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LUNG CANCER METASTASIS TO THE BRAIN

jalu
Posts: 58
Joined: Jan 2013

** MY ORIGINAL POST ON THE BRAIN CANCER FORUM:  DOES WBRT WORK?  IS IT WORTH IT WHEN IT IS NOT A CURE?

My poor Mother.  Stage 4 adenocarcinoma of the lung which has metastasized to the brain.  Lung spot was caught early and successfully treated with stereotactic radiation, but not before it metastasized to the brain.  Initial brain spots were treated with stereotactic radiation, but recent MRI shows more spots have appeared.  Doctors recommend WBRT -- NOT to cure it -- but to extend her life perhaps 2-3 more years.  She is 86, very healthy, but frail at 93 pounds.  Currently she is doing so well -- independent -- driving -- FINALLY having recovered from 6 months down with the stereotactic treatment to the brain which was very hard on her (the steriods/dilantin/being so tired).  If we knock her down AGAIN with WBRT, will we ever get her back?  I hear WBRT can be very hard with lots of severe side effects.  

Decision time and I need help.  Does WBRT work?  Will she have quality of life after WBRT?  It is not a cure -- is it worth it?  Is she better off to just live as long as she can feeling good and doing well?  Either way, I realize she is dying, but HELP -- will WBRT help?  Should we -- shouldn't we?  I am so confused?

AND WHERE WE ARE TODAY -- 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.   

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Hello, thats exactly what have at 47 yrs old, be contented your mom has lived almost 40 yrs past my age ! WBR, i m told, is the last form of radiationafter Gamma Knife.  At 86 yrs  young, get it done and let the Doctors do their magic.

 

Dave

jalu
Posts: 58
Joined: Jan 2013

...for your sentiment.  We HAVE been fortunate in so many ways and I hope and I pray it is actually going to put her in remission and give her years to live.  I'm sorry for your diagnosis -- you are too young for this, but where there is a will -- there is a way.  

Here is to years to come...for us all!

dennycee
Posts: 667
Joined: Mar 2011

We have been rooting for him as he has gone through three (I think) different types of radiation for brain.  The fatigue is the worst part.  Without the WBR though, my mom was and would have remained in excruciating pain.  We would have lost her sooner.  When/if the time comes that I need WBR I will have it.  

it sounds as though your mom needs occupational or physical therapy.  Did they teach you how to walk with her using a belt to help her?  

The WBR is her best chance and recovery takes a long time.   

jalu
Posts: 58
Joined: Jan 2013

And I'm so grateful for the encouragement.  I'm hoping you and Dave are telling me that these immediate post-WBRT symptoms are more from WBRT than from the shutdown process and I am praying that is so.  The doctor says she is not "up" for physical therapy at this point (and Mother agrees).  We are trying to get her to at least sit on the edge of the bed and do leg lifts -- stretching her arms/hands with deep breaths.  At least SOMETHING.  And we are getting her to the kitchen for three meals a day.  I'm even thinking of getting a yoga person in two days a week to have her do some stretches -- even if she doesn't get out of the bed -- it should be helpful.  

I'm grateful for the hope and encouragement -- we are in it for the long haul -- whatever it takes for Mother.

Take care and I will keep updating any progress.  Sometimes I think I am losing it -- being so close to the situation -- but not really able to do anything to actually make her feel better.  It has only been a little over two weeks since the end of treatment, so I'm hanging in there.  There is so much support here.  

THANK YOU.

janet

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Dear jalu, Please let you mother do what ever she wants, let her be happy untill she goes to heaven.  All this treatments are tourture a leaving hell for the patient, i know it, when my husband was alive he try every med you can think of. WBRT. maganife surgery, and the only thing we got was more suffering, more tumors in his brain, the dr. told us the gamanife did not work, nothing works and he was only 63 years old, never sick on his life (only smoke) very strong man and do not believe anybody if they tell you how much time she has, ONLY GOD KNOWS stay with her as much as you can I tell her how much you love her and that you are ok.

I am praying to God to give you peace and confort.

jalu
Posts: 58
Joined: Jan 2013

Hi Rosi -- Absolutely the cutest little creature I have ever seen.  The true picture of LIFE!  

Thank you for your caring and your prayers.  So hard to live day by day, but that is what I do.  You are so right...ONLY GOD KNOWS!

dennycee
Posts: 667
Joined: Mar 2011

Exactly, yes, these sound like side effects not the end.  It takes time but it does get better.  Hey, look at Dave, he contributes great advice here and he has been where your mom is. 

