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

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.

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

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.

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

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:angel:

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

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

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

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

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

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.

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.

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

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 . . .

Oh yeah, one other thing ...

I was discussing hospice with her primary care doctor that same week in early January, and he said "she definitely still has cancer, so she should definitely be on hospice."

We were discussing the fact that she didn't want to go back on hospice and I was asking his opinion about it.


Summer

Oh yeah, one other thing ...

I was discussing hospice with her primary care doctor that same week in early January, and he said "she definitely still has cancer, so she should definitely be on hospice."

We were discussing the fact that she didn't want to go back on hospice and I was asking his opinion about it.


Summer

Hi...not to take anything away from ER doctors....but they are not oncologists...and i have never heard (doesn't necessarily mean it's not true)...a whole lung being taken over then someone just needing some oxygen...pnuemonia makes more sense...as fluid in the lung from pneumonia...i would think (again...i am no doctor)....that pnuemonia might show that kind of xray...infection...fluid...would impair breathing...maybe need O2...I hope you see the oncologists asap for a definite diagnosis...regardless...hospice still would be a good resource for her and you...love...C......keep in touch

I don't know much about pneumonia, but that makes sense. I know with my Mom and her sclc she was very prone to pneumonia and had to have her lungs drained quite frequently and be put on O2 to help ease the breathing a bit.

This is blueeyes62. My mother was diagnosed in Sept 2006, with no symptoms of lung cancer. She woke up one morning and felt faint and started seeing double vision, that is when she went to the hospital and she had a brain MRI and that is where it showed many tumors and they did not know where it was coming from, so they did a chest xray of the lungs and it didn't show anything. Then they did a cat scan and that is when they saw a tiny lesion on her left lung and lymph node, but they couldn't believe that it was coming from there. When your mother was diagnosed was it already in her brain? How long did the doctors say that she had the cancer in her body before she was diagnosed? Did your mother smoke? How long? How old is she? My mother was 70. If you need to write, you can. I am having such a hard time. i still can't believe that she is gone. I never thought I would lose my mother to cancer. It is a very horrible disease. Nobody should have to go through all that pain and suffering. Take care.

When my Mom was diagnosed it wasn't in her brain, but it was everywhere else though and traveling fast. It didn't met to her brain until about 3 months after she was diagnosed. The doctors didn't know it had met there yet, and they weren't going to scan her head until she made a fuss with them. She was actually waiting for her brain scan when she had her first stroke. The doctors figured she'd gone into advanced Stage IV sclc the middle of May '06, when she started having the shortness of breath, eating and then not being able to keep the food down, and everything tasting disgusting to her. My Mom did smoke but she'd quit about 20 years prior. My Mom turned 58 years young 3 months before she passed away.

There are a lot of things that stand out in my mind about the cancer, but I remember vividly when I got the phone call from the hospital telling me that I had to get there. 10pm, I was standing in my kitchen by the sliding door in my pajama's getting ready to go to bed. When I asked why my Mom was admitted to the hospital, they told me that it was "serious". I wanted to know what was going on, if I needed to sign papers etc (I was her NOK). I finally got them to tell me that she had cancer and that I needed to be there because the doctors needed to talk to me. I literally stopped breathing, started crying and told them that I'd be there as soon as I could. I got lots of strange looks when I walked into the hospital. Talk about color co-ordinated ... green shirt, pink shorts, blue runners (I laugh about that now, but at the time I literally grabbed just anything and ran). I got some funny looks from people waiting in the ER but I didn't care.

I completely agree with you blueeyes62. Cancer is a horrible disease, and what's worse is that lung cancer is so taboo. I was there with my Mom when she was told by the oncologist not to tell anyone that she had lung cancer. Of everything that she had to deal with, that infuriated me the most. After all, people don't go around telling guys "you've got a prostrate, you should expect to get prostrate cancer" or the same with breast cancer or any of the other cancers. It annoys me that people with lung cancer seemingly have to deal with it on their own so they aren't prejudiced against. I've seen doctors tell my Mom "you used to smoke so I'm not going to treat you", and have heard of others being told the same thing. :mad: I can be very lippy when need be, and I put more than a couple doctors in their places when they asked my Mom that.

I still can't believe my Mom is gone either. I'm coming up on my Mom's anniversary of her death (March 13th). I'd give anything in the world to have my Mom back. I've even bartered with God to take my father instead (long story about him), or even myself. I keep reminding myself, though, that she's not suffering any more, and that she's with her parents and her beloved dog we had while I was growing up.

I'll send you a message later on today so that we can chat that way.

