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Old 02-13-2008, 09:05 AM   #1
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summer2008 HB User
New Here - Mom SCLC - No Treatment - 5th Month

Hi all,

I am new here but have been reading your posts for awhile now.

My mother was diagnosed at the beginning of October 2007 with limited stage small cell lung cancer. For multiple reasons, she chose to not pursue any treatment. She is 81 years old, has a relatively poor performance status, and smoked for 60 years (quit last summer prior to her diagnosis).

Even though she has sclc and chose no treatment, she has experienced a slow decline over the past 4+ months. Originally, her oncologist gave her 2-3 months to live, and now she has moved into her 5th month and we are amazed that she is still with us this far out in time.

She now experiences pretty much constant pain in her back/chest, shortness of breath, constipation, and sleeps a good portion of the day. She has no interest in food and eats very little (although friends and family try to force her to eat), and she has lost a significant amount of weight over the past months.

She lives in the special needs unit of an assisted living facility, is on hospice care, and refuses to take any pain medications. She takes a med for rapid heart rate (typically 120+ per minute), and a sleeping pill at night, along with an anxiety pill. Her blood pressure is in the normal range. I live about 1 1/2 hours away so I only get to go see her about once a week.

She had a brief stay in the hospital in early January and her chest x-ray showed that the left lung was completely full of the cancer. Nothing (at that time) was showing in the right lung.

I am just wondering if anyone has any experience with a patient having sclc, who chose no treatment, and who lived past 5 months. She's definitely still sick and continues to decline slowly, so we know she is not in remission of any kind.

Any thoughts or comments are welcomed. And thanks for reading.

Summer

 
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Old 02-13-2008, 12:25 PM   #2
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Re: New Here - Mom SCLC - No Treatment - 5th Month

Sweetheart

i hate to say it if you mother is refuseing to eat she will not last much longer. you need to go see her as much as you can.

 
Old 02-13-2008, 04:28 PM   #3
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Re: New Here - Mom SCLC - No Treatment - 5th Month

Honey, My husband had lung cancer and when he stopped eating he didn't last long. He did have Hospice care and took pain meds, also had chemo & radiation. he did complain of backaches & I ask the Dr. if we could do an MRI. It turned out he had cancer of the spine too. It's a sad thing when this starts spreading. Go see your mom every chance you get and see if she will take pain meds. Theres no shame in taking them. My husband slept about 20 hours a day.
I do work for Hospice now and they are great with patients.
Fancylady

 
Old 02-13-2008, 06:44 PM   #4
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kayla000 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

My mom was 79 years old when she was diagnosed in July 2006 with lung cancer and had the upper right lobe removed in September 2006. We did not opt for any chemo at that time She dev'p brain METS in Nov 2006 of that same year. The doctors gave her 6 months to live. We consulted with a neurosurgeon who felt she could benefit from Gamma knife (cyberknife). She had a few treatments and even had one tumor in her brain surgically removed. She did pretty well so far. Currently, she is 80 years old and will be 81 next month. She is declining depite her rehab program but, she is still hanging in as best as she can. She has a lot of swelling in her brain as a result of one tumor that is aggravating her brain tissue. This tumor has affected her mood and her speech patterns. She has recurrent seizures but has no pain. She is still trying to fight this battle and I am proud to say that she is still alive despite all the odds.

I hope the best for your mom. My mother went through a period of sleepiness and poor appetite. It seems that medications were the culprit.

 
Old 02-13-2008, 10:36 PM   #5
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carol1961 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

Quote:
Originally Posted by summer2008 View Post
Hi all,

I am new here but have been reading your posts for awhile now.

My mother was diagnosed at the beginning of October 2007 with limited stage small cell lung cancer. For multiple reasons, she chose to not pursue any treatment. She is 81 years old, has a relatively poor performance status, and smoked for 60 years (quit last summer prior to her diagnosis).

Even though she has sclc and chose no treatment, she has experienced a slow decline over the past 4+ months. Originally, her oncologist gave her 2-3 months to live, and now she has moved into her 5th month and we are amazed that she is still with us this far out in time.

She now experiences pretty much constant pain in her back/chest, shortness of breath, constipation, and sleeps a good portion of the day. She has no interest in food and eats very little (although friends and family try to force her to eat), and she has lost a significant amount of weight over the past months.

She lives in the special needs unit of an assisted living facility, is on hospice care, and refuses to take any pain medications. She takes a med for rapid heart rate (typically 120+ per minute), and a sleeping pill at night, along with an anxiety pill. Her blood pressure is in the normal range. I live about 1 1/2 hours away so I only get to go see her about once a week.

She had a brief stay in the hospital in early January and her chest x-ray showed that the left lung was completely full of the cancer. Nothing (at that time) was showing in the right lung.

