DOES WBRT WORK? IS IT WORTH IT WHEN IT IS NOT A CURE?

leprechaun2

jalu said:

THE CONTINUING SAGA...

I've been so grateful for all the posts and heartfelt experiences related to WBRT.  And so the saga continues.  I'm suffering.  

Back to Little Rock, Arkansas where we were told that the February 27th MRI showed 14 metastasis -- growing/multiplying (In January, there were 7).  And of course, the recommendation for an 86 year old was WBRT.  They proposed 13 treatments.  I had really wanted to go Gamma Knife but they said for her that the intense radiation and the "criss-cross" needed would be too much for her and that she would need steriods AND anti-convulsants.  We were told we had one to two months without WBRT and were hopeful for six months with WBRT.  My Mother so trusts her doctor and WANTED to go forward with their recommendation -- WBRT.

Mother was doing so well before treatment -- healthy, eating well, expelling well -- everything.  She has been healthy and active all her life.

First week of WBRT went off without a hitch.  Second week was hard, but she made it through.  We only completed 12 of the proposed 13 treatments and beginning the third week, the WBRT downfall began.  She is taking a minimal steriod dose (only six mg per day) so we have been grateful for that.  It has been two weeks since the last treatment and she has been bedridden for those two weeks and continues to be.  We have been able to get her up and to the kitchen table for her meals, but it is always back to bed.  She is eating well.  Having carefully read about the shutdown process with brain cancer (www.brainhospice.com) however, I see many signs of shutdown.  She needs help walking -- going to the bathroom -- getting to the kitchen table for meals.  I am seeing her hands curl in and kept close to her chest.  At times her legs will just buckle under her.  She is eating well, but not gaining weight.  Little (85 pounds), fragile and frail.  She says she has no pain and is relatively cognative, but often wakes for dinner thinking it is time for breakfast (and vice versa).  Her main complaint is just being so tired and wanting to sleep all the time.  I've seen no improvement in her condition -- it seems we are only going backwards.  If the radiation worked and the tumors are shrinking, why am I seeing signs of shutdown?  Are the tumors killing her or is it the WBRT?  Could the signs of shutdown I see really be the side effects from the WBRT?  Is she NOT shuting down and maybe just recovering from the WBRT?  So many questions -- the doctor has been no help, saying it is a good sign that she is eating well and we are able to get her up for her meals.  Her vitals and her bloodwork look good and there is no indication the cancer is in the liver or in her bones.  I cry everyday watching the decline.  I would say that according to brainhospice we have two to three weeks left.  Am I reading things right?  Or will there be improvement after WBRT?  If the shutdown process has started, is there any point in trying to circumvent it or are we just torturing her?  

No pain for her, but tremendous pain for me.   

I am so sorry you are in this

I am so sorry you are in this situation. 

when my husband had WBRT, 25 doses of it, he was sleeping 20 hrs a day.  A doc prescribed Provigil, at 100mg and the change was incredible.  His sleeping was cut to 12 hrs almost immediately!  He was alert when awake, not just tring to rouse himself as he was before the med.

Another side-effect was the damage in short term memory which we coped with by using sticky notes, dry erase boards and lables on cabinet doors so he could find things.

His taste buds were out for about 6 months afterward so he ate chocolate shakes which I filled with protein powder, a banana and Hagen Daz chocolate-coffee ice cream.  that kept him from loosing even more weight than he did.  small meals of peanut butter on crackers also helped.

His tumors were caused by lymphoma so I can't tell you how long the treatments will keep your mother's tumor at bay but it worked for his for about 8 months, giving him time to get stronger so that when he did relapse, he was able to stand the treatments again. 

I hope any of this helps you.  I am praying for your mother and you!

jalu

leprechaun2 said:

I am so sorry you are in this

I am so sorry you are in this situation. 

when my husband had WBRT, 25 doses of it, he was sleeping 20 hrs a day.  A doc prescribed Provigil, at 100mg and the change was incredible.  His sleeping was cut to 12 hrs almost immediately!  He was alert when awake, not just tring to rouse himself as he was before the med.

Another side-effect was the damage in short term memory which we coped with by using sticky notes, dry erase boards and lables on cabinet doors so he could find things.

