Are you taking opioids?

[GranPaSmurf]

I've read that a significant number of cancer patients need daily opioid medications.

My pain management doc is suggesting hydrocodone again. I took them for about 6 months - about 10 years ago for degenerative spinal stenosis.

[tom67inMA]

I only dabbled with a low dose of hydrocodone for a while after diagnosis. I don't remember it doing great things for pain relief, but like marijuana it generally made me not care about pain.

What's really worked best for me is Celebrex, which I tried because of several studies showing improved survival when used with a bone strengthener or statin.

I'd recommend giving it a try if you can. It might not eliminate the need for hydrocodone, but it may mean you can take a lower dose of hydrocodone, or only take it when you have breakthrough pain.

You could also combine Celebrex with Acetaminophen. Taken together they can be as strong as an opioid by itself. BUT, don't take Acetaminophen with hydrocodone if that is already combined with Acetaminophen. It's very easy to overdose by taking several different products that all contain Acetaminophen (watch out for cold remedies!)

[Kaliber]

I have Vicodin - hydrocodone for everyday pain , hydromorphone - dilaudid for break thru pain and time release morphine capsules for use at night ( so I can sleep all night ) and for pain that falls between the hydrocodone and hydromorphone . So far, hydrocodone is managing my everyday discomfort ( PAIN ) very well. The problem I experience with all three is that I build up a resistance to opioids rapidly and they only work for me for 5 to 7 consecutive days and then spontaneously stop working ( unless I increase the dosage which I refuse to do to myself if I can avoid it at nearly any costs ). Most opioids have a strong antihistamine effect and are strong constipation inducers as well. Coming off of them - withdrawal from them can be rather unpleasant ( ugly ) too . In my case , when they spontaneously quit , I get a massive phlegm attack , poop attack and there are numerous other issues , mainly the sickness and mental ones related to withdrawal.

So, I can spend around a week of relative comfort and then have to spend about two or three weeks of discomfort for as long as I can tolerate it. For the first five days after the opioids stop I experience a massive snot / coughing attack for about a week and live in the throne room a lot ... plus sometimes the negative “ mental “ issues are strong and I have to take some Xanax to get some relief from those. While I’m cycling off the opioids I have to just rely upon ibuprofen and tough it out ... all while enduring the withdrawal issues too. A little sharp pain keeps you awake and alert tho and makes you really appreciate when you can cycle back on again as well.

I have the resources and medical blessings to increase my pain meds to whatever level ( within safe practices) I would want but the more you take the higher and more severe the cliff you fall off of when they quit working. In other words the bigger you let that monkey grow, the bigger and more painful the bite is when the monkey becomes angry when you don’t feed it.

If you are having cancer induced pain , opiates .... for me at least, work very well at managing that pain. Opiates bring their own set of issues tho ... for guys like us ... life should be all about QOL ( quality of life) as much as possible for as long as possible ... opiates can go a long ways toward making that happen ... still one has to find a balance between “ things “ to try to maintain that QOL as much as possible .

This is my personal experience, your mileage can and will vary for sure. In any event , if you are using opiates, your medical provider will offer you Narcan anti overdose nasal spray to have on hand just in case. I highly recommend having that Narcan on hand just in case for safety. Don’t get one Narcan for the house and a second for the car tho .... getting the first one is great but asking for a refill will trigger a significant provider review - investigation action, urine tests etc. because they will view it as you abusing opiates if you need the Narcan at all. Just FYI

Peace brother .......

[GranPaSmurf in reply to Kaliber]

Wow! Thanks for the extensive report.

As for me, I don't think I'm there yet. His suggestion was for pain that I don't think is related to cancer. I think I can postpone the big guns for a while. I'm thinking a spinal nerve ablation might be next.

[j-o-h-n in reply to Kaliber]

Great post!!!

"The bigger you let that monkey grow, the bigger and more painful the bite is when the monkey becomes angry when you don’t feed it."

e.g.

youtube.com/watch?v=cHXyEB_...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/19/2019 5:46 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahahaya... I love these videos you dig up ... great. Stuff. You da bomb.

Right this minute ... today at least , I’m keeping my monkeys in the bottle. This is my second day of a clean off cycle and it feels great for the monkey to be sleeping. I know that in a few days I’ll have to wake them back up ... but a day at a time is good. Today is good ... I’ll worry about tomorrow when it’s become today.

Love ya brother...

