Bone Mets/PAIN
I apologize if there's already a thread on this topic, but I'm still having a difficult time navigating this new format. I've tried the search fields, but it's not directing me to a common thread.
Anyway, I'm having a BAD pain day. Bone mets basically everywhere in my chest cavity. RIBS especially, sacrum, etc.
I'm on OxyContin ER (I think 25mg)every 12 hours, Oxycodone as needed during the day. I woke up in excruciating pain this am. I am 3 days post chemo and it felt like every bone in my chest was inflamed and bruised. Like I was in a car accident. I got it managed after OxyC and a regular oxys. but by 2 I was so tired. Tried napping, but the ribs started hurting SO bad! I took 3 oxys (btw I have a HIGH tolerance to opiods) and its at a dull roar right now.
Besides my venting, I'm wondering how you all with bone mets manage pain. I hate to ask for an increase in dosage as I'm just at the beginning stage of this fight. What if I take too much now, and pain could get worse, if God forbid, nearing end stage nothing would help? Anyone know what I'm saying here? I'm kind of rambling, but I know you guys get it.
Feedback would REALLY be appreciated. Peace and comfort to us all ❤️
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I only had to take an oral morphine at the start when my sacrum was bad and I remember it doing close to nothing for me - not sure if Im not great with opiods or what (Tylenol 3 doesn't work either). Dull roar is right. With treatment, however, the mets pain subsided over time as the tumors died so don't feel like you will be on this level of pain meds to the end.
I believe some ladies are on pain patches and will hopefully be around to discuss those. Also, I havent had IV chemo yet, but I have read of it causing general bone pain and something like Claritin or Benadryl can help.
Usually I alternate tylenol/advil for bone pain, but you may be well past that point.
Do you have a pain management or pallative care specialist? They would be better at helping you find the right set of drugs to manage pain unique to you and your system.
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This is the link to the bone mets thread:
I hope you can find additional helpful info or feedback there.
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Thanks for your feedback Sondra.
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Does anyone have skull mets what do they feel like? I have one and it never hurt and now its hurting feels sore like I banged my head??
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I have been on opiates 24/7 since being diagnosed with Stage IV in December 2011. I’ve learned, and it may help others to know:
- Oncologists are not pain specialists. You should see a palliative doctor or other pain specialist for pain control.
- Developing a tolerance to opiates is normal. It’s not fun. Even if your pain is controlled by a higher dose, the side effects are greater (itching, headaches, constipation) and your body can still crave more, leading to withdrawal symptoms, even though you don’t want more, your body does, and it feels terrible, like the worst flu ever. Your doctor should switch you to a different pain medicine. This can be tricky.
- Be careful with fentanyl pain patches. They are supposed to work for 72 hours, but if you live in a hot climate, you’ll be lucky to get 48 hours. Heat makes the patch release the medicine faster.
- I’ve tried ALL the pain meds, and methadone is the only one that has given me years of sustained pain relief, without withdrawal symptoms. I have had occasional progression over the years and have sometimes had to add Oxy or morphine for a few months until the treatment tames my tumors. I have extensive cancer in my bones.
- There is a treatment that restores opiate sensitivity, using ketamine. I’ve done the procedure 2-3 times. It resets your body. I have not had it done lately, which makes me wonder if some of my earlier cancer treatments contributed to a faster tolerance. No one told me this was an option. I had to research on my own to find out.
- Pain is a major side effect of bone mets and many patients suffer needlessly. Pain affects your QOL and decision-making. If you are reading this and have cancer pain, please insist on a referral by your oncologist to a pain specialist. It can take days/weeks to find the right pain control that works, and to get insurance approval, so don’t delay. Refuse to listen to doctors who tell you to exercise more to help with pain. You can’t exercise if it hurts to move.
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I have bone mets in my spine and pelvis. I used to be on Oxy but the pain kept getting worse. I am now on Pregabalin (for nerve pain on my lower back and legs) and morphine. I only take the morphine once a day and supplement it with extra strength Tylenol. I was taking morphine twice a day but the constipation was terrible, so I cut back to once a day. Some days I have to take Tylenol a couple times a day.
My oncologist recently prescribed the pain patch, but I haven't been able to fill the prescription due to pharmacies around me not having it in stock. I am a little scared to use it though.
Living in pain is mentally and physically draining. I understand how you feel and hope you find the right meds to control your pain. Finding a pain specialist is definitely something you should do.. I see one too.
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@cita76, we're sorry you have to be here, and in pain, but glad you joined our community!
As well as the personal experiences you'll hear from other members, you may be interested in checking out the main Breastcancer.org site's pages on pain and bone metastasis for some good information on symptoms, diagnosis and treatment options.
We hope this helps! We know you'll get tons of support and understanding here, so please, stay connected!
Warmly,
The Mods
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