maybe ask for morphine.?

one of the advantages of palliative care, they are lften more willing to prescribe opioids for pain relief.

I hope you find relief soon.

No advice, but so sorry you are suffering and sending you thoughts of strength comfort and courage.

Adding my words to Annie’s. I feel so bad for you. When my sister had cancer, they gave her a morphine pump . She controlled the dose herself. I wonder if something like that would work for you.

Im thinking of you Chisue. I hope there is relief for your pain.

Unfamiliar, I looked it up and it’s supposedly stronger than morphine so it sounds good to me. But if it’s not working well it’s not working well. Since you had something you liked better, I’d try to get a better idea of why they didn’t continue that. Personally I prefer oxy over hydrocodone. I’ve never been particularly convinced acetaminophen does anything so why tax the liver. But that’s just me.

I ageee wirh theresafic, you’re supposed to be comfortable so don’t hesitate to ask for changes. Good luck!

I agree; Be aggressive. Speak up for yourself and your pain. There is no reason not too.

Acetaminophen is very toxic to the liver. I saw a statistic that something like a third of liver failures are from that drug, IIRC. Perhaps that's why?

I do sincerely hope you find some relief.

I'm so sorry you are experiencing this pain. I would go back to the team again and tell them it is not working. It is not uncommon to need to experiment and tinker with dosage, timing, or switching out for another pain medication. Managing pain through palliative care needs to be an ongoing dialogue between you and your providers. Trial and error and brainstorming is the name of the game. Don't be afraid to talk to them daily until you see some improvement.

No experience, but here's an excerpt from an article published in ScienceDirect in May 2025:

"Buprenorphine is a promising analgesic for cancer-related pain due to its safety profile relative to other opioids and emerging evidence of its efficacy relative to traditional first-line opioids (e.g., oxycodone). Our work identified that palliative care providers and oncology clinicians rarely report prescribing buprenorphine for cancer-related pain, despite the fact that palliative providers report greater knowledge about buprenorphine..."

https://www.sciencedirect.com/science/article/abs/pii/S0885392425000533

My impression is that buprenorphine is quite new, and perhaps in a trial-and-error testing stage? I hope and pray you find relief from the pain.

I’m so sorry you are experiencing pain. I also recommend talking with your care team about your response to this drug.

Is it working a little, but not effectively until several hours after you’ve taken it? If I understood you correctly, maybe the issue is the timing of the dosage. Perhaps you could be takig mdose more often.

Another issue could be that you just don’t respond well to it. We have become more educated in the past couple of years about individual genetic relationships to pharmacology. Some are actually non-responsive at all to opiods or somemof the other pain relief drugs, and unfortunately the connection to genetics often is not made. DH and I had our pharmaco-genetic profile done about a year ago and are now able to know precisely what drugs we might be sensitive to. A simple blood test plus about $160 each to do the testing and counseling by a genetics lab.

Another article

Cochrane Database Syst Rev
. 2015 Mar 31;2015(3):CD009596. doi: 10.1002/14651858.CD009596.pub4

Buprenorphine for treating cancer pain

"Implications for practice...

This Cochrane review did not find sufficient evidence to make buprenorphine a valid first‐line choice alongside standard therapies like morphine, oxycodone and fentanyl. However it has a place as an analgesic and its different routes of administration may make it a practical option for limited types of cancer pain, for limited numbers of patient in limited types of clinical setting. Where its place is exactly, is still hard to say. It seems reasonable to suggest that it might be considered to rank as a fourth‐line option compared to the more standard therapies like morphine, oxycodone and fentanyl, and even there it would only be suitable for some patients."

Link to article

https://pmc.ncbi.nlm.nih.gov/articles/PMC6513197/

Oh, you friends are just the BEST!

(More later.)

Talk to your medical team. Anyone in pain will not move around and that’s never good. As others said, we don’t all respond the same to medications, so you and your professionals need to find “your” relief plan.

Tell them you want the oxy. No one needs to be in pain at this stage. Watching my brother Mike deal with cancer that metatacised to his bones and watching the bone pain my husband deals with from multiple myeloma, my heart aches for you Chisue. I pray you can get this under control fast.

While I don't have personal experience, I know people who have used:

I hope you find relief.

I'd messaged the pain team Sunday. Had a reply just now, saying to switch to the Hydrocdone-Acetaminophen 5-325. I had already quit the Buprenorphine and switched last evening. I have now had three doses -- with better relief. I've asked if four times a day is adequate; if it has to 'build'; and if the dose is strong enough.

I have about thirty pills and *time* to get more/stronger dosage before the weekend.

Your support and kindness mean the world. Thank you.

I 'shouldn't' be so dismayed that the MM has stopped responding to therapy and has increased its grip on my bones. Yeah....but I was! New challenges.

Chisue, have no experience of information, but want to let you know I am thinking of you and sorry you are in such pain and going through this. I hope you’re getting helpful and timely responses from your pain management team.

Chisue I am not a regular here but I do follow some of the posts. I have been a member for many years and used to participate in a few of the decor forums. I have followed your journey as I have a BIL with MM. I am so sorry that your treatment options may be running out; BIL has been on several protocols and holding steady now (six years now).

I wanted to reach out about pain management. My DH has severe degenerative disc disease; has had surgery twice about 15 years ago to fix the ”fixables”. but as his neurosurgeon said, “We can’t stop the aging process”. He is able to manage his pain and still have quality of life with 7.5 Hydrocodone 3-4 times per 24 hour period. He actually was on 10 mg prior to surgery. He just responds and functions better with Hydro than anything else. In fact, he had a major surgery (not back related) several years ago and his medical staff were not controling his pain effectively with morphine. The morphine worked for 1-2 hours, sleeping through it, and then wore off. What worked best was following up with the Hydrocodone 7.5 just as soon as the morphine wore off and he would be comfortable for about 5-6 hours.

If I were you, I would break a 5 in half and see if your pain is more controllable with 7.5 in one dose; if so, then you can have them switch your next prescription to the stronger dose. Wishing you comfort.

tuesday -- Thanks for this very useful information.

I finally got through to the oncology pain dept. They said to take two of the Hydrocodone-Acetaminophen 5-325 every four hours. I did that at 2 p.m. It's now 3:30 p.m. No noticable relief, but I've read that this stuff peaks at 1.5 hours. Maybe it will 'build' as I keep taking two. (This goes along with your DH's 7.5 dose, but I have no morphine to help with the pain in between. I need to ask if that's possible if this fails.)

I must not panic, but this is really difficult.

Thanks again!

Chisue - I'm so sorry you're dealing with this much pain.

I agree with @Kendrah. You need to communicate “vigorously” to the pain management team. I have had multiple surgeries and a surgeon who believed that if you don’t move around, to aid healing, your pain isn’t being properly treated. Aggressive pain management is important so you must speak up if what you’re taking isn’t working.
When I broke my right arm (both bones, big fall off my horse) my orthopedic surgeon was very free with the Oxycodone for the same reason. I needed OT but he figured I wouldn’t do my exercises if I was in pain.
Ask for a pain consult. If your meds don’t get you through the night, they’re inadequate.

When you speak with your pain management team, ask whether you will get a quicker response during the daytime by messaging them or calling them. I found with my mom's oncology pain management team (palliative care team) they were better reached by phone, which was different from her oncologist's office which was better reached by message. Her palliative care team was set up for much more frequent dialogue than what a normal doctor's office was. They both worked out of the same office, but it was set up quite differently on the pain management side.

You’re being given good advice from posters here, I’m glad to see—are you in paliative care? its just so true that you have to be nicely pushy to get what you need these days, when it comes to pain meds. When my dh has a migraine, morphine does nothing. Its been awhile since he had one that bad (er visit,) so I don’t recall what he was given, but it was definitely stonger than morphine. There really shouldn’t be any concern about addiction, only comfort. I'm sorry you’re having to try so hard to have your pain needs met!

Wishing you the quickest and best relief they can provide to you. I'm so sorry to hear what you are going through. Glad there are people here with experience and knowledge to dispense to you.

I have Labs and a visit with my oncologist this morning. I'm giving blood today in advance of my Friday infusion so they can get started right away on Friday, not wait for a blood draw Friday morning, which then has to be seen and approved by the MD before they can start the Kyprolis. LAST time we tried this, the lab didn't have the complete list of orders and only drew two tubes. Normally there are five tubes. I've alerted them, but who knows!

For all the seven years of my infusions, the *nurses* started a line; drew blood; used that line for the infusion. One 'poke', not two.

Last evening and overnight I took the Dilaudid 2MG every 2.5 hours, not every 3 hours. Still very painfull to get up during the night and this morning, but I *could* do it. I am also taking Lorazepam 0.5 MG every six hours tio tamp down the anxiety.

I want to ask my oncologist what hope he has that I can recover some mobility when my spine us so destroyed.

Other news: Our son blew out his rght knee while bowling. Can't drive. He has an MRI Friday.

Other news: DIL's mom, 85, is in and out of hospital while they try to regulate her newly a-fib heart. Her husband, 88, needs 24-hour supervision after sepsis from open leg wounds.

And it is just so darn COLD!

Oh my goodness, Chisue, when it rains it pours, it seems. Good luck with your upcoming medical events. I'm sorry for all the medical trials going on in your life right now. I absolutely agree about the cold!!!!! I hate it too.

