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  • #65334
    magic
    Participant

    Hi there,
    you and your husband are in the position where you must talk to your kids now,he really needs to tell them what he needs to,this will make everyone feel better and sustain them a bit.
    He is gravely ill and I think TPN is not apropriate ,hospice will be a great support to you at this time,whether at home or in the facility.
    It is all such a shock isnt it but a bit of extra adrenalin carries us along at this time and helps us through,

    wishing you strength Janet

    #65333
    lainy
    Participant

    ALLA, I am so sorry to hear about all that has been happening and the results, I have been waiting so thanks for posting. You might want to see if you took your husband to an in Hospice Facility if they could then use the TPN. Did you ask Hospice themselves, if they would do TPN at home? Now this is my own personal opinion but if they talked Hospice, if he cannot have surgery, I always say to myself, when is enough, enough. This is an extremely sad and emotional time but trust me, once you make this big decision together and talk it out and have a plan in place it will leave the time to just concentrate on each other. Teddy used to call that 4 months with Hospice, “our honeymoon”. With all that said, we don’t listen to time frames because no one really knows. I do know that by being open and talking a whole lot, it helped us both, it worked for us. Children are much stronger than we think they are and you will all lean on each other. Like you say you want to hear what the Doc says first. IF you have to have your talks, the first sentences will be hard but then your way will be eased. Bottom line is comfort for hubby and for you to be very, very strong now. I am here and please feel free to email me should you want to talk more about what to expect. I am right along the side of you. By the way calling Hospice does not mean the end but they can be very helpful thereby giving you the time to concentrate on each other. My heart breaks for your family. BE VERY, VERY strong.

    #65332
    marions
    Moderator

    Alla….As mentioned before my husband also was on TPN – I believe that it extended his life by several weeks to a few months. I recall asking a physician: as the cancer is progressing, are we feeding the cancer with TPN? The response: you might be feeding the cancer however; at present it is keeping your husband viable.
    Since I have learned that the cancer will take the nutrition needed and unless progression of disease can be halted or slowed, it will deprive the patient of the valuable resource. In other words, regardless of TPN when the cancer does not respond to treatment, it will continue to spread.
    The overriding issue is pain control and that has been achieved so far. The ongoing nausea is difficult to control and as you witness in your husband’s case, medication is not helping much, if at all. This had been the case for my husband also. For him the non-response to anti- nausea medication was indicative of progressive disease.
    Alla, the fact that your husband’s pain has been controlled is a major achievement. Hopefully tomorrow will shed some light on the next steps to be taken by the physicians.

    In regards to speaking with the children, is it possible to involve a social worker or counselor?
    Alla, know that you are experiencing a situation none of us are prepared for, tears come with the territory. You have exhibited enormous strength and determination and you will continue to do so. Please keep us posted – we are in this together.
    My heart is with you,
    Hugs,
    Marion

    #65331
    tryingtohelp
    Member

    Thank you, Marion. Husband is more or less comfortable in the hospital – as much as you can with the tube in the nose and throat… Has nausea, even with anti-nausea meds. Pain pump helps to keep the pain level at about 2. His oncologyst was off this weekend, so no definite plans on what next yet. According to the nurse, the options are limited to mesh stent, if the gastro-doctor is brave enough to try it, or do something like a colostomy bag. Surgery to remove the tumor that caused blockage is not on the table. Found out (also from nurse) that liver tumor had increased to 6 sm and bunch of other tumors in the stomach area, and they started talking about hospice. What worries me, that with hospice the option of TPN is not available, but since he wasn’t eating for a while already, wouldn’t it speed up the process? His weight yesterday was about 107, fully dressed and without food yesterday I’m sure it’s even less now. The nurse was guessing that he might have couple of months. Of course, I’m jumping to conclusions, before actually talking to a doctor. My hubby didn’t even tell me that they were talking about hospice – his nurse told me. Luckily he got our favorite nurse today, that we’ve known since the beginning of this journey and she is wonderful. I guess I was still hoping for better news and outcome (more time), but reality sinks in and I can’t stop crying. Dreading that we’d need to have a talk with the kids – 15 y old and almost 6 y old, as well as talk with each other to discuss all arrangements. Not ready for it at all! Thanks for listening!
    Sincerely, Alla

    #65330
    marions
    Moderator

    Sorry, Alla….try this one:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2658
    Hope you can get some rest.
    Hugs,
    Marion

