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Hydromorphone question
Climbing
162 Posts

My oncologist has prescribed me hydromorphone, as a pain killer but I'm kind of confused by this. I have stage 4 breast cancer. I have a tumor in my breast and the cancer has spread to the supraclavicular lymph nodes and sternum lymph nodes. I've had 2 sessions of chemo so far. I haven't had any significant pain so why would they preemptively prescribe me an addictive pain medication? Is this is a strong medication? I could see in the future if my cancer progresses and gets worse the need for the pain medication. For now wouldn't they start with something less strong and less addictive in nature? I guess I'm just a bit confused by this. So far, I have no real pain. Actually the pain I did have, in my collarbone area, is gone since chemo started.

17 Replies
Mosi
90 Posts

@Climbing I too was surprised at the prevalence of Rx for opioids. I have worked with people who struggled with addiction and even tramadol really made me nervous. Tylenol has addressed most of my pain with the exception of the damage done to my skin after a debacle at emerg after radiation. I was glad I had filled the Rx and needed 1 or 2 for a 3 day period. It was explained to me that the pain needed to be addressed before it got out of hand. The reality is that there has been little pain in this process. Now where is the equivalent pill for my energy level and appetite. 😄

Tammys5381
12 Posts

@Climbing

I have been on hydromorphone for over a month, round the clock, long-acting doses along with extra doses of short-acting for acute pain episodes. It also goes by the brand name Dilaudid. It is technically 5 times stronger than morphine.

I have stage 3 cervical cancer with severe pelvic pain and without this medication I would not be able to function.

What sort of dose have they prescribed you? Is it short-acting? Have you ever taken an opioid medication before?

Be advised that if you do choose to take it you should also take a laxative. I tried a few different brands and the only one that works for me is Restoralax.

Tammy

Climbing
162 Posts

I think I'll have to check with her on what the intent is. Just wondering if someone would pipe in, for example saying this is common for alongside chemo or something. I'm just not really sure of the context of which I'm supposed to be taking it. I think she said moderate pain. But this is more strong than morphine so I'm so confused. If I'm in that much pain that I need morphine wouldn't I be in the hospital? Doesn't seem like something so willy nilly that I would administer myself at home. Right now I am not in pain. (well maybe a bit from my port insertion) :)

Ive had 2 c-sections and both times a Tylenol 2 was enough for the pain. Just wondering why now hydromorphone, I'm not sure the context in which this drug is to be used. And if it's addictive, that sort of thing. I'll check the dosage. And I'll have to ask her what the purpose /intent is.

Mosi
90 Posts
Climbing‍ I was prescribed the tramadol by my surgeon. I had chemo first, then surgery, then radiation. I was not given anything during chemo and Tylenol was suggested if needed. Claritin did a great job of addressing the muscle pain. I do remember having a discussion with my oncologist about my concerns about opioids and when I took it after the radiation burn debacle he really understood the extent of the pain I was in
Climbing
162 Posts

Thanks @Mosi

Tramadol is what my partner was prescribed also for his cancer. I'll have to ask her about the hydromorphone. No pain during chemo yet, fingers crossed. My white blood count was low last week and my chemo was postponed. My doctor mentioned I'll be getting some sort of WBC injection, it's not Neulasta, don't know what it is yet. I have Claritin in case I have bone pain.

KTA
19 Posts

I have been on daily dose of hydromorphone for several months now. I take a long-lasting dose morning and evening, and breakthrough doses when needed. It has changed my perspective on a lot of things. I tend to be a “tough” person, neglecting pain until it puts me in bed. Now I have a life that is quasi regular. Went to the farmers market this morning, went and had coffee with my bestie (@Mammabear), and just spent a couple of hours cleaning up the backyard garden. No way this would have been possible for me without the drugs.

Perhaps she has prescribed pre-emptively? Giving you something you can consider if your pain worsens. What dose did she prescribe (out of curiosity)?

