Staying calm/Laura88 (and others)- SCLC w/brain & bone mets

hope0310
hope0310 Member Posts: 320
edited March 2014 in Lung Cancer #1
Hi ladies, I am not here much, but just read where I think both of you have dealt with this. Just wanting to get interaction feedback. My mom was dx 3/1 w/SCLC w/mets to brain and on 3/31, mets to thoratic spine. She had 12 readiation treatments on each (separetly) and this week is her 3rd round of chemo.

She became so weak in the beginning from all the brain radiation and then nauseated from the radiation to thoratic spine, she spent too much time in bed and doing nothing and her legs are so weak!!!

She is finally feeling really good and starting to eat more which I hope will enable her to gain strength.

Anyway, I am rambling, just wondered what your story was and if it was similar.

Thanks~

Comments

  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #2
    NSCLC w/brain mets
    Hope,
    No bone mets as yet, but I had brain mets and surgery to remove the largest tumor in December 2008, then 20 days of whole brain radiation and 4 days of tomotherapy. Let me tell you - the surgery was the easiest part! The radiation made me extremely fatigued, as it did to your mom. I was also on Prednisone to reduce post-surgical inflammation of the brain, so my hip joints ached when I tried to go up steps - to the bus, for example. Yeah, I was taking myself to treatments by bus, but that didn't last very long :)

    The fatigue and weakness will wear off. What is her chemo? Is she tolerating it ok? When I was done with WBR I went on Tarceva, so I didn't have to deal with chemo side effects. As of February 2010 I've been in remission..
    Deb
  • Laura88
    Laura88 Member Posts: 47
    #3
    Hello -- sorry for what your
    Hello -- sorry for what your mom is going through. I have bone mets to my spine - a tumor caused a fracture and my biggest problem right now is back issues. Good and bad days - managed mostly with hot packs and advil. For brain mets I had the tereodactic surgery where they screw a halo to you head and do the radiation. It's not as bad as it sounds and way better than open surgery. It works -- where they did it is much, much smaller and decreasing still. New problem is new mets and I need this one more time. I also have had WBR -- would prefer this surgery -- it's just one day and then you're done.

    This all may sound awful to you but I have to tell you I feel great. I work full time and with the exception of my back (cane helps a lot) I function as I always did. Keep the faith, keep us informed, and we are praying for you.
  • hope0310
    hope0310 Member Posts: 320
    #4
    Laura88 said:

    Hello -- sorry for what your
    Hello -- sorry for what your mom is going through. I have bone mets to my spine - a tumor caused a fracture and my biggest problem right now is back issues. Good and bad days - managed mostly with hot packs and advil. For brain mets I had the tereodactic surgery where they screw a halo to you head and do the radiation. It's not as bad as it sounds and way better than open surgery. It works -- where they did it is much, much smaller and decreasing still. New problem is new mets and I need this one more time. I also have had WBR -- would prefer this surgery -- it's just one day and then you're done.

    This all may sound awful to you but I have to tell you I feel great. I work full time and with the exception of my back (cane helps a lot) I function as I always did. Keep the faith, keep us informed, and we are praying for you.

    Thanks ladies, her chemo
    Thanks ladies, her chemo drugs are VP16 and carboplatin, she seems to be tolerating those just fine.

    Set back this a.m. though, today was to be day 3 of the 3rd round but she got up unable to sit up, walk anything and had moderate confusion. We went to the ER, they did CT of brain and chest xray, both of which were normal (as in no change for her) she had already had brain rescanned and it showed tumors shrunk and calcified. So, they admitted her, oncologist ordered full spine MRI, is thinking it spread lower :( While that would explain the leg issue it does not at all explain the confusion. The MRI is later this evening, hopefully we will know more in the morning.

    The quickness of how things change are heartbreaking....we went for mani-pedi's and sat at her pool Saturday and Sunday....
  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #5
    hope0310 said:

    Thanks ladies, her chemo
    Thanks ladies, her chemo drugs are VP16 and carboplatin, she seems to be tolerating those just fine.

