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    Old 06-17-2005, 06:17 PM   #1
    MaryAlisha
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    Please help me know what's coming for us..small cell that metastasized

    My mother was diagnosed w/ stage3b small cell lung cancer in one lung and the lympth nodes in Nov. 2003. She had chemo and radiation and was cancer free for almost a year after that. Her cancer was diagnosed in the arm bones about a month 1/2 ago and she was going for her 2nd chemo treatment this week when we got the results on her new Pet scan. Her pet scan showed it's in now in her hips, thighs, pelvis, spine, ribs, liver, adrenal glands, lympth nodes, both lungs this time and still in the arm that had radiation. The dr stopped all chemo and radiation and sent us home w/ hospice. She hasn't been able to walk for a few weeks and is in a wheel chair. How long do you think she will live? None of this was there less than 3w ago except for the one arm bone. I'm sorry if this doesn't make much sense or I don't spell all the words correctly. I just really need some advice now. This is her 19th month since diagnosis and I read the average for small cell is 18-24mths. I know that no one goes by averages. Her feet are swelling already due to the cancer being in her liver according to the dr. Please tell me how long you think she has....People are making me think it's only a matter of weeks. I do want to know the truth.

    MaryAlisha

     
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    Old 06-17-2005, 09:02 PM   #2
    MaryAlisha
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    Re: Please help me know what's coming for us..small cell that metastasized

    I meant to post that my mother had limited stage small cell at her 1st diagnosis in one lung and the lympth nodes but in that was stage 3b squamous cells? Does that sound right?

    MaryAlisha

     
    Old 06-17-2005, 09:24 PM   #3
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    Re: Please help me know what's coming for us..small cell that metastasized

    If your mothers cancer has spread to that many places I would guess she has less than a year. Perhaps 6 months. No one really knows about these things as it is in a higher hand than our own. Once my husbands cancer spread to the bones and the brain he lived around 2 months but everyone is different.

    Instead of thinking of your mothers death just enjoy today and make each moment count so you will be left with many more beautiful memories in the treasure chest of your heart.

    My prayers are with all of you. May God give you comfort and peace,
    Barbara~
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    Squamous Cell Carcinoma/ vocal cords/ /T1/NO/MO/surgery/Radiation x33/completed 8/09/2005

     
    Old 06-18-2005, 04:49 AM   #4
    MaryAlisha
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    Re: Please help me know what's coming for us..small cell that metastasized

    Barbara,
    Thank you for the reply. I'm sorry about your husband. Everyone talks like it will be in less than a month. I'm just so scared that I won't be by her side when she dies. She lives an hour away and I have a part time job and two kids and a husband to take care of. I plan on being there alot but I just am so scared.

    MaryAlisha

     
    Old 06-18-2005, 12:09 PM   #5
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    Re: Please help me know what's coming for us..small cell that metastasized

    I know you are sweetie. I used to think "Oh my gosh what if I go to the grocery and Bill dies in bed while I am there?" Very scarey thought. When I found out about my cancer my son was in a state since he had moved way out from here in the country. He is still in a state poor kid. he is 26 years old and my youngest. He calls everyday and gets upset if I don't answer the phone. I was up for 2 days with my husband and finally had to leave the hospital. When I got home the phone was ringing and I had to go right back but it was to late. The thing is hun that we already had said our hellos and our goodbyes. Its never "the right time" only that you made the time to love and be loved back. If your mother and yourself are believers then you will find comfort in the fact that this mortal life is only a tiny step on our path to eternity

    You know if we could see into the future then all would be well but we can't. To your mom I am sure just knowing you feel this way, that you so want to be with her now when she is waiting for paradise, she is comforted by the thought of your love. Even though she may or may not be with you long in this mortal life her love will live with you for always. I lost my mother many years ago but I only lost her physical body because she is with me when I wake up and when I see a rose and smell coffee perking. She has never truely left me as your mother will never truely leave you.

