How long is "palliative" care given?

My mom was diagnosed two weeks ago, stage IV nsclc with 4 brain mets. We were told they will do radiation with "palliative" intent....not "curative". So does this mean there is no hope of making past a year? I had hopes that maybe she could "live with cancer" for a few years but after further reading the info given to her by the docs, they are only treating her with "palliative" intent...not "curative". Any clarification or any one else who has been given this prognosis, I would appreciate your feedback. She is /was healthy as a horse...70 and very active...seemed in the prime of her life. After 2 weeks brain radiation she is almost unrecognizable. I have not seen "my mom" since this nightmare started.

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I am so sorry you are going through this. My mom had the same diagnosis as your mom. She finished 15 rounds of whole brain radiation and that seemed to have shrunk her tumors. The saturday after thanksgiving she was taken to the hospital b/c she was unresponsive. She did have pneunomia and they had to vent her to help her breath. A week later she started having uncontrolled seizures. In a way it was kind of a blessing that she was in the hospital heavily sedated when the seizures started. The day after the seizures palliative care/pain management came to talk to me and my dad to pretty much tell us that we are going to have to make some serious decisions and that it was really best to start preparing ourselves. We had to take her off the vent that Friday b/c there was nothing more that could have been done and passed peacefully the next morning. She was diagnosed and then gone within 8 weeks. She was 58 with two new grandbabies born that year. It happened way to fast for us so my only suggestion is to spend as much time as you can with her. Talk to her about everything and anything, ask her any kind of question you have. Tell her you love her as much and as often as you can. My thoughts and prayers are with you as you are going through this awful time with this nasty awful disease.

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My Mum has recently had brain radiotherapy and it takes a while for the side effects to wear off so take it one day at a time - I know it is difficult because I am in a similar situation.

My Mum was diagnosed last March with stage Iv Lung cancer with met to hip - later found mets to spine, ribs and brain which were radiated along with her receiving chemo.

Palliative is a term used when the cancer cant be cured - at stage IV it is advanced but people can live with it for, sometimes many years.

Don;t lose hope - there is every chance that your Mum could make it past a year - positivity really helps.
Your mum has only recently been diagnosed so, if like me you may be really overwhelmed with everything and trying to come to terms with things. My initial response to her diagnoses was (in my head) "she will be gone soon" - but she is still here and fighting. Research as much as you can and don't go Googling prognosis or statistics because they are often not accurate - read posts on here for inspiration instead from people who are going through this terrible illness, or, like us have some one we love fighting it. This website is fantastic and has definitely given me inspiration and hope.

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When my husband was diagnosed- it was already stage 4 with mets to multiple bones and multiple spots in his brain. They did radiation to his brain and his groin (pain in pelvic bone is what took him to the doctor in the first place.). The radiation stopped the pain. We waited 30 days and then they started him on Tarceva (a daily pill). It has been shown to have very good results in people with nsclc who have never smoked. It worked great for 18 months and then we had to start on something else- but he has been doing well for 2 and a half years now. I would look around for a doctor who is willing to fight 'with' your aunt to extend her life. I know how scary this is.. hang in there. You and your family are in my prayers!
BERT

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Palliative care can go on as long as a person needs it, They manage your side affects, pain, etc! It is like blood pressure, diabetes there is no cure, just a way to live with it.

Think positive
I will be praying for your mom

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I am sorry I didn't really answer your question about palliative care. I never heard of them until my mom. They were there to keep her as comfortable and pain free as possible. Just remember Every patient is different and responds to treatments differently. Just think positive thoughts and just always be there for your mom. The doctors were not expecting anything that happened to my mom to happen. Again I am praying for your mom and you as well.

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Thank you all..from the bottom of my heart...really. I am just overwhelmed by the support everyone is offering to complete strangers...man kind is so good and I am honored to be amongst each of you in this journey. I truley gain strength from each of your entries...some good, some bad...but the fear has really been in the "unknown" for me and you are kighting that path for me. God bless each of you. I am truley moved.