Otterjam
99 Posts
I was prescribed 50 1mg tablets of hydromorphine. I took the signed prescription form but did not fill the prescription despite being in terrible pain (I still have that form in my wallet!). I had open sticky burn sores from the Chemo-radiation and horrible pain that exhausted me. My nurse was worried and really tried to encourage me to take the prescription to ease my pain otherwise I would not heal properly from lack of sleep (due to the pain). I wanted to be as alert as possible at home in case anything went really wrong, which happened on 2 occasions, so I never took it. Everybody is different. That is the great lesson for me. Everyone’s cancer journey is different. My expectations and what people were telling me (like someone who had a friend go through cancer and suddenly they were the expert) were totally incorrect. It made me feel diminished when people were telling me what ‘should’ happen when it wasn’t happening. Like somehow my cancer experience was false or wrong or weird somehow. That on top of everything else. A failure on all counts. Yes, good questions. Why give someone a hard drug when they are barely able to manage to take care of themselves. And depressed. Yes, good questions for sure.
Climbing
162 Posts

@KTA It is a 1 mg pill of hydromorphone

JustJan
1540 Posts

@Climbing I was prescribed hydromorphone in response to extreme pain which was a side effect of my chemo. It happened every cycle starting day 3 and lasting until day 6. It didn’t really work for me. We ended up making some changes to my chemo strength and adding in another medication (Gabapentin) which helped and then I was able to manage with Tylenol. The doctor may have prescribed it for you to have just in case you needed it. It seems a little strange to be prescribing a drug like that without a clear reason for it or direction on when to use it. I definitely think clarification with your oncologist is definitely warranted. Hope you’re doing okay.

Climbing
162 Posts

Thanks @JustJan. I'll ask her some more questions for sure.

I didn't end up going to my friends memorial because it's a 1.5 hr drive. I'm still having a lot of pain from my port surgery and the car ride (bumps on the road etc) is still very painful. I don't have any sign of infection/swelling/redness or anything other than the pain still being bad, and it subsiding a bit each day so I'm guessing this is just normal surgery pain.

Just going to be another day of sitting around for me. That worked out great for me with mothers day actually… got pampered by my family yesterday lol. ❤️

Chemo should start up again Wednesday (GemCarPemb), so I am hoping I feel a bit better by Wednesday. :)

moth
16 Posts

The risk of us becoming addicted to opioids is really the last thing I worry about. I have a terminal disease. Pain management will be a huge part of the end months but for many of us it becomes a big issue even in earlier parts of the Stage 4 dx.

I got hydromorph PRN right after my Stage 4 dx. I've hardly ever used it but there have been days when I needed it. Chemo, rads, new bone mets, filgrastim, fatigue, overdoing it on a special day etc can all cause pain flares. IMO we need to stay on top of the pain & manage it.

What is reasonable though is to also ask about lower level pain meds - naproxen, T3 or tramadol or using cbd+thc etc etc. There is a whole lot of things we can slowly ramp up with. I think not all drs seem as knowledgeable about palliative pain management as they could be but honestly, I'm so glad that there isn't huge resistance here to writing these prescriptions.

& if we become used to a higher dose of opioids, nobody is going to stop giving them to us. Fentanyl & remifentanyl implanted pumps etc are all in the toolbox for cancer pts (& indeed the same for people who are not opioid naive & going through surgery. They get whatever dose they need to knock their pain down).

Climbing
162 Posts

Thank you so much @moth , your post has helped me immensely. That is precisely the struggle I was wondering about. It caught me off guard. She prescribed me this, with no other words other than for “pain management”. Didn't outline why this was prescribed and what kind of idea she had when prescribing. Then after a few weeks of chemo I'm at home thinking, what is the meaning of this? Why did she just kind of toss this somewhat addictive drug at me, without instruction? I'm not in pain. I feel like, why wouldn't I start off on something less and work up? T2 or T3s for example. Your description helped clarify things for me a lot.

My mom had adenocarcinoma and at the end she was on morphine, but this was administered in the hospital.

From what I understand 1 mg seems like a pretty low dose? When I researched it said 2 mg is usually a starting dose. I'm not going to take any of the pain meds until I talk to my doctor.

Cupcakes
158 Posts

Hey @Climbing

First, good for you for not just taking it and being smart about it. I am so with you and what you are saying! I am surprised they have just so causally given you this drug. I would never take any pain killers unless I had to. Especially something so potent. When they give you a special yellow prescription paper with a 2 day expiry date you know you got some serious stuff haha. Ok let me share my pain killer story. When I was first diagnosed it was in several bones. The first treatment didn’t work for my bones so it spread like crazy in my bones, soft tissue and bone marrow. Needless to say I was in chronic pain 24/7 for months and months. Cancer eating your body is a rather unpleasant feeling 😳 They started me off with T3’s and straight codeine pills next I think was morphine then a brief stint with hydromorphone but I couldn’t keep it down. So back to morphine. I was on max dosage around the clock. I hated it. It bugged me I was the type that used to never take a Tylenol for a headache. And the pain killers barely took the edge off. Anyways lucky for me that when my chemo switched it worked for my bones and healed them and no more pain. But you can’t just come off those kind of drugs. You have to actually walk off them. Lowering doses each week so your body doesn’t go in to withdrawal. Pain and symptom management team guides you. And you become completely reliant on a laxative. Another thing is you don’t want to start off on a pain killer that is so strong and not have some wiggle room for something stronger later if you actually have pain down the road. Anyways to make a long story longer and in my completely uneducated advice not in a million years would I take any pain killers unless I was in pain and I certainly wouldn’t swat a mosquito with a sledgehammer.