mykes1
Posts: 2
Joined: Apr 2013

Hello, i am sorry to hear that. It is hard. It was hard to read your story. My father passed away of lung cancer that spread to every organ in the body within 6 months. He was diagnosed in july 2012. 2 week follow up the doctors said he was fine. its gone. ( we did not know at that time all they did was chest xray.) My parents were not stupid when it came to cancer. They were in my opoinon experts. My brother died when he was four of cancer and i have cancer. 2 months later he now has a tumor on the brain, and its everywhere. Our lives fell apart. But wait no its only back on one lung. they released him with no bowel movement and not eating. Within 3 weeks he lost 35 pounds and he never healed. He went to do biopsy and they rushed him to the ER. It was true. It was the worst case they ever seen. Within 2 weeks he passed away. Withihn that 2 weeks were so much pain, i am crying right now.  4 days after being in the hospital he started chemo. He looked at me and said im doing this because we made you. I am gonna fght. We knew it was not a cure either. It would maybe only prolong it 3 months. His birthday is dec 9th and we had to get my brother down here to see him one last time. we took some prof. pictures 3 days before he passed away. it was so hard watching my dad, my bestfriend, need help with stuff. like a baby in some ways. Then on top of it we could not understand him for 3 months before he died. It is so painfull and i hate it when everyone says it will take some time. HA! that is bull, but true. If you keep your mind on what happend yesterday you will never see tomorrow. My dad always said stuff like that. I am writing about everything from my brother dieing to the fights my family had within its self. Dad always said this. ACCEPT IT, DEAL WITH IT, AND MOVE ON. I named the book this after my father. what i just wrote is only a spec on what i wrote. It is a book. It has helped me alot. May you should try it too.

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Yes... Dennycee is right, i like his posts and it is comforting to hear from him.

I've had 3 or 4 Gamma Knifes on the nscl brain mets and going in for a 3rd brain surgery on april 30th, they will also put in some chemo wafers. WBR is a option for your mom..and maybe for me in about a year.

I wish I live till 86 though, what a joy that woulld be to me and others.

Be strong, it is what it is...

Dave

jalu
Posts: 58
Joined: Jan 2013

So many emotions here -- so much hindsight. 

April was an awful month.  WBRT (completed 12 of proposed 13 treatments on March 19th) did nothing to help my Mother.  Month of April was downhill all the way.  Deterioration daily -- in so many ways.  Went into hospice around April 23rd.  Doctors said that WBRT was the last thing they could do -- there were no more treatment options for her.  The hospice doctors also told us her pre-WBRT MRI's showed 14 significant metastasis and that the center line of the brain was significantly off-center.  Funny that on the day of that MRI (February 27th), she was up, functioning, walking, eating, cognitive in every way.  She was told she had one-two months to live without WBRT and 6 months with WBRT.  She lived one and one-half months WITH WBRT.  Why did we ever do WBRT?  I'm not saying she wouldn't have died anyway, but WBRT took her down -- WBRT triggered the shutdown.  She died at 4am on May 4th.  No pain and still somewhat cognitive, I believe she passed in her sleep.  Completely bedridden, basically shut down, it was a blessing in that she would never have her life again.  She was 86 and yes, we are lucky in so many ways.  A happy and healthy life, too many are dying of this disease too young.  Such a depressing diagnosis -- there is no cure --the treatments are hard and barbaric.  We have made NO progress in fighting this disease.  The hurt, the pain of losing my Mother to this disease has been devastating.  So many thoughts -- so many feelings.  

And so, my saga ends...Was WBRT worth it?  In my Mother's case, ABSOLUTELY NOT!

My hindsight.  I understand is worthless, but still...  I throw out several scenarios:

GOSH, all the tests beginning with the spot found on the lung in March 2012, the biopsies, the x-rays, the MRI's, the PET scan, the bloodwork, the doctor's visits, the treatments (targeted radiation) and recoveries, the drugs, etc.  From March 2012 to May 2013.  Had we done nothing, quality of life would have certainly been better from March 2012 to ???.  All was well, Mother was fine.  Even with 14 metastasis in the brain, Mother was "somewhat" well (and might have been even better had we not been through the stress of all the doctor's visits, tests, treatments, etc.).    

If it were me...I would either:  1) When the spot if found in the lung, I would opt for immediate surgery to remove it -- no biopsies -- remove it.  They can biopsy the spot after surgery (I'm not so sure that the two biopsies my Mother had didn't contribute to releasing the cancer into the bloodstream where it travelled to the brain and killed her). OR 2) Things are hopeless with metastasis to the brain.  With that news, I would immediately start HEROIN or DEMEROL.  They say never try heroin because you will love the high and become addicted immediately.  Fine -- I'm dying -- I will die FEELING GOOD!  I will die on my own terms and perhaps enjoy it.

I'm sorry -- so very sorry -- for everyone affected by this disease.  Far too many people suffering -- far too many YOUNG people suffering.  I wish I had the answers.  Here I have been through it and yet I have no answers.

So many emotions here.    

 

 

 

dennycee
Posts: 667
Joined: Mar 2011

Deeply sorry for your loss.  Your love for your mom and you pain are both palpable.  Please do not second guess yourself.  You did everything humanly possible.  I reread your original post.  Your mom was in excrutiating pain from the tumors.  after her treatment the pain was gone.  You did the right thing.  My mom went through the same thing and before radiation she could barely move for the pain.  You saved your mom from that. 

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Dear Jalu, I wish I can tell you something to make better you pain, but i will tell you that I understand your feelings about WBRT, b/c we had the same experience with my husband.

Think that Mom is resting in peace with Jesus. An remember the good times ok.

 

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