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My husband was diagnosed on Nov 2dn 2010 with NSCLC stage IV and multiple brain metastases (17) . He made whole brain radiation and is doing chemo (taxol/carboplatin). Last week he had a CT scan of his brain and it was clear!! It did not show any tumor!!! His lunj tumor has reduced more than 60%. He is doing pretty well and the oncologist says my husband has a very good prognosis. Tell your mom that she must be very positive, attitude is very important and helps a lot. Don't loose hope.

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With stage IV, they rarely say "cure." Palliative doesn't mean no treatment. If she's well enough, she can even get chemo or other treatments. Radiation is usually given to relieve pain or clear an obstruction. Surgery is rarely done in stage IV, though it does happe. So there's always hope. No one knows how long or how well anyone will do, not even the doctors. There are many stage IV survivors here. Do you know what type she has? And where are the mets other than the brain? Hang in there and see how she does after her radiation and give her time to recover. Let us know if we can be of further help. Wishing you all the best. Take care, Judy

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Cat15, I am so thrilled for you! Wow...great news! God is good!

Judy..my mom has adenocarcinoma...quick background I am one of 8 kids and I have only been told it was found in lungs and brain..not sure where the mets are in the brain. There is not much good communication.. no one even knows if its in lymph nodes or adrenal glands...everyone heard "palliative" treatment, not "curative" so besides me, everyone seems to think it is a lost cause and not worth researching options or info. My father is also very sick so it;s just so hard. Thank you for caring.

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Hopegirl,

I'm a little unsure what you meant by:

"After 2 weeks brain radiation she is almost unrecognizable. I have not seen "my mom" since this nightmare started."

Particularly since you say they are not focusing on a cure at this point.

If YOU think that your mom should not be given up on at this point, I wouldn't. But you are the only one who can make that call.

I'm going to give you a link to a similar post that I made a fairly long reply to last week. I recommend that you go research that post - it will at least give you some ideas to think about.

The treatments I suggested there are safe, relatively inexpensive, and have been effective for many cancer patients. If your mom is able to participate in her treatment program, pay particular attention to the "Cellect/Budwig" Protocol. It is recommended for stage IV cancer patients if they have sufficent time remaining to do it for at least 90 days.

Here is the other discussion post:

http://www.inspire.com/groups/lung-cancer-survivors/discussion/alternate-tr eatments-2/

Feel free to email me if you want to talk more about it.

Al

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The following excerpt from http://www.irsa.org/metastatic_tumors.html may provide information as to why your mother is "unrecognizable". My husband turned WBR down and insisted on highly-focused GammaKnife treatments for 14 brain mets, and are very glad he did.

Whole Brain Radiation Therapy (WBRT)
Brain metastases carry an ominous prognosis regardless of primary status or treatment given. The median survival of untreated patients, or those treated with corticosteroids alone to reduce brain edema, is about one month (32). Whole brain radiation therapy (WBRT) is the most widely used method of treating brain metastasis, despite the fact that patients treated this way have an expected survival of only three to four months. Death from recurrent or persistent tumors occurs in about 50% of the patients (12, 29).

The radiosensitivity of the tumor itself is not taken into account when these patients are being treated. Most tumors that metastasize to the brain, such as non-small cell lung, renal, colon, and melanoma are radioresistant [resistant to radiation therapy]. Worse yet, many treating facilities continue to use prophylactic cranial radiation despite the fact that only one study has ever demonstrated a statistically significant increase in life span (20). (Prophylactic radiation therapy is treatment given before lesions have appeared within the brain.)

