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Thread: Father of my sons has stage 4 lung cancer. Significant edema in feet and abdomen

  1. #1
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    Unhappy Father of my sons has stage 4 lung cancer. Significant edema in feet and abdomen

    The father of my sons (Mitch) was diagnosed with stage IV lung cancer in Jan 2010. He had been responding relatively well to chemotherapy and the tumors were holding steady. (He's had tumors on some lymph nodes in the chest as well as on the liver). Over the last three weeks there has been a rapid decline in his health. Pain has been a significant hinderance during recent days, however for the past several days (after the doc switched his pain meds to Morphine Sulfate), his appetite has been much better and he's been getting around more than he has in weeks.

    We have spoken about hospice, but so far we have not gotten them involved. I think Mitch is a bit frightened at the idea of palliative care, but I've been hoping every day that he will reconsider. He is developing a couple of pressure sores since he is most comfortable sitting in his recliner, and thus spends a great deal of time there (they are quite mild so far, but I know how quickly they can get out of hand). I am most concerned, however, by the swollen abdomen and feet. The edema immediately makes me fear liver failure. We see the doctor on Wednesday. I'm hoping they can do something to make him more comfortable. He has the most amazing doctors we could have ever asked for. They have done everything possible to make him as comfortable and as pain free as possible. Please keep us in your prayers. Our sons are only 12 and 9 and they are taking this very hard.

    Amanda

  2. #2
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    I am so sorry that your family is fighting this awful disease. It must be heartbreaking for your sons as well. I can tell you that my experience with Hospice has been very good. I wish everyone had access to them when they were needed. Good that you all have such confidence in your medical team... that's so important. Glad that he is feeling just a little better lately and has an improved appetite. Feel free to come back whenever you can and keep us post on how you all are doing. We're great listeners. I'm sending out prayers for strength and comfort to you all. God Bless.
    Irish.
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

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    Thank you so much Irish. This is the hardest thing I've ever been through in my life. Mitch and I have been separated for nearly 7 years, but when he was diagnosed I couldn't imagine anyone else seeing him through this. So he moved to SC from FL and I have been his caregiver ever since. Until recently it hasn't been all that taxing, but lately the stress is getting to all of us. We have been praying for so long for a cure and for a miracle... now it seems that he has resigned himself to the idea that he is not going to be able to beat this horrible disease. We are enjoying every moment we can together and with our boys.

  4. #4
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    I know this is such a hard time for you all but what a special gift you are giving to Mitch and your boys. It must mean the world to him to have his boys nearby. Walking that final journey with my Dad last summer was by far the hardest thing I've ever done. But along that road there were so many gifts along the way. It changed who I am, as it will change you and your boys as well. Your priorities will change and you will come to truly understand what's important in life. Be sure to take extra special care of yourself, as you said, this is very stressful, it is also very demanding and you will find yourself exhuasted as this goes on. Do you have a Hospice team involved yet? If not, be sure to discuss this with his doctor.... they will be your lifesaver as Mitch declines. That seems so sad to say but watching a loved one decline is even tougher to watch. My heart and prayers go out to you all. Be sure to come back when you can and keep us post on how you all are doing. God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  5. #5
    Moderator Top User Gillette's Avatar
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    I can only echo what my good friend irish has posted before me. You are a blessed person to see him through this, and you will never regret it- no matter how hard it is. Do - if he will have it- get hospice in they are AMAZING- from equipment to support, to care, - EVERYTHING. they will be there for you and your young boys also, n ow and after their beloved dad has shed his earthly trouble and move on. Hospice helped me find a funeral home when Ben declined so quickly and passed that last day. I cannot say enough good about them. The care giver that came after he passed and helped me ready him for the funeral director(talk about a heart wrenching thing to do), I would see her at the facility I work at- and she would hug me close every time- they are worth their weight in Platinum, never mind gold!!! I cared for my husband, and although it was the hardest thing I ever did- as I sat crying telling him I loved him as I watched him take his last breath- I would do it all over again in a minute.(i would choose for him NOT to have cancer, of course, but ...) My son was 19 at the time , and living at home. He did much better with his Dad's passing than my elder daughter(Ben's step daughter) , who was not here as much , as she was busy with her life and family. As irish said- be good to YOU too. It is important for Mitch to know you and the boys will be ok when he has gone. He knows you all will miss him, but if you are ok, he can be at peace.
    The edema- Ben had a bout with it and we traced it back to the meds they gave him for his numbness in hands and feet- they had given him as part of his treatment early on- he had a bad reaction to them after a couple of doses. We wound up in the er, and they feared a clot, but didn't find any. The tumor in his lung was also pressing against a major vein, and restricting some of the return flow which they felt added to the edema. My prayers and love go out to your family. I pray for comfort and peace.
    Kathy: still hearing Ben's music, and feeling his love: but from the Heavens now

