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Thread: Navigating Day to Day Life w/stage 4

  1. #21
    Experienced User bluedawg's Avatar
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    Well, I just got a call from my Oncologist which I am very grateful for because I really like him and didn't like the growing sense of insecurity. It seams the radiation tx that my radiologist wanted to do was turned down by my insurance so he has to use a less powerful form of radiation which will "slow down" the Cancer and then we can maybe buy about six months or so before we need to begin maybe 4 months of chemo therapy which is what you do before you start immunotherapy. At least we have a plan! We're still just watching the neck lymph node because it's so small it didn't even show on the cat scan, it just glowed on the pet scan so he said it was too small to even biopsy.

  2. #22
    Moderator Top User jorola's Avatar
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    hi Bluedawg,

    Great to hear there is a plan in place although is was some frustration to get to it. It can be nerve racking hearing about "glowing" nodes even so small. Me personally, take it out but I am not a dr, what do i know? Chemo will probably get it anyway if it is so small. so why open you up and risk it. LOL i think i just answered my own question.

    Sorry I have not been here for I bit but wanted to stop by and cheer you on. All the best.

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  3. #23
    Experienced User bluedawg's Avatar
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    Thanks Jodie, Yes. I'm with you... if it's suspect I say get it out. I hate the lets watch if approach. My Dr. Says my cancer is very slow moving or slow growing which is awesome but I don't think that should mean lets relax and "watch" it. I think we should jump on it and knock it out.

  4. #24
    Experienced User bluedawg's Avatar
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    Navigating Day to Day Life w/stage 4

    It's hard to know how to navigate day to day life with stage 4 metastatic lung Cancer. I don't even look sick so nobody would know and even people who do know sometimes say I just need to get out and be more active. Hell, I even start thinking the same way... maybe if I just can get an exercise routine going I can turn this around!

    I am going through a phase of “getting rid of everything that’s not necessary” or starting a minimalistic lifestyle. When you don't know how long you have you tend to focus on only what's really important. It’s hard to know how long you have to live because they can’t tell you. Could be a year, could be 10 years. Probably not 20 years is the message I’m getting. The things I know for sure are that I feel pretty shitty most days and I’m not even undergoing any treatments at the moment. I begin Radiation tx February 5th.

    This is my second “good” day in a month. I usually get one or two. By “good” I mean that I was able to stay awake most of the day and get some stuff done. I get tired so easily most days just washing the dishes lands me on the couch for an hour or so. I usually get an hour or maybe two if I’m really lucky before I crash. Then I need to rest or even sleep depending on what time of day it is.

    I used to be very active and so much thinner. I have already given away all of my “skinny” clothes along with a bunch of stuff I just don’t wear. I was just in the basement looking around to clean up a bit more and found a drawer full of all my “biking” clothes that I’ll never fit into again. I also have a beautiful “Look” bike and a Trek Mt. Bike. If I am never going to feel any better than this, I should probably sell them because I’ll never be healthy enough to ride again. It’s been so long since I had any energy.

    The loss of energy started long before the Cancer diagnosis in 2013 so I’m thinking it’s gone for good. Maybe whatever caused me to loose my energy even indirectly caused my cancer. I’ve had Lyme a few times. Maybe that’s what started all this. No one knows. When I’m feeling really desperate and depressed because of my lack of energy, I’ve even considered taking a little cocaine, so I can get stuff done and live more. I did it 20 years ago before I became a health nut, so it’s no stranger to me. But since I am familiar with it I also know the downside. I sure wish I could just get some energy back on my own.

    I bought a treadmill and tried it a few times. It’s easy to think of trying to make that part of your daily routine until you struggle to get through the day and realize once again another day has passed and you did all you could and that could not possible have included exercise.

    I am kind of just rambling but these are my thoughts so I thought I’d share. Is there any hope of getting better? Is it for sure that there is no hope? They are talking about radiating my lymph system from my lungs to the two lymph nodes in my abdomen where the lung Cancer has spread to. One of the radiologists said “If it has traveled that far, it is throughout her lymph system” I believe that is what I heard my radiologist say. Or maybe he said it is at least throughout the system between the two points and that’s why they are radiating the whole area.

    My oncologist said we could go that route or chemo and I opted for radiation… with chemo on deck for next time and then immunotherapy. I’m guessing they don’t put you on immunotherapy until they’ve used up all their cards. I hate this game.

  5. #25
    HI Bluedawg!

    I am stage IV too, and before Treatment I was low energy and just not doing anything or not feeling like doing anything. Then I had chemo for nearly a year, two different ones and they did make me even more lazy. But now I am getting Immunotherapy Nivu and I feel much much better, nearly normal. I got all my energy back and no one would know im sick. They tole me also it looks like I may would have a year left as it had spread to many lymph nodes. But now, here I am!!! Nearly all lymph nodes back to normal, tumor still same. And I feel GOOD! So please don't give up yet. I think it would be good for you to get some counselling or so. Do you have any family who its on your side?

    Please don't give up, we are here for you, anytime.

    Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  6. #26
    Experienced User bluedawg's Avatar
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    Thank You Petra,
    That is really encouraging. I wish they would just give me the immunotherapy already I do not have any family and I have found counseling a terrible waste of time and energy. But I do have great, supportive friends - none of whom would approve of drug use. LOL. My best friend since high school, and her family, are buying the house next door. They should close mid March. I can't wait. She is my medical escort whenever I need one for procedures and such... She is better than any counselor/therapist.

    I am so glad to hear immunotherapy is working for you Petra. Keep up the good work

    -Mary

  7. #27
    Hi Mary!

    Im so glad your friend is coming, this will make a big difference to you and they can kick your ass >> no drugs .
    And I think you have to get chemo before immunotherapy , but may chemo and or radiation works for you.

    Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  8. #28
    Experienced User bluedawg's Avatar
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    Hi Petra,
    I have had Chemo and Radiation and a lobectomy. I guess maybe since that was for the original tumor two years ago, maybe they need to do radiation and chemo on the metastatic cancer in my abdomen as well before immunotherapy. I'll ask my oncologist wgen I see him Feb 16th.
    -Mary

  9. #29
    Oh okay, then let us know ...I cross my fingers
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  10. #30
    Mary

    Sorry that you have a need to join this board. Best of luck with your next round of treatment.

    mike
    At the time - 46 yo male, non-smoker
    Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
    Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
    Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
    Now - Wait, watch, & pray

 

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