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LUNG CANCER METASTASIS TO THE BRAIN

jalu
Posts: 58
Joined: Jan 2013

Our doctor is recommending Whole Brain Radiation Therapy (WBRT) for my Mother.

I understand IT IS NOT A CURE.  It only adds time.

I cannot get a straight answer from my doctor.  How much time "on average" DOES it add?

AND can they guarantee "quality of life" after WBRT?  For those out there who have undergone WBRT -- has it given you lots more quality time?  Was it worth it?

Any input is appreciated!

Jasper County Native
Posts: 15
Joined: Jan 2013

My wife had two brain mets.  One could have abruptly ended her life and had to come out, but the other was smaller and in a less dangerous location.  Her docs recommended WBRT, but she opoted for Gamma Knife.  Three months later the ramaining tumor is 1/3 of it's original size.  We are praying she will have no more tumors and that this one keeps shrinking until it disappears.

jalu
Posts: 58
Joined: Jan 2013

...hearing your story.  And so many thianks for sharing.  I'm hearing so many good things on GK as opposed to WBRT.  

Again, I'm so grateful for your sharing.  I wish you and your wife the best -- I'll put you in my prayers!

 

dennycee
Posts: 673
Joined: Mar 2011

Quality of life depends on severity of side effects and strength of rads.  Here's the link I promised on the other thread but it might be easier for you to find here:  http://www.inspire.com/groups/lung-cancer-survivors/discussion/number-of-brain-mets-for-gamma-knife/

jalu
Posts: 58
Joined: Jan 2013

...if all works well and we are able to use GK -- it sounds like we still have quality time left with Mother.  I'm going to contend that YOU saved her life from complete deterioration with WBRT.  

The tears are flowing as I write this -- you are an angel lurking -- you've given me hope and something to fight for.  

I'll keep you posted on our progress.  Thanks again -- and again,

janet

 

 

jalu
Posts: 58
Joined: Jan 2013

have looked into it in Little Rock, Arkansas, where my Mother lives.  The treatment center our oncologist uses is CARTI (Central Arkansas Radio Therapy Institute).  I notice CARTI does NOT offer Gamma Knife and that disappoints me, BUT, UAMS (the University of Arkansas for Medical Sciences), also in Little Rock, has a Gamma Knife Center.  So, next week we get an MRI and talk to the oncologist about the results.  We are going to have him refer us (and send her history and MRI) over to UAMS Gamma Knife Center and they will contact us if they feel she is a candidate for Gamma Knife.  I am excited and I will post any updates.

THANK YOU DENNYCEE!

jalu
Posts: 58
Joined: Jan 2013

Like so many others -- the news was not good for Mother.  Oh, I was so psyched to go for the Gamma Knife approach.  Mother's MRI on 2/27 showed 14 tumors (including the five treated in September 2012 with targeted SRS, which were also growing).  As a result, life expectancy is 1 to 2 months if we do nothing -- maybe 6 months with WBRT.  Because of the varied locations, sizes and the need for immediate action, they felt 14 gamma knife "rays" would do perhaps more damage than the weaker whole brain radiation treatments.  In her case they would also have to include treatment with steriods AND anti-convulsants.  

And so back to the "standard barbaric treatment", WBRT.  NOT a cure -- it just adds time.  Death will not be pleasant if we do nothing -- death will not be pleasant with WBRT.  Forgive my french:  WE ARE DAMNED IF WE DO -- WE ARE DAMNED IF WE DON'T.  

Any kind of brain cancer is terminal.  All those out there -- we need to demand more from our oncologists.  "Slash, Burn & Poison" doesn't work for me.  An inspiring book I read while visiting my Mother was "SURVIVING TERMINAL CANCER" by Ben A. Williams, PhD.  Diagnosed with terminal brain cancer in 1995, he is alive and well today with clean MRI's using a unique, practical and logical approach in conjunction with standard slash, burn and poison treatments offered by his oncologist.  He took ingredients to not only enhance his body's acceptance of radiation and chemo, but also making those treatments more effective and perhaps even lessening the side effects.  Ingredients with far less toxcity than radiation and chemo and with minimal/manageable side effects.  A drug cocktail approach -- along with standard treatment -- he is convinced, CURED his cancer!  Whereas the odds of a CURE are basically zero with standard treatment, his rationale was if each ingredient in the cocktail improved 20% to 40% of patients in clinical trials and lab studies (most not recognized by oncologists), then a combination of 6 or so of those ingredients would put the odds of improvement at least above 50%.  Ingredients like Melatonin, PSK, gammo-linolenic acid, etc.  Lots of hints to make standard treatments to work better and more effectively for you.  For instance, something I did not realize -- radiation works by oxidization.  It will work more effectively if you are not taking anti-oxidant vitamins during treatment.  And this author was so right.  Our oncologist "poo-poohed" everything this guy said CURED him (including the advice on anti-oxidants, saying it wouldn't make "that much" difference!).  And yet they push WBRT???!!!???  We need to demand more from our oncologists.  If he were offering some of this advice 

My Mother trusts her doctor and his recommendations and wants treatment, hoping to get better, not worse.  Dear Lord, please help me with what lies ahead.  We are through 4 treatments with 9 more to go...so far so good, but scary nonetheless.

Dennycee -- you've been such a crusader for me and I'm grateful. My Mother is 86, having lived a long, happy and healty life.  I'm prepared to lose her, but I am not prepared for the suffering.  I've learned so much and again, my thanks to you.  I'll be posting to the end. 

 

Jan Wilson
Posts: 4
Joined: Feb 2013

Jalu...