Significant neurotoxicity has been reported with the use of WBRT. Acute effects include hair loss (alopecia), nausea, vomiting, lethargy, otitis media and severe cerebral edema. Though some of these effects can be transient, dermatitis, alopecia, and otitis media can persist for months after irradiation (23). Chronic effects are even more serious, and these include atrophy, leukoencephalopathy, radiation necrosis, neurological deterioration and dementia (5). Reports of development of severe radiation induced dementia have varied between 11% in one-year survivors (23, 24, 27) to 50% in those surviving two years (7, 23). The time involved in this therapeutic intervention frequently is over two weeks, in itself a burden to many patients (5, 8).

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I just lost my Mom in December after she was diagnosed with cancer in her upper gum ll months ago. She took radiation for 30 days and had surgery to remove what was left. She was unable, following surgery, to open her mouth to eat for 1l months to eat her meals and had a feeding tube inserted in her abdomen for food and medication. The Medical Team decided to operate again to see if they could open her mouth and when they put an incision in her upper lip, down her throat to her right ear, they discovered a hard tumor at the back of her throat and suggested she could take chemo but told her they could not get all the cancer. Mom decided not to take chemo and was home for three weeks and decided herself she wanted to go to a new Palliative Care Hospice that had just opened up as her condition was worsening. We did get her into Palliative Care and she was there only two weeks and 2 days when she succumed. The normal period for people staying in the Hospice is 6 weeks.
Mom did not want to go to a nursing home and we thank God we got her into the new Hospice as she had constant care with nursing checking on her every 15 minutes. They could not do enough for her. There are only 10 beds in this new Hospice and family was able to stay overnight at no charge.They had a lovely big kitchen for family to cook their meals in and anyone could visit at any time. All mom ever wanted was "no pain" and they had to keep upping her medication the last two weeks she was there.

I am currently, for the fourth time, takintg chemo for cancer in my pancreas and liver. It started in 2005 with cancer in the bowel, bladder and liver. I took chemo for 8 months in 2005 and went into remission for a year when cancer was diagnosed in my lymph glands and I took chemo for another 8 months. Following that, cancer was found in my pancreas and liver again and I commenced chemo again for 6 months and had another cat scan which showed the tumor on my liver was increasing in size so I started this cycle of chemo which is treatments 5 days a week. every three weeks until April. I am keeping a positive outlook on this and hoping to go into remission once more. So far I have lost 66 pounds and am happy I had the wieght to lose as I am now down to a size 14 from a size 20. I am feeling quite well, although I have had some after effects such as:
sores in my mouth, tender scalp, nausea, peeling hands, and sores on my legs. Fortunately, I have medication to combat all of these systems so I am quite comfortable.

I pray for all those who have been struck by this terrible disease and hope you will be able to live one day at a time. I have a wonderful Medical Team and family who give me love and support.

Love and prayers to all.
Carol aka Babette

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I have been on palliative care for almost a year. I feel well and am starting my training to be a hospice volunteer today. How long will I live with the cancer that can no longer be treated? No one knows, I plan on living until I die.
Jim

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Jim - you have the right attitude. My husband was diagnosed August 2007 with NSCLC - stage 4 (both lungs) but nowhere else. He had the radiation and chemo and nothing since. BUT - since then developed congestive heart and has COPD. He is getting "comfort care" to keep him out of the hospital and plans on being out and about by Spring. None of us know when our lives will end but today we are alive - keep on keeping on!!
ElaineNY

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I was on palliative care initially and was told it would be only a few months, I am in remission 5 years, and my primary doctor does not feel it is coming back.
There is a chance of no reoccur ace even with palliative care.
So think positive, and think life,, not death.
I wasted too many years waiting to die as they told me I would.
I only recently started looking farther ahead into my life.
Try to make some longer term plans and have faith your mom will be around...If she is and was as healthy as a horse this could be in here genes too.
She may never get bad from the cancer, she will get tired and have some side effects from radiation and chemo, but it will be short lived and go away, don't confuse this with her cancer.
Try not to think all is related to cancer either, it is not always the case.
Good luck, God bless,
Sandy

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I agree with all the positive posts above and would add that palliative care is a term used when they do not believe with the knowledge they have at hand that they can cure someone.

