Hi everyone, I a new here, and hope this is where I belong

MCKMNL
MCKMNL Member Posts: 40
edited March 2014 in Caregivers #1
Hi everyone, My name is Missy,I am from Illinois. My dad was just DX'd with stage 4 ( incureable cancer ) as the doc said, of a primary unknown origin. My story is going to be scattered, please forgive me, as my mind is scattered as well. This DX is killing me, I have been a daddies girl since the day I was born, we have a great relationship, and lots of HUMOR to get us through this. HUMOR is one thing my family does not lack, so we are blessed to have that, but when the night is silent, and the day over with, all our minds are going. Ok Back in late Nov my parents called me , and said they were taking my dad to the ER, he literally could NOT move, months before this they told my dad he had arthritis in his back,well the night he went to the ER it turned out he had a tumor on his T8 vertabrae that ate through bone, he was sent to major hospital for more work up, after 10 days of being in the that hospital they removed the tumor off his back, and fused T5-T12 together. he is still recovering from that, and holding his own. We then met with a Chemo doc, who wants to start chemo on him, and forgo radiation,. I am not for sure why, but this did not feel right to me, so I just wanted a second opinion, i found an AMAZING radiation doc whos is now doing radiation ony my dads back, and hip ( in all of this mess we found out that he has a tumor on his hip as well, they said all major organs looks claen, HOWEVER with that said, they also said that the found a very tiny spot on his lung, small spot on his kidney, and liver, but they looked more cyctic then cancerous, so we have no idea what to think. Anyhoo my dad will finish his radiation in 10 more treatment, and then he will begin chemo, they said they will stat out with a very low dose, after 3 treatments see how he is doing. this is my story. I needed a place all my own to come to for support, unbiased support, and this website was it. I hope I posted this in the right place, and I look forward to getting to know all of you, and offer/lend support to anyone else who may need it. Thanks for reading.
Missy

Comments

  • karenbeth
    karenbeth Member Posts: 194
    #2
    welcome
    You are in the right place--sorry you had to come here, but you will find it helpful in terms of information and support. This the place where you can come to vent and express all your emotions, and people will understand. You and your father have been through a lot over the past few months. Sounds like he's lucky to have you advocating for him.
    All the best to you,
    Karen
  • skipper85
    skipper85 Member Posts: 229
    #3
    You're in the right place

    Hi Missy:

    Sorry you have to be here but since you are - welcome. This is a great place to come to for support and information. I don't know what I would've done without the wonderful people on this board.

    Skipper
  • mr steve
    mr steve Member Posts: 285
    #4
    Missy
    MISSY,

    I hope you and your dad stay tight thru this and about the best advice I can give a fellow caregiver is to make sure that you take care of yourself. If you get sick you can't do your job.
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    it's a bumpy road
    Hi Missy,
    I look after my Mom, who's two years into her battle. She's had a good, long life, just turned 80. How old is your dad? I lost my father to cancer nine years ago, and I'm still a daddy's girl, it never changes. Talk about humor. After he passed, our family almost got in trouble at the funeral home because we were laughing too loud.

    This is a great place to come. The folks here have seen it all. Good luck with your dad.
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #6
    Hello and welcome
    Hi. Sorry you have to be here for your Dad but this is a great place, full of kind, caring people. I lost my mother and BIL both to cancer in the last 1 1/2 yrs and I'm still kinda reeling from it.. My mom had uterine cancer, and she kind of had the same thing happen to her . Her dr. kept telling her the pain in the lower back, hip , side was arthritis.. it was cancer spreading..Did you know arthritis usually shows up on an xray.. a simple xray but they didn't send her for one.. My mom was 78 when she was diag. and 79 when she passed. How old is your Dad . Did they do a pet scan? Well good luck and hang in there. We'll be rooting for him and you.
    Hugs,
    Cindy
  • MCKMNL
    MCKMNL Member Posts: 40
    #7
    Cindy Bear said:

