has been in the ICU. She is on peg feeding. She rarely opens her eyes and sleeps all the time. She looks dazed, tired, desperate. She does not utter a word, needs to be pinched to have her open her eyes for a short while, and then goes to sleep again. I have not seen her maintaining eye contact when we try talking to her.
(13) We have decided to bring her back home and have a trained nurse look after her.

brainman

Vasanthi, I am so sorry about your mother's GBMIV. It is any brain cancer patient's worse nightmare to think about a AA progressing to a GBMIV is such a short time. My mother died just 2 months after her diagnosis but she was never diagnosed with a lower form of glioma; we had only a very brief time.

You and your mother are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
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Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

Thank you Sir. We have put Vasanthi on Ruta 6 ( Homeopathy ). Not sure how it is going to work.

jimssister · New User Joined: 23 Apr 2009 Posts: 7

I am so sorry for your mother's ordeal with this disease and the difficulties you and the rest of your family must deal with. My heart goes out to you. You and your mother are in my thoughts and prayers.
_________________
Stacie

Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

Thank you Stacie and all. Vasanthi continues to be in deep sleep 24x7. Not sure what is going on. Hope to see a miracle happen.

brainman

My mother slept more and more toward the end. Finally, she just did not wake up. Sad

.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

She continues to sleep with no response to external stimuli. We have lost hope that she will be back again, although we believe a miracle could happen anytime. The last I told her on 15th September ( The night before we took her to the ICU ) was " Mother, you will be alright. This disease takes longer to heal" to which she acknowledged positively with a "hmmm". I noticed that she was not able to talk but could sit properly on a chair, listen and understand. It was probably the onset of aphasia. She paid particular attention that evening to a song and dance that appeared on Television. That was it, and since then she responded only once last week at the ICU when my dad tried to wake her up with great difficulty.

sonia · New User Joined: 30 Mar 2009 Posts: 6

Hello, so sorry to read of your mother's status. I too am from India, and my mom (age 67) was diagnosed with GBM in January 2009. Her tumor is inoperable, and the biopsy has rendered her bedridden too. She's been in bed now since Jan 20th and even with physio hasn't been able to regain use of her right arm or leg. This disease sucks big time and I can empathise with all that you are your family is going through.

My mom fortunately is still quite alert & awake, she "zones" out while watching TV but loves doing so for a couple of hours each day. I hope your mom gets her miracle, and if you'd like to chat more, I'm here for you.

Good luck.

Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

Thank you Sonia and All. Our mother, Vasanthi Palanghat Odayoth, passed away this morning ( 27th Oct 2009 ) at 10.45 AM Indian Standard Time. Crying or Very sad

sonia · New User Joined: 30 Mar 2009 Posts: 6

I am so very sorry to read of your mother's passing. I know what you are going through as I am living it each day, watching my mother decline steadily but surely with each day / week. This is an awful disease, and the only saving grace is perhaps that your mother passed peacefully, while asleep.

My condolences to you and your family.

julie1974 · New User Joined: 08 Jan 2010 Posts: 1

my dad has just been diagnosed with gbm, he is 77 and first started showing unusual symptoms such as not making conversation, withdrawing from everyone( going into another room to be alone), not saying ours or grandchildrens names at the end of October 2009. We all urged him to go to the dr as he seemed as tho he was worrying about something but all he would say was "im fine". By mid November he was showing signs of confusion and lethargy, losing weight and only answering yes or no to questions. We finally got him to the dr's on 15th December and blood tests were taken which all came back clear on the 18th December. The dr suggested she would send him for a brain scan as his bloods were normal but something was making him confused. On the evening of 18th my dad was in the middle of standing and his legs buckled from under him, he could not move his legs, i could see the terror in his face as he couldnt speak. He was taken into A&E that evening and from then on deteriorated, he had a chest xray in A&E and was then admitted on to a stroke ward, we were not told anything and did not see a dr until after he had a ct scan on 22nd Dec (which showed swelling on the brain and an area of concern) we were not told what they thought it was and were left wondering what it could be. My dad was put on a high dose of dexamethasone to bring the swelling down before he had an MRI scan. He continued to deteriorate and the hospital did not seem to care or be able to tell us anything. He had an MRI scan on 29th Dec. We waited and waited, my dad became incontinent and could barely walk now, each time he got up his legs would buckle. We waited a week until the results of the MRI came through and were told there was nothing they could do as it was too deep into the brain, it was in the front part of his brain, they didnt know how long hed had it but it was untreatable and inoperable, they told us he had a matter of weeks left. It took 3 weeks for them to tell us that but managed to get him transfered out of their hospital and to a local hospital for pallative care the next morning where he could be made more comfortable for his final days/weeks. I am in shock . i am searching for answers and cant beleive how common this appears to be, i had never heard of it and was totally shocked to read that a brain tumor can have no symptoms at all untill it is too late.[/color]

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