[j-o-h-n in reply to Kaliber]

It is my destiny and pleasure to bring a smile to you face... You da Pinata

i.etsystatic.com/10371058/r...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/19/2019 6:29 PM DST

[Kaliber in reply to j-o-h-n]

I wish yayahahahaya .... you must be dreaming again ... memba when ?

I almost pee’d myself when I read “ you da piñata “ , almost instantly imagery popped into my head of what came out when someone hung me off a tree with a rope and hit me with a stick. Not candy ..... for sure yayahahahaya. Trippy ....

[j-o-h-n in reply to Kaliber]

Did you look at the pinata? Did it remind you of anything?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/19/2019 6:55 PM DST

[Kaliber in reply to j-o-h-n]

That’s why I said I wish .... and memba when ( member ) and you must be dreaming yayahahahaya

I have a vague recollection of something like that , in another lifetime I think. Seems like a long time ago now.

You have an unusual picture collection, seems like. Yayahahahaya

[j-o-h-n in reply to Kaliber]

Sorry I missed the wish comment... since I don't have to wish I just look down....👀

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/19/2019 7:22 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahaha lucky you ... I look down and see my belly ... doesn’t matter tho .. not much left to see down there now thanks to adt .

[j-o-h-n in reply to Kaliber]

Use a mirror like I do......... (a string helps too)..

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/20/2019 6:05 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahahaya. And don’t forget those mink padded tweezers.

[Bebby1 in reply to j-o-h-n]

Thank you Mr endorphin!!!

[Captain_Dave]

You might want to read this:

Evidence mounts for link between opioids and cancer growth

uchicagomedicine.org/forefr...

[2dee]

100-200mg CBD a day.

2Dee

[HopingForTheBest1 in reply to 2dee]

While CBD has been clearly shown to be effective for many, the caveat is that should you be taking any meds that warn about grapefruit interaction the same goes for CBD. Those meds could become less effective as a result.

[GranPaSmurf in reply to 2dee]

I have some CBD oil from a free trial bottle from an internet supplier. I took it a couple of times but no effect...I probably didnn't take enough. I tried to ease into the dosage level.

[Firespooks]

I was taking Hyrocordone for recent surgery. I got so constipated that I ended up getting diverticulitis. Don’t want that experience again.

[Hidden]

Since most cancer pain is caused by inflammation, it amazes me how many cancer sufferers are not using anti-inflammatories as their basic pain control (and these are good for healing cancer as well). Actual pain killers (simple and safe things like paracetamol) are then added if the base is not enough and to get short term relief or get to sleep.

Direct application of Diclofenac gel (e,g, Voltaren and generics) onto those little muscles around the spine that go tight (and cause pain) can also give relief. The massage also helps to get those relaxed a bit.

25 mg of Diclofenac 2 to 4 times a day can control low level pain, and that can go to 50mg if necessary. It is very cheap.

A step up is to use Celebrex (or celecoxib generics). I found 50mg every 8 hours was almost as effective as 100mg every 8 hours, and 200 mg did nothing extra.

These take an hour or so to "kick in", and last up to 8 hours. Get to know the pattern you need to follow so you do not get painful "gaps" between doses (always taken with a bit of food).

I would avoid the dozens of other kinds of anti-inflammatories on the market, as many are downright dangerous.

[GranPaSmurf in reply to Hidden]

thanks! I have so Voltaren gel leftover from a hand/wrist flare-up last year. I will test that.

[HopingForTheBest1]

When my Oncologist offered an opioid I expressed my concern about going on Oxycontin. He gave me Tramadol. I am taking it sparingly as absolutely needed. Thankfully I am not experiencing a lot of ongoing pain at this point.

[Metungboy]

Just insure that your pain really is cancer pain. Significant number of us have lots of other reasons to have pain. I have very extensive me a static disease including every vertebra multiple ribs base of skull etc and I am convinced no pain from it. I do have lots of aches and Pains but I try to avoid taking any analgesias and just up my exercise regimen. I know eventually when the cancer gets really going I will have cancer pain but then I will have the opioids up my sleeve. Taking them early if it is cancer pain is okay however it’s quite difficult to work out. Discuss this with your doctors and try to find a health system that encourages activity as a diagnostic process. It’s scary because every time I do activity and I get some localised pain I am worried that I’m going to break something but if I gradually increase the load and the pain disappears I feel much more confident to increase my exercise. Try all the mechanical things like exercise, yoga, massage, before you get onto the opioids. Pharmaceutical companies push opioids like crazy and that is why in Australia where I live more people die from opioid accidental overdose than from car accidents. I suspect the US is the same if not worse because you don’t have the same degree of regulation of those parasitic companies. Comparing one over your way to another really doesn’t make much sense the only real difference is in duration of action. The pharmaceutical companies talk about different receptors but I think it’s a lot of rubbish.

