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Bone Mets/PAIN

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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 ❤️

Comments

  • sondraf
    sondraf Member Posts: 1,631
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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.

  • olma61
    olma61 Member Posts: 1,026
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    This is the link to the bone mets thread:

    I hope you can find additional helpful info or feedback there.

  • pupfoster1
    pupfoster1 Member Posts: 176
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    Thanks for your feedback Sondra.

  • nicolerod
    nicolerod Member Posts: 2,877
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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??

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
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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:

    1. Oncologists are not pain specialists. You should see a palliative doctor or other pain specialist for pain control.
    2. 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.
    3. 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.
    4. 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.
    5. 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.
    6. 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.



  • cita76
    cita76 Member Posts: 1
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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.

  • moderators
    moderators Posts: 8,286
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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

  • pupfoster1
    pupfoster1 Member Posts: 176
    edited June 2023
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    Thank you so much for this. I have been "away" from this page again for a while, and I wish I could say things have improved, but they haven't. In some regards they've gotten worse. Since I have bone mets all over the place they obviously can't radiate everything at one time, so they decided to treat those more urgent areas, which at this time are my lower spine and my left hip area where the rod was placed and diseased tissue removed. Supposedly the radiation is to not only kill the disease, but give me pain relief. I can't speak for those areas as far as disease goes, but my enter back and all around my ribcage are now screaming when I get up or try to rest comfortably. I'm now on 50mg Fentynal patch PLUS 10/325 Percocet for breakthrough pain every 4-6 hours. The goal bumping me up to the 50 patch was to try to get me off the Percocet, but I am definitely not getting enough pain relief without it. I am in a similar boat as you that I had been on and off opiods over the years and my tolerance is super high.

    I just don't know what to do at this point. I have 3 more rads this week with chemo on Friday. I just don't feel like the treatments are working and it's scaring me. Not even sure when I'm supposed to see my Oncologist yet, but am supposed to see the Radiology Dr before Friday.

    Thanks again for your feedback. Hope you are doing well.

  • aoibheann
    aoibheann Member Posts: 252
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    It's very difficult to know who to go to for pain relief - palliative care or pain specialist. I've bone mets throughout my skeleton and skull, a pin in my right humerus due to bone decay, and several compression fractures in my spine. I also have arthritis. When I was originally dx I was admitted to hospital and I was seen by the palliative care team who put me on lidocaine patches, fentanyl patches, oxynorm and lyrica for pain. I'm still on everything bar the lidocaine.

    Then I was seen by a pain specialist who tried nerve blocks (didn't work, it's literally hit and/or miss)). He wanted to put in a morphine pump which I refused as it frightened me. So I went back to palliative care doctor. I've also had radiation for pain which partly relieved it in some areas.

    Recently I spoke again to the same pain consultant and he suggested admitting me to hospital for a week for a detox. and then he'd px ketamine for pain. My gp isn't happy with me going on ketamine as she has never had a patient on ketamine. I've found that this consultant whom my onc referred me to is impatient and has no interest in discussing other treatment options. I probably am a pain - literally!

    So I'm currently on 87mg fentanyl patches, 15mg oxynorm (oxycodone) as needed, and 350mg lyrica (pregabalin) and I still have constant low grade pain which becomes high whenever I try to do anything.

    I really don't know what to do. I also have difficulty sleeping as I cannot turn in my sleep and it becomes painful if I don't change my sleeping position after 1-2 hours. My bum hurts as I spend so much time sitting and I worry about getting bedsores.