Mum Loses Battle

Hi all,

 I'm sad to report that my mother finally lost her battle with the GBM on Tuesday 29th April, after a long and torturous 16 month battle with the disease.

 Although luckier than some on this board (she was 65 at time of death), I still feel she had 20 years of life stolen from her by this disease. Other than this illness she was in perfect physical and mental health, low cholesterol, low blood pressure, no serious illnesses ever, didn't drink, didn't smoke - you get the picture !

She did however suffer migraines throughout her life in pretty much the same place the GBM eventually struck. We wonder now if the migraines were indicating a general weakness in this area - could we have detected it earlier, possibly pre-malignancy ?? We'll never know I guess.

She collapsed on christmas night 2006, diagnosed a day later and debulked on the 29th December. She was given the standard 9 - 12 months to live prognosis, the family were all devastated.

She underwent radiotherapy, but couldn't take temodar concurrently as she went down with pneumonia during the radiotherapy. Despite this infection she managed to complete radiotherapy without missing a session. The radiotherapy seemed to help - delaying recurrence till early October 2007. The tumour regrew very aggressively 2nd time round, catchiing everyone by surprise. She was operated on for a 2nd time, all visible tumour removed. Gliadel wafers were also used this time.

We were delighted when she came home after the 2nd op, she seemed fine and the tumour operation was so successful it was barely visible on the MRI scan. Sadly it was all downhill from there. A week or so later she started sufferring agonising headaches and a large fluid filled cyst developed near the site of operation. The Gliadel wafers were blamed. Gradually she improved over the next couple of months, but mentally she had gone downhill and the cyst remained. She finally starting temodar but only completed 3 full rounds. The tumour remained fairly stable and insignificant throughout.

6 weeks ago the doctors finally decided to operate, to seal the gap which was apparently to blame for causing the cyst. They carried out the operation but it failed - the cyst quickly refilled and the valve they had inserted failed to stop it. They operated again this time putting in a shunt to drain the liquid away. This failed also.

My mum never recovered from these operations. She went further downhill mentally and now could no longer walk or talk properly. She was bedbound. She developed pneumonia and we thought at this stage she was going to die, but she recovered and fought off the infection. She was still bedbound and largely unconscious though.

We transferrred to a hospice 10 days ago, which was a wonderfully peaceful place. The staff were fantastic and looked after mum in a way the hospital were unable to.

Although mum opened her eyes (they remained open right up to the end), her breathing gradually became shallower. Finally on Tuesday, the breathing slowed and eventually stopped. She had died. It was such a peaceful end, she sufferred no pain or physical distress, just drifted off to sleep.

Its ironic that the treatment we were counting on to beat the GBM, actually hastened her death in the end. A timely reminder I guess of the toxicity of the treatment for this condition and the sensitivity of the area its treating. I would strongly urge relatives of patients with this condition to stop and think about the benefits of further treatment, if the patient is showing signs of signficant mental decline.

My mum was a truly wonderful person. Not once during the 16 months did she whinge or complain about her condition. She lost the ability to make decisions about herself and became almost childlike at times - especially after the radiotherapy. She remained wonderful company throughout though and maintained a great sense of humour. She will be greatly missed by the whole family.

 Best wishes and luck to everyone affected by and fighting this disease.

 Dan

Dan,

I would like to send you and the rest of your family our deepest sympathy at the  terrible loss of your mum, reading your post I could clearly see your mum was a very special person, thanks for sharing that insight, I pray that God would somehow grant you comfort and healing in the weeks, months and years ahead, mums are very precious people and we never really get over the loss of them.

I am not sure if your interested but I was talking to someone else recently who had lost their mum, I put in some ideas about creating a memory box, don’t know if this might help you or other family members, but worth you having a read if you ever get the time.

Take care

Michaela

http://www.cancercompass.com/message-board/message/all,23133

Dan,

I feel your pain, I know exactly what you are going through and I am very sorry for your loss. I went through the same thing with my father who passed away last November. I still check the posts every day and it angers me so much when I see a new member. It is just sooooooo sad, because we know what is ahead for them. Stay strong, they say time will heal !!!!!! I guess to a certain degree it does,but the void will never go away.

Joe

On 5/1/2008 Danielw wrote:

Hi all,

 I'm sad to report that my mother finally lost her battle with the GBM on Tuesday 29th April, after a long and torturous 16 month battle with the disease.

 Although luckier than some on this board (she was 65 at time of death), I still feel she had 20 years of life stolen from her by this disease. Other than this illness she was in perfect physical and mental health, low cholesterol, low blood pressure, no serious illnesses ever, didn't drink, didn't smoke - you get the picture !

She did however suffer migraines throughout her life in pretty much the same place the GBM eventually struck. We wonder now if the migraines were indicating a general weakness in this area - could we have detected it earlier, possibly pre-malignancy ?? We'll never know I guess.

She collapsed on christmas night 2006, diagnosed a day later and debulked on the 29th December. She was given the standard 9 - 12 months to live prognosis, the family were all devastated.

