My 63 year old husband LD stopped Cabo (Cabometyx) when we had Covid (because we took Paxlovid). Now he doesn't want to start up again because of side effects we believe are caused by the Cabo: jaw pain and numbness, body aches, tingling in extremities, pain in the shoulder joint emanating down his arm. He also developed terrible nausea after 3 months on Cabo that cut his appetite down to almost nothing. After 2 weeks off Cabo, his appetite has greatly improved to 60% normal.
LD has a PSA of over 1300 at last count and bone mets/fatigue/anemia that keep him in bed most days. He gets transfusions every 3-4 weeks to help with the anemia. It seems like we've tried everything. Pluvicto wasn't the miracle we were hoping for. We're currently on Xofigo round 4 (reduced mets by 50% but still a lot of pain), Keytruda round 4 and Cabo (cabometyx) holiday.
He takes Oxycodone and ibuprofen for pain (but the ibuprofen seems to be hurting this stomach lately).
We're looking into euthanasia (no rush but best be prepared). We are consulting with our Mt Sinai Oncologist again in the next 2 weeks about whether there's another strategy for the Cabo or other alternatives.
Anyone with experience getting off and on Cabo to minimize side effects? Or other words of encouragement. Or experience with better pain meds?
Wishing you the best,
CA
Written by
Chris_Ali
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in this day and age , pain management has come a long way. I’m no doctor but I do have substantial pain med experience. You can switch to morphine and morphine can be titrated up ( increased in amount until a comfortable level has been achieved ) to a level that keeps him feeling great. Then for break- thru pains, fentanyl lollipops, patches and tablets will work very well for most everyone. For convenience, hubby can get a morphine pump installed to handle things more easily. Talk to your pain management team, pcp and or oncologist to get you started. Even especially troublesome spots of pain where you can’t seem to stop it reasonably with opiates , these can usually be blasted with radiation to kill the offending met.
I hope you can get effective relief for hubby , at this point . Watch those NSAIDS they can cause ulcers , and damage your liver. Myself I’d avoid those for more advanced pain. in me they typically do nearly nothing. If you do use them , get your pcp to write microalbumin and albumin testing , blood and urine , to keep an eye out for kidney damage.
These are suggestions and don’t substitute for direction from your medical care team. Talk this over with them, of course.
I had horrible pain at time of diagnosis and worked up through analgesics to morphine (Zomorph) at 60mg a day. This works well and for breakthrough pain either paracetamol or ibuprofen is enough. I do sometimes worry about addiction and what to do when it becomes ineffective, but this gives me a good QoL, so certainly something to discuss with your doctor.
Addiction for a stage 4 croaker running on borrowed time, addiction probably isn’t much of a concern. It’s not like you will ever need to stop for most. When the level you are using stops being effective, you can reliably “ titrate “ up for relief again when using morphine. When you enter hospice , the main drug ( sometimes only drug ) you will receive will be strong opiates like fentanyl and morphine / derivatives. Maybe oxytocin, or the “ cocktail “ which is morphine and cocaine if strong depression or crying creeps into the picture. The “ cocktail “ is usually only given close to death. Fentanyl has become the white knight of current pain management it way more powerful than morphine and comes in patches, lollipops and injections mostly.
Naturally , your medical team or hospice personnel are the only way you can receive these meds, so they are by nature always doctor monitored. Even in deep palliative care ( me ) …. Kaiser at least …. Keeps you under strong surveillance and monitoring with multiple drug tests, opiate contracts , counseling etc.
all of this strictly IMHO , your medical care team will ultimately make these decisions.
My husband recently started experiencing lots of pain. After a few days with morphine at 5, then 7.5 w/o relief he's now on 10 mg with fentanyl patches. If he starts experiencing breakthrough pain he takes hydrocodone10 and he's mostly pain free now.....except that he took a nasty fall Tuesday night and is currently adding the hydrocodone every 4 hrs. This is all through his palliative care NP. Mine started out saying he didn't want to talk to her about pain but after it got more frequent and sharper, he came around. Didn't want to look wimpy and mostly just wanted to be able to keep driving. He now knows that's over. Your care team can help a lot if you reach out.
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