[larry_dammit]

Tried them didn’t really like them. , when I switched to Xtandi I had to quit them and go to morphine. Works better for me

[Kaliber in reply to larry_dammit]

I agree, morphine is noticeably more effective than hydrocodone , by far. The down side tho is that morphine has more serious withdrawal issues and kicks you up one rung on the pain management medication ladder. When you have to step up from morphine tolerance, it’s hydromorphone then Fentanyl ... etc. . It’s best to get by with less as long as you are comfortable. When it’s palliative QOL care ...it really doesn’t matter about the small change . all that really matters is being comfortable and as pain free as possible and trying to enjoy life and your loved ones while you still can. Probably none of us wants our close friends and loved ones to see us wretching in insufferable discomfort... especially when it’s totally unnecessary. Yikes ...

[larry_dammit in reply to Kaliber]

I was on fentanyl before going on to Xtandi, they don’t work together.

[Kaliber in reply to larry_dammit]

A lot of people don’t seem to get results with Tramadol. Myself I get a small amount of results with tramadol but I rate it somewhat above two ibuprofen but well under a 5mg vike. It’s not actually an opiate, that’s one advantage if tramadol works for you.

The pain killer ladder for me is : two ibuprofen, tramadol, vike 5s ( or alternatively 10s ) , OxyContin, Amazon poppy seed tea, morphine ( morphine and the tea about the same with the tea having much more high - abuse potential) , hydromophone - dilaudid , then fentanyl.

I don’t refill the oxy or fent patch scripts .... oxy like pst ( poppy seed tea ) is too seductively abuse oriented ( because of the intense high ) and oddly fent doesn’t have much effect on me.

When the horse is already out of the barn, it’s too late to worry about shutting the door ....... in other words it’s all about QOL in widespread stage 4 , M1 circumstances . Being concerned about addiction, social ramifications etc. is old social conditioning and doesn’t address realtime PCa issues and needs. The world, for guys like us, is radically different from the “ normal “ population.

[joeguy]

My state (Oklahoma) just sued the crap out of the opioid manufacturers and won. Im guessing this is going to make it very difficult to get pain meds in the future. I asked the state attorney generals office if cancer patients with painful bone mets were just going to be sent home with a bottle of Tylenol and a stick to bite down on...... they said "oh no, we have special provisions for cancer patients", So I guess you will just get the Tylenol and stick if you break your leg or something ...... Thankfully I do not currently have any bone mets.

[Kaliber in reply to joeguy]

In most states , the Federal opiate guidelines play direct parts in opiate administration - management. Federal law , tho, exempts patients in the hospice ,palliative and stage four cancer categories.... even prescribing oncologists aren’t peer reviewed or have very little oversight with pain management for these types of patients.

My treatment comes from famously opioid conservative Kaiser .... I can remember when Kaiser handed out Vikes and oxy like candy .... but now its “ difficult to get opioids from them and you have to jump through hoops like pee tests, opiate use contracts etc. when you do. Just getting seven vikes in a bottle after walk in surgery is typical. However when you are like us ... stage 4 metastatic... the restrictions come off and they promote you to a VIP patient level. Anything and everything you need / want is freely available ... they almost insist that you get “ all “ you need for pain management or whatever you want to be comfortable.

Too bad people have to be in our condition to get care of that quality these days.

[vandy69]

I am very advanced (all drugs, radiation, and now past 13th chemo infusion), so take Oxycodene + Acetaminophen twice daily on very active days. It dulls the pain.

Best Wishes. Never Give In.

Mark, Atlanta

[Bigpike]

I use Tramadol, 50 MG as needed, mostly at night to sleep. Also on prednisone (for another issue), helps a lot with Inflammatory pain.

[ck722]

Starting the first week, I used cannabis (rectally) after my radical prostatectomy. No pain, wonder drug. No" high" used rectally. Great for sleep too. Perhaps could be used in conjunction with other meds to cut back on them. Many meds are very constipating.

[Kaliber in reply to ck722]

I tried the same rectal thing but I could never train my colon to learn to inhale properly ??? Go figure .....

Peace brother

[Boywonder56]

Tylenol 3 ...evry day....strong as i can do or they kick me out of titan trial....still on for 2 mor years....unless i take the dirt nap.......b.w..