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

connsteele said:

That's a tough call. All I

That's a tough call. All I can say is that when our son, who was 35 and fully recovered from his surgery, underwent whole brain radiation, it was really, really hard on him. It got so bad that the doc almost stopped treatment as he didn't know if his precipitous decline was due to the radiation or tumor progression. He was put on high dose steroid (Decadron) which did help...got him up and walking again but oh! the side effects of that! (Increased appetite, which  might help your mom put on some extra weight..one small advantage) In all fairness I have to add that our son had had previous whole brain radiation when he was 8, for the first brain tumor he had. That was hard on him too...lost weight and fatigue but that's the worst of it. So maybe have had previous WBRT caused him to be more sensitive to radiation effects the second time around. Once he finished his radiation the second time around, and he was wearned off the high dose steroid (maybe 2 months later) he improved but still had to walk with a cane. In retrospect, if it had been up to me, I would have counseled him more to forego the radiation, it was so hard on him. But it was his decision. I think it did give him a few more months but he never got to where he could live independently again. He passed away exactly one year after his second diagnosis.

 

I am so sorry you and your mom have to go through this. There are no right answers. No matter which way you go, you will always have second thoughts if it was the right one. For example, if we had pesuaded him not to have had the radiation, I imagine I would have regrets thinking that the radiation might have extended his life for a longer time. You just never know.

 

Take care,

Connie

For sharing your painful experience.  Exactly what I want to know.  If you could go back, would you do it again?  Your answer tells me a lot -- I am grateful.  

Ultimately, I will post our decision and let you know what happens.  I'm beginning to think that WBRT is just the beginning of a long road of suffering to certain death.  Without it, death is also imminent, BUT not with the degree of suffering you have with WBRT.  

Thank you again Connie!

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

cindysuetoyou said:

I'm sorry

Hi, Jalu.

I'm so sorry that you haven't had more responses. I read your plea for input and I wanted to write but I was afraid to say anything to influence you either way with such a critical, important, personal decision.

My son David had radiation, but it was targeted at the cavity where the tumor had been. (He had a total resection.) He was 25, and after he recovered from surgery, he had 6 weeks of radiation. It was tough for him, but he recovered, took Temodar, and did well until a recurrence two years later. The recurrence was extremely aggressive and he died on October 15th. 

I don't know what to tell you about your mom. Becaue of her age, I would really hesitate to do WBR. But her doctor recommends it? Maybe it could give her a few more years? 

Like Connie said, it's a very tough call. I don't know what I would do if I were in your shoes. I think the reason that you haven't received very much input is because no one really knows what to tell you to do. 

I'm so sorry that you are faced with such a terrible decision. May God give you peace about the decision you make for your mom's treatment.

Love and blessings,

Cindy

for your insights.  I am so grateful.  And I am so sorry for the loss of David.  Know that everyone on this site is so grateful for your sharing.  

My Mother's doctor(s) recommend WBRT because that is all they have left.  There is no cure.  Just WBRT to HOPEFULLY add more time.  I just want to know -- is it suffering time? or is it quality of life time?  Will she be the same independent, active self AFTER WBRT, or will it be time in a wheelchair or with a walker?  What will it do to her mentally?  Such a common treatment, I would have thought I would have had a flood of responses.  DO IT!  DON'T DO IT!  Every inupt is invaluable to me.  Thank you!

Connie too, tells a painful story.  Her hindsight is invaluable.  I HATE what this cancer has done to us all!

So many thoughts -- such confusion.  The doctors do what the can, but are the really aware of all the suffering that families are watching their loved ones endure?  For so many, I see the treatments taking them deeper and deeper into major suffering only to face a horrible death.  Would the death have been better without the MAJOR suffering leading up to it?  

I know that everyone who has faced this has hindsight.  Painful.  My hindsight to date has been that I WISH WE HAD DONE SURGERY and removed my Mother's lung spot BEFORE BIOPSY. Just get it out of the body.  I feel certain that the biopsies released the cells into her blood and they went to the brain.  So common.  Surgery WAS an option for us, but doctors recommended the biopsies first -- then stereotactic radiation which worked on the lung spot, but now the brain cancer is killing her.

And so, I am begging for hindsight from everyone out there on WBRT.  Was WBRT the last treatment you wish you HADN'T done?  Was an agressive fight with a lot of suffering worth it for you?  .   

Cindy, thank you again and again for your post. 

Klofquist13 said:

I hope you find what you are looking for...

