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Thread: My husband's stage IV journey

  1. #1
    Administrator Top User pbj11's Avatar
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    My husband's stage IV journey

    Hi all,

    In reading some of the posts I realized that I've never really put down what our journey has been like on this roller coaster of a ride that we call lung cancer. I dish out a lot of info, but the following is why I have so much info. My wish is that readers will find inspiration and hope in my husband's story.

    Began with shortness of breath (SOB), tight cough with bloody sputum, 18 lb. weight loss, and night sweats. Quit smoking 23 years before. Treated for bronchial infection. Follow-up with GP and an x-ray revealed something terribly wrong with the lungs. Pulmonologist ran TB test, CT scan, bronchoscopy, breathing tests and his lung capacity was 50%. Next stop was PET scan-land and it lit up in both lungs, mediastinum, & supraclavicular nodes. We wanted so much to believe it was sarcoid, but a VAT's wedge-section biopsy in late March 2005 confirmed our worst fear - Stage IV nsclc Adenocarcinoma with poorly differentiated cells. Extremely heavy tumor burden. Upon waking from surgery and hearing the diagnosis, my husband simply said, "Now we fight!". The time frame from first doctor's visit to surgery was 3-4 weeks.

    Mid-April 2005 the treatment began and he is currently on 6th line therapy. Treatments have included:

    8 - 21 day cycles Carboplatin/Taxol
    12 - 21 day cycles Gemzar/Taxotere (Gemzar days one & eight)
    15 days radiation to one lung tumor
    3 mos Tarceva (didn't work)
    19 weekly treatments Navelbine (Zometa added to protect from more pesky bone mets that showed up while on Tarceva)
    5 - 21 day cycles Alimta
    2 - 21 day cycles Gemzar (days one and eight)
    2 - 21 day cycles Irinotecan. (as 7th line therapy in Sept. 07)

    Also had severe pleural effusion issues requiring 23 thoracentesis procedures ranging from 500 - 1600 cc's on both sides.

    Oxygen 24/7 since the beginning. Procrit/Neulasta added as needed after the first 13 cycles of chemo. PET/CT scans about every three months. My husband is now 70 and, although our world has become much smaller, he is still fighting. Diet consists of whatever he wants to eat and he's all over it because we know that maintaining weight equals survival. He has to fight for every ounce of weight. No special diets -- high caloric content is king in our house. He does take B-6 to ward off peripheral neuropathy, B-50 and Biotene mouth wash for mouth sores. He has also used visualization techniques to fight. Never had a moment of nausea, pain, or peripheral neuropathy. He does have fever/sweating episodes as his own little weird reactions to the chemo. Also, the perennial runny nose! His SOB is the biggest trouble for him and it does get very bad at times.

    Sadly we also lost a very close friend to SCLC during this time, so we know too much about that type of lung cancer as well. We have a huge support network of family, neighbors, friends, and cyber-friends who pray for him constantly. God holds us up always. We remain positive as attitude is key to the fight and we've developed a wicked sense of humor. Laughter is so good for the soul. We always remember where there is life there is hope.

    He has never been cancer free since diagnosis. Our oncologist, on his first visit at the hospital following surgery, told us he is incurable, but treatable. We are grateful for a team of doctor's who don't give up and don't toss out meaningless statistics! My darling husband has beaten tremendous odds and keeps ticking like a Timex, albeit a little slower these days, but he's taken quite a lickin'! As for me, well I'm on a mission to keep my husband with me for a lot longer and you don't mess with a "woman on a mission!"

    Many hugs and best wishes to all here who are part of this fight!

    God bless all of us,
    PBJ

    Post Script -- Sadly, my husband lost his courageous battle in October 2007. I will miss this gentle, giving soul with the easy smile for the rest of my days.

  2. #2
    Administrator Top User brainman's Avatar
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    Thank you, PBJ, for writing out your husband's struggle with Lung Cancer. You and your husband have been through so much! I am impressed by your care and your courage. The two of you are an inspiration to me.

    Bless you both.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
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    PBJ,
    Thank you so much for telling you and your husbands story. It is stories like this that inspires me and my husband. You have assisted me with my questions and I hope to do the same to others. You mentioned that laughter helps your husband, my husband and I bought Wild Hogs and we watched it during a tough time. For that couple hours, the laughter took away the thoughts of the chemo feeling. CANcer has brought a new meaning to our lives. Our new moto in our life is "No worries - No regrets". I get that same feeling from your and your husband. There is a lot of love I feel from your story and your assistance to others. Keep it up. You and your husband will always be in our thoughts and prayers.
    Bless you
    Tina
    I Will Win!!
    Diagnosed-8/15/07
    1st Chemo-8/20/07


    Conquered-

  4. #4

    Keep it up!

    Hey PBJ
    Thanks for sharing your info cause I know it has helped a lot of people.
    When I was on here fighting with my Dad, it helped so much to read other
    people's story down to the Chemo's they tried, changed courses, surgeries, etc. Understanding the "clinical trials" etc. I hope you and your husband have many, many more years together!
    Best of Today!
    sweetcaroline

  5. #5
    mssj
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    Hi,
    I can help you,
    write me to e-mail.
    Bless you!!!

  6. #6
    Administrator Top User brainman's Avatar
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    mssj, if you can help, then post your message on the forum rather than inviting members to email you where others cannot review the information you provide. Consider this a warning. You have posted 2 replies, both extending offers of assistance to people if the will email you. Although not strictly again the rules of this forum, it is highly questionable action and if it continues can get your membership deleted.