I found out in error in Sep 2008, I never wanted to know really, I never believed my oncologist was able to say how long, but via a mistake with my occupational health at work (heads did roll) , I received a letter outlining that I had 6mths at worse and 12mths at best, to be exact my median survival was 8mths! I thought this is it and took the chemo to buy some months, it failed after 3mths and then I started Tarceva, that nearly knocked me off my perch 150mg far to strong and I spent a week in hospital.

Whilst recuperating I found this site and did not take the 2nd lot of chemo offered. I chose to reduce the dose and do Tarceva again. My oncologist a blinkered man in my opinion (now), of few words did not think I was doing the right thing, but guided by own intuition and what I could see of people on Tarceva herein. I asked him to indulge me....he left the NHS when his contract ended in May 2010, I got a new oncologist who is 100% behind me and reveling in the wonderful results that I have had so far on Tarceva. Hope Springs Eternal....never believe what you hear or fear the worst, one day at a time. Never Stop Believing...no other human being knows when our time is up, they only second guess, and Thank God...sometimes they are wrong! : )

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With only 4brain mets, they may be able to treat those with Eksell Gamma Knife. Not all hospitals have this machine, so you may have to ask for a referral. This procedure only takes 1 day outpatient and it targets the radiation precisely on the mets. For me it was much less fatiguing than the whole brain radiation.

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resonse to mainchancer:

first, thank you for posting that information. i just went over the study, and it was extremely enlightening. anyone considering drawbacks/benefits of whole brain radiation should read it. however, the way you posted the info is a bit misleading. the info is from the radiosurgery association, and they of course have an agenda is downplaying the importance of wbr. it's important to not only read the intro that mainchancer's post was taken from, but from the study itself, which can be accessed thru a link at the top of the page that mainchancer provides the link to. the thrust of the entire study is this: while whole brain radiation has not been proven to improve survivability, it, when done in conjunction with radiosurgery, is far more effective in reducing occurence of brain lesions. the reason this doesn't translate directly into improved survivability is because patients end up dying of their primary cancers. so, if you -- like me -- feel like you can control your primary cancer (lung, here) you are indeed better off attacking your brain mets with both wbr and radiosurgery, such as gamma knife.

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Apologies. I posted that kind of hastily. Let me rephrase so it's more precise and without the typos:

The study mainchancer links to shows that if you are a relatively healthy/strong cancer patient, with your primary cancer under good control, 4 or fewer brain mets, and no mets to other places in your body, you will better control your brain mets with whole brain radiation in conjunction with radiosurgery than you will with radiosurgery alone.

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Hopegirl, I am struggling with the exact same situation as you are. My mom was diagnosed Oct 15, 2010 with Stage IV with mets to the brain as well, 9 to be exact. The Radiation Onc told us she was not a candidate for Gamma because their cutoff was 6. Their reasoning for this is that if there is more than 6 the likelihood is there are more cancer cells lingering and WBR would cover those as well. My mom did 15 WBR treatments which ended the Nov 22, 2010 and I am of the same feeling as you are. I haven't seen "my mom" since she finished treatment either. She is so fatigued and out of sorts it wrenches at my heart every day that I am with her. Last Thur (1/20) she had the Radio Frequency Ablation done to kill the primary lung tumor and the day before she had a 2 month follow up brain MRI done. We met with the Radiation Onc to review the MRI results and were told all of the lesions are stable and some decreasing in size, but there is also a new one that wasn't there before. Though small (.5 cm) I was surprised to hear this being that she did WBR. Anyway, she is being scheduled in the next few wks to do Gamma Knife on the new lesion and he said he will hit the other lesions that are stable but haven't decreased any just as a precautionary measure. I agree with you that all of this is extremely overwhelming. Keep the faith and know she can live with cancer as many here on Inspire has proven. Please keep us updated and if you ever need to talk being we are experiencing the same situation with our moms, you can email me anytime. Hang in there!
Blessings,
Mia

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