    Set back this a.m. though, today was to be day 3 of the 3rd round but she got up unable to sit up, walk anything and had moderate confusion. We went to the ER, they did CT of brain and chest xray, both of which were normal (as in no change for her) she had already had brain rescanned and it showed tumors shrunk and calcified. So, they admitted her, oncologist ordered full spine MRI, is thinking it spread lower :( While that would explain the leg issue it does not at all explain the confusion. The MRI is later this evening, hopefully we will know more in the morning.

    The quickness of how things change are heartbreaking....we went for mani-pedi's and sat at her pool Saturday and Sunday....

    Possibly infection?
    I've read more than a few times about older patients having confusion that is subsequently found to be from a urinary tract infection - has she been checked for that? Hoping this is resolved quickly, keep us posted :)
  • hope0310
    hope0310 Member Posts: 320
    #6
    stayingcalm said:

    Possibly infection?
    I've read more than a few times about older patients having confusion that is subsequently found to be from a urinary tract infection - has she been checked for that? Hoping this is resolved quickly, keep us posted :)

    Well the MRI Wednesday
    Well the MRI Wednesday evening was a no-go. She could not lay still, even with a xanax and something else injected into her port. So, the plan was to do it under sedation Thursday. That too became a no-go due to blood. (hemoglobin level) So she got 2 bags of blood yesterday and the plan is now to have the MRI today between 12 and 1. This unknown stuff is the WORST!!!

    I too have heard of the UTI, and I meant to make sure they tested her urine yesterday and forgot. They are wanting to do the MRI thinking that it has spread to lower spince (please god no) that would explain legs, but certainly not mind.....

    Wish us luck today, not sure what that means at this point, but we will take it!

    Thanks again
    Elysia
  • medi_2
    medi_2 Member Posts: 505 Member
    #7
    hope0310 said:

    Thanks ladies, her chemo
    Thanks ladies, her chemo drugs are VP16 and carboplatin, she seems to be tolerating those just fine.

    Set back this a.m. though, today was to be day 3 of the 3rd round but she got up unable to sit up, walk anything and had moderate confusion. We went to the ER, they did CT of brain and chest xray, both of which were normal (as in no change for her) she had already had brain rescanned and it showed tumors shrunk and calcified. So, they admitted her, oncologist ordered full spine MRI, is thinking it spread lower :( While that would explain the leg issue it does not at all explain the confusion. The MRI is later this evening, hopefully we will know more in the morning.

    The quickness of how things change are heartbreaking....we went for mani-pedi's and sat at her pool Saturday and Sunday....

    Hi Hope
    Hi Hope, Don't forget dehydration! It can make you confused and weak. I had a bout of it that kept me down for a week. I could barely get out of bed. We all think that we drink enough water but we rarely do.
    I hope things get better!
    Medi
  • hope0310
    hope0310 Member Posts: 320
    #8
    medi_2 said:

    Hi Hope
    Hi Hope, Don't forget dehydration! It can make you confused and weak. I had a bout of it that kept me down for a week. I could barely get out of bed. We all think that we drink enough water but we rarely do.
    I hope things get better!
    Medi

    The transfusion did wonders
    The transfusion did wonders for mom, when I got to hospital Friday she was a different person.

    Completed MRI and it was CLEAN!!!!!!!!!!!!!! Awesome, so since she was doing well, and able to walk etc, they let her go home about 7pm.

    Well, things just went down hill by Saturday evening and today they readmitted her with the same issues. I'm angry, I'm discouraged, I am sad, I am all kinds of things!!!!

    They are saying it could be from the decodran..she has not been on for a while, but they had her on them Wed-Fri when she was in hospital and then not on this weekend b/c it was no longer part of daily regimne, nor was it in release papers.

    Medi-she def does NOT drink enough, but tries. The IV fluids helped with that while in hospital.

    My step dad is going to demand a PET tomorrow and for her to be seen by a neurologist. I think both are good ideas. I am amazed that they have not ordered a PET already since this is such a mover.