I am in the same position that you are in. My father has stage four lung cance and we just found out that it has gone to his brain. He is opting for the whole brain radiation, 18 treatments, then he is going to be going back on his chemo. He was diagnosed almost 4 years ago with the cancer and was NOT expected to go this long. This is such a set back and he just had a chest tube put in for the fluid build up that won't stop. Reading about the metastasis has made it very difficult to cope with the possible outcome when this have been going so well. My dad is only 59 and has NEVER SMOKED and up until last year was still running 5ks with my 28 yr old brother.

I really don't know how to deal with this. If ANYONE has advice can you please tell me.

dennycee
Posts: 673
Joined: Mar 2011

The hospital where your dad is receiving treatment should offer a caretakers support group.  Also check to see if there are any Gilda's Clubs or Cancer Support Centers near you.  it is very important that you take care of yourself physically and spiritually at this time.  

jalu
Posts: 58
Joined: Jan 2013

I hate it for you.  Your father is too young for brain cancer.  Basically, a death sentence with or without treatment.  My Mother is 86 and has lived a happy and healthy life.  I CAN cope with losing her -- I CANNOT cope with major suffering.  59 is too young.  I will put your father in my prayers.  I am really fighting WBRT and the harsh realities of WBRT.  Our oncologist says, "oh, she will do fine", but my reasearch shows too many HIGH RISKS.  I am going to fight for targeted metastasis treatment as long as we can.  An excellent book if you are interested is Surviving "Terminal" Cancer  by Ben A. Williams, PhD.  Lots of good info on how he managed to CURE his brain cancer and is alive and well today (over 15 years later) -- with clean MRI's.

Keep me posted and I will do the same.  

Thinking of you,

JALU 

Jan Wilson
Posts: 4
Joined: Feb 2013

Thank you so much for your kind words and prayers. I will definately get that book. My fiance's mother, who was a nurse in a cancer ward, suggested "Death and Dying" to try to understand what the process. I don't think that I am ready to read a book like that. We are still staying positive and believe in the power of prayer and positive thoughts. My fiance lost his father to pancreatic cancer 3 years ago, so he understands what I am going through and has been such a blessing to have by my side.

My father had told us when he was diagnosed not to go on the internet and start looking things up. That NO case is the same and he is a true testiment to that. The fact that he has lived with this for almost 4 years when they gave him 6 months is proof. The doctor that he has in Boston said that doing to WBRT would be the best becasue it will get rid of what maybe there but not visible yet. He said that he has had patients go 2 yrs or more without anything coming back. We are saying our prayers that this works and then get him back on his chemo to start on the rest of his body again.

Thank you again for your words of kindess and prayers. I will keep you updated. I have your mother in my prayers as well.

Jan

Jan Wilson
Posts: 4
Joined: Feb 2013

it isn't looking good. my dad woke up this morning excruciating pain and said he was dying. all of his brothers (6) are flying in from around the country. it is only a matter of days we think... they have him on oxycotton and adavan ( my spelling is horrible). he can't hardly hear, and his thought process is very slow. im losing my daddy.

dennycee
Posts: 673
Joined: Mar 2011

Where is his pain?  if it is from the brain mets the radiation should help.  My mom had excrutiating headaches that the WBR helped.  If you are in US get a palliative care doc on board (unlike other countries, palliative care here is not hospice).  Mask about a bollus for pain meds.  It provides a steady subcutaneous dosage of pain med that the patient can give an extra dosage without overdosing.  You twill be in my prayers.  

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

I am praying for you, be strong for you dad.

Jan Wilson
Posts: 4
Joined: Feb 2013

My dad passed away at 130a on Sunday morning. He was ready to go and was at peace with it. No one expected him to go that night. He was resting peaceful, the came in to give him a shot of pain meds. He took a deap breath and was gone. Very quick and peaceful. My thought and prayers are with the rest of you and your families that you will not have to go through this. I love and miss my dad so much. I still can't believe his is gone. Feels like a dream and that I will see him walk through the door at my grams to join the family reunion.

 

Brian Wilson

acostane
Posts: 3
Joined: Feb 2013

Jan, I am Nicki. I am so terribly sorry to hear of your loss. My father has been battling this disease as well since 1999. He is nearly 70 (I'm 29) and he has had another recurrance we just found out about last week. They are suggesting he might not make it, so I am feeling many of the same emotions you might have felt. Your Dad looks like a totally awesome guy and it breaks my heart that any of our Papas who love us so much have to go through this. I am loving my Dad as hard as I can for as long as he's here and for the rest of my own life afterward. It is a tribute to the man he is. I am so glad your Papa had a peaceful passing ... I think my greatest fear for my Dad is that he won't have that. My heart just goes out to you extra-hard because I feel like we're going through a similar thing at the same time. This all feels like a dream to me too. I keep anticipating what it will be like on the "other side" where you are at now and I hope I feel as you seem to, which is grieved but still able to show so much grace and love. My best to you and your family and I hope you have a small measure of peace that at least he will not have to feel pain anymore. 

 

Take care everyone out there.

jalu
Posts: 58
Joined: Jan 2013

Oh Jan,

I've been with my Mother since February 21st -- out of touch with the internet.  I return and am once again connected and I am devastated to read about your loss.  NO FAIR!  I hate this disease.  Our loved ones do not deserve this.  I know that there are glorious plans ahead for your Father's arrival in Heaven and that he is happy once again and free of all suffering.  But we are left here to suffer the loss -- it hurts.

Thinking of you!

janet

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

Dear Jan, be strong God will not leave you now He is always with you holding you in his armas. your dad is with Jesus.

love.

Rosi

 

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