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Thread: New to NSCLC forum. Caregiver.

  1. #1
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    Unhappy Questions and Suggestions

    Hello. I'm new to the Forum. I'm a caregiver to my husband, Kris, who was diagnosed 12/28/16 with Stage IV NSCLC, Adenocarcinoma. He had 4 rounds of chemo and he is having his first CT-scan on Monday. I found this group because I was looking for info on what to expect on this next leg of our journey. Funny thing tho, after reading the posts from Zim, I have a newfound sense of optimism! I cannot wait to read some of these posts to Kris! 9 years living with Stage IV lung cancer? Remarkable!! Of course I understand every case is different, but honestly, I've not heard one long term positive outcome with this diagnosis so I'm really encouraged.
    To everyone fighting this fight, I admire and salute your courage.
    Peace to all.
    Connie

  2. #2
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    Hi Connie & Kris,

    I posted this over on my tread. Copied it over to here after Lisa was kind enough to start a thread for you guys. Let us know how the CT goes!

    "I’ll answer your post here. Welcome to our group. I don’t know if Lisa can extract your post to your own thread, so I highly recommend starting your own. You will find that the folks here are understanding, knowledgeable, supportive, and responsive. You will find life easier if you ‘vent’ here with those if us that can relate. And Kris will have soul mate to complain with!

    The side effects of chemo vary by drug type, but all take some time to get over. Lots of fluids, lots of calories help.

    Start your thread and let us know where you are located, your hospital, and enough stuff for us to get to get to know you.

    Actually I’ve only been stage 4 since 2012, but that is still a pretty good run.

    Take care of you, Connie, Cancer can be such a drag on caregivers!

    Regards, zim "

  3. #3
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    New to NSCLC forum. Caregiver.

    Hello all. Hope I figured out how to post this properly.

    ZIM- thank you for your kind response! I absolutely adore your optimism and encouragement. When I told my husband, Kris, about your posts I saw his eyes light up. What a shot in the arm your story was for him/us.

    Kris had four treatments which included Alimta, Avastin & Carboplatin(1 treatment very 3 weeks). Minus the dreaded nausea, vomiting(which intensified after each treatment) those side effects never lasted more than a couple of days, especially the final round as we had him do an IV fluid treatment the day after. He's not lost a hair on this head. He doesn't have much energy but I am trying to get him out more this week. After his scan tomorrow, we are driving to the Bay Area for him to visit family, then next weekend we are flying to Vegas with our daughters for a couple of days of family fun.

    His oncologist, Dr Suzie Melkonian, City of Hope, Providence Holy Cross, suggested after we get the results to rule out mets, she will assess whether to put him on Maintenance or possibly get him into Clinical Trials(insurance permitting). Kris has been pretty definite about not pursuing further treatment if his cancer spread, so tomorrow is weighing heavy on us all. He just celebrated his 64th BD in Feb, and had retired in Nov. of last year. To hear him resolved to "throw in the towel" is quite disheartening, so hearing Zim's story may have been a good thing and food for thought for him.

    LISA-thank you for sharing my post! Looking forward to hearing how everyone is doing and learning from you all as to how to better navigate this scary journey we are on.

    Peace,
    Connie

    Kris, Stage IV NSCLG, Adenocarcinoma 12/16

  4. #4
    Administrator Top User lisa1962's Avatar
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    Connie:

    It is good to hear that Zim's writings of encouragement helped both of you. Our members here have learned a lot from Zim and his story and proves that there are some out there that are living their lives to the fullest in the face of such a diagnosis.

    My prayers go out to you both and hoping to hear some good news from you today. Stay strong Connie and please post your questions. We are here for you.

    Lisa

  5. #5
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    Great news received today! Kris' scan looked "fine". We meet with the oncologist next Wednesday to review full results and plan next course of treatment. I'll sleep like a baby tonight. Kris, in usual fashion, took the news with little emotion. He's very Zen( though he'd be mortified I described him this way!)
    Will follow up next week once we know what direction we are headed.

    Peace,
    Connie

  6. #6
    Moderator Top User jorola's Avatar
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    Hi Connie,

    I just wanted to stop by and say hi and welcome. Sorry you and Kris have had to look us up but glad you have found us.

    I am also a spouse to a hubby with lung cancer - squamous non small cell stage 3b. Mine was also very Zen about things but that would be his word for it. Me - not so in the beginning. If you read my thread on here, lol, you'll see it. But you will also see how awesome everyone here is and all the great support I got. We are here for you too!!!

    Glad to hear things already seem to be going the right direction and look forward to hearing how things go next week.

    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
    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

  7. #7
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    Hello again. We saw the oncologist on Wed and Kris will start Maintenance(indefinitely) this coming week. Same schedule as chemo, every 3 weeks. 4 if we are traveling, scans every 3 months or until...
    It's the "until" part we need to find our way through. We're looking to go to Yosemite the second week in May. Neither of us has been so we're taking our dog, Piper, on another road trip. After that, Kris wants to visit a friend in North Carolina. We're hoping to take our entire family on a trip some where this summer, too. Got to make memories and get out there whilst we can.
    Hope this week provided everyone some joy.

    Peace,
    Connie

  8. #8
    Moderator Top User jorola's Avatar
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    Hi Connie,

    Getting ready for your trip? Hoping all is well with you and Kris.

    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

  9. #9
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    Hi Jodie! We are pushing back our trip a week or so as I'm fighting an on-going(never ending!) case of bronchitis. Hope to be feeling fine and so ready to see the beauty that Yosemite has to offer, soon. Kris has his first Maintenance treatment tomorrow. Curious as to how much or little this affects him. I'm told, with only one drug, it's fairly easy. And quick. An hour and a half as compared to 3-4 hrs. He's seems pretty upbeat. So I'm following his lead.
    Hope all is well on you end.

    Zim- how are you feeling?

    Peace to all,
    Connie

  10. #10
    Moderator Top User jorola's Avatar
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    I think you have a plan there Connie. You get better and hopefully Kris takes well to his treatment so you two can go enjoy yourselves!! Tell us all about it when you get back.

    We are good here. Spring may have finally arrived in good old Alberta, Canada...watch now I said that it will snow again lol.

    You 2 just go have fun ok?
    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

 

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