    Thanks again everybody


    Elysia
  • nubis
    nubis Member Posts: 98
    #9
    SCLN
    My husband has small cell with mets in his brain. And he is complaining for a back pain. But he thinks is because he slept in a bad position. How doctors found your mom has mets in the spine. Did your mom present a specific symptom? Thank you,
  • deb_needhope
    deb_needhope Member Posts: 38
    #10
    hope0310 said:

    The transfusion did wonders
    The transfusion did wonders for mom, when I got to hospital Friday she was a different person.

    Completed MRI and it was CLEAN!!!!!!!!!!!!!! Awesome, so since she was doing well, and able to walk etc, they let her go home about 7pm.

    Well, things just went down hill by Saturday evening and today they readmitted her with the same issues. I'm angry, I'm discouraged, I am sad, I am all kinds of things!!!!

    They are saying it could be from the decodran..she has not been on for a while, but they had her on them Wed-Fri when she was in hospital and then not on this weekend b/c it was no longer part of daily regimne, nor was it in release papers.

    Medi-she def does NOT drink enough, but tries. The IV fluids helped with that while in hospital.

    My step dad is going to demand a PET tomorrow and for her to be seen by a neurologist. I think both are good ideas. I am amazed that they have not ordered a PET already since this is such a mover.

    Thanks again everybody


    Elysia

    My Mom has small cell lung cancer too
    We start chemo on 6/21.. not soon enough.. My Mom has a tumor on one of her lungs, liver and small one on the brain. She's also on decadron for swelling around the brain tumor.. She just started to have difficulty with her cognitive skills.. finding words etc.. this morning noticed that her voice is hoarse.

    At first the pathology came back and said she had non-small cell. They started prepping her for Cyberknife on Friday, then the oncologist called to say that the results from pathology might have been wrong. They're reviewing them again, but looks like small cell. We'll new more tomorrow. All this waiting is driving us crazy..
  • deb_needhope
    deb_needhope Member Posts: 38
    #11
    nubis said:

    SCLN
    My husband has small cell with mets in his brain. And he is complaining for a back pain. But he thinks is because he slept in a bad position. How doctors found your mom has mets in the spine. Did your mom present a specific symptom? Thank you,

    SCLN - Mom
    So far we haven't heard that it's spread to the spine, but her back is bothering her more, right where the tumor is on the upper part of the back. She's on two pain patches and takes percocet when needed.

    My worry is that I hear this type is fast growing.. She had no symptoms when she went to the doctor's for a regular check-up. The doctor did notice that she lost 7 lbs since in last appointment in Feb and she told him she was having occasional faint back pain.. That was on 5/21.. She had just got back from a wonderful vacation.

    They're going to do another MRI. We just changed hospital for where she's going to get treatment. Closer to my sister and I so we can take care of her.
  • deb_needhope
    deb_needhope Member Posts: 38
    #12
    nubis said:

    SCLN
    My husband has small cell with mets in his brain. And he is complaining for a back pain. But he thinks is because he slept in a bad position. How doctors found your mom has mets in the spine. Did your mom present a specific symptom? Thank you,

    SCLN - Mom
    So far we haven't heard that it's spread to the spine, but her back is bothering her more, right where the tumor is on the upper part of the back. She's on two pain patches and takes percocet when needed.

    My worry is that I hear this type is fast growing.. She had no symptoms when she went to the doctor's for a regular check-up. The doctor did notice that she lost 7 lbs since in last appointment in Feb and she told him she was having occasional faint back pain.. That was on 5/21.. She had just got back from a wonderful vacation.