    #65329
    tryingtohelp
    Member

    Thank you all for the support! I’m relieved that they found the reason for the pain and hopefully be able to fix it soon. He is exhausted from all this pain and vomiting. Lost more weight in those few days. Hopefully we both be able to get some sleep tonight.
    Marion, the link above keeps taking me to the first page of my own post…
    Thanks again, Alla

    #65328
    marions
    Moderator

    Alla….it is great to hear that the pain has been reduced significantly. I hope for both of you to get some rest now.
    Alla, we have had numerous postings on bowel obstructions. I am enclosing a link for you:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=66233#p66233

    Fingers are crossed for things to move in the right direction now. I am thinking of you and am sending tons of good wishes your way.
    Hugs,
    Marion

    #65327
    peony
    Member

    Hi Alla, constipation was a huge issue for my husband. It was the reason for one of his hospital visits. Suppositories, enemas and that colonoscopy drink didn’t work. The hospital gave him go lightly , senna and a ducalex suppository and it worked. Now he is on 6 senna a day and miralex daily and no more constipation. I think its a matter of finding the right cocktail that works.
    I’m happy to hear the dilaudid is working for him.

    Stay strong.

    #65326
    lainy
    Participant

    Hi Hi Alla, well at least they have a beginning, somewhere to start and I am so glad his pain level is down to a 3. I bet you would love to just lay down yourself and sleep for a week! Hope tomorrow is a better day for your hubby. Thanks for all the updates, we really appreciate that. Thinking about you!

    #65325
    mparsons
    Participant

    Hi Alla:

    I’m glad you got at least this partial diagnosis. A bowel obstruction is one of the most painful things one can experience. The NG tubes are not fun, but it should quickly help reduce his symptoms as he decompresses. Hopefully that will make his pain much more manageable.

    Mark

    #65324
    tryingtohelp
    Member

    Based on CT scan – he got bowel obstruction. The ER doctor was rather vague and said he thinks tumor is what created the obstruction. Not sure what else he saw – didn’t give much information. Anyway – hubby is getting admitted to the hospital. They put the nasogastric tube into his nose to try to fix it. It sounded that surgery might be needed or not – they are not sure at this point. Gave him another dose of Dilauded, that is helping. I’m relieved that his pain level is now at 3 vs 10.
    Now my question is – anybody had bowel obstruction because of the tumor and what was done to fix it? Thanks again!

    #65323
    lainy
    Participant

    Hi back at you. Yes, sometimes Teddy got constipation but at that point he was with Hospice at home and took a daily pill for constipation and had no problems after. I would take a constipation pill over the pain any time. BTW At the end I took him to as Hospice facility and they took him off the Morphine and gave him a Fentenyl patch after I said NO it won’t work. When I got there the next day I cannot tell you what he was going through. So they took the Fet. patch off and put him on Dilauded. That didn’t work either. It was a nightmare. Its a whole other story. I am not a Doc as I often repeat but Morp was the best for him.

    #65322
    tryingtohelp
    Member

    Thank you, Lainy and Laurie. I was afraid he was already on too much of pain pills, but his breakthrough oxycodone was only 5mg (2 pills at a time). Of course the patch is now 200 mg now, which didnt make any difference. He also took 20 mg oxycontin twice a day. Did your husbands experience constipation after all those pills? It sounds like patch didn’t work for either of your husbands?

    #65321
    peony
    Member

    Hi Alla,

    Pain control has been a huge issue for my husband as well. He was diagnosed in October 2010 , Stage IV with mets to the spine, omentum, lungs and liver. He was addmitted twice to the hospital to get the pain under control and also was seeing a pain specialist. He is now on hospice and taking 60mg 3 x daily of Methadone, 90mg every 4 hours of oxycodone and neurontin for pain. The pain never seems to go away but is mostly at 5 which he says he can tolerate.

    I know how difficult it is to watch them suffer and writhe in pain. It’s been the hardest thing for me to deal with.

    If the methadone doesn’t start to work I think morphine is the way to go.

    Just the opionon of a fellow caregiver.

    Good luck and keep us posted.

    Best,
    Laurie

    #65320
    lainy
    Participant

    You can ask me anything. I know he was on Morphine and I believe the 12 hour dose was 75 or 100 mg with breakthrough hourly of 50mg. THey started out with less but it didn’t work. The hardest thing is to see our boys in that kind of pain!

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