His taste buds were out for about 6 months afterward so he ate chocolate shakes which I filled with protein powder, a banana and Hagen Daz chocolate-coffee ice cream.  that kept him from loosing even more weight than he did.  small meals of peanut butter on crackers also helped.

His tumors were caused by lymphoma so I can't tell you how long the treatments will keep your mother's tumor at bay but it worked for his for about 8 months, giving him time to get stronger so that when he did relapse, he was able to stand the treatments again. 

I hope any of this helps you.  I am praying for your mother and you!

THANK YOU DEAR LEPRECHAUN2 -- I'M GRATEFUL FOR YOUR INSIGHT.

Nothing better than a shake with haagen-daaz ice cream and I am going to get some protein powder and pile it in!  I'm grateful for your tips!  You mention he got stronger so sthat when he did relapse he was able to stand the treatments again.  I was told that this was last resort.  If it doesn't work, or if there is relapse, they CAN'T do it again!!??!!  Perhaps her age.  Thank you for the comfort of your words and for the prayers.  

 

leprechaun2

jalu said:

THANK YOU DEAR LEPRECHAUN2 -- I'M GRATEFUL FOR YOUR INSIGHT.

Nothing better than a shake with haagen-daaz ice cream and I am going to get some protein powder and pile it in!  I'm grateful for your tips!  You mention he got stronger so sthat when he did relapse he was able to stand the treatments again.  I was told that this was last resort.  If it doesn't work, or if there is relapse, they CAN'T do it again!!??!!  Perhaps her age.  Thank you for the comfort of your words and for the prayers.  

 

I am glad of any comfort I can give. We fight together!

Dear Jalu,

My husband was 53 when he had the wbrt, it is true.  but when his tumor grew in a new place in his brain, he was given the methotrexate that gave him partial remission earlier but with a different combination of supporting chemos. He did not have more radiation.  I don't think his brain could have lasted through more.

If there is anything I can do in addition to the prayers, just let me know.  I will be watching, and praying.

rachelsm03

WBR

My father was diagnosed with large cell lung cancer in the summer of 2010.  After chemo and radiation, he was cancer free that fall.  In May 2011, he had a seizure.  After a brain MRI, we found out that he had one (only one!) 1cm lesion in his brain.  The doctors put him on decadron right away to reduce the swelling in his brain, and keppra to control the seizure activity.

In June-July 2011, Dad had 15 whole brain radiation treatments, followed by a localized gamma knife procedure right on the lesion.  Within two months, the lesion shrank to several mm in size.

No one bothered to check Dad's blood sugar while on the decadron, and he almost fell into a diabetic coma in the fall of 2011, with blood sugar over 600.  He also had steroid psychosis from the decadron as well.  The diabetes combined with two large blood clots (in his lungs) landed in in a rehab facility for six weeks in late 2011.  He was weaned off the steroids over a period of 6 months, and then was able to stop the diabetes meds as well.

Unfortunately, Dad never really recovered from the WBR and gamma knife.  He never walked properly again afterwards, and always required a cane or walker.  His short-term memory was zapped by the radiation as well - he could remember things from decades ago, but not whether or not he'd had lunch that day.  Things seemed to stabilize a little through the spring and summer of 2012, but he became significantly shakier through the fall.

This past January 2013, Dad had a stroke.  He went to the hospital January 15 and then went to a rehab facility several days later.  His MRIs showed acute damage and also several areas of older damage (which explain his unsteadiness and confusion in the fall of 2012).  About two weeks after he arrived at the rehab, he had another stroke.  He didn't come home until March 7.  Since he's been home, he's had two more strokes, and today he is in the hospital (he had a stroke this past Tuesday), having additional MRIs and tests for seizure activity.  Several different neurologists have told us this damage is the long-term effect of the WBR, and that since radiation's effects are cumulative, it can take months or even years to see the effects.  His small blood cells in his brain are significantly damaged, and his brain is not getting the oxygen it needs.

Looking back, I am not sure what the right treatment for his cancer was.  Did it kill the cancer?  It sure did.  Did it take most of him with it in the process?  Yes.  He's only 65.

leprechaun2

rachelsm03 said:

WBR

My father was diagnosed with large cell lung cancer in the summer of 2010.  After chemo and radiation, he was cancer free that fall.  In May 2011, he had a seizure.  After a brain MRI, we found out that he had one (only one!) 1cm lesion in his brain.  The doctors put him on decadron right away to reduce the swelling in his brain, and keppra to control the seizure activity.

