Mother with stage IV lung cancer with mets to the brain x4~what to expect, no more treatment

DawnBush

My mom, aged 64, was diagnosed in Nov. of 2011 with Stage IV adenocarcinoma with mets to the brain.  She intially had the brain tumor removed, received chemo, and had radiation on her lung tumor.  In October of 2012 a second brain tumor was discovered and removed.  4 weeks later a third tumor was found, in the exact spot of the second tumor, and was removed and she had that area radiated.  On Wednesday we recieved the news that a third tumor is in the same spot again.  Due to her health, and the results from the last surgery(she almost didn't make it through), the decision has been made that no further surgery or chemo/radiation will be done.  I am her caregiver and will be moving in with her when she is no longer able to care for herself.  I am wondering what to expect and how this progresses.  She already has some speech and short term memory trouble and also the headaches and dizzyness along with it.  

 

So scary, I don't want to see her suffer anymore.  I am looking to be prepared to what is to come and how to make her as comfortable as possible.  We have already contacted Hospice.

 

Thanks for listening!

jalu

WHAT IS AHEAD?

My Mother is essentially in the same place and I am scared to think of what is ahead.  How brave your Mother has been to get through surgery, chemo and radiation.  These are not easy treatments -- HARSH side effects and drugs.  I've been fortunate in that targeted radiation to the lung, took care of the lung, but it is the metastasis to the brain that will kill her.  Like your Mother -- everytime we get an MRI, more tumors are showing.  Most recently, with more tumors showing they told her she has one to two months to live without further treatment and maybe six months more with Whole Brain Radiation Therapy (which is what she opted for).  

At the point they see the tumors growing/multiplying and are recommending further treatment seems to be the point where -- if you do nothing -- you have maybe one to two months left to live.  Maybe that gives you some idea of the timeline.  I SAY everyone is different though and I would never give up hope that my Mother would "break that mold" and live for years.

AND your questions about what is ahead.  I want to say that this site has been so helpful to me in coping/understanding/researching my Mother's condition.  There is reference to one website that is very depressing, but also very helpful in telling me what is ahead...for patients with brain cancer.  www.brainhospice.com.

We are both at a hard time in our lives -- where there is basically no hope.  I do so hate posts like this:  dying of brain cancer -- how long? -- what is ahead? because the answer is never pleasant.  I'm so very sorry.  Keep me posted on your "progress" and I will do the same.  At this time Mother is through 10 sessions of WBRT with three to go.  Steriods are hard on her.  She is sleeping 20 hours a day.  I'm feeling that if the brain cancer doesn't kill her -- the WBRT will.  "Damned" if we do -- "damned" if we do not.  Either way -- not pleasant.  How depressing and again, I'm sorry.

 

sleepless in jersey

jalu said:

WHAT IS AHEAD?

My Mother is essentially in the same place and I am scared to think of what is ahead.  How brave your Mother has been to get through surgery, chemo and radiation.  These are not easy treatments -- HARSH side effects and drugs.  I've been fortunate in that targeted radiation to the lung, took care of the lung, but it is the metastasis to the brain that will kill her.  Like your Mother -- everytime we get an MRI, more tumors are showing.  Most recently, with more tumors showing they told her she has one to two months to live without further treatment and maybe six months more with Whole Brain Radiation Therapy (which is what she opted for).  

At the point they see the tumors growing/multiplying and are recommending further treatment seems to be the point where -- if you do nothing -- you have maybe one to two months left to live.  Maybe that gives you some idea of the timeline.  I SAY everyone is different though and I would never give up hope that my Mother would "break that mold" and live for years.

AND your questions about what is ahead.  I want to say that this site has been so helpful to me in coping/understanding/researching my Mother's condition.  There is reference to one website that is very depressing, but also very helpful in telling me what is ahead...for patients with brain cancer.  www.brainhospice.com.

We are both at a hard time in our lives -- where there is basically no hope.  I do so hate posts like this:  dying of brain cancer -- how long? -- what is ahead? because the answer is never pleasant.  I'm so very sorry.  Keep me posted on your "progress" and I will do the same.  At this time Mother is through 10 sessions of WBRT with three to go.  Steriods are hard on her.  She is sleeping 20 hours a day.  I'm feeling that if the brain cancer doesn't kill her -- the WBRT will.  "Damned" if we do -- "damned" if we do not.  Either way -- not pleasant.  How depressing and again, I'm sorry.

 

To Dawn and Jalu

I am so very sorry that you both have to go through this...it is going to be a long hard road. As you both know I have just lost my mom on the 2nd and battled a bumpy road of 2 years and 2 mos. and I  too was her caregiver. Please feel free to ask me anything you want to know...I too had no idea what to expect myself, Dad and I just did our own guessing, hospice didn't really tell us what to expect. They did help with maintaining any break through pain, supplies, support for me, mom also didn't do much talking, but enjoyed listening to our conversations and they also gave us a little blue book that helped us on what to expect.