    Hello and welcome
    Hi. Sorry you have to be here for your Dad but this is a great place, full of kind, caring people. I lost my mother and BIL both to cancer in the last 1 1/2 yrs and I'm still kinda reeling from it.. My mom had uterine cancer, and she kind of had the same thing happen to her . Her dr. kept telling her the pain in the lower back, hip , side was arthritis.. it was cancer spreading..Did you know arthritis usually shows up on an xray.. a simple xray but they didn't send her for one.. My mom was 78 when she was diag. and 79 when she passed. How old is your Dad . Did they do a pet scan? Well good luck and hang in there. We'll be rooting for him and you.
    Hugs,
    Cindy

    WOW!!! i am very moved by the warm welcome
    Thank you all so much.. My dad is 63 yrs old, and such a tough guy, but i really think he is struggling with his diagnosis, one day he is going to fight, then the next he is picking out his plot ( I think this behavior is so normal ) I DO NOT LIKE my dads checmo doc, in fact i cannot stand the guy, he told my dad a pet scan would be worthless for him, since he has other medical conditions ( IE : Pacemaker/ stint ) now he has a bionic back from the tumor removal. this pissed me off, he said the pet scan would pick up every abnormalty wrong with him, so he felt it was not worth it.. MY THINKING is this, if you are a dr cannot, and cannot figure out cancer cells , from screws and pins then you are in the wrong business. i do not know much about pet scans, and what they look for, but from what i read it said they use a radioactive glucose that sticks to cancer cells, is this correct? if this is the case, then why cannot my dad have a pet scan, i will be fighting for that if i need to.

    Mr steve, it is so funny you mention staying healthy, I have been helping my parents do things like banking, getting everyones name put on certain financial docs, doing there shopping, I basicly have been running since Nov 20th, and I have been sick 3 times, and i have never ever been this sick in my life, this often. so stress, and running is weighing on me. I talked to my parents last night, as I sit here with my second bout of flu, if my uncle could take on some of the responsibility. so we split things up. My uncle will finish out radiation, and i will take over chemo. I have a family of my own, husband, 4 wonderful kids. anyway, i am babbling, but was wondering do any of you have any thoughts on the pet scan issue?

    missy
  • cher8871
    cher8871 Member Posts: 64
    #8
    MCKMNL said:

    WOW!!! i am very moved by the warm welcome
    Thank you all so much.. My dad is 63 yrs old, and such a tough guy, but i really think he is struggling with his diagnosis, one day he is going to fight, then the next he is picking out his plot ( I think this behavior is so normal ) I DO NOT LIKE my dads checmo doc, in fact i cannot stand the guy, he told my dad a pet scan would be worthless for him, since he has other medical conditions ( IE : Pacemaker/ stint ) now he has a bionic back from the tumor removal. this pissed me off, he said the pet scan would pick up every abnormalty wrong with him, so he felt it was not worth it.. MY THINKING is this, if you are a dr cannot, and cannot figure out cancer cells , from screws and pins then you are in the wrong business. i do not know much about pet scans, and what they look for, but from what i read it said they use a radioactive glucose that sticks to cancer cells, is this correct? if this is the case, then why cannot my dad have a pet scan, i will be fighting for that if i need to.

    Mr steve, it is so funny you mention staying healthy, I have been helping my parents do things like banking, getting everyones name put on certain financial docs, doing there shopping, I basicly have been running since Nov 20th, and I have been sick 3 times, and i have never ever been this sick in my life, this often. so stress, and running is weighing on me. I talked to my parents last night, as I sit here with my second bout of flu, if my uncle could take on some of the responsibility. so we split things up. My uncle will finish out radiation, and i will take over chemo. I have a family of my own, husband, 4 wonderful kids. anyway, i am babbling, but was wondering do any of you have any thoughts on the pet scan issue?