In June-July 2011, Dad had 15 whole brain radiation treatments, followed by a localized gamma knife procedure right on the lesion.  Within two months, the lesion shrank to several mm in size.

No one bothered to check Dad's blood sugar while on the decadron, and he almost fell into a diabetic coma in the fall of 2011, with blood sugar over 600.  He also had steroid psychosis from the decadron as well.  The diabetes combined with two large blood clots (in his lungs) landed in in a rehab facility for six weeks in late 2011.  He was weaned off the steroids over a period of 6 months, and then was able to stop the diabetes meds as well.

Unfortunately, Dad never really recovered from the WBR and gamma knife.  He never walked properly again afterwards, and always required a cane or walker.  His short-term memory was zapped by the radiation as well - he could remember things from decades ago, but not whether or not he'd had lunch that day.  Things seemed to stabilize a little through the spring and summer of 2012, but he became significantly shakier through the fall.

This past January 2013, Dad had a stroke.  He went to the hospital January 15 and then went to a rehab facility several days later.  His MRIs showed acute damage and also several areas of older damage (which explain his unsteadiness and confusion in the fall of 2012).  About two weeks after he arrived at the rehab, he had another stroke.  He didn't come home until March 7.  Since he's been home, he's had two more strokes, and today he is in the hospital (he had a stroke this past Tuesday), having additional MRIs and tests for seizure activity.  Several different neurologists have told us this damage is the long-term effect of the WBR, and that since radiation's effects are cumulative, it can take months or even years to see the effects.  His small blood cells in his brain are significantly damaged, and his brain is not getting the oxygen it needs.

Looking back, I am not sure what the right treatment for his cancer was.  Did it kill the cancer?  It sure did.  Did it take most of him with it in the process?  Yes.  He's only 65.

So sorry to hear of your

So sorry to hear of your father's suffering. 

Has anyone mentioned fluid on his brain?  My hub had all the side effects you describe, minus the strokes but he has had some brain bleeds.

The fluid built so slowly over 2 years that his Neuro-oncologist almost missed it.  By comparing his mri to one a yeara earlier, it was obvious and after a few months, a shunt was put in to drain the fluid as it built up so it would not add pressure to what his brain was already dealing with due to his brain cancer and its treatments. 

I don't know if this is appropriate for you father but I hope it helps.  Prayers for all of you.

daisy366

leprechaun2 said:

So sorry to hear of your

So sorry to hear of your father's suffering. 

Has anyone mentioned fluid on his brain?  My hub had all the side effects you describe, minus the strokes but he has had some brain bleeds.

The fluid built so slowly over 2 years that his Neuro-oncologist almost missed it.  By comparing his mri to one a yeara earlier, it was obvious and after a few months, a shunt was put in to drain the fluid as it built up so it would not add pressure to what his brain was already dealing with due to his brain cancer and its treatments. 

I don't know if this is appropriate for you father but I hope it helps.  Prayers for all of you.

Depressing

Glad I found this link. A few days ago I learned I have multiple brain mets from uterine cancer. Doctors treated as extreme emergency and saw me within hours and prepped for first WBRT next day. Not much time for pondering. Doc said I wasn't candidate for stereotactic due to too many mets. His concern was stroke if I did not get RT. I had already experienced some pressure at site of largest lesion.

my husband learned that decaderon can cause diabetes! Shame they don't monitor this.

i'm almost 66 & have been battling CA for almost 5 years. I think all treatment is barbaric!

God sped to all! Mary Ann

camie114

jalu said:

THANK YOU DEAR LEPRECHAUN2 -- I'M GRATEFUL FOR YOUR INSIGHT.

Nothing better than a shake with haagen-daaz ice cream and I am going to get some protein powder and pile it in!  I'm grateful for your tips!  You mention he got stronger so sthat when he did relapse he was able to stand the treatments again.  I was told that this was last resort.  If it doesn't work, or if there is relapse, they CAN'T do it again!!??!!  Perhaps her age.  Thank you for the comfort of your words and for the prayers.  

 

Hello Jalou,
I was moved when

Hello Jalou,

I was moved when I read your postings today. My MIL was diagnosed with lung cancer and it moved to her brain where they foudn 100 lesions. She began WBRT therapy yesterday and is not doing well today. How did everything go with your mother? I amthankful you posted you journey but never heard how it ended up going?