    I will be praying for your comfort and peace dear.
    Barbara~.
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    Squamous Cell Carcinoma/ vocal cords/ /T1/NO/MO/surgery/Radiation x33/completed 8/09/2005

     
    Old 06-30-2005, 10:56 AM   #6
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    Re: Please help me know what's coming for us..small cell that metastasized

    Quote:
    Originally Posted by MaryAlisha
    My mother was diagnosed w/ stage3b small cell lung cancer in one lung and the lympth nodes in Nov. 2003. She had chemo and radiation and was cancer free for almost a year after that. Her cancer was diagnosed in the arm bones about a month 1/2 ago and she was going for her 2nd chemo treatment this week when we got the results on her new Pet scan. Her pet scan showed it's in now in her hips, thighs, pelvis, spine, ribs, liver, adrenal glands, lympth nodes, both lungs this time and still in the arm that had radiation. The dr stopped all chemo and radiation and sent us home w/ hospice. She hasn't been able to walk for a few weeks and is in a wheel chair. How long do you think she will live? None of this was there less than 3w ago except for the one arm bone. I'm sorry if this doesn't make much sense or I don't spell all the words correctly. I just really need some advice now. This is her 19th month since diagnosis and I read the average for small cell is 18-24mths. I know that no one goes by averages. Her feet are swelling already due to the cancer being in her liver according to the dr. Please tell me how long you think she has....People are making me think it's only a matter of weeks. I do want to know the truth.

    MaryAlisha

    MaryAlisha,

    I'm so sorry to hear about your Mother's illness. My Mom also had small cell lung cancer with metastises (sp?) to the liver. She was diagnosed in August of 2004 and after three rounds of chemo, and no regression or slowing of the disease spread - her decision was to stop treatment on April 20, 2005, and enter Hospice. She lived a week under Hospice care, and thankfully (the pain she was in was unbearable even with morphine) passed away on April 28 - much to the surprise of the Hospice workers who assumed she would live for several more days.

    I would say to you - trust what you know in your heart - you know your Mom better than anyone - I knew the night my Mom died that it would be her last -and insisted on being with her regardless of what Hospice thought. I will pray for you and your Mom - I know what you are going through.

    Jeanette
    in Memory of my Mom
    Argel Mae Edwards Gero Introne
    September 22, 1940 - April 28, 2005

     
    Old 07-01-2005, 06:52 AM   #7
    t_411
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    Re: Please help me know what's coming for us..small cell that metastasized

