MissMolly wrote:Steph:
I am on Palliative Care and have been on narcotics for 2-3 years.
Before considering a pain pump, I would think your Palliative Care team would offer you a long-acting narcotic such as the Fentanyl duragesic skin patch. It comes in several dosages, the medication absorbed through the skin (bypassing the bloodstream and liver for uptake/metabolism).
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Karen
Hi Karen,
I’m on the fentanyl patch already. I’m on a 75mcg and change every three days but honestly I didn’t notice any difference between the 50 and 75, and I wonder if I don’t respond to it. I started with the patch and the liquid dilauded is supposed to be my breakthrough but I take about 12ml of it a day right now, 1ml (2 syringes) about every four hours.
I used to just take just morphine pills for pain, then I went to the fentanyl patch with morphine pills as breakthrough but I quickly escalated my patch up to where I am now (75) and when I got up to 50 I said this is crazy maybe we should be reevaluating the morphine pills as pain is still there when I take the pills, and then I noticed I wasn’t full digesting morphine pills it came out my ileostomy and so we didnt know how much I was actually receiving. So I went to liquid morphine sub q and still got no relief - they injected me and waited and watched while I was in the office. So we moved to the dilauded sub q which has been great for 2-3 weeks now, and somewhere in there I moved the patch up again from 50 to 75.
It’s a lot of medication for a fairly low tumour burden and they can’t find source if my butt ache. We know the abdomen wall pain makes sense because there’s a mass there going into the muscle.
As for pain pump, I didn’t realize it would require this kind of tube insertion in the back, I assumed it would be just like getting IV hydration where they hook it up to your port? And I assumed it would be the same type of pump. I call it pain pump but maybe it’s somwthuing else but she said walkman sized and fanny pack and continuous drip slow all day and I can push for a boltus.
I’m a bit discouraged that I sound like a difficult patient or even impossible because it can’t be that I don’t respond to anything and have adapted to everything. I worry I’m running out of options?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab