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Thread: Stage IIIa Mucinous Adenocarcinoma. Please help me set expectations

  1. #11
    Regular User
    Join Date
    Jun 2017
    Was reading through your thread and really hit upon the similarities of your mom's experience with cancer and my experience with cancer. My doctor also has said my cancer was low grade/ slow growing. Beside the tumor, I also had a nodule in my other lung. I have completed radiation and now am waiting for a follow up CT scan. You are so right when you said the worry is there and the waiting game wrecks havoc on emotions. You said what I feel all the time but what I can't seem to say out loud. Thank you.

  2. #12
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    I have to echo this too. Mick also had pneumonitis and but was placed on dexamethasone not prednisone. His main symptom was the coughing and his onc said that was the pneumonitis. But he reacted poorly to the dex. Oh he was super happy but the energizer bunny. He almost never slept and spent so much money I had to take away the Visa and his debit card (after he went through a few thousand bucks sigh). Also he never shut up. And for Mick that was something as usually he was a laid back quiet sort of guy. Prednisone has less side effects but may take her a bit longer to feel better. I would have preferred prednisone. As for the nodules well they could be from scarring. inflammations (including even arthritis), infections - yes numerous things. So good you are not resigning to cancer immediately. It is tough to sit and watch though, I get that. I preach patience but I am not very could at it myself. My Irish side comes out quite easily. I need to keep myself very busy. Still things are looking good and I am happy for your, you and all the family. Please continue to keep us posted. Sorry I missed your post until now. Not sure what happened there.
    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

  3. #13
    Well, we have some results of a follow-up and they're not good. She's had some significant changes in the past two months. Multiple nodules in her left lung, which wasn't operated on. A couple of nodules in her right lung. We're going to start with Opdivo immediately and hope for the best.

    What a kick in the gut. We thought we were dealing with something that isn't aggressive, but as the doctors state, that clearly isn't the case. Watching our mom go through this is some kind of hell I wouldn't wish on anybody.

  4. #14
    Senior User
    Join Date
    Sep 2016
    NSW Australia
    I hope Opdivo works for your mum as good as for me, fingers crossed!!!!
    Best wishes, 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
    Fingers crossed

  5. #15
    Newbie New User
    Join Date
    Nov 2017
    Hi regiment96,

    There are so many similarities between your mum's and my mum's case, so I can relate to your pain. Both had what we thought curative surgeries and then a kick in the head with recurrence...

    All I can say is that your mum is best equipped with Opdivo. I wish my mum could get it, but unfortunately where she lives it is not covered by our health care system. They are treating my mum with same chemo that was applied as adjuvant and which led to cancer progression/recurrence.

    I will tell you my experience with lung cancer is that even when stage and outcome looks good initially, things can go south easily because lung cancer is known to often have micro-metastases, which is why it often comes back. My mum was initially after surgery staged 1b, then 2b because her tumor was less than 2cm from carina. 22 out of 22 lymph nodes were clear. Happiness till moon and back. Then, she had a recurrence only several months after completing adjuvant chemo. Shipwreck. Her oncologist said that 23rd lymph node that wasn't taken out was probably positive for cancer (?!).

    The moral of the story - lung cancer is a tough beast to deal with. Make sure your mum is not suffering with pain and wish you and your mum all the luck with Opdivo - it can add quantity and quality to one's life. I wish your mum be one of those.

  6. #16
    Thanks again for the responses. Cocolina, your post really resonated with me. In a weird way, it does help to know that we're not alone in this. It's almost disgusting to me to think that it's comforting that others have been there, but strangely it does help.

    I know we're lucky to have Opdivo as an option, in terms of where we live, when this happened, and with our insurance. Still, I've been the one who's been optimistic about this cancer, and I just don't think I have it in me to stay that way. I want this to work sooo badly, but it just seems that the further down this road we travel, the odds of something working get worse, and the consequences more severe. I think yesterday was the worst day of my life, probably the same for my dad and brothers.

    Anyways, I do appreciate the support and am trying to see some hope with this drug. I don't know if the aggressiveness of a cancer has anything to do with effectiveness...we probably don't know enough about it yet to determine if that makes a difference.

  7. #17
    Newbie New User
    Join Date
    Nov 2017
    Hey regiment96,

    You're totally right, it does feel strangely comforting to know that we are not the only ones in this dark place. I even find it comforting coming along for my mom's chemo and talking to other patients and their families. Same was when my mum had surgery - reflecting on these days last year it felt full of hope that she'd be cured and beat the disease. Sounds funny how proud I was at hear when she was walking down the hospital corridor to exercise her lung and increase its capacity to work for both lungs..

    As much as it's hard, I believe one should accept both possibilities. I will admit - I am struggling and although my rational mind says that my mum is suffering and eventually it will be better when suffering ends when death comes, my emotional self, a little daughter, cries for her mummy for leaving so early.

    Your case is different, though. You still have hope with Opdivo. I know you'd want your mum healthy and without the big c, but it is what it is. Thinking of you.


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