I lurk here often without posting but I cant ignore your plea for help in making this very difficult decision for your mom. I have been doing the same for my husband, now 33, since April 2012 when he was dignosed with a baseball size tumor.  An ugly beast we now know began as grade 2 astrocyoma and had turned into grade 4 by the time we knew anything was wrong. With only 15% of his tumor having been resected and him being so unbelievably strong and young we never hesitated to complete 6 weeks of radiation. The combination of radiation and temodar has continued to shrink this monster as of MRI on Dec. 27th.  Throughout radiation he napped more often and lost his hair. The swelling in his brain caused by this disease and rad has kept him dependent on decadron, which helps with his speech. He continues to make lists and check things off and we have bought ourselves amazing time and memories with our son who just had his 2nd birthday. Is it all peachy everyday? Absolutely not! But it is our life now, and its LIFE! I know there will be a time I will wonder if I have done everything right or I can for him, but right now we are winning and there are no regrets.  You may not realize it, but you probably already know the answer you are looking for. Just know that whatever you decide, you are doing so out of love for your mother and she knows that too! 

Kristi

KNOW radiation has done for you.  I am truly happy to hear the amazing extension of life you have been given.  And oh, I wish many more years to come for you, your husband and your son.  So very encouraging.  It does so help me understand -- the pros -- the cons -- from real people.  You've helped me understand that life will never be the same and that there are bad days, BUT THERE ARE GOOD DAYS TOO.  And how precious that time is.  

I cannot thank you enough Kristi for sharing your story.  Never look back...I feel certain YOU have done the right thing!  I wish you the best!

And I will keep you posted on the continuing saga -- a beautiful, loving 86 year old Mother who so enjoys life, dying of brain cancer.

P.S. I know I have a lot to be thankful for.  To have a Mother who has LIVED 86 years.  I should be grateful for the cycle of life -- it worked -- parents are SUPPOSED to outlive their children.  I had no idea all of the LIFE that brain cancer has taken -- children, husbands and fathers in the prime of their lives, wives and mothers just beginning to live -- THAT is not fair.  I'm so sorry.    

connsteele said:

Just one more thought in trying to come to a decision.

Just one more thought in trying to come to a decision. What does your mother want? Has she talked about her wishes? How much she wants to fight this? I know our son would have done anything to fight this monster, no matter what it cost him in terms of pain and suffering. But then, he was 35 years old. He really thought that he would get better. So for him, WBRT was the right thing. I am wondering how much your mother understands her situation: the prognosis, the treatments and side effects.  Have you talked about your concerns with her? I imagine you would have more peace with the situation if, after making sure that she understood all her options, she was the one who ultimately made the decision whether to fight this or to go for palliative care. Also, you know that she has the option to stop the radiation anytime she feels it's too much. Or, she could also request to have reduced doses. That's what our son's doctor did, because he knew that the previous radiation would make this second time around really hard on him. I'm really glad he did as I don't think, in fact I know, that our son could not have endured the full standard treatment for his type of brain tumor. Hope you and your mother are hanging in there.

Connie

Thank you Connie.  I think what you say is perhaps THE most important consideration:  how does she really feel about it?  I'm so grateful for your hindsights here which are so painful, but, I think it is very clear in your case -- you DID DO the right thing.  You supported him in his fight and deep down that is what he needed from you.  Thank you Connie.  I will do the same for my Mother.

So, how does she really feel about it?  I will say that WBRT is what her doctors recommend and she totally trusts her doctors.  They dismiss the side effects saying, "oh, you will be a 'little' tired', maybe some confusion, but that she will do fine".  She feels she doesn't have any other options when I am telling her SHE DOES.  What she DOESN'T really get right now is that:  IT IS NOT A CURE -- that she will die from this either way.  Her doctors are offering what they know -- what they believe in, but they have really told her nothing about the reality of WBRT or any other options -- the pros and cons of WBRT, etc.  

I'm learning that there ARE options with radiation.  Thank you for that input.  We CAN stop anytime.  Reduced doses also sound hopeful.

In September 2012, on the advice of her doctors, her spots in the brain were treated with stereotactic (targeted) radiation, targeting only the spots they could see.  Her doctors assured us she would do fine with the treatment and "be a little tired".  This is a little 93 pound woman who does not do well with any drugs, with a one-half aspirin being the strongest drug she has really ever taken in a long time.  We were NOT prepared -- in any way, shape or form for the side effects of that treatment.  The massive doses of steriods were bad enough and then she became toxic to the dilantin to the point where she could no longer speak, no longer even walk -- even WITH help.  We had NO idea what surprises were in store for us and yet the doctors were NOT surpirsed by ANY of it!?!  The doctors say her reactions were very common.  THEN WHY DIDN"T THEY TELL US IN THE FIRST PLACE???  I am GLAD we did the targeted radiation, Mother made it through the treatment only to find MORE SPOTS on her MRI in January.  It was a hard climb back.  Months of misery.  She remains VERY TIRED to this day!  Anyway, WBRT is all they have left to offer.