She underwent radiotherapy, but couldn't take temodar concurrently as she went down with pneumonia during the radiotherapy. Despite this infection she managed to complete radiotherapy without missing a session. The radiotherapy seemed to help - delaying recurrence till early October 2007. The tumour regrew very aggressively 2nd time round, catchiing everyone by surprise. She was operated on for a 2nd time, all visible tumour removed. Gliadel wafers were also used this time.

We were delighted when she came home after the 2nd op, she seemed fine and the tumour operation was so successful it was barely visible on the MRI scan. Sadly it was all downhill from there. A week or so later she started sufferring agonising headaches and a large fluid filled cyst developed near the site of operation. The Gliadel wafers were blamed. Gradually she improved over the next couple of months, but mentally she had gone downhill and the cyst remained. She finally starting temodar but only completed 3 full rounds. The tumour remained fairly stable and insignificant throughout.

6 weeks ago the doctors finally decided to operate, to seal the gap which was apparently to blame for causing the cyst. They carried out the operation but it failed - the cyst quickly refilled and the valve they had inserted failed to stop it. They operated again this time putting in a shunt to drain the liquid away. This failed also.

My mum never recovered from these operations. She went further downhill mentally and now could no longer walk or talk properly. She was bedbound. She developed pneumonia and we thought at this stage she was going to die, but she recovered and fought off the infection. She was still bedbound and largely unconscious though.

We transferrred to a hospice 10 days ago, which was a wonderfully peaceful place. The staff were fantastic and looked after mum in a way the hospital were unable to.

Although mum opened her eyes (they remained open right up to the end), her breathing gradually became shallower. Finally on Tuesday, the breathing slowed and eventually stopped. She had died. It was such a peaceful end, she sufferred no pain or physical distress, just drifted off to sleep.

Its ironic that the treatment we were counting on to beat the GBM, actually hastened her death in the end. A timely reminder I guess of the toxicity of the treatment for this condition and the sensitivity of the area its treating. I would strongly urge relatives of patients with this condition to stop and think about the benefits of further treatment, if the patient is showing signs of signficant mental decline.

My mum was a truly wonderful person. Not once during the 16 months did she whinge or complain about her condition. She lost the ability to make decisions about herself and became almost childlike at times - especially after the radiotherapy. She remained wonderful company throughout though and maintained a great sense of humour. She will be greatly missed by the whole family.

 Best wishes and luck to everyone affected by and fighting this disease.

 Dan

 

 

 

 

 

 

 

 

 

 

 

 

Dear Dan,

Please accept my sincerest and deepest condolences on the passing of your Mum. I too lost my wife of 49 years to this disease on March 2, 2008 after a five month battle to keep her here.

Like your Mum, my wife was in excellent health for a woman of 74.  In fact she was on the beach the very morning she had the episode that caused us to call the emergency service to get her to the hospital where she was diagnosed with GBM IV.

It was a shock to us all that a person could be so active and alert one moment and then start a rapid decline both mentally and physically. That is so devastating to bear and watch. In her case the surgery was not an option and the Temodar and PTK were not tolerated well by my wife.After 15 of the scheduled 30 radiation treatments she was so wiped out and no change in the tumor seen, that it was suggested that we consider Hospice.  She was at home, under Hospice care,24/7, for 3 months and passed away peacefully on a sunny Sunday afternoon looking out on the Beach that she loved so well.

I too share your view that patients should be given the scenario that is most likely to be played out for that particular patient as to not only the quantity of life but the quality of life, and then  determine what course of treatment the patient would want. This decision would, in part, be based on a health proxy and talks with the patient.

 Doctors have the benefit, if I can use that word, of seeing many cases during their careers and should try to, at least, impart that experience as one factor in determining what  the treatment should be to the family AND patient.

Once again my prayers are with you and your family.

                        Sincerely

                                    Jack

Dan,

 I am so sorry for your loss-my heart goes out to you.  I lost my father this past Saturday, April 26th to GBM.  It was a terrible experience and I can't get the images of him dying right in front of me out of my mind.  He was diagnosed in 2003, had surgery, radiation, and countless rounds of chemo....we were on a roller coaster ride for almost 5 years.  He got pneumonia and pulmonary emboli last fall and never really recovered after that.  He started Avastin, which caused major brain damage to his healthy brain, while shrinking his tumor (ironically).  He declined so fast overnight that we were all shocked and thought it was tumor regrowth for sure.  His entire brain was inflammed with many dead areas from the Avastin.  This is the risk you take to treat this horrible disease.  It was absolutely dreadful to watch my father lose not only his body, but his great mind.  He literally withered up, became incontinent, couldn't walk, etc. overnight.  It is hard remembering him like that.  I do believe he knew we were all at his side while he passed, which gives me some comfort.  My prayers are with you.

I am sorry to hear about your mom,  I find a wonderful memorial website. Put your mom on it.

May you get peace, my heart is going out to you.

www.christophergist.memory-of.com