    They're going to do another MRI. We just changed hospital for where she's going to get treatment. Closer to my sister and I so we can take care of her.
  • deb_needhope
    deb_needhope Member Posts: 38
    #13
    nubis said:

    SCLN
    My husband has small cell with mets in his brain. And he is complaining for a back pain. But he thinks is because he slept in a bad position. How doctors found your mom has mets in the spine. Did your mom present a specific symptom? Thank you,
  • deb_needhope
    deb_needhope Member Posts: 38
    #14
    nubis said:

    SCLN
    My husband has small cell with mets in his brain. And he is complaining for a back pain. But he thinks is because he slept in a bad position. How doctors found your mom has mets in the spine. Did your mom present a specific symptom? Thank you,
  • hope0310
    hope0310 Member Posts: 320
    #15
    nubis said:

    SCLN
    My husband has small cell with mets in his brain. And he is complaining for a back pain. But he thinks is because he slept in a bad position. How doctors found your mom has mets in the spine. Did your mom present a specific symptom? Thank you,

    nubis......
    Actually, mom did have some back pain and thought the same as your husband, laying wrong. It was nothing that she complained of much, so we all shrug it off. She got up one morning and had jello legs so to speak, was unable to walk. (much like she is now, but scan is clean)

    Anyway, it was a chemo morning and when she got to doc they sent her straight to hospital for MRI, that was 3/31 and it was found at T6 (I believe) she had 12 radiation treatments for it.

    My best to you and your husband, it is such a rollercoaster ride...
  • hope0310
    hope0310 Member Posts: 320
    #16
    deb_needhope said:

    SCLN - Mom
    So far we haven't heard that it's spread to the spine, but her back is bothering her more, right where the tumor is on the upper part of the back. She's on two pain patches and takes percocet when needed.

    My worry is that I hear this type is fast growing.. She had no symptoms when she went to the doctor's for a regular check-up. The doctor did notice that she lost 7 lbs since in last appointment in Feb and she told him she was having occasional faint back pain.. That was on 5/21.. She had just got back from a wonderful vacation.

    They're going to do another MRI. We just changed hospital for where she's going to get treatment. Closer to my sister and I so we can take care of her.

    deb
    SCLC is a fast spreader, that is for sure, but it is also very responsive to treatment. Never give up!! Do not read statistics, your mom is a statistic of ONE!!!

    Keep us updated, take a one day at a time!
  • kimbee1218
    kimbee1218 Member Posts: 29
    #17
    deb_needhope said:

    My Mom has small cell lung cancer too
    We start chemo on 6/21.. not soon enough.. My Mom has a tumor on one of her lungs, liver and small one on the brain. She's also on decadron for swelling around the brain tumor.. She just started to have difficulty with her cognitive skills.. finding words etc.. this morning noticed that her voice is hoarse.

    At first the pathology came back and said she had non-small cell. They started prepping her for Cyberknife on Friday, then the oncologist called to say that the results from pathology might have been wrong. They're reviewing them again, but looks like small cell. We'll new more tomorrow. All this waiting is driving us crazy..

    Pathology report change
    Deb_needhope...I was reading your post on 6/13. You say they might have been wrong on pathology report and changed your Moms dx from NSC to SC. How did they find that it was wrong. The Pulmonary Dr that did my Dads bronchopscopy came out immediately after to tell us that he was sure that it is SC and didn't need to wait for biopsy and it didn't look good. 2 weeks later at the onocolgists visit they say that it is NSC according to pathology report. This is so scary not knowing how to be sure which is right. The wrong treatment will shorten his life. They are just saying well we go by pathology and not Dr eye...but it didn't even raise any question to them that maybe the report could be wrong. This is a very experienced 30+ year Dr and I know mistakes are made in labs. But they are acting like it is no big deal and I am scared that he may receive the wrong treatment. How did your Mom make out? This waiting stuff is definitely enough to make you crazy. Thanks for info.

    Kim
  • norma82
    norma82 Member Posts: 2
    #18
    lung cancer w/mets to hip and adrenal glands
    Hi, its my first time here. My daddy was diagnosed with stage 4 lung cancer almost a year ago and within that time it spread to his hip, and adrenal glands.He has been doing chemo and now because the pain is so severe on his hip he is doing radiation.He is very weak all he does is lay either on the bed or the couch if he is not sleeping until about one in the afternoon.Im so scared because the doctor had told my sister that it is terminal.

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