KTA
19 Posts

@Climbing 1mg is a low dose of hydromorphone. when I started, I was given 1 mg, and when I had pain, would take 1 tablet. If one hour later the pain had not been addressed, take another, and so on. This helped determine what was the long-lasting dosage that would work for me. I hope you get to talk to your doctor soon. You say you are not in pain, but you also say you missed out on a memorial for a friend due to pain (I think that was you who had that experience, maybe not)… It's so difficult being balanced between “I need help” and “I'm doing okay.”

I also had worries about “addiction” and becoming a “drug addict.” But I'm with @moth - becoming addicted to a drug I'm likely to be on for the rest of my life anyway - and that is helping - is the least of my worries.

I hope you get sorted soon - so you can focus on other, more satisfying things!

Climbing
162 Posts

I really appreciate everyone's advice on this. It kind of took me reading this about addiction to make that connection in my mind that addiction is not much of a worry in my circumstance. I'm still coming to grips with this however this puts it into perspective. I definitely have questions for my doc. Maybe she prescribed it because I mentioned I had the pain in my lump on my neck/collarbone, either that or she anticipated that I would be coming into some pain?? The collarbone pain was more of a constant, dull nuisance.

Yes, that was my story about the memorial. The pain was from my port surgery on Thursday. I was managing with just regular Tylenol. But the car drive was too painful. Probably the hydromorphone would've helped!! :)

I mean I've only had one cycle of chemo so far. And definitely the pain I felt that time was not enough for anything stronger than a regular Tylenol. My worse symptom as a few headaches and I took Tylenol. But, who knows what each chemo cycle will bring, in terms of pain. Maybe she was being preemptive.

I too was prescribed Tramacet (tramadol + acetaminophen) after my surgery, although the surgeon said that a lot of patients found that acetaminophen only was enough to relieve the pain. I ended up taking one or two doses then switched to acetaminophen for a week, and I found that was enough.

I was prescribed Tylenol 3s when I started docetaxel (a chemo agent) and granulocyte-colony stimulating fact (a drug that stimulates white blood cell production - this causes bone pain). The oncologist and nurses never told me that you need to take the pills as soon as the pain starts (or even better, before it starts) or else they don’t work well (and you have to take very high doses), and I had forgotten that I had read this during my research before starting docetaxel. The docetaxel causes horrible pain for days 3 to 6 of the cycle, like someone else said above. I like to avoid pain relievers if possible, so of course I waited until I was in absolute agony before taking the Tylenol 3s, and they didn’t work because I had waited too long before taking anything. I ended up switching to the Tramacet, but it didn’t work either. So I spent three days in agony and made sure to take two Tramacet as soon as the pain started during the remaining doses of docetaxel. It turned out that two Tramacet every four to six hours were generally enough for the remaining doses, although the pain decreased with each dose.


Coincidentally, the oncologist that I saw at the end of my first dose of docetaxel was horrified that the other oncologist had only prescribed me Tylenol 3s, and she offered me Percocet. I was worried about addiction too and declined it, but I may have changed my mind if the Tramacet hadn’t been enough for the following doses.

I should mention that I understand if some people have awful pain and need to take strong pain relievers. From my experience, pain can be absolutely debilitating and rob you of your humanity.

I echo what someone else said: perhaps you can ask why you were prescribed the medication? From your comments, it sounds like you figured out that it was to relieve the pain caused by the port being installed?

Climbing
162 Posts

No actually my doctor didn't know I would be getting a port til recently. I will ask my doctor when I see her next because her intention is what I'm wondering. I guess I just more or less wanted to know if being prescribed hydromorphone right off the batt for chemo was a typical thing for others. If it's to deal with the chemo pain. It's something I'll have to ask my doctor. Everyones experience is so different. It just seemed really strange to me.

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