I am just wondering if anyone has any experience with a patient having sclc, who chose no treatment, and who lived past 5 months. She's definitely still sick and continues to decline slowly, so we know she is not in remission of any kind.

Any thoughts or comments are welcomed. And thanks for reading.

Summer

Hi Summer...I am so sorry what your mom is going through....I lost both my Dad (advanced nslc) and just recently my mom (extensive sclc)....sclc is much more aggressive and from what we were told...not curable...at limited stage and some lucky extensive stage patients...with chemo...it can go in remission...but will most definitely return...but then there are the real survivors...many you can read about here that have had sclc w/o treatment and survive much longer than any medical text book would ever give them...My mom's should have been killed her sooner than my dad ..but Dad died3 months after diagnosis...and mom died6 mos after diagnosis...and even when she went down hill quickly...it was a suprise to us...as she had been doing pretty well. I work in Assisted living so glad you can feel comfortable with that 24/7 support if you can't be there every day...and hospice will ensure she is comfortable...unfortunately my experience...with my Dad and more importantly my Mom as she has sclc...it sounds w/ the pain and constipation...loss of weight...loss of appetite...like the cancer is spreading quickly...and only your mom...with her own life will...an God would be able to predict...but I would spend as much time as possible with her if you are able...it can coome more quickly than anyone can anticipate...my Mom was only 1 week...and very unexpected...I hesitated sending this...as i wanted to reaasure you...give you hope for a lot of time...and you may still have that....but from my own personal experience...i needed to share...as i wouldn't want you to miss any special time w/ your mom...there is always hope...faith...but the reality is this a ravenous disease...and there are not any guarentees....I hope you realize their are people here who understand...they have been my lifeline through so many tough times...and continue to be since my mom passed in January...hugs and well wishes going out to you and your mom...please keep in touch...c

 
Old 02-14-2008, 07:47 AM   #6
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SherryAnne HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

My mom was diagnosed in Dec. 2006 with extensive sclc and only had three rounds of chemo. She went into a bit of remission over the summer, however, is now going down fast. She definately outlived her prognosis of max 12 months. She has actually been living with sclc for probably 2 years now.

I really think for your mom's sake she should take the pain medication; there really is no reason to suffer in pain. It will only get more intense as time goes on. My mom screams in pain most days now...even on a large amount of meds. I will be talking with the hospice nurse today (she's been on hospice since March, 2007) to see about increasing the dose. I have to give her morphine every day now for the intense pain and I give her haldol several times a day to keep the mood swings (from the brain mets) under control; otherwise she gets totally freaked out about everything.

I certainly wish your mom peace and comfort these days. And like the others said, just spend as much time with her as you can.

My thoughts and prayers are with you and your Mom

 
Old 02-15-2008, 11:54 AM   #7
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summer2008 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

Thanks so much to all of you that responded. I really appreciate your input.

It's so funny; some days she seems a little perkier (usually when I talk to her on the phone and she's had company that day).

Some days she wants to eat a little something - I took her Popeye's chicken when I went to visit her this week and she ate a thigh, some mashed potatoes and gravy, and even a biscuit. But then, a few minutes after she finished eating she laid back flat in her bed and said "I ate too much" which makes me wonder if she has trouble swalling the food and keeping it down (she's never very honest with me and doesn't tell me many details like this).

Again, we're all just amazed she's still with us even though she has taken no treatment whatsoever since her diagnosis at the beginning of October. I just wonder what's going on inside her body that's helping her stay here.

I guess you guys are right, though, when she finally does make that final downhill turn, it will probably be fast. I need to be prepared for that - if there is a way to even be prepared for something like that.

Thanks again to everyone.

Summer

 
Old 02-15-2008, 07:03 PM   #8
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Re: New Here - Mom SCLC - No Treatment - 5th Month

Quote:
Originally Posted by summer2008 View Post
Thanks so much to all of you that responded. I really appreciate your input.

It's so funny; some days she seems a little perkier (usually when I talk to her on the phone and she's had company that day).

Some days she wants to eat a little something - I took her Popeye's chicken when I went to visit her this week and she ate a thigh, some mashed potatoes and gravy, and even a biscuit. But then, a few minutes after she finished eating she laid back flat in her bed and said "I ate too much" which makes me wonder if she has trouble swalling the food and keeping it down (she's never very honest with me and doesn't tell me many details like this).

Again, we're all just amazed she's still with us even though she has taken no treatment whatsoever since her diagnosis at the beginning of October. I just wonder what's going on inside her body that's helping her stay here.

I guess you guys are right, though, when she finally does make that final downhill turn, it will probably be fast. I need to be prepared for that - if there is a way to even be prepared for something like that.

Thanks again to everyone.

Summer
just remember you have people here who understand and are here....best wishes...C

 
Old 02-18-2008, 05:59 AM   #9
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summer2008 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

So mom calls me yesterday and tells me there is a private room opening up at her nursing home in a couple of weeks and she wants to move in there.