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    Mitch has been very confused and disoriented for the last couple of days... He was recently prescribed Morphine Sulfate and I'm concerned that this is keeping him in a very confused state. In moments of coherency, he says that he doesn't want to take the morphine because of how his head is feeling. I'm not sure what to do. Right now the doctor has him on the morphine sulfate every 8 hours and oxycodone to be used as needed between the doses of morphine sulfate. I don't know if it is the medication or the disease that is causing this, but it didn't start until a couple of days after he started this medication.

    I have called the doctor and am waiting on a call back. Its rather scary seeing him this way. He will be talking to me and just drift off or start saying something completely off the wall. Like this morning he claimed to have gone to the store late the other night and came home to find all the neighborhood dogs in our yard. Then he stopped himself and realized that that couldn't have happened since he hasn't driven in weeks. Not sure what to do from here.

  7. #7
    Administrator Top User pbj11's Avatar
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    Hi Amanda,

    I'm sorry to hear of the confusion issue cropping up for Mitch. I've seen a repeated pattern here where both the doctors and hospice have a tendency to over-medicate. I've always been of the opinion that what I don't need for pain control (post-surgery), I don't take. Scale back a bit on the medication and see if his pain is under control, but he's more coherent.

    It's frightening to see them act and talk in this way. I went through a day of it with my husband and figured out fast that it was the result of a muscle relaxer the doctor had him on. That got chucked fast, as he was getting ready, with his portable oxygen, to go drive.

    I also know how it is when hospice is not involved. I was on my own, as we had agreed not to bring a third party into the mix unless it got to the point where I couldn't handle things on my own. I was just moving toward getting morphine, for the breathing, a few days before he passed.

    We're here to support you. You're not alone in this and I truly honor you for taking on this responsibility. We had a moderator who did the same thing for her ex-husband and God will remember your kindness.

    Keep us posted and let us know what the doctor says. Oh -- how did the appointment go with the doctor yesterday? What was his take on the edema?

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

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    The nurse from the doctor's office called back and said that the doc thought it was probably an effect from the morphine (as I suspected) and to scale back his dosage from every 8 hrs to every 12 hrs. Although I'm not sure thats going to solve the problem. He took his last dose at 7am this morning and its 2:13pm and he's still loopy as can be. I would have thought if it was the morphine, that it would be starting to wear off by now?

    Problem is: Medicaid (which is the only insurance he has), is giving us all kinds of crap about not wanting to pay for his narcotics. He's had numerous prescriptions filled (trying to find the right combination of pain meds through trial and error) and now they're not wanting to fill new prescriptions unless the docs and nurses jump through a ton of different hoops. God I HATE dealing with this insurance company! Just when it feels like things can't possibly get any worse, they have to complicate matters further.

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    Mitch was admitted into the hospital this evening. He's hooked to oxygen and is fairly incoherent. Please... We need your prayers.

  10. #10
    Administrator Top User pbj11's Avatar
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    Holding you and Mitch in my thoughts and asking for God's comforting presence be with all of you. I'm sorry, but know you're assured that he's getting all the care he can at the hospital. Sending hugs.

