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Thread: Which way do we go?

  1. #1

    Which way do we go?

    Hi All!
    After my diagnose I didn't felt so bad, I am really realistic and know life will end with dead. But still with 47 it was a shock.
    But now since I am reading about Lung cancer and I did read a few Threats here and there, I be thinking about how do I die? When you read around the most people with Lung cancer don't really die from Lung cancer , mostly it spreads to other organs , the brain the blood or so and that's what kills us. I'm sorry I don't want to make you feel bad but I got this all the time in my head, and every time I go to a new scan I am afraid to hear where it may has gone to now.
    Do you all think about this? Lately I am very emotional, but I cannot talk with my Hubby much about this, as it gets him very upset and then he says don't worry you will still be here in ten years. I think all this is much harder for him to accept.
    So I don't tell him much when I feel not so good , I did read Jodie's Thread and it did make me smile sometimes but then I was crying, and thinking it makes a big difference just to have someone to talk to who goes to the same thing and know how I feel.

    I hope I didn't upset you all with this , but cannot stop thinking about this.

    Petra

  2. #2
    Newbie Top User BobInBonita's Avatar
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    Petra,

    Welcome to the forum. We are all here because either we or a loved one are facing the same prospect that you are. I have no experience with lung cancer, but your questions seem to apply to all cancers, especially the more deadly ones. All of us worry about whether we will be one of the lucky ones, or if fate will catch us sooner than we would expect. None of us can predict what will happen or when, but we know it is now much more likely than it was before.

    Once we start down that road, it leads to questions about just how things will unfold. In my case, I can tell you that wondering about how the end will come is a dead end road. There simply are too many possibilities and none of us (or our doctors) can possibly predict exactly when or how things will happen. Especially early in the process, it is much better to focus on what you can do to beat the odds and live the best life you possibly can. Even though the odds may be against us, the odds are even worse if we do nothing. Early on, I recognized that eventually my disease would probably win, but I am still fighting it and enjoying most (but not all) of life four years later. When the time comes to admit defeat, it will be much further along and I will know better where things have spread and what that means to how things will end. Until then, just keep on keeping on.

    Please ask any questions that come up. Hopefully we will be able to help.

    Best wishes to you and your husband,

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  3. #3
    Administrator Top User lisa1962's Avatar
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    Petra:

    Sorry to hear of your diagnosis but it sounds you are very strong and handling it in the best way possible.

    Bob has given insight on his particular situation and hope you will find strength in what he has written. All of here on this forum, are a community made up of ones diagnosed, caregivers and loved ones. We are always here to help as you make your way along this journey.

    Are you seeking treatment? If you would like to and feel comfortable providing further details, it may help our members respond to your specific questions.

    Please feel free to post anytime.

    Lisa

  4. #4
    Hi Lisa!
    I was diagnosed in October 2015 NSCLC stage IV, Metas in all upper Lymph Nodes. Had Chemo for 6 months, tumour didn't grow but lymph nodes did, so other chemo for 4 months , tumour only did grow a bit but more lymph nodes and bigger now ( 17 mm ) and new spot in liver . So now we try Opdivo immune therapy. Just had my first one, so far no side effects. Its just that lately I am not so optimistic anymore , just more emotional. But I think that's normal. Im really happy that here I found a place to talk. It helps.
    Thank you all

    Petra

  5. #5
    Moderator Top User jorola's Avatar
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    Hi Petra,

    I am sorry you have had to seek us out but think you are very brave to ask the questions you did. It is hard to talk about. As a caregiver I wonder all the time. Will it come back? Where will it strike if it comes back and how long will he have? Will it be hard or will it be peaceful road? So many questions. It is hard not to think of them even with my husband being NED.

    I think it is because we are human and we are a curious species. We want to know. Few can do the just live each day as it comes. I try but yes those questions always have a habit of sneaking in there from time to time. Does it mean we should let it consume us? No. Like Bob said there are too many possibilities to answer your questions right now. And you have treatment coming up - opdivo that may stave off the need to answer the answers for some time. I know you are having a hard time feeling positive right now and that is ok. Let yourself have a moment. We cannot be super strong 24/7. Have a moment and then try to regroup and refocus on the possibilities in front of you.

    We are here to walk this road with you and answer questions the best we can by sharing our experiences. This is a safe and excellent place to talk so in that way I am happy you did find us.

    Take care and keep in touch!

    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
    June 24 - tumor 1/3 the original size
    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

  6. #6
    HI Jorola!

    Thanks for your nice words!!! Yes I think I have to try to get back being strong. And to stay positive. I am still working full time what helps me too as I don't have too much time to think
    I am lucky to have a great employer who did organise a very quiet job for me here but I still get paid the same money!!! They are great! Will see my Oncologist next week and ask her more questions.

  7. #7
    Hi All!

    So did get my second treatment today, Lymph nodes did go down again, so Doc thinks as me it was may a good sign as my Immune system starts to fight!!
    So far no side effects
    So still fingers crossed... see you soon.
    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. #8
    Administrator Top User lisa1962's Avatar
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    Petra:

    Good to hear your update and your positive upbeat attitude!!! Keep us posted when you can.

    Lisa

  9. #9
    Moderator Top User jorola's Avatar
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    AWESOME! We always enjoy hearing good news Petra!
    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
    June 24 - tumor 1/3 the original size
    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

  10. #10
    Thanks Lisa and Jorola...will keep you updated and will fight
    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

 

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