14 months into this journey and it's been bit of a battle to get Oncologist to take my pain more seriously. I saw my pain specialist today and she changed my pain meds and booked me for radiation treatment (Samarium-153) next week.
Oxycontin 80mg 3 times a day
Pregabalin 75mg
Metdon 20mg
Lunaldin 10mg hourly as much as required
I will also be having Radium223 when my PSA reaches a threshold.
I feel a little more positive, maybe I can be more mobile and pain free by the Spring
I assume the plan is for Samarium-153 and not Ra-223 because you are still hormone sensitive. Another alternative is a single zap to your painful bone metastases:
pcnrv.blogspot.com/2019/08/...
Oncologist kept saying, cannot do radiation because you have Mets to whole skeleton, which I understand but he didn't do anything much about the pain I was in. I had to keep pushing to see this specialist.
Radium 223 will start when PSA goes above 2.0, it's on the rise.
Most of the pain is in my legs, although I've started to get more pain in my arms recently. Scan shows Mets to every bone but they said spine is the least damaged and affected area which is positive
Keep hope alive that you can best that pain . Once you do you’ll be a different man.. I’m not good with pain.. I’m Praying for a miracle and mercy for you dear sir. 🙏🏼🙏🏼🙏🏼🙏🏼
Wow ....... 240mg of oxy a day, never mind the fentanyl is a whopping lot of opiates in 24 hours. That’s several times what I’m prescribed in the same period. The average street heroin user only injects 130mg of opiates a day. You are in a place where a forgetful mistake can send you to the ER and/or kill you. I’m sure you have already taken this precaution but you “
Absolutely “ should keep one or better , two, Narcan kits at hand and make sure everyone there knows how to use them. Just IMHO. Kaiser makes me keep a fresh kit on hand 24/7 and I’m nowhere close to your intake. Judging from your prescriptions , your pain mgt team is taking you VERY seriously. You are at a place that would make a lot of pain mgt people quite nervous.
Maybe you could find a few sources ( uptake scan ) of your major pain contributors and get them zapped to allow you to back off those dangerous levels of opiates ., at least a little. .. that’d be something I’d want to take up with your caregiver team.
Two additional thoughts just for your back burner .. stepping down ( cleaning up ) from that much opiates can and will be a bit challenging and difficult, that’s one big monkey you are describing, and ... long term use of big opiates ( sooner in some than others ) will nearly always have impacts on your emotional states and clarity of thought.
Just my personal thoughts here ... I’m not a doctor and don’t even play one on TV and your mileage will vary for sure. Always defer to your medical team for stuff like this . ( get that narcan kit brother ).
Clearly you have some big time pain there brother ... here’s hoping you can get that , at least , mediated some to allow you to use a bit fewer / safer opiate levels. Good luck , well wishes for you.
💪💪💪👍👍👍
It's been increased by 110mg so not starting out on that dose, managing quite well, just feeling more sleepy during afternoons but I can't sleep more than 2 hours at any one time so it could just be lack of sleep.
It’s not surprising that you could get a little sleepy ( nods ) at those levels, especially if you are adding in that fentanyl very much. Keeping that narcan kit and your smart phone handy is a prudent management thought, someone hanging around or being in public a bonus until your tolerance builds a bit. When you need the meds you need them, and if they are working pretty good that’s a big bonus. None of us deserves to have to endure pain at this time of our lives.
Rock on ✌️✌️✌️✌️
Darryl had a set of posts dedicated to pain if you can find.
MY pain seldom gets much useful response from any of my docs. I think unless they have personally experienced great pain there is no way they can properly judge a response.
MY anecdotal study of one is that no amount of Norco could fully resolve my extreme mets pain down to tolerable.
I found that regular measured amounts of CBD from tincture every 6 hours reduced about 70% of MY pain down to tolerable.
I dose about 50 to 100mg of CBD subliminally a day. Reduced Norco from 12+ down to 2.
For ME that's more than a fair trade.
I sleep much better now. Feel much better because of the quality sleep. No APCa cure but never expected a cure, only looking for pain reduction.
2Dee
I had no pain last night, just 7am Neuropathic pain attack in legs and took some fast acting Lunaldin.
I didn't sleep well as felt weird. This blood pressure build up in head-ears, I kept checking my BP my Diastolic pressure is 100 and been taking Coveram last 6 months to try and get it down, I was light headed and slightly slower than normal breathing Metadon is powerful stuff and probably need to adjust. The Pregabalin is lower dose as with the Neurontin I've been taking (600mg to 300mg of Neurontin) for first couple of days.
I don't feel I should be driving and don't plan to, until I feel more stable. I see the pain specialist next Tuesday and feel she can reduce the dosage a little to get a better balance. I just feel stiffness in my muscles now, they've been through hell for 14 months, it does feel weird just to feel stiffness after being in pain such a long time.
