Calling all Stage IV Survivors

Laura88
Laura88 Member Posts: 47
edited March 2014 in Lung Cancer #1
Hello my good friends. Well, the day before Thanksgiving I was so, so happy in remission and hoping again for surgery to cure this awful disease. Then I started having lots of pain in my hips -- thought it was from bending over so much cooking turkeys - LOL. A PET showed abnormality and an MRI confirmed metastatic disease. Oh my God a two week remission. Okay - my husband and I gave ourselves yesterday and last night to feel bad for ourselves and now it is again march forward and fight hard!! I start chemo -- again -- next Friday. So -- I am begging for all Stage IV survivors to respond and tell me they are living long, wonderful lives with this disease. Soccerfreaks, aka Joe? Staying calm? I know there are a few of you out there -- please, please rally for me with support? I will return the favor as needed to anyone else -- I promise. Thanks ---

Comments

  • Steve12
    Steve12 Member Posts: 2
    #2
    calling all stage iv
    On August 14th we recieved our bad news. Stage iv with mets to the spine and chest. Tumor was 8.5cm in left lung.
    Also at the time i was being treated for pnumonia. 6 days in hospital.
    We started chemo on the 17th. After round 3 tumor shrank to 1.5cm.
    Finished 5th round 5 weeks ago and Tuesday MD called to say that he cannot find the tumor on the CT Scan, chest is clear and yes there are spinal lessions, if they are not bothering me lets leave them alone for now. Spot radiation later.
    My red count is very low (3.1) so I am exhausted, So lots of rest. Side effects of chemo are bad.

    1. Between good medicine, prayers (lots) attitude, lets through in a miracle or two, hopefully we can all beat this dreaded disease.
  • laconetta
    laconetta Member Posts: 4
    #3
    Steve12 said:

    calling all stage iv
    On August 14th we recieved our bad news. Stage iv with mets to the spine and chest. Tumor was 8.5cm in left lung.
    Also at the time i was being treated for pnumonia. 6 days in hospital.
    We started chemo on the 17th. After round 3 tumor shrank to 1.5cm.
    Finished 5th round 5 weeks ago and Tuesday MD called to say that he cannot find the tumor on the CT Scan, chest is clear and yes there are spinal lessions, if they are not bothering me lets leave them alone for now. Spot radiation later.
    My red count is very low (3.1) so I am exhausted, So lots of rest. Side effects of chemo are bad.

    1. Between good medicine, prayers (lots) attitude, lets through in a miracle or two, hopefully we can all beat this dreaded disease.

    my boyfriend was diagnosed
    my boyfriend was diagnosed on August 24 as stage iv, with lymph nodes involved and 5 spots on his brain.Gama Knife to the brain. After a few weeks of aggressive chemo, his scans showed the tumors shrunk by 30%. Then his next scan showed 2 more spots on his brain and one on the liver.He is now reciving Taxotere..next scan Jan 20
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    Hang in there!
    I went looking for and found Stardust1's post, Laura, wherein she asked the same question and received an enormous number of responses, and was going to suggest you read that one, but it turns out you have already been there, besides which it seems that respondents got off-subject fairly quickly, as we are wont to do.

    Still, you might want to revisit that one and read it from the beginning if you have not done so recently.

    I am surprised, frankly, that the word 'confirmed' is being used in your case as a result of an MRI, when it is my own DRAMATIC experience that scans confirm nothing, really, that they need the stuff in their hands (biopsy) if they are really to 'confirm' anything.

    On the other hand, I imagine that such distinctions are six of one, half dozen of another to you right now.

    I am sorry to hear this news, Laura, to be sure, but as you and I both know, it is not the end of the known universe. You mention stayingcalm, and I submit that she is an excellent example of someone maintaining and fighting and living. There are others. militiaman no longer habituates this site, but he is alive and well and being his usual flirtatious self on facebook instead :). There ARE others.

    Me, I was only stage 4 for two or three months, until they got it right (after which they never could figure out whether the lung stuff was mets or not).

    You are in my thoughts, Laura.