    missy

    my dad too
    my dad also has cancer. he was dx in april 2010 with NSCLC w/ mets to the brain. i'm an only child with my own family as well, but i only have 1 kid. you're right, the stress is hard on you but somehow, we always find the way to get through. cancer....it's a long hard road and it sucks, but this is a great place to vent and these ladies and gents on here are just great!

    pm me anytime you want.....

    cheri
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #9
    cher8871 said:

    my dad too
    my dad also has cancer. he was dx in april 2010 with NSCLC w/ mets to the brain. i'm an only child with my own family as well, but i only have 1 kid. you're right, the stress is hard on you but somehow, we always find the way to get through. cancer....it's a long hard road and it sucks, but this is a great place to vent and these ladies and gents on here are just great!

    pm me anytime you want.....

    cheri

    Pet Scan
    HI Missy I'm not an expert on Pet scans, But it is possible with your Dad's other health issues, that they might feel it would yield too many false positives .. I don't know. I do know this.. yes you are correct, they put some radioactive glucose into you and the scan measures something called SUV.. that stands for standard uptake volume. My mother's gyn/onc (who incidentally I couldnt' stand either.. I just typed con instead of onc..and scam instead of scan.. freudian slips? HA HA HA) Equated this SUV to a geiger counter... the theory being that cancer cells are more active and will Take up more of the radioactive glucose solution.. and they measure this activity.. just like a geiger counter... he also told us that anything over 2.7 is considered a malignancy but like all tests there can be false positives and negatives... Good luck and keep us posted..
  • skipper85
    skipper85 Member Posts: 229
    #10
    MCKMNL said:

    WOW!!! i am very moved by the warm welcome
    Thank you all so much.. My dad is 63 yrs old, and such a tough guy, but i really think he is struggling with his diagnosis, one day he is going to fight, then the next he is picking out his plot ( I think this behavior is so normal ) I DO NOT LIKE my dads checmo doc, in fact i cannot stand the guy, he told my dad a pet scan would be worthless for him, since he has other medical conditions ( IE : Pacemaker/ stint ) now he has a bionic back from the tumor removal. this pissed me off, he said the pet scan would pick up every abnormalty wrong with him, so he felt it was not worth it.. MY THINKING is this, if you are a dr cannot, and cannot figure out cancer cells , from screws and pins then you are in the wrong business. i do not know much about pet scans, and what they look for, but from what i read it said they use a radioactive glucose that sticks to cancer cells, is this correct? if this is the case, then why cannot my dad have a pet scan, i will be fighting for that if i need to.

    Mr steve, it is so funny you mention staying healthy, I have been helping my parents do things like banking, getting everyones name put on certain financial docs, doing there shopping, I basicly have been running since Nov 20th, and I have been sick 3 times, and i have never ever been this sick in my life, this often. so stress, and running is weighing on me. I talked to my parents last night, as I sit here with my second bout of flu, if my uncle could take on some of the responsibility. so we split things up. My uncle will finish out radiation, and i will take over chemo. I have a family of my own, husband, 4 wonderful kids. anyway, i am babbling, but was wondering do any of you have any thoughts on the pet scan issue?

    missy

    PET Scans

    My husband's doctor said they don't always show the right results. Lots of false positives and they also miss anything that isn't a certain size. They cost a boatload of money too. He's better off with the CT Scans with dye and they're a lot quicker. My husband was 63 when he passed. So I kind of know what your Dad is going through - emotional ups and downs. My husband (even though he lost about 40 lbs) had to ask the doctor the day he was put into the hospice program if he was dying. The doctor never told him. I asked the doctor about it and he said he was hoping he could turn it around - yeah right. Sorry I'm at the angry stage of grief I guess - actually I'm not sure where I am.

    Hang in there kid. You're doing a fantastic job. It was a good idea to have your uncle help you out. Don't get burned out. I'm still trying to kick a cold and sinus problem I got before my husband passed. All the stress affects your immune system. You can't help it so try and eat healthy and smile as much as you can. Listen to good music when you can. I'm sure your kids keep you very busy.

    ((HUGS))

    Skipper
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator

Discussion Boards