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 I will try to answer your question - I did extensive research on my mom's small cell lung cancer-aka-oat cell cancer. When I was taking care of my mom I was constantly searching and somehow landed on a Pathology Site (very real photos- wasn't good). I learned that sclc is very aggressive as the cells- it's hard to explain but I will try. If there are 2 cancer cells when they mutate there will be an additional 4 then it will mutate to 16 and then to 32 then to 64 etc. It's almost like square measurements, like if there is 1 cell it doesn't go 2 then 4 then 6. So you can see how fast it grows. SCLC cells look like oats when they fill the lung and yes they can fill the lung. SCLC also spreads very quickly to other parts of the body via lymphhatic vessels to the lymph nodes in the center of the lungs ( which is like a road map) when the cells shed they travel this way to other parts. When someone gets sclc cancer their cells grow and multiply too quickly, your cells don't have time to develope into normal healthy cells and they lie on top of one another and expand.

I hope no-one thinks I'm being la-ti-dah know it all because I am far from that:confused:>but when I saw your concern about the lung being filled with cancer I felt I would mention what I had learned when my mom and I were going through this. She had radiation to the brain about 6 rounds and 1 radiation of the chest. After these treatments my mom became weaker and weaker and immediatly lost her use of her legs and balance, I couldn't believe it. Chemo was not an option for my mom as she was in such a weakend state, she was 71. She lived exactly 4 months from day of diagnoses Aug-Dec./05

My heart feels your pain and I hope what I wrote is ok?

Thanks ebrena, tweetheart, blueeyes, carol and every one for replying.

Ebrena - I appreciate your input as it has been almost 5 months since my mother was diagnosed and she has had NO treatment whatsoever.

I saw her yesterday and we talked a little bit about cachexia. After reading extensively, I believe she may have this (wasting syndrome). She wanted to weigh herself yesterday so we went down to the nurse's station at her home and she weighed 108 pounds with clothes and tennis shoes on. She has lost about 21 pounds in the past 7 weeks, and almost 35 pounds since October 1st.

She says she sometimes still wants to eat -IF - the food is good and it's something she likes. She says she hates the food where she lives but she has friends and family who bring her food all the time, so I know she does eat. In fact, I bought her a hamburger (with the works) yesterday from Dairy Queen and she ate almost all of it - BUT she continues to waste away.

She continues to be even more short of breath and her cough is steady. She is very frail and stays in bed most of the day.

I know her time is limited and I know every time I leave her it might be the last time I see her (I only get to go see her about once a week).

. . . * * * sigh * * * . . .

Summer

Summer it is just so sad for you and what is happening with your mom, it's awful when someone who cared for you all your life and you love so much is going through such a nasty disease. It freaks me out knowing this disease breaks down a healthy person in a matter of months and I realize a lot of people do beat it, but with the cancer's my mom and dad went through and did not beat in my faith in has severly diminished. I still have faith but it's concept has been altered.

It doesn't matter how often you see your mom it's the quality time that is precious now and in years to come for you. I hold so many fun and precious moments with my mom even while I nursed her and watched her leave me. I think of her every day a couple times a day, some of my sibs say that's being obsessed, I say it's being lost without my best friend of 53 years.

Summer, give your mom lots of warm hugs when you are with her and hold on to your memories.

((((hugs))))

My mother's hospice nurse just called and said they are wanting to take her OFF of hydrocodone for pain (she currently takes 3 per day) and put her on Methadone long-acting pain medication.

Apparently, my mother told her she is waking up in pain every day now and they think she will benefit from this more - taking one at 8 a.m. and one at 8 p.m. to control the pain.

Anyone have any experience with Methadone in controlling pain in lung cancer patients? This is the first I have heard of this (remember: my mother REFUSES to take morphine). This truly sounds like the beginning of the end for my mother, as there is no turning back once they start this type of drug for pain relief.

Also, her hospice nurse also said they has a good "talk" today and my mother was calmly asking her questions about "what is going to happen to me" - as in what's going to happen as my situation deteriorates and I approach death. She said she wasn't crying or anything, she just wanted information. She told her the pain would probably continue based on the results they achieve with the new pain meds, her appetite would probably continui to diminish, and she will probably continue to sleep more and more. She said my mother took the information very well.

I think my mother was really "struck" in realizing how much weight she has lost in the past 7 weeks (20 pounds) and is realizing (if only internally) that the end is approaching. I dunno . . . just speculating - since she's never asked these kinds of questions before.

That's all for now. I don't mean to keep boring you all with the details, but it does help to come here and let it all out.

Thanks again for everyone reading and your input.

Summer

Hi sounds like your mom is coming to terms with her situation and still maintaing control of her own life..so hard but so good for her...when it comes to pain management...both personally and professionally...i have total confidence in hospice...that is what they are all about...providing comfort for peoples "lives"...thinking of you...c