    Thank you for your cooperation.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  7. #7
    pbj11,

    Your story gave me lots of inspiration. Your husband sounds a lot like my dad, in terms of their fighting style. My dad was diagnosed with Stage 4 this June and the Dr. said don't count on more than a year and half of life left.

    Just wanted to say your story really made me smile.

  8. #8
    Administrator Top User brainman's Avatar
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    PBJ, NSCLC stage IV is not an immediate death sentence anymore, is it? Your husband's and your courageous fight are testimonies to that. We are truly blessed to have you as part of this community.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  9. #9
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    PBJ, WOW- you guys are amazing. Thank you for your husbands story. It was so special of you to share. Just goes to show how love, support can go a long way.

    Thinking of you both- and thanks again.

    Take Care Inica
    Thinking of you Inica



    ~Nose Cancer~
    ~Car Accident- Broken Back, Ribs, Spleen
    Sternum~
    ~Continous Cervical Cancer~

    My Story-
    http://cancerforums.net/viewtopic.php?t=6731


    9 Lives and still kicking

  10. #10
    Administrator Top User pbj11's Avatar
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    Jim,

    Sorry been away for a bit. Husband hasn't been too good lately.

    To answer your question, a Stage IV diagnosis is definitely not an immediate "let's dig a grave" situation!! True, there is currently no cure for this disease, but there is treatment. As time goes on, doctor's hope it will become treatable like any chronic disease.

    My husband has done it the hard way, but there are many, many 2+ year survivors because of advances like Tarceva. If someone is EGFR positive and can get a good response to Tarveva, the sky is the limit! There are so many more agents in clinical trials as we speak. Have hope.

    Take care everyone -- all of you are in my thoughts and prayers as we face the fight.

    PBJ

  11. #11
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    PBJ, I was wondering what your husband's story is after reading so many of your knowledgeable, thoughtful and loving posts. Thank you. We all need to LAUGH more!

    It is obvious that you and your husband love each other deeply. He is blessed to have a wife like you - and your children must be encouraged to know that he is in good hands with you. You are a strong tower for him. Your story is also an encouragement to all of us as we struggle through this nasty disease.


    Your practical and down to earth care advice are so wanted here.

    Thank you again AND I pray you and your husband receive the strength you need...

    Blessings to all - Katherine
    Kat -
    August 2007:
    73 yo Mom diagnosed Stage 4 NSCL, Non-Small Cell Lung cancer with mets to the brain
    TREATMENT:
    1. Gamma knife surgery
    2. Chemotherapy to reduce size of lung cancer
    3. Lung surgery to remove portion of one lung
    4. Radiation
    5. Brain surgery for aneurysm **this was awful**

    Over one year later, Mom is cancer free and we are all thankful!

  12. #12
    Administrator Top User pbj11's Avatar
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    Thanks for the compliment Katherine -- right back atcha'! Actually, I don't think my husband or children (grown) ever give it a second thought. It is what we do for each other because we are a family. My husband is the tower of strength, I'm just along for the ride. We are fortunate to be surrounded by a large, loving, extended family, wonderful friends, and caring neighbors.

    There are so many strong people on this board and I'm grateful to read each and every story. In low times, they give me inspiration.

    I'm going to have to start putting Band-aids in my armpits though, because God is holding me up a lot lately. He is our strength and I'm thankful that he has big shoulders to handle my times of anger as well as my times of thanks and praise. Our Heavenly Father knows all of our needs and is always with us.

    God bless everyone

  13. #13
    PBJ,

    You are such an inspiration to me with everything you are doing for your husband, yourself and everyone on the board. You and your husband are in my thoughts and prayers.

    Cat

  14. #14
    Administrator Top User pbj11's Avatar
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    Thanks a bunch Cat. We really do need prayers right now, so I sincerely appreciate all call-outs to God. We are hoping this new chemo will help my husband breathe easier.

    PBJ

  15. #15
    Administrator Top User brainman's Avatar
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    With PBJ's permission, I wanted to let all of you know that her husband died on October 12. PBJ is currently the 6th most active member of the Cancer Forums. She has shown so many of us compasion and love during our fights with cancer. I am sure all of us grieve with her during this time.

    She stated that she will return and would have liked to be posting this message herself but is just not ready yet.

    I am sure most of us will keep PBJ in our thoughts and prayers.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  16. #16
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    Jim,

    Thanks for letting us know. I was worried when she wasn't posting as much and mentioned that they were having a rough time. My prayers and thoughts will be with her. We lost dad two months ago and it is harder now than it was then. This disease consumes so much time and attention, it is very difficult to deal with when it is all over and our loved ones have moved on.

    Linda P
    Salem, OR

  17. #17
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    I am so sorry for her loss. My thoughts are with her at this time. She has helped so many of us with her replies.

  18. #18
    PBJ,

    I am so sorry to hear of the loss of your husband. You have given so much of yourself to everyone here during your husbands illness and I hope that when you feel up to it, you come back. Without your advice, I can tell you that my moms experience with her cancer would have been so much harder. You and your family are in my thoughts and prayers.

    Cat

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    God bless you PBJ and your husband. you are in my thoughts and prayers.

  20. #20
    Administrator Top User pbj11's Avatar
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    Thank you all for your very kind words. It is still very difficult for me and I sense that this is just the tip of the iceberg in terms of real grief hitting me yet.

    Bless you all on whatever point you are in this journey. I'll try and post as much as possible, but I tire easily these days and my mind is muddled at times.

    PBJ

 
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