lung cancer with mets to brain

telehelen

My wonderful son started with stage 3b then 4 lung ca non small cell 15 months are he went to buston to be operated on by Dr Morse who could not do anything.  Two  weeks later he was in remission Now last week he had a PET and had a gulfball sized tumor r frontal lobe of the brain which was wholly removed a weeks ago and he still has a small active tumor in L upper lobe of his lung.  They want to do whole brain radiation followed by another round of chemo.  You would never know that he is sick looks healthier thatI do Does any one have any suggestioons length of life span etc please respond Helen Thansk

dennycee

How is he doing?

Just realized that no one had responded to you.  So sorry and even more sorry you have to go through this and that he has to do this. 

jowilson

Just here for the support -

Just here for the support - so sorry as well. I think it really depends on every person. Have you spoken with your doc? Or asked in any other forums? Let me know if you want me to point you to a helpful forum. We're all here to help. You could also see what docs have to say here
bit.ly/VmZkTj
Sending my prayers to you and your wonderful son

slb1976

Praying for your

Praying for your son. 

 

 

 

 

Boombeen

If it was me

I was diagnosed with lung cancer that went to the brain.  That was 2 1/2 yrs ago. I underwent Cyberknife.  I was doing fine until 2 wks ago.  Rushed to the ER with swelling on the brain.  Shot up with Steroids & went home.  Docs don't know what is causing the swelling.  Is it another tumor or radiation neucrosis? The only way to know for sure, is to cut open my head & look around. As far as I'm concerned, I think I'll just take my chances & go with life's flow.  It is what it is! There is no magic bullet.

 

jalu

Whole Brain Radiation Therapy (WBRT)

In March 2012, my Mother was diagnosed with lung cancer that was treated with cyberknife, but not before it metastasized to the brain.  The reality of a metastasis to the brain is generally a fast ticket to death.  It is NOT curable.  WBRT will add time (on average a few months), but death is imminent WITH WBRT or WITHOUT WBRT.  The treatment itself is harsh -- killing healthy brain cells as well as the diseased cells.  Common side effects are extreme fatigue -- spending days in bed -- loss of hair -- nausea and vomiting.  Because they cannot predict which healthy cells to kill and which ones to keep, loss of function (speech, walking, hearing, vision, etc.) is common. The drugs are harsh.  If you are lucky enough to recover from the treatments, you die (the additional months of life you got from the treatment were spend suffering from the side effects in bed).  WBRT is not a cure.

Your son is young -- too young to die.  My Mother is 86 having lived a healthy, happy life.  Your prognosis with WBRT may be a lot brighter than with my Mother.  My only advice is to make sure you understand WBRT before you jump in.  Mother's oncologist said he has WBRT patients alive and well up to two years after the treatments which is encouraging, but he also said that because it is not a cure, he has found when the cancer returns it returns with a vengence.  Because -- RIGHT NOW -- Mother is doing so well, we have chosen at this time, NOT to do WBRT.  The doctors told us a metastasis grows rapidly and we should begin to see SOME impact of the cancer in a matter of months.  At that time, we may change our minds, but as of today, we are letting her enjoy her life and independence.

Not a pretty picture.  And I'm so sorry.  It hurts me -- METASTASIZED BRAIN CANCER (AND BRAIN CANCER IN GENERAL) IS NOT CURABLE.  They offer surgery, chemo and radiation.  Then surgery, chemo and radiation again -- a vicious cycle of horrible treatments -- none of which are a cure.  It will come back.  I do believe many patients die from these awful treatments -- fighting -- and I understand the will to fight, but they die anyway -- having suffered more from the treatments themselves.  Either way it will not be pleasant to watch someone die from brain cancer.

Your son is in my prayers.  Be strong and listen to the doctors "with a grain of salt".  They are offering what "help" they can and what they know.  I've just found that they are not good at informing us of "the realities and high probabilities suffering" with WBRT.  They hope you can get a "few more years", but the reality is that WBRT only adds a "few more months" of life.  Good luck to you and your son.  He sounds so healthy (and happy) today -- RIGHT NOW.  What a blessing.  

 

jeannie4802

jalu said:

Whole Brain Radiation Therapy (WBRT)

In March 2012, my Mother was diagnosed with lung cancer that was treated with cyberknife, but not before it metastasized to the brain.  The reality of a metastasis to the brain is generally a fast ticket to death.  It is NOT curable.  WBRT will add time (on average a few months), but death is imminent WITH WBRT or WITHOUT WBRT.  The treatment itself is harsh -- killing healthy brain cells as well as the diseased cells.  Common side effects are extreme fatigue -- spending days in bed -- loss of hair -- nausea and vomiting.  Because they cannot predict which healthy cells to kill and which ones to keep, loss of function (speech, walking, hearing, vision, etc.) is common. The drugs are harsh.  If you are lucky enough to recover from the treatments, you die (the additional months of life you got from the treatment were spend suffering from the side effects in bed).  WBRT is not a cure.