    My dad has the exact type of lung cancer & the 1st year it progressed slowly. He was 2 old 2 stand the chemo but he did radiation & the cancer didn't go away but it did stop growing for around 1yr. After that it started growing like wild fire all over his body like it has for your mom. At that point the doctors told us he only had 2 months to live so, I moved in with mom & dad to help care for him & he's been alive with it for almost 5 years now. He's down to 128 pounds after the 2nd year with it but he still responded well to all of us & eating. But about 3 weeks ago he had some kind of breathing attack. He couldn't breathe at all & we took him to the hospital to get a breathing treatment. He saw his cancer doctor the next day & he sent us home w/ hospice too. They said he has 2 to 6 weeks to live now. This time is different though. My dad's gotten SO BAD these last weeks w/ pain, loss of bladder control, not healing, not knowing where he is & sometimes not knowing who we are. He has hallucinations that he can't snap out of. It's like he's going backwards in time & reliving things he's done in the past. He has conversations with people who are not in the room such as some of our dead relatives & he says there are a lot of children in his room. His eyes wander around like he's watching someone walk around the room. His eyes have gotten VERY red w/ puss in them, his skin color has turned gray. He can't swallow well & has no desire 2 eat/drink anything. Him being in so much pain now is the worst part of it though. He's on oxycotton, oxycodone, Ativan, etc... & they don't seem to faze the pain now. They do help him calm down to where he can sleep a little though. Hospice has made it easier for us to get his medicine by calling it in for us without having to take dad to the doctors once a month but other than that they really don't do anything. When we call them for an emergency they just walk us through what to do on the phone. They said they would be here if we needed them & believe me, after 5 yrs of caring for him I have been told by every cancer doctor in town how & what to give so, calling hospice is a last resort. when we do call them it's when we really have an emergency with him. We can't take him to the ER anymore cause we have hospice. Insurance will not pay for an ER visit as long as you have hospice. You have to fire hospice & sign papers b4 you can take them to the ER. They said they would make it easier on the family by caring for him for us so, we could spend more quality time w/ him but they come about 3 times a week & have never came over when we called & needed them here! We sat hospice down yesterday & told them that someone has to come out here & sit with dad a few times a week so, we can get some sleep like they said they would when we hired them! so, next week they say they'll send someone out to do so. Mom & I NEVER get any sleep & every day that goes by becomes more & more of an emergency situation with my dad. Mom & I are petite & have trouble lifting him. We used to care for him in shifts but he's gotten so, bad that it takes both of us at the same time to care for him. He's in so much pain now that he throws fit, trys 2 bite us & says bad words over & over which is not like him at all. he has to wear (depends) & when we touch or come near him he keeps screaming saying we're cutting him w/ glass. Yesterday he was screaming for a butchers knife so he could cut off his foot & then he pulled off his wedding ring & tried to eat it! We had 2 get it out of his mouth or he would have swallowed it. He pulls at his shirts till they rip off of him. He says 1 of the children that he see's in his room is the devil. You can't imagine how bad it's gotten for him. I hope & pray that your mom don't suffer like he has these last weeks. The reason I'm telling you all of this is because I'd like to prepare you for what might come. I wish someone told me what to expect but the doctors just said, it will get bad, things will shut down, etc. Not anything close 2 what he's going through now. It's been so terrible 2 see him like this that I have to be on anti depressants to deal w/ it. I love him & will be here for him till the end but I just didn't have any idea it could get this bad. Another thing I want you to know is that no matter how much time the doctors say they have to live, they DON'T know that. I've listened to doctors tell us for 5 years now every 2 months that he only has 2 months to live & recently says he has no more than 6 weeks. Hearing that over & over for 5 years caused me to have bad anxiety that later turned into panic attacks which is why I'm on the anti depressants. I wish they would have just shut up saying that because it puts you on the edge every day of your life thinking it's his last day to live & now 5 years later.. They were very wrong. only God knows when someone will die. Don't stress yourself out like I did thinking that they will die any second. The truth is, no one knows when that will be but it's good to prepare yourself now & accept that they will eventualy die from this & they might suffer a lot near the end. I hope that don't sound harsh but it's a reality that we all have to come to terms with in this situation. There's a few other things I think you should know about hospice.
    1. when they first came in to help with my dad they started changing all of his medication within the 1st week. They tried to put him on moraphine even though we TOLD them he's allergic to it. So, they put him on a pain med called "fentanyl, AKA: duragesic" that comes in a 72 hour patch. My dad had an allergic reaction to it that almost killed him! He started pulling off ALL of his clothes & scratching ALL OVER his body till he had blood coming out he was completely unresponsive & it caused him not to be able to breathe. He had to take it off of him & give him benadril. When we called hospice to tell them about it they didn't come over like they were supposed to & just told us to go to the store to get the benadril & give to him. SHEESH! I wanted to fire hospice right then & call 911 but we did as they said. it took him 2 days to get over that completely! So, be careful w/ the medications because they could start him on a med switching roller coaster that could kill them. I've since then asked hospice a LOT of questions about the medications & one of the hospice nurses came out & said to me, "why are you asking about this? do YOU plan on taking his medication?" OMG! It was all I could do not to hit her in the head w/ a lamp! She had just almost KILLED my dad w/ one of her bright ideas of changing his medications & she had JUST asked us if we have any questions about anything! That crazy nurse has since then been trying to count his pills so, I know that in her mind she thinks I might be taking his pain killers because I showed interest in what the hell they were giving him! uggg! It really ticks me off.. I would never take his medications! The pills he's on would probably put someone my size in a coma! her acting that way makes me feel dirty like scum or something! We have enough to deal with here & don't have time for some crazy nurse who imagines everyone on earth is some kind of pill popper just because they ask questions about the meds! I told her, "HELLOOOOO, you almost killed my dad the last time you changed his mediaction & you didn't even have the decency to come out here and take care of it & we're PAYING you to come out here when we need you! You better believe that I have questions about the medications you want to put him on!!!!"
    2. Since my mom & I have trouble lifting my dad, hospice told us we need to think about putting him in a nursing home. There is NO WAY we're putting him in a nursing home! My sister has worked in a few different nursing homes & there's always 1 or 2 people in there that treat them like crap! My sister has caught some of the RN's & assistants being mean as hell to elderly people when they wont do what they tell them to do like take their medicine, etc.. when a person is out of their mind w/ pain they don't know what they're doing & sure don't need to be treated that way.
    The thing you should know is that hospice can have the corts order you to put your mom in a nursing home if they decide to for any reason. When they do that they get all rights & control over your parents money. Not that you would need your moms money but i feel that THEY want to get their money & pawn our parents off on some nursing home so, hospice don't have to care for them. My sisters mother inlaw got sick in her old age & her & her husband were caring for her. One of them worked in the day & the other in the night so, they were always there to care for her but after a while hospice DID have the court make them put her in a nursing home against their will. His mother did not want to be put in a nursing home either. I used to visit with the elderly in a few of the nursing homes around where I used to live. I've seen things w/ my own eyes. Some of the elderly people would tell me they've been slapped, hit, pillows held over their faces, not fed & things you can't imagine. You could tell that they were very affraid of certain RN's & assistants by the way they acted when they came around! I confronted the RN's & assistants & they would say, oh, they're just dreaming, they don't know what their talking about, they're lying, etc. But when you come into a room that smells so bad from pee & poop & it's ALL over them & the bed, you know it's been there for a while! I've seen poop on people that is almost dried up on them & the nurses tell me they just did that a few minutes ago.
    U can report these things till you turn purple & it'll still go on.
    I don't mean to upset or scare you w/ these things at all. I just want you to know so, you can be as prepared as possible for it all.
    I wish you and your family the best.
    Take care & hang in there,
    T.

