constant pain

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  • #53995
    marions
    Moderator

    devastated….This is what I have learned: pain and nausea can accompany this cancer with varying degree. In order to eliminate all pain often times it becomes a balancing act of staying alert vs. a higher form of sedation. Your pain doctor is the most qualified in this area of expertise and please, don’t hold back from contacting him/her. The same goes for nausea. It can be debilitating therefore, you need to work closely with your physician and the care team on this issue.
    Personally I am a big believer in suppositories although; at one point we had to switch to intravenous medications. As you see, with this disease it takes some trial and error and ever changing interventions. Does your husband have regular bowel movements? If not then you might want to talk to the physician re: stool softeners and/or laxatives. We used enzymes before meals to aid in the digestion and focused on high protein meals. Again, there are no foolproof ways to go about it just trial and error. You are doing everything right be staying inquisitive and addressing each issue as it comes.
    All fingers and toes are crossed for your husband to respond to the current treatment as some of his symptoms may lessen or even disappear.
    Hang in there.
    All my best wishes,
    Marion

    #53994
    gavin
    Moderator

    Hi Devastated,

    I am sorry to hear about your husbands pain, thats not good. As Lainy says, it could be down to the cancer or someting else, when do you meet with the palliative care pain md? If it is some time untill this meeting then I would also siggest getting your husband seen quicker by your onc if you could, or maybe try and bring forward the app with the md at Mass General. Pain, or an increase in pain or the meds not working well is something that should be looked into asap in my opinion.

    How is the Zofran working for your husband? If they do not work well then there are a lot of other meds that could be tried for nausea. Also, you said that his last scan showed an increase in the tumours in his liver, when was this scan done? It could well be the case that your husband is having trouble digesting these fatty foods, so perhaps he could try less fatty foods. When my dad was having digestive issues, his GI specialist advised him to eat foods that were easier for the body to break down, such as minced beef, soups etc, foods that were smaller and softer.

    The nutrition board here may help throw up some ideas, as will the search function at the top of the page.

    http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12

    Hopefully others will be able to chip in with some other food ideas, and I so hope that you can get some help for your husbands pain and get it under control.

    My best wishes to you and your husband,

    Gavin

    #53993
    lainy
    Spectator

    Wow. He is taking some heavy duty stuff. I am remembering now that Teddy’s pain never went totally away but he claimed it was ok at a 1 or 2. Guess the story will tell if he gets better his ‘off’ week from chemo, lets hope so.

    #53992
    devastated
    Spectator

    Lainy: We are seeing a pallative care pain md at Mass General. He is on methadone 3x a day (which has been increased appropriately) and break through dilaudid. It can sometimes bring the pain to a 2 or 3, but never goes away. He is also on zofran 3x a day.
    I too believe that with today’s medication that no one should be in pain. Since his diagnoses he has had pain. The pain is in the center of his abdomen, which once again is where it has always been.
    Having this be his “off week” of chemo we were really hoping that he would be feeling better.

    #53991
    lainy
    Spectator

    Hi Devastated. The pain could be the Cancer or something else, you should really contact his doctor that the meds are not working. He may need a higher dosage.
    Teddy was on a long acting Morphine 2 X a day with an hourly break through dose if needed. I believe with Cancer pain you have to keep the Meds up or it gets out of hand. Also what works for some does not work for others. No one should have to be in pain with all the choices today, please call the ONC asap. Comfort is the key word around here. Where is his pain? Also ask the ONC about nausea meds. They need to get all of this under control.

    #5800
    devastated
    Spectator

    My husband was diagnosed with stage IV cholangiocarcinoma in June of this year. He has been on a few different chemo treatments until he could no longer tolerate them. His tumors were stable if not improving on the fulfox/oxi treatment, but then nausea and vomiting became an issue. He then tried oxi/xeloda and that didn’t work. The latest ct scan revealed increase in tumors in liver. He is now on gem/cis (finally!) which he seems to be tolerating well. We just finished the first cycle and will do one more and then ct scan.
    My question is the constant pain. His pain mgmt has been switched from oxycontin with breakthrough oxycodone to methadone with breakthrough dilaudid. He takes a very large amount and still has moderate pain and nausea. Is there something that we are missing to help control the pain?? Do you find that fatty foods increase this? If so, what should he be eating? Due to weight loss, he gravitates to high fat foods, but I wonder if this is compounding the problem? Please help.

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