Wow, that's a lot of pain meds, thanks for sharing! I've been dealing with pain myself the last few weeks due to a blocked kidney that hopefully will be taken care of later today. I'm only taking about 10-20 mg of Oxy a day and I generally don't like how it makes me feel.
Naive question: Do you also take Ibuprofen or any other OTC pain meds? I ask because my understanding is the best way to address pain is to attack it from multiple directions. Anti-inflammatories reduce inflammation and reduce activation of the pain nerves, while opioids work on the other end of the nerve and affect how the pain signal is processed. Just me always trying to learn more.
Since nov last year I’ve been getting pain in my back shoulder blade area. The pain will start in my back down the ribs then into the chest both side. Got so bad the pain made it hard to breath. Talk to a triage nurse, she said to take ibuprofen 800 and an extra strength Tylenol. It’s seems to keep the pain down to a dull ache. I’m nowhere near your pain level but this works for me. Good luck
Max dose ibuprofen + acetaminophen is pretty good stuff. The are studies showing it's more effective than a low dose opioid by itself. Of course, you can add an opioid for even note pain relief, and you'll likely get by on a lower dose than if your were only taking an opioid.
I had my stent put in yesterday. Only using acetaminophen for pain control so far today, and the surgery pain seems to be worse than the kidney pain. Not declaring victory yet, but it looks promising.
Only what's give by Doctor. Diclopram is an antinflamatory. My biggest issue is Neuropathic pain and the Neurontin, Pregabalin are dealing with that.
Interestingly I'm still getting the Neuropathic attacks-spasms, just don't feel the pain that normally comes with it.
Sorry to hear that you have pain. Sounds like it is pretty extreme. My Oncologist treats pain at the first sign of it. (Florida Cancer Specialists and Research Center).
I have had radiation treatments on my right hip for a lesion. About 21 sessions. I was taking morphine 15mg every 4-6 hours back then. Radiation treatments worked and they weaned me off the morphine.
I had additional radiation on my lumbar spine late last year, about 15 sessions. Have been taking oxycodone/acetaminophen 5-325 dose since then as needed. My OC does not believe anyone of his patients should be in pain.
I will be having my 4th infusion of Ra223 tomorrow. Side effects have been minimal.
Take precautions as recommended by Kaliber (above)...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/05/2020 6:24 PM EST
I was scheduled for proton therapy but didn't go. I have a new urologist because old one was to eager to cut, burn & poison. Still juicing, vitamin & herbs regiment, drinking plenty of water and a cottage cheese/yogurt/lemon juice/apple juice & tablespoon of virgin olive oil cocktail. Also eating plenty leafy vegetables and stevia and honey to replace sugar. I've watched my A1C go from 9.0 to 6.2, no signs of cancer in PT/CT scans, cancer cell blood test negative for cancer cells and my PSA is not increasing sTAYING at 19. I made a deal with new urologist to stay on this regiment until something drastically changes. I took integrative & holistic practices into my own hands. Even new urologist said he would have applied radiation in 5 locations even though tests came back negative.
This treatment is not to cure or to reduce PSA, it's purely to treat peripheral neuropathy
For over a year now I've not been able to sleep more than 3 hours at any one time, last two days I've had several sessions of 8+ hours sleep, I've actually slept about 16hours per day in total. To feel no pain and not like a Zombie just for a few days is amazing feeling for me.
All I know is my oncologist said at the start that there was no need of me being in pain , we will do what ever it takes to keep you comfortable. 😀😀😀
That’s a good Dr.
Spent most of yesterday in Hospital, a sample of samarium 153 to see how my bones take to it and to figure the dosage I need. I got to speak with pain specialist and we agreed to reduce the Oxycodine, it's good to feel no pain but it's also good not to be a zombie most of the day.
I also had couple of hours counselling, they wanted to see how I and my family are dealing with my situation, my thoughts on end of life etc. I found it useful to talk with this guy, it's not always easy to talk with close relatives as they're feeling the pressure and everyone can be more guarded on what they say to each other.
A little disappointed, RO called today and said my cells didn't reacted to the Samarium 153, so no point in doing the treatment. She said I'm the first person for this to have happened to.
I suppose I should be thankful that they could test first and save me going through several weeks of pain and discomfort for no reason.
Wow, that really SUCKS! Was really hoping it would work for you to beat back the cancer and reduce your pain. Is there a plan B?
Plan B is to continue with insane amounts of Opioids, that's not a good plan but all I've got.
I will be having Radium 223 at some point in the near future. I can't fault the medical staff, such strong empathy, I'm really impressed.
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