     
    Old 07-01-2005, 07:26 AM   #8
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    Re: Please help me know what's coming for us..small cell that metastasized

    Dear MaryAlisha,

    I am so sorry to hear about your Mom, I just lost my Mom to mestastic breast cancer in Aug, 2004. I just lost my grandfather in April 2005. It seems that when there feet start to swell it will be just a matter of days to weeks. If you get another month you are very lucky. I will pray for you and your Mom. Please make sure that you talk to her about everything that you ever wanted to before she passes.

    God Bless,
    Dawn

     
    Old 07-03-2005, 03:10 PM   #9
    MaryAlisha
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    Re: Please help me know what's coming for us..small cell that metastasized

    Thanks everyone. My mom passed away Thurs. 13 days after having hospice come to her house. 19mths after being diagnosed w/ small cell lung cancer in limited stage. I'm doing ok and know she is in a better place. The pain she was in was unbearable to watch and unimaginable to be in. Thank God when they installed the morphine pump into her stomach. THanks for all the advice and encouragement.

    MaryAlisha

     
    Old 07-06-2005, 04:00 AM   #10
    Nettie4000
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    Re: Please help me know what's coming for us..small cell that metastasized

    I'm so sorry you had such a bad experience with Hospice. Given the same situation again you would probably not consider using Hospice, but, I'm hoping my story may change that. My sister and I (thankfully) had just the opposite experience as you and your Mom. We are in upstate NY and our local Hospice was great - Mom said she wanted to be at home and they provided an LPN for 24 hour care as soon as we requested it - the nurses visited my Mom's house every day - sometimes twice a day - the counselor visited every day as did the Chaplain, who later performed the memorial service. While I do believe that perhaps the dose of Morphine they gave her was too high and even progressed her dying (I did talk to my own Physician about this and he agrees) - by days not weeks or months (she had small cell lung cancer with liver metastesis, and we believe it had moved all over her body by the time she passed as she was in GREAT pain in her back and having trouble with thought processes) - I understand Hospice' need to try and free her of pain and bring some peace to her last few days. Long story short, my sister and I were up with her for 48 hours straight because, before Hospice intervened, she was agitated and restless - couldn't sleep, eat, drink, her body functions were failing, and like your Dad, she was "seeing" and "speaking" to deceased loved ones. I hope that your Dad, and you and your Mom, have now found some peace as my sister and I have - I don't know if my Mom is in a better place, I'd like to think so, but it must be better than her last few months here. While our whole family misses Mom more than we could have ever imagined - blessedly she passed away on April 28, and her suffering finally ended. Take Care and God Bless Jeanette

     
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