Says she thinks she'll be happier there!

Let me share a little more background with you guys . . .

Right before mom was diagnosed at the beginning of October 2007, my husband and I decided we needed to move her to an apartment closer to our home (at that time she lived by herself in a tiny mobile home about 1 1/2 hours from my house). I was having to take her to the doctor more often for what we thought at that time was respiratory problems.

Well, we moved her to a really nice apartment close to our home the week after she was diagnosed with sclc. Things were going ok, but she starting falling and I was afraid to leave here there alone (we had hospice, but they did not come very often and I work full time, etc.). I talked with the hospice nurse and social worker and they suggested we move her to a personal care home. We approached her with this idea and she got furious, but finally agreed to move.

She was in the personal care home for 6 weeks, was extremely unhappy, said I "put" her there without her consent, was angry and verbally abusive to me every day I went to see her, etc. She kept saying she wanted to move back to the little town she used to live in before she was diagnosed. She wanted to be close to her "friends". I guess it was more important to her to be close to her "friends" than to me and that was very hurtful to me.

She finally "snapped" one Friday night in late December and basically walked out of the personal care home and demanded to move.

Well, I made that happen and she is now in a semi-private room in the special needs unit of an assisted living center (she's been there 6 weeks). Now she wants to move to the private room down the hall.

I'm just so frustrated that she keeps moving and changing things. It seems like she'll never been satisfied and doesn't have any comprehension of what all it takes to make these moves happen (money-wise, time, effort, stress, etc.).

Yes, I understand she has terminal lung cancer and may only have weeks to live, but I'm just so tired. I'm an only child and I have no one to help me (she hates my husband and refuses to let him help me do anything - won't even let him come around her or she goes ballistic and starts screaming, etc.). I had a horrible childhood and she has verbally abused me my entire life. We have never gotten along and I have really been trying to do put aside the past and do everything she wants since she was diagnosed, knowing she is my mother and I just want her to be happy during the time she has left.

Sometimes I wonder if this will ever end.

Thanks for letting me vent and thanks for reading. I really appreciate this site and all of your input.

Summer

 
Old 02-18-2008, 09:35 PM   #10
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Re: New Here - Mom SCLC - No Treatment - 5th Month

Your mom could be responding to needing to feel in control in some part of her life...as cancer can make you feel like you don't have any control.....i work in Assisted living...and you should be able to look towards the staff for their for support and suggestions...you are a good daughter...even with all the past negatives...you are doing your best to get the best and give the best for your mom....keep in touch...well wishes...as always....c

 
Old 02-19-2008, 12:51 PM   #11
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summer2008 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

Does anyone know if someone's lung can be completely full with cancer?

When my mother was in the hospital in early January, she had another x-ray done and it showed her left lung (where the cancer was originally found as an 8cm mass) was completely whited-out. I saw the x-ray myself and it was very scary looking.

Has anyone seen or heard of this before? Is this how lung cancer works? It can completley fill up a lung?

Thanks,

Summer

 
Old 02-19-2008, 05:44 PM   #12
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daughter issues HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

That sounds really scary. I don't know if it can actually fill a lung, but with my Mom (also sclc) I was repeatedly told that her lungs were full of the cancer. I never really thought of it then. Unfortunately, I can't answer your question.

My thoughts and prayers are with you and your family.

 
Old 02-19-2008, 09:03 PM   #13
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kayla000 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

my mom's tumor in her lung was 7cm. Diagnosed in July 06' and is still fighting despite METS to the brain and bone. She had good quality of life until recently. It is a long and depressing journey.

 
Old 02-20-2008, 07:18 PM   #14
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carol1961 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

Quote:
Originally Posted by summer2008 View Post
Does anyone know if someone's lung can be completely full with cancer?

When my mother was in the hospital in early January, she had another x-ray done and it showed her left lung (where the cancer was originally found as an 8cm mass) was completely whited-out. I saw the x-ray myself and it was very scary looking.

Has anyone seen or heard of this before? Is this how lung cancer works? It can completley fill up a lung?

Thanks,

Summer
Hi summer....Were you told by the doctor that it was totally filled with cancer? or did you just get to see an x-ray without the interpretation...makes a big difference...C

 
Old 02-21-2008, 06:55 AM   #15
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summer2008 HB User
Re: New Here - Mom SCLC - No Treatment - 5th Month

The ER doctor that night told us the lung was full of cancer and showed us the original x-ray from when she was diagnosed at the beginning of October right next to the x-ray from that night. The left lung was completely whited-out in the January x-ray.

Weird though, her nurse that night mentioned "pneumonia".

???

Summer


P.S. My son called me yesterday and said he talked with her - said she told him she was having trouble breathing yesterday and had been on her oxygen all day. Mind you, my mother very rarely uses her oxygen so this seemed like a big deal to me. I dunno . . .

 
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