Just wow, @chisue Just so much going on, the anti anxiety meds can be increased if needed. Your palliative team ought to be able to keep your pain under control. These professionals often have different pain management protocols than do physicians. .

My Oncology MD said to continue the Dilaudid -- not every three hours as pain team said, but every two+ hours as I tried. He's optomistic that the new infusions with Kyprolis will not only quell the MM but help beat back the bone pain. However...not for a month or two.

They did have the right orders to draw six vials for my labs. We look for clues in the IgG, the Kappa-Lambda ratio, and the M-Spike -- none of which had been ordered last time. All of the 'ordinary' labs are 'perfect' -- nothing to preclude continuing with the Kyprolis.

IDK how I was able to get dressed and get through this morning's visits, but I did, with my wonderful DH to get me there and back, and to help me question the doctor.

In some parts of the US I know they say someone 'carries' you here or there. That's pretty accurate here!

I am hoping you get some pain relief. You did get yourself dressed and to the doctor, so give yourself some credit. Know there are many of us here who are thinking about you and hoping for your pain to subside so you can continue to heal.

Thank god for Lorazepam is all I can say! You and those around you have so much going on. I'm sorry it has been such a struggle to get your pain under control.

Have you tried any specific online forums for people with MM who are at your stage to find out what they are using for pain control? The might have some good recommendations you can bounce off of your doc. Sounds like your doc might be more helpful than palliative?

Reddit is my go to for everything these days. Here is their MM section https://www.reddit.com/r/multiplemyeloma/

It is super easy to create an account and post a question. I just scanned quickly and found people talking about severe bone pain and how they managed it before the Kyprolis kicked in.

Thanks, Kendrah. The MM Society has good information. It's getting my 'on the ground' pain team to pay attention. I had to clarify that the pain is not only ribs, but compressed spine -- after all this time they don't have the facts?

Good news: Results from the three Kyprolis infusions show teeny signs of helping. AND I have better pain relief. I have fentanyl patches, supposedly good for 72 hours, with the Dilaudid 4MG for back-up. This, plus Dex (steroid). All yucky stuff, but as long as it helps... I even slept six hours last night! I haven't lost any more weight. Constipation is a challenge. I have time 'off' now until restarting the three weeks of infusions again Feb. 6.

They don't want me to use the Lorazapam -- IDK why.

@chisue - That's good news! It's amazing how less pain and a few good hours sleep can make you feel. FWIW - many pain meds cause constipation. It's a trade off at this time.

I’m glad there are improvements in your treatment and that you could sleep better! Hope that’ll continue. Your pain management team did not want to prescribe Lorazepam because together with the opioids (fentanyl & dilaudid), it can cause respiratory depression- causing your brain to forget to breathe then you’ll never wake up.

That IS good news, Chisue! You sounded so miserable previously that I’m sure any improvement is wonderful.

My mother took the drugs mentioned above when the others didn't work for her restless legs, and when those didn't help anymore they gave her Methadone, which was very helpful. I was so worried there would be nothing left for her, but that one did the job til she passed at 97. I continue to pray for you.

Thanks, all. It sure helps.

@chisue, sorry you’re going through this. Hope you’re able to get some relief that helps.

Im very glad to hear you have at least a bit of relief. It might sound useless but a heating pad could possibly help. My brother Kevin had dilaudid for pain after one of his surgeries, it helped him. Also pain patches. You have my continued prayers for treatments and pain relief.

Chisue, I don't know much about the drugs. But I have eased pain with meditation (and frankly, distraction.) I recommend an app called Insight Timer. It's got thousands of audio tracks for visualization and meditation. The teachers who record them are from all over the world, so you also get to hear some beautiful accents.

You can search specific words for what you need. (First click Library, and then use the search button on top right of the phone screen. You can also use it on the computer, but I don't know that screen design as well.)

I did a search for "myeloma pain" and it showed over a dozen tracks that looked like they would be soothing.

There is also a big section for anxiety. There are tracks of music and even bedtime stories (for children, but anyone can be a big baby.)

There are also a few live classes and I've enjoyed them in the middle of the night when I'm up and want to join something relaxing on the other side of the world. These are livestream, not zoom, so you see the teacher but they don't see you.

You can download the app with a free trial and the membership is not costly.

I send you my warm wishes for ease and comfort as you go through your pain.

"I had to clarify that the pain is not only ribs, but compressed spine -- after all this time they don't have the facts?

Chisue, just an idea that occurred to me on reading this. Perhaps compose an extremely short summary of pain issues and locations and copy-paste it at the very start every single time you write them? The team member who originally replied might have changed even if it's been only 15 minutes. It's probably a team whose members change all the time and are overwhelmed by workload, so this might save you the need to write again. It'll also prevent waste of precious time.

I'd write such a summary in separate, bolded and bulleted sentences, so that it jumps off the screen and can be grasped in an instant.