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Post by goldenblind221 on Jul 18, 2018 16:13:05 GMT
Background: Dad has diffuse large b cell lymphoma. It originally was follicular lymphoma, refractory to all treatments, then it transformed. He was then given Yescarta, but unfortunately did not get the results we hoped for and some of the cancer lingered in his abdomen. So there's nothing else the doctors can offer him at this time, and they recommend hospice.
Question: the cancer in his abdomen is causing him discomfort that prevents him from eating. He gets pain whenever he ears or drinks anything. He describes the pain as when you drink too much water too fast. Though he's only taken a few sips of water, it feels as though he's drank a gallon. Does anyone have experience with this kind of pain? What, if anything, allowed you to eat without pain or with minimal discomfort? We want to shy away from pain medicine if at all possible, because he's already on methadone on a scheduled basis, and has tramadol and dilaudid on an as-needed basis but he hates taking it and pretty much refuses because of the side effects.
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Post by mikklynn on Jul 18, 2018 16:56:35 GMT
One thought, when DH had this feeling, it turned out a tumor was pressing on his duodenum. He had a stent placed to keep it open. That helped tremendously.
Has your dad had a scan of that area?
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Post by scrapmaven on Jul 18, 2018 17:23:57 GMT
Have the doctors mentioned inserting a Jejunostomy tube(feeding tube that goes directly to the small bowel area). It bypasses the digestive tract, so that might help w/the pain. Also, there is an intrathecal pump for pain. It's implanted underneath the skin and the meds target the area of pain. I only have a numbing agent in my pump, but it can hold many different types of pain meds, too. It You get the pain relief w/o the heavy symptoms of an oral pain med or patch. 's very minor surgery. Intrathecal pumps were developed for people with back pain, etc. However, they are also used for pancreatic cancer patients and now dysmotility and other types of abdominal pain. It might be worth checking into. HTH.
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Post by goldenblind221 on Jul 18, 2018 17:30:57 GMT
One thought, when DH had this feeling, it turned out a tumor was pressing on his duodenum. He had a stent placed to keep it open. That helped tremendously. Has your dad had a scan of that area? He had a full pet scan which prompted the biopsy, but maybe we can ask about a more specific scan for the abdomen area, and I will certainly ask if a stent is an option. What a great suggestion, thank you. |
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Post by goldenblind221 on Jul 18, 2018 17:34:40 GMT
Have the doctors mentioned inserting a Jejunostomy tube(feeding tube that goes directly to the small bowel area). It bypasses the digestive tract, so that might help w/the pain. Also, there is an intrathecal pump for pain. It's implanted underneath the skin and the meds target the area of pain. I only have a numbing agent in my pump, but it can hold many different types of pain meds, too. It You get the pain relief w/o the heavy symptoms of an oral pain med or patch. 's very minor surgery. Intrathecal pumps were developed for people with back pain, etc. However, they are also used for pancreatic cancer patients and now dysmotility and other types of abdominal pain. It might be worth checking into. HTH. That actually sounds like a great option, one that he will be very okay with. I'll find out if this is an option for him, thank you so much for sharing with me. |
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Post by mikklynn on Jul 18, 2018 19:09:45 GMT
I hope you can find relief for your dad!
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Post by goldenblind221 on Jul 18, 2018 23:58:58 GMT
I hope you can find relief for your dad! I hope so too, thank you! |
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Post by destined2bmom on Jul 19, 2018 1:19:17 GMT
I am sorry that your poor dad is suffering so bad. I have no advice but wanted to let you know that you and your family are in my prayers.
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Post by goldenblind221 on Jul 19, 2018 2:34:48 GMT
I am sorry that your poor dad is suffering so bad. I have no advice but wanted to let you know that you and your family are in my prayers. Thank you so much for that. It means so much to me. ❤ |
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Post by internetmama on Jul 19, 2018 6:48:05 GMT
I’m sorry your Dad is suffering. When my Dad was on hospice he too refused the “dope” as he called it. In his last few days of life he finally relented and took it from me. Then next morning he told everyone my sister made him take it which made us laugh because she wasn’t there. So at least I didn’t get blamed.  Maybe your Dad will change his mind too. And maybe the hospice team can find something without the side effects that he dreads. |
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melissa
Pearl Clutcher
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Post by melissa on Jul 19, 2018 15:52:00 GMT
He needs a palliative care team involved. This is not the same as hospice. With palliative care, he may continue life prolonging and life saving treatment as long as he desires. Palliative care works to find solutions to improve the quality of his life. This is exactly what they do.
We can come up with all the suggestions we want, but none of us have seen the nature of his tumor burden in his abdomen. The palliative care team will have access to that information and will know what can and cannot be done as well as what is most likely to help him.
So many people fear involving palliative care because they think it means end of life care. It does not.
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Post by goldenblind221 on Jul 20, 2018 3:46:35 GMT
He needs a palliative care team involved. This is not the same as hospice. With palliative care, he may continue life prolonging and life saving treatment as long as he desires. Palliative care works to find solutions to improve the quality of his life. This is exactly what they do. We can come up with all the suggestions we want, but none of us have seen the nature of his tumor burden in his abdomen. The palliative care team will have access to that information and will know what can and cannot be done as well as what is most likely to help him. So many people fear involving palliative care because they think it means end of life care. It does not. This is the perfect thing to tell him. We have an appointment with palliative care this week and he's bumming hard about it. |
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Maybe your Dad will change his mind too. And maybe the hospice team can find something without the side effects that he dreads.
