June 28, 2017 at 10:02 pm #92119
Off keytruda. Stable liver and lymph hit cancer spread to abdomen
On to folfuriJune 22, 2017 at 8:00 pm #92118
Nice to hear from you. Most people believe that palliative care is end of life care. That’s a misconception. Palliative care should be routine, no matter what serious illness. With this cancer one should take advantage of everything offered. It’s all about making the patient feel better, nothing else. And, one is not committed to. Patients have control in this. .
MarionJune 22, 2017 at 1:09 pm #92117
Thanks for the kindness.
I agree on the palliative care. Wife sees that as dying and doesn’t want anything to do with it. Meantime we wait until the next scan Monday with whenever the results are, and potentially more treatment Wednesday(best case).
She’s made it downstairs more than once in the last 24 hours so maybe that’s progress.June 18, 2017 at 12:14 am #92116
deadlift….so sorry to hear of the nearly useless trip to sloan. Is the oxy controling her pain?
I often wonder about the issue of hydration. We are to stay hydrated but as in your wife’s case accumulation of fluid makes her uncomfortable.
When is the next Scan scheduled?
Also, I think you wife would benefit from palliative care. Palliative Care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
See Karen’s suggestions:
Palliative care should be implemented at the beginning of any serious or life-limiting diagnosis. It restores control of decisions to the individual.
Palliative care practitioners work with individuals to control symptoms related to the illness, or the treatment. This includes pain, nausea/vomiting, appetite and taste changes, nutrition, etc. With any diagnosis that is serious, a provider team should be established to care for the individual holistically. This may include a medical oncologist, surgical oncologist, radiation oncologist, palliative care physician/nurse practitioner, social worker, nutritionist, clinical nurse navigator, and others.
The following podcast is an excellent explanation of palliative care/symptom management, and is meant to help explain how individuals and caregivers can care for themselves throughout their journey.
https://soundcloud.com/get-palliative-c … -diagnosis
-Karen, BSN, RN, CHPN
Thinking of you and sending tons of good wishes your way,
MarionJune 17, 2017 at 10:09 pm #92115
Well. She did feel a bit better after the drain. Only got 1000cc so not a ton. Had her on diuretics for awhile. Then gave her iv fluids last trip to the city, and moved up her next scan. This week she had ob/gyn and they checked her, way dehydrated, gave her 3 bags of fluids. Then she felt pressure again figured needed a drain. I took yesterday off to get her to the city as they were not sure any place local would give her a drain without her records. Bad logistics on our part. Course, sloan in the city said, no fluid, get on your pain killers and go home. Huge waste of time when she’s weak and tired and sitting up is uncomfortable Least they gave her some oxy after I asked. Like you know it’s a 2 hour drive, plus rush hour, plus she’s here cause she’s in pain and uncomfortable. Give her some drugs for the ride.
she’s now on the 12 hour oxy tabs. she has a script for the fentonal patch though she doesn’t want that cause then she can’t take baths or go in the pool.
Really a shit time. She fully expects the next scan to kick her off keytruda. I think next would be folfuri chemo, but I’m wondering if she’s miserable and on chemo if that’s a good choice. Wait and see what the doctors say i suppose. no need to suffer twice and think about it until we have to think about it.May 22, 2017 at 5:19 pm #92114
deadlift…..absolutely, the abdominal drainage will ease your wife’s discomfort. One never knows who will respond to the immune checkpoint inhibitor. We have seen some remarkable outcome and I wish the same for your wife.
MarionMay 22, 2017 at 1:57 pm #92113
Didn’t see another keytruda thread
Wife has had 3 treatments. After the first two they didna cat scan and saw mixed results. So two more treatments and see.
She’s much weaker and having lots of issue with eating and being tired. She’s also bloated from fluids so they are giving her diuretics for a week and possible a drain this week. Hoping a drain helps her feel a little better.
I’ve read keytruda has 50% response rate. Doctor told wife 20 %success rate. Wait and see.April 20, 2016 at 6:25 pm #12378
Colleen reports on her Mom’s spectacular response to http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12512
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