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  11. #11
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    The doctors aren't sure he'll make it through the night.... I am just devastated, watching him breathe so shallow and his breaths are only coming every now and then... I know the end is near. I am going to miss him so so much....

    Very low blood sugar, very high potassium. Kidneys aren't working properly and the confusion was caused by very highly elevated levels of ammonia... My heart just breaks for him and for our little boys.

  12. #12
    Administrator Top User pbj11's Avatar
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    Oh Amanda --- I'm so very sorry. The rise of ammonia never crossed my mind for the confusion. That happened with my Dad when he was at the end of his liver cancer.

    Kidneys shutting down are a very real sign that there isn't much time. That happened to both my Dad and my husband. I think the doctors are right about the timing.

    What a rotten disease that will rob his sons of their Dad. I hardly know what to tell you. He does know you're there. Sit with him, hold his hand, talk with him..... They hear you, even in an unconscious state.

    May God be merciful to him and your family. Know I have all of you in my heart tonight. What a sad time.

    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  13. #13
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    Hi Amanda, I'm sending prayers for strength and comfort to you all from Canada. God Bless you all at this very sad and scary time. I so sorry you are all going through this. We're here when you need us.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

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    I knew it was coming back on Saturday... I just knew... But I wanted to believe that I was wrong.

    I sit here typing this as I hold his hand and listen to his shallow breathing.... His last bp was 74/44. I promised him at the beginning of this journey that I would be there as long as it took. I won't leave him.

  15. #15
    Moderator Top User Gillette's Avatar
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    my prayers to you and your family at this difficult time.
    Kathy: still hearing Ben's music, and feeling his love: but from the Heavens now

  16. #16
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    Mitch entered into the next life this morning at approximately 11am. I was holding his hand, telling him how much i love him when he left us. My sons are taking the news very hard and right now I'm just a confused, nervous wreck. Please continue to pray for us. Thank you all so much.

  17. #17
    Administrator Top User pbj11's Avatar
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    ((( Amanda )))

    I'm sorry that Mitch has passed. I hope it was peaceful for his and the boy's sakes. My heart goes out to you and the boys as you begin this new life. You'll somehow get through the next days, but we'll still be here for you in the upcoming weeks and months -- whenever you need support.

    Thank you for letting us know. May God hold you and the boys close at this time of such sorrow and help soothe your pain.

    Hugs,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  18. #18
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    I am so sorry for you loss Amanda, I hope you and you boys will soon find some peace and comfort in the fact that you all made his last days as loving and comfortable as possible. God bless you all. We're here whenever you need us.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  19. #19
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    I'm going to miss him so very much... He was the most amazing man I've ever had the privilege of knowing. And it was an honor to see him through this journey, no matter how painful it has been.

  20. #20
    Administrator Top User pbj11's Avatar
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    Amanda,

    It truly is an honor to love and care for someone who means so much to you. It's done with a joyful heart --- and that was abundantly clear in your case. As for missing them? That's something that you'll struggle with for a long, long time. I don't know that you ever stop missing them. I had dreams about my husband last night. I love it. Then I wake up and involuntarily sign that it was just a dream. It's true that time does ease the intensity of the pain you are feeling now, but it doesn't wipe out missing them. I think that's the way God made us, as we could never survive the pain if it stayed at the initial level of intensity.

    It's probably surreal for you right now and that's perfectly normal. I just ask God to give you and the boys the strength to get through the upcoming days. So much activity, when your life had likely ground to almost a halt. It can be overwhelming, with all the people coming out of the woodwork. Suddenly you're thrust into a totally different mode of operation and it's very difficult. God will give you the ability to see this process through. Trust in him.

    I'm so sorry that another family is living this experience. Cancer needs to be wiped out. I wish I could tell you how much I understand and was 'there' in my head with you as you posted toward the end. Have faith and we'll be here Amanda.

    God bless and hugs,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

 
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