Your son is young -- too young to die.  My Mother is 86 having lived a healthy, happy life.  Your prognosis with WBRT may be a lot brighter than with my Mother.  My only advice is to make sure you understand WBRT before you jump in.  Mother's oncologist said he has WBRT patients alive and well up to two years after the treatments which is encouraging, but he also said that because it is not a cure, he has found when the cancer returns it returns with a vengence.  Because -- RIGHT NOW -- Mother is doing so well, we have chosen at this time, NOT to do WBRT.  The doctors told us a metastasis grows rapidly and we should begin to see SOME impact of the cancer in a matter of months.  At that time, we may change our minds, but as of today, we are letting her enjoy her life and independence.

Not a pretty picture.  And I'm so sorry.  It hurts me -- METASTASIZED BRAIN CANCER (AND BRAIN CANCER IN GENERAL) IS NOT CURABLE.  They offer surgery, chemo and radiation.  Then surgery, chemo and radiation again -- a vicious cycle of horrible treatments -- none of which are a cure.  It will come back.  I do believe many patients die from these awful treatments -- fighting -- and I understand the will to fight, but they die anyway -- having suffered more from the treatments themselves.  Either way it will not be pleasant to watch someone die from brain cancer.

Your son is in my prayers.  Be strong and listen to the doctors "with a grain of salt".  They are offering what "help" they can and what they know.  I've just found that they are not good at informing us of "the realities and high probabilities suffering" with WBRT.  They hope you can get a "few more years", but the reality is that WBRT only adds a "few more months" of life.  Good luck to you and your son.  He sounds so healthy (and happy) today -- RIGHT NOW.  What a blessing.  

 

Toxic Treatments?

I read your post and I've had similar questions about the radiation, chemo, blow draws, more chemo, no hair, growing body pains...and I realize this circle may not end, and it may not end the cancer.

Does this cancer ever just go away? If Stage 4 lung cancer is not curable, does going to all the appointments and scans and radiation and hair loss and nausea really help? Three hours of chemo and sleeping for 13 hours in a row is detrimental to life.  Do some people choose no treatment as their treatment?

Jasper County Native

Gamma Knife

While we are still "newbies" so to speak.  My wife had 2 brain mets.  She is nearly 5 months post-op on the 25mm one near her brain stem that the surgeon removed, and nearly 3 months post Gamma Knife treatment for the smaller 7mm one in her cerebrum.  They also gave a dose to the site where the large one was removed.

Everyone has to make their own decisions with their doctor, but after reading the literature about WBR, my wife decided against it even though it was recommended.  So far, her small tumor is shrinking significantly, there is no new growth where the other was, and there are no new tumors in her brain.  I understand that this is still early, but we are very optimistic.

I wish you well.

God hears prayers!  Really!

May He bless you.

Ex_Rock_n_Roller

jeannie4802 said:

Toxic Treatments?

I read your post and I've had similar questions about the radiation, chemo, blow draws, more chemo, no hair, growing body pains...and I realize this circle may not end, and it may not end the cancer.

Does this cancer ever just go away? If Stage 4 lung cancer is not curable, does going to all the appointments and scans and radiation and hair loss and nausea really help? Three hours of chemo and sleeping for 13 hours in a row is detrimental to life.  Do some people choose no treatment as their treatment?

"Do some people choose no treatment as their treatment?"

Yes, and I would honor that choice. But some people want to know they're doing everything they can possibly do, come what may. I tend to fall in the "I'll try anything once" camp. If, on trying, it seemed like the investment wasn't worth the payoff, I'd probably call it quits. Luckily, I haven't yet quite been there, most recently having been bailed out by the ALK mutation

dennycee

jalu said:

Whole Brain Radiation Therapy (WBRT)

In March 2012, my Mother was diagnosed with lung cancer that was treated with cyberknife, but not before it metastasized to the brain.  The reality of a metastasis to the brain is generally a fast ticket to death.  It is NOT curable.  WBRT will add time (on average a few months), but death is imminent WITH WBRT or WITHOUT WBRT.  The treatment itself is harsh -- killing healthy brain cells as well as the diseased cells.  Common side effects are extreme fatigue -- spending days in bed -- loss of hair -- nausea and vomiting.  Because they cannot predict which healthy cells to kill and which ones to keep, loss of function (speech, walking, hearing, vision, etc.) is common. The drugs are harsh.  If you are lucky enough to recover from the treatments, you die (the additional months of life you got from the treatment were spend suffering from the side effects in bed).  WBRT is not a cure.

Your son is young -- too young to die.  My Mother is 86 having lived a healthy, happy life.  Your prognosis with WBRT may be a lot brighter than with my Mother.  My only advice is to make sure you understand WBRT before you jump in.  Mother's oncologist said he has WBRT patients alive and well up to two years after the treatments which is encouraging, but he also said that because it is not a cure, he has found when the cancer returns it returns with a vengence.  Because -- RIGHT NOW -- Mother is doing so well, we have chosen at this time, NOT to do WBRT.  The doctors told us a metastasis grows rapidly and we should begin to see SOME impact of the cancer in a matter of months.  At that time, we may change our minds, but as of today, we are letting her enjoy her life and independence.