Hugs to you both

God Bless

Sleepless 

My Mom who’s 62 now. Has been DX 1/3/11 NSCLC (Adeno) Triple mutation neg. 10 days of WBR and brain surgery 1/11, started Carboplatin/Alimta/Zameta and B12, showed 1 tumor growing switched TX to Taxotere/Zameta 5/11 too many side effects, tumors have grown, port put in 8/11, thoracenteses x2 neg.- CA, pleurodesis on both lungs 8/11 & 10/11. Gemzar 8/11 growth and too many side effects.11/16/11 started Navelbine. 5//12 scans showed some growth to chest wall, switch to Topotecan. 7/12 progression with several brain mets, poss lepto. Tarceva 7/12.

 

DawnBush

Thank you

Thank you both for the replies.  They have said, on average, a person will live approx. 6 months.  But my mother, through all of this, has exceeded everyones expeactations.  That is the same time-line they gave us in November of 2011 with the initial diagnosis and she is still here and still herself.  I am so very sorry for everyone that has to go through this, patients and caregivers/family alike.  As of right now, mom is doing well and still living on her own.  She is so very intolerant to meds that we are trying to get the correct times and dosages so as to not make her too sleepy or too hyper.  Steriods are a must but they have decreased the dosage to only three times a day.  She also only takes OTC tylenol for pain. That seems to be helping a bit.  Her spirits are great, better than all of ours I believe.  Breaks my heart that this, eventually, will take her life.  I do, however, hold out hope that she will be one of those that breaks the mold too and proves the doctors wrong.    I will try and keep you updated on her progress, and mine as well.

 

Prayers are with all of you!

Dawn 

suprco

Playing the waiting game

Hi everyone, I found this on-line while googling anything I can to try to understand this cancer beast. Like the other posters, my mum, 69, was diagnosed with stage 4 adenocarcinoma in September of this year. I was having a conversation with her on the phone, and she was making no sense at all. I took her to the hospital thinking she had a stroke. Imagine my shock at finding out that she was full of cancer.

 

They started off with WBRT, 15 times, then Moved on to a new treatment called cyber knife. That's a targeted radiation right into the brain tumors. The side effect is terrible fatigue, short term memory loss, and it creates a waste matter that will more than likely have to be removed surgically, due to the brains inability to flush the area out itself. She was on a very high dose of steroids, but has tapered, and will continue to taper until she's off. The brain tumors were initially inoperable due to the area they inhabited. The largest tumor is 2" in diameter, but it sits right on the speech centre. Operating would make her mute, and the Dr wasn't happy with that possible outcome.

 

We are finally coming to the point where the lung will be treated. We just saw the oncologist on Monday, and he basically said that IF treatment is possible, he won't start until next year because she should enjoy Christmas. The only chemo option is the aggressive one that makes her very ill. Mum made it clear she wants quality over quantity, she does not want to spend the rest of her life being I'll, unless putting up with chemo will substantially prolong her life. The Dr basically said he will probably not do chemo, but perhaps some radiation on the lung is the way to go for quality sake.

 

I am her caregiver, I spend every day with her, cooking, cleaning, doing everything. I'm happy to be spending the time. I have no idea what to expect in the coming months. I understand adenocarcinoma is fairly slow growing, but the fact that it's in the brain now is the bad part. Once it gets in there, from what I understand so far, it's relentless. It just doesn't give up. It doesn't sound like the actual lung cancer will kill her, it's the home it's made for itself in the brain that's the real threat.

They've given her about 6 more months, but that's just a median guess. What can I expect going forward? I'm scared, I have no idea, and in that aspect, the drs haven't been terribly helpful. I keep a brave face on for her, but I do think about it a lot, making sure that everyday she has is a great day. I always wonder, how long will that last? Is there anyone out there that has been through this to the end? Either from passing or through remission? What do I look for? How often are drs right? What are the effects of i.v. chemo? I feel a bit lost, I want to understand much as possible.

 

Thanks so much for reading.

 

dennycee

suprco said:

Playing the waiting game

Hi everyone, I found this on-line while googling anything I can to try to understand this cancer beast. Like the other posters, my mum, 69, was diagnosed with stage 4 adenocarcinoma in September of this year. I was having a conversation with her on the phone, and she was making no sense at all. I took her to the hospital thinking she had a stroke. Imagine my shock at finding out that she was full of cancer.

 

They started off with WBRT, 15 times, then Moved on to a new treatment called cyber knife. That's a targeted radiation right into the brain tumors. The side effect is terrible fatigue, short term memory loss, and it creates a waste matter that will more than likely have to be removed surgically, due to the brains inability to flush the area out itself. She was on a very high dose of steroids, but has tapered, and will continue to taper until she's off. The brain tumors were initially inoperable due to the area they inhabited. The largest tumor is 2" in diameter, but it sits right on the speech centre. Operating would make her mute, and the Dr wasn't happy with that possible outcome.