Thank you.

Leukivivor

jalu said:

I AM BEGGING FOR INPUT PLEASE

So many brain cancer patients on this site and I wonder why I have no input.  Whole Brain Radiation Therapy (WBRT) is often the treatment of last resort.  Not a cure, but they say it buys time.  Does it buy quality time?  Does it create suffering?  

I am so torn, my Mother is dying of brain cancer.  Should we put her through WBRT?  Will it really give us 2 - 3 more years with her?  Or just a year of suffering? or what?

PLEASE

Waiting With You Concerning WBRT

My father was diagnosed six weeks ago with NSC adenocarcinoma of lungs.  He is 84 and in great health until this!  He has Mets to brain and spine.  Oncologist said no surgery or chemo at his age.  Palliative care with WBRT along with steroids for several weeks to relieve symptoms.  For past year my father has been complaining of loss of taste, being tired, and more recently bouts of confusion and dizziness.  Thought it was just aging symptoms!  In past two months he has lost 50 pounds, walks to restroom and to recliner with aid of walker, rarely eats, and stays in bed most of the time.  We are hoping the WBRT would bring some relief, but have read about horrible side effects! What if quality of life after is not worth the extra time it buys?  What are other options?

Leukivivor

jalu said:

THE CONTINUING SAGA...

I've been so grateful for all the posts and heartfelt experiences related to WBRT.  And so the saga continues.  I'm suffering.  

Back to Little Rock, Arkansas where we were told that the February 27th MRI showed 14 metastasis -- growing/multiplying (In January, there were 7).  And of course, the recommendation for an 86 year old was WBRT.  They proposed 13 treatments.  I had really wanted to go Gamma Knife but they said for her that the intense radiation and the "criss-cross" needed would be too much for her and that she would need steriods AND anti-convulsants.  We were told we had one to two months without WBRT and were hopeful for six months with WBRT.  My Mother so trusts her doctor and WANTED to go forward with their recommendation -- WBRT.

Mother was doing so well before treatment -- healthy, eating well, expelling well -- everything.  She has been healthy and active all her life.

First week of WBRT went off without a hitch.  Second week was hard, but she made it through.  We only completed 12 of the proposed 13 treatments and beginning the third week, the WBRT downfall began.  She is taking a minimal steriod dose (only six mg per day) so we have been grateful for that.  It has been two weeks since the last treatment and she has been bedridden for those two weeks and continues to be.  We have been able to get her up and to the kitchen table for her meals, but it is always back to bed.  She is eating well.  Having carefully read about the shutdown process with brain cancer (www.brainhospice.com) however, I see many signs of shutdown.  She needs help walking -- going to the bathroom -- getting to the kitchen table for meals.  I am seeing her hands curl in and kept close to her chest.  At times her legs will just buckle under her.  She is eating well, but not gaining weight.  Little (85 pounds), fragile and frail.  She says she has no pain and is relatively cognative, but often wakes for dinner thinking it is time for breakfast (and vice versa).  Her main complaint is just being so tired and wanting to sleep all the time.  I've seen no improvement in her condition -- it seems we are only going backwards.  If the radiation worked and the tumors are shrinking, why am I seeing signs of shutdown?  Are the tumors killing her or is it the WBRT?  Could the signs of shutdown I see really be the side effects from the WBRT?  Is she NOT shuting down and maybe just recovering from the WBRT?  So many questions -- the doctor has been no help, saying it is a good sign that she is eating well and we are able to get her up for her meals.  Her vitals and her bloodwork look good and there is no indication the cancer is in the liver or in her bones.  I cry everyday watching the decline.  I would say that according to brainhospice we have two to three weeks left.  Am I reading things right?  Or will there be improvement after WBRT?  If the shutdown process has started, is there any point in trying to circumvent it or are we just torturing her?  

No pain for her, but tremendous pain for me.   

WBRT Prayers

Bless your family and what it is going through!  My 84 yr old Dad had his first WBRT yesterday.  We were told only few side effects and not too bad.  After reading all this info about WBRT I am so apprehensive! Dad was showing signs of brain degeneration...weight loss, confusion, sleeping all the time, no longer walks unaided, and so feeble from losing so much weight.  Hope right choice was made!