If the doctors won't prepare me (or her) for what is ahead WITH WBRT, I am pleading -- begging for the truth.  From those of you who have HAD to live with this.  If we move forward with WBRT, WHAT are we really facing? -- WHAT are the doctors NOT telling me?   Is dementia/confusion common?  Are speech impediments common?  Can we really ever expect she will be able to live/function alone again, or are we fooling ourselves?  Do all the side effects of WBRT get worse over time -- not better?

Your sharing is so important to me and understanding your approach and your strength is important to me.  You've been such a help.  Thank you!

delayne_11 said:

WBRT

Hello.  I just read your situation and I can't say enough how sorry I am that you must make decisions like this. My sister was diagnosed with Stage 4 breast cancer mets to the brain last year on Feb1,2012. She was 39 and she did have a craniotomy in which they were able to remove the whole tumor. They did see two other "spots" on her brain and suggested WBRT. She did it. The first two treatments were aweful. She was so sick. But with good meds she got past that and was able to complete her therapy with not too many side effects. She did lose all of her hair and it still has not grown back but just a little bit. Otherwise what looked and felt like a bad sunburn was all she had to deal with. She was on Decadron the entire time and Dilantin. She has since been taken off the Decadron. No driving for 6 months but she was released to drive after that. She does show signs of short term memory loss and fatigue but not much else. When her Dilantin level is off she is very emotional. The "spots" are gone and her MRI shows no progression and is stable. So the treatments worked for her and she handled them well. She takes Xeloda now and we see the Oncologist for test results that will be done at the first of next week on Feb 8. We just take each day as it comes and we don't take anything for granted. Best wishes and hope this helps someone one way or another.

 

With love,

Traci

...for your story.  Thank you for sharing!  At some point, I feel WBRT is in the cards for us -- stories like yours give me hope.  I wish your sister all the luck in the world -- and I agree -- day by day is the only way to go.  Your sister is too young to be taken by this awful disease.  We are somewhat fortunate in that my Mother is 86, having lived a happy, healthy life.  I really have little right to complain when this disease is claiming lives in their prime.  I do so sincerely wish you and your family the best.

And so...we do the same -- day by day.  Because she is doing so well -- right now -- active and independent, we just aren't ready to "take her down" with WBRT.  She is not even taking steriods!  It is hard though because her radiologist says THE SOONER THE BETTER with WBRT.  But I understand it is a matter of time before the growth of the "spots" in the brain begin affecting her mind, ability, etc.  At that time -- since she is losing function from the disease itself -- we will probably elect to go forward with WBRT.  And I will always be haunted by wondering if we should have done the WBRT sooner.  I just keep telling myself -- WBRT is not a cure -- it only adds time -- and not necessarily "quality" time.  Our goal is to minimize suffering as much as possible.  Make her last months/days comfortable -- not miserable and sick and suffering.  Time will tell.  

I pray to God every night, for all those suffering from CANCER.  I read the posts and am horrified at the suffering.  Surgery, radiation, chemotherapy, steriods, anti-convulsants are all really have to offer -- often in vicious circles.  The doctors perform these procedures until the end because that is all they have to offer.  There is light at the end of the road for so few.  We are so far from a cure.  DEVASTATING.  

Dear Traci, I will put you, your sister and your family in my prayers.  Again, I'm so grateful for your sharing. 

maca2004 said:

hi jalu

May I suggest purchasing Ben Willaims Surviving Terminal Cancer. As well as being an excellent read it provides numerous suggestions for brain tumour treatment that much less toxic than WBRT. And whilst they may not be curative they may extend live and provide palliative care and lessen your mother suffering.

I wish you and your mother all the best.

PS - If you check my post I have added some notes that I took to an oncologist appointment, which feature some me of which feature some of the treatment Ben talks about.

 

Also, google brain tmr and join their group - a very useful resource for anyone with the misfortune to be dealing with a brain tumour.

Exactly what I am looking for.  We go to the oncologist on February 26th to "re-evaluate" having WBRT.  Your notes are invaluable.  I will take the same approach with Mother's oncologist on February 26th.  Doctor's appointments are hard in that you often come out with more questions than when you went in.  A concise outline of all the questions and topics we need covered by the doctor will be our approach.  INCLUDING those treatments you have listed. I've also got Mr. William's book on order.  

I'm grateful.  I CAN accept death -- I CANNOT accept suffering.  

And you too -- I wish you all the best in your fight as well.  It is hard -- it is complicated and all the decisions leave you with hindsight -- did we do the right thing?  What a challange!  

sadinholland said:

Scorpio79

I am sorry to hear that your brother-in- law passed. My husband had an Anaplastic Olio grade 3. It has been over 2/12 years. He has 1 deletion. He is doing ok. I try to enjoy life and not worry, but I can't help but to worry what the future holds. I will pray for you and yor family regarding dealing with your BIL's death. God Bless!

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.