 

We are finally coming to the point where the lung will be treated. We just saw the oncologist on Monday, and he basically said that IF treatment is possible, he won't start until next year because she should enjoy Christmas. The only chemo option is the aggressive one that makes her very ill. Mum made it clear she wants quality over quantity, she does not want to spend the rest of her life being I'll, unless putting up with chemo will substantially prolong her life. The Dr basically said he will probably not do chemo, but perhaps some radiation on the lung is the way to go for quality sake.

 

I am her caregiver, I spend every day with her, cooking, cleaning, doing everything. I'm happy to be spending the time. I have no idea what to expect in the coming months. I understand adenocarcinoma is fairly slow growing, but the fact that it's in the brain now is the bad part. Once it gets in there, from what I understand so far, it's relentless. It just doesn't give up. It doesn't sound like the actual lung cancer will kill her, it's the home it's made for itself in the brain that's the real threat.

They've given her about 6 more months, but that's just a median guess. What can I expect going forward? I'm scared, I have no idea, and in that aspect, the drs haven't been terribly helpful. I keep a brave face on for her, but I do think about it a lot, making sure that everyday she has is a great day. I always wonder, how long will that last? Is there anyone out there that has been through this to the end? Either from passing or through remission? What do I look for? How often are drs right? What are the effects of i.v. chemo? I feel a bit lost, I want to understand much as possible.

 

Thanks so much for reading.

 

Welcome

You've been through so much already.  My moms stage 4 adeno was discovered when she had trouble with words and severe headaches, it turned our hers had metasticized from the lung.  Because she was not able to do chemo because of other existing diseases (comorbidity).  They did WBR to relieve the pain and she survived 4.5 months of the 6 they gave her. 

The chemo option they are discussing sounds likely to be cisplatin and etopicide.  This is the same cocktail I had when my stage 4 adeno was discovered three years ago.  At that time I was told I might survive ten months with treatment.  My point is that there is no sure way to predict survival.  The survival rate is based on hundreds of 1000s and cannot predict accurately anyone's survival.  They may tell you that 18% may live 5 yrs but remember this- if you fall into that 18%, your chances now become 100%.   

Keep her well hydrated and nourished to increase her chances and her quality of life.  As hard as this is for you to accept do take a day or two off now and then because you are going to need to maintain your physical and mental health to give her the best possible care.  

Postponing treatment until after the holidays should not make much of a difference.  Make the most of every moment.  

rdn2blazer

dennycee said:

Welcome

You've been through so much already.  My moms stage 4 adeno was discovered when she had trouble with words and severe headaches, it turned our hers had metasticized from the lung.  Because she was not able to do chemo because of other existing diseases (comorbidity).  They did WBR to relieve the pain and she survived 4.5 months of the 6 they gave her. 

The chemo option they are discussing sounds likely to be cisplatin and etopicide.  This is the same cocktail I had when my stage 4 adeno was discovered three years ago.  At that time I was told I might survive ten months with treatment.  My point is that there is no sure way to predict survival.  The survival rate is based on hundreds of 1000s and cannot predict accurately anyone's survival.  They may tell you that 18% may live 5 yrs but remember this- if you fall into that 18%, your chances now become 100%.   

Keep her well hydrated and nourished to increase her chances and her quality of life.  As hard as this is for you to accept do take a day or two off now and then because you are going to need to maintain your physical and mental health to give her the best possible care.  

Postponing treatment until after the holidays should not make much of a difference.  Make the most of every moment.  

Don't give up hope...

   As has been said, it's going to be a long tough road. I'm 46, last year just 6 months after my mom passed away I had stage 4 lung cancer that matastasized to my brian, non of which I knew about. That is until I passed out in the shower getting ready for work one Saturday morning and nearly died. After getting to my local hospital emergency and having a bunch of tests done they found the brain tumor first. Then I was transfered to UCLA brain tumor center, they found the primary was actually the lung cancer. I had 7 1/2 hours of brain surgery to remove the tumor on May 14th, just two days before my girlfriend of 15 years birthday. Then about a month and a half later I had 1/3 of my right lung removed in a 7 hour surgery. My 3 hour Lymph Node biopsy surgery were clear thank god. I came as close to dieing as one could I believe just about. My doctors all said I should have died from the massive brain swelling.

 

    Bottome line, I've survived. I am alive and doing very well. I was back to work 6 months to the day, from ther day I passed out. May 5th I passed out, Nov 5th I was back at work. Been back for over a year now. I have some Necrosis issues they may have to be delt with, with possibly more brain surgery. They are just keeping at eye on it now with frequent MRI's. No growth so it's not a new tumor re-growing. Still scary, but nothing I can do about it. SO I live like I never had a thing. I still feel plenty of nerve pain from the surgeries don't get me wrong. I still hurt daily from one thing or another. But I survived so far up to this point. I don't plan on going anywhere any time soon. If I go it'll be kicking and screaming thats for darn sure.  All I can say to the OP is your mom need to fight for her life. I pray for her and hope her and your family the best. Good luck.