Not a pretty picture.  And I'm so sorry.  It hurts me -- METASTASIZED BRAIN CANCER (AND BRAIN CANCER IN GENERAL) IS NOT CURABLE.  They offer surgery, chemo and radiation.  Then surgery, chemo and radiation again -- a vicious cycle of horrible treatments -- none of which are a cure.  It will come back.  I do believe many patients die from these awful treatments -- fighting -- and I understand the will to fight, but they die anyway -- having suffered more from the treatments themselves.  Either way it will not be pleasant to watch someone die from brain cancer.

Your son is in my prayers.  Be strong and listen to the doctors "with a grain of salt".  They are offering what "help" they can and what they know.  I've just found that they are not good at informing us of "the realities and high probabilities suffering" with WBRT.  They hope you can get a "few more years", but the reality is that WBRT only adds a "few more months" of life.  Good luck to you and your son.  He sounds so healthy (and happy) today -- RIGHT NOW.  What a blessing.  

 

Brain mets not a ticket to death

Jalu, 

Brain mets are not a short ticket to death.  My friend G over at inspire.com has had two rounds of lung to brain mets and has successfully rid himself of them by way of gamma knife twice.  Most recently in 2000. Yep that's right.  Almost 13 years ago.  Check the site out- he goes by stage4survivor.  Please help us change the perception that stage four lung cancer is a death sentence. 

dennycee

jeannie4802 said:

Toxic Treatments?

I read your post and I've had similar questions about the radiation, chemo, blow draws, more chemo, no hair, growing body pains...and I realize this circle may not end, and it may not end the cancer.

Does this cancer ever just go away? If Stage 4 lung cancer is not curable, does going to all the appointments and scans and radiation and hair loss and nausea really help? Three hours of chemo and sleeping for 13 hours in a row is detrimental to life.  Do some people choose no treatment as their treatment?

Welcome to theACS.org website

hi

i was dx with stage four lung cancer and told I had ten to fifteen months.  That was 28 months ago.  I did not have 35 radiation treatments, four rounds of chemo and three surgeries to sit or lay down in front of the tv set.  I have traveled to Seattle, Portland, Vegas, Florida and around my home state of Michigan.  I volunteer to work tables at community events.  Lots of free tickets that way. I take exercise class twice a week. I took jewelry making classes and I am now selling my jewelry.  

This summer I will be visiting my brother in Maine, my niece in DC and my aunt in Myrtle Beach.  My stamina and strength are not what they used to be but that's okay.  There have been a few really bad days but they pass.  

Xiaowang

jeannie4802 said:

Toxic Treatments?

I read your post and I've had similar questions about the radiation, chemo, blow draws, more chemo, no hair, growing body pains...and I realize this circle may not end, and it may not end the cancer.

Does this cancer ever just go away? If Stage 4 lung cancer is not curable, does going to all the appointments and scans and radiation and hair loss and nausea really help? Three hours of chemo and sleeping for 13 hours in a row is detrimental to life.  Do some people choose no treatment as their treatment?

It is curable!
My cousin still lives after 10 years with stage 4! With a spread cancer came out from his eye.He had 7 chemo "high dosages"and ate very spice food . He gained 20 pounds after 7 chemo.he said 70%was his will.30% is meds. He smoke during the chemo!

After chemo he is taking Iressa for 10 years. First 6 years one pill a day. Then one for two days or three days. He checks his CEA REGULARLY. HIS DOCTOR SAID HE COULD STOP IRESSA. HE DOES NOT AGREE with it HE IS RIGHT AS ONE OF MY RELATIVEs, WHOSE FAMILY THOUGHT SHE WAS CURED. NO. the lung CANCER CAME BACK AFTER 11 years! She passed away at her 80s having 12 years good life after her surgery

Xiaowang

Jasper County Native said:

Gamma Knife

While we are still "newbies" so to speak.  My wife had 2 brain mets.  She is nearly 5 months post-op on the 25mm one near her brain stem that the surgeon removed, and nearly 3 months post Gamma Knife treatment for the smaller 7mm one in her cerebrum.  They also gave a dose to the site where the large one was removed.

Everyone has to make their own decisions with their doctor, but after reading the literature about WBR, my wife decided against it even though it was recommended.  So far, her small tumor is shrinking significantly, there is no new growth where the other was, and there are no new tumors in her brain.  I understand that this is still early, but we are very optimistic.

I wish you well.

God hears prayers!  Really!

May He bless you.

Did anyone have paclitaxel 135 mg plus dox for chemo

I was diagnosed with stage 1b, have not started my chemo. I really appreciate your input. Xiaowang

carolava

prayers

I haven't been on the boards for awhile.  I'll be praying for you son and for you. Blessings.

dennycee

Xiaowang said:

Did anyone have paclitaxel 135 mg plus dox for chemo

I was diagnosed with stage 1b, have not started my chemo. I really appreciate your input. Xiaowang

Hi Xiaowang and welcome to the ACS site.

So sorry you are going through this.  It sounds as though your family has gone through this too many times.  I am glad to hear that yours was caught early.  I have not been through the chemos you have but I have a couple questions.  Is your cancer non small cell? If yes, is it adenocarcinoma or squamous or large cell?  Did they do genetic testing on it?