    Best wishes for a hopeful and healthy new year, my friend,

    Joe
  • cobra1122
    cobra1122 Member Posts: 244
    #5
    Stage 4
    Laura, I was so sorry to read your post, but dont give up. I have been on this rollercoaster ride for 2yrs now (08) and still going, including now a year on Hospice, but I haven't given up. When I received chemo (pallative ) for 8 rounds they had to stop because of other health issues being complicated, but it helped and I have live ling past all my diagnosis and still going strong, so dont give up dug deep and use the positive attitude and support to sontinue the fight, sometimes there are stumbling blocks along the way, but dont give up.
    With all my health issues my wife and I are just thankful for everydday, but we strive for the next we of course have no long term plans but we do plan for a future , because we have met so many long term survivors on this site it make us realize that I am still a fighter with a lot of life left in me.
    Dont let the disease take your drive from you, you and your husband need now more than ever to dug that positive attitude deep and lean on each other for strength to get through this.

    You have Our Support, Our Prayers, and Our Best Wishes to You, Your Husband, and Your Family,
    Dan (cobra1122) and Margi Harmon
  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #6
    Stage hmmmm?
    I'm not actually sure what stage I am, I've never really asked, maybe because I was afraid of what the answer might be :)

    My mets were to the brain and mostly taken care of with surgery and whole-brain radiation...I have an MRI coming up, and I'm kind of anxious about it although all my blood work has been fine, so far. My issues currently are really due to emphysema and not cancer - I've had a couple of lung collapses and an air leak that won't quit. Had a pleurodesis procedure which went well, however.

    I guess the point is I'm not ready to give up the ship yet, I have far too many library books to process for the public and to read myself, so I'm going back to work after another week off!
  • scgwriter
    scgwriter Member Posts: 3
    #7
    26 months since Stage IV diagnosis
    Hi there,

    After diagnosed in Nov. 2007 with primary lung cancer with brain mets, I'm happy to say that, while not cancer free, I've decided to have peaceful co-existence.

    Had the walnut-sized brain tumor removed right away, whole brain radiation, then six rounds of Carbo/Taxol, immediately followed by Tarceva (which I loved) for 15 months. After a bit of tumor regrowth, I unsuccessfully tried Alimta last fall, and am now participating in a trial at the U of Minnesota that combines Topekatan and Avastin. So far so good, but I don't get scanned till March.

    I can tell you that I am married, have four kids (ages 12, 13, 15, and 17), work full-time at a job I love and am enjoying life. I just want to keep on keepin' on until the next awesome drug comes along -- and pray that I'll be here to see all my kids graduate and someday be a grandma. Is that too much to ask? No way. Keep the faith, believe in miracles, and find the joy around you every day -- even when you're sitting in that chemo chair!

    scgwriter
  • Laura88
    Laura88 Member Posts: 47
    #8
    scgwriter said:

    26 months since Stage IV diagnosis
    Hi there,

    After diagnosed in Nov. 2007 with primary lung cancer with brain mets, I'm happy to say that, while not cancer free, I've decided to have peaceful co-existence.

    Had the walnut-sized brain tumor removed right away, whole brain radiation, then six rounds of Carbo/Taxol, immediately followed by Tarceva (which I loved) for 15 months. After a bit of tumor regrowth, I unsuccessfully tried Alimta last fall, and am now participating in a trial at the U of Minnesota that combines Topekatan and Avastin. So far so good, but I don't get scanned till March.

    I can tell you that I am married, have four kids (ages 12, 13, 15, and 17), work full-time at a job I love and am enjoying life. I just want to keep on keepin' on until the next awesome drug comes along -- and pray that I'll be here to see all my kids graduate and someday be a grandma. Is that too much to ask? No way. Keep the faith, believe in miracles, and find the joy around you every day -- even when you're sitting in that chemo chair!

    scgwriter

    Thank you
    Thank you all so much for your posts. I knew I could count on you to send hopeful words. I am almost done with WBR -- not nearly as bad as I thought. One more week and then I rest a week or two and start chemo up again. You are all so right -- it is what it is and attitude is most of it. Again, thank you all. It is good to know I'm not alone out here. Thanks, Laura

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