Need help with cancer pain

[hopeoflife]

Hello my fellow thrivers,

May I consult with you all for advice on how to manage cancer pain please? My cancer recently progressed again and the pain is getting worse and more intense. I am currently taking oxycodone 5mg IR every 5-6 hours but it greatly upsets my stomach and the constipation is killing me. I feel drowsy and very tired after taking them and basically can only stay in bed most of time...

May I ask what kind of pain meds that you all use to manage cancer pain? Are there non-oral pain meds for cancer? Would you mind sharing your experience with me please? Any tips, advice or suggestions are greatly appreciated!

Thank you all so much in advance for your time and kind help!

April

[CTGirl1962]

Hi April,

I’m on extended release oxycodone. I take a 13.5 mg capsule every 12 hours and I only use the oxycodone 5 mg for breakthrough pain (which is mostly at night at bedtime). I use docusate sodium 100 mg and two senokot at bedtime to help with the constipation. Do you have a palliative care specialist who can help you? That would be my advice to you. Inquire about that if you don’t already see someone.

Best of luck!! I hope you find relief. 🩷

Jody

[hopeoflife in reply to CTGirl1962]

Dear Jody,

Thank you so much for sharing this with me! What you described makes a lot of sense. I would love to try a long-lasting pain meds like the one you have and use oxycodone for the breakthrough pain. I do have a palliative nurse practitioner on my team, but I feel that he is not very helpful or knowledgeable. I will definitely make inquiries about this next time when I meet with him.

I am very frustrated with the pain management regime he currently put me on because I don’t feel that oxycodone is controlling my pain effectively, and the side effects greatly exceeded the benefits. This is why I am so grateful for this forum and fellow thrivers like you! I gain more useful and lifesaving insights and advice from here rather than from my care team all the time.

Thank you so much again for the sharing and the advice! I hope you have a wonderful and blessed weekend. ❤️🙏

April

[CTGirl1962 in reply to hopeoflife]

Hi April,

I’m so happy to help!! And, like you, I have gained so much knowledge from the people in this forum. As a matter of fact, my current regimen came from reading and researching several Q&A’s on here!! I suggested it to my oncologist and she said WHY NOT?? So, for the past couple of months, I’ve been on what I suggested and my tumor markers have come down!!!!! I can’t wait for my scans next month!!

We are so fortunate to have each other!! God Bless and much love,

Jody

[hopeoflife in reply to CTGirl1962]

Dear Jody,

I am so happy for you that your tumor marker have come down and that the information shared on this wonderful forum is helping in a big way! We really are blessed to have each other. I feel that people in this community have way more compassion and knowledge than the care team that I have. I pray that your scan next month will have great results and that you continue to win this fight and will regain health soon! 🙏❤️

God bless you and much love,

April

[George5545]

Pain management is a complicated business. I would definitely have a conversation with whomever prescribed the meds to look for an alternative. If you can’t get what you need from them, definitely look into palliative care.

[hopeoflife in reply to George5545]

Thank you so much for your advice! I will definitely make an appointment with my palliative nurse and ask for alternative solutions. My current pain regimen is completely unhelpful. I am grateful for your encouragement.

Have a beautiful day!

April

[Totheriver]

I mainly take extra strength Tylenol and hydro morphine as needed

[hopeoflife in reply to Totheriver]

Thank you for sharing this with me! My oncologist suggested me to take less Tylenol unless absolutely needed because of my elevated liver enzymes thanks to the toxicity of the oral cancer drugs. I have never tried hydro morphine before so I will definitely ask about it.

Many thanks again for sharing. I hope you have a restful and relaxing weekend 🙏

April

[ClarenceO]

My pain management doctor prescribed a Buprenorphine 20 mcg patch which lasts 7 days and hydromorphone 2 mg (1-2 / day) for breakthrough and nighttime joint pain. They made a huge difference.

[hopeoflife in reply to ClarenceO]

This is such helpful information. Thank you so much for sharing this with me! I was looking for non-oral pain meds and this is exactly what I need. I will definitely ask my palliative nurse practitioner about the Buprenorphine and see if I could at least try it out. I am taking a bag of drugs every day which ruined my GI tract so this is really wonderful news to me.

May I ask if you have any side effects from the patch? Do you have constipation from it? I am excited and I pray that this could be a good option for me. 🙏

Many many thanks again for sharing this! I am so grateful!!

I hope you continue to do well on your cancer journey and stay pain free. ❤️🙏

April

[ClarenceO in reply to hopeoflife]

I'm so glad April. I started w. 15 mcg as a dose and moved to 20mcg which is the highest. No, I had no side effects even though the direction sheet made it sound ominous. You're right about the orals and the gut - on top of cancer meds can wreak havoc. The oral hydromorphine has helped a lot for sleeping through joint pain. It was just increased to 3/day, 1 every 8 hours. I hope you can get the patch and have pain relief. Pain is exhausting.

Suzanne

[monkeygirl62]

I have neuropathy from cancer tumors and I have palliative care which manages my pain. I am on ER morphine 30 mg 3x a day with gabapentin 3x a day 600mg each time (for shooting, stabbing pain) and IR 15 mg morphine about. 4 times a day as needed. My pain level is a 5 every day 24 hours a day. It never goes lower, some days it's higher on break through pain. The palliative care team can't get my pain level lower. So I live with pain and have since my diagnosis, the pain is what sent me to the doctor in the first place and low and behold I had stage 4 metastatic breast cancer. If you don't have a palliative care team I would definitely suggest one. They handle the pain meds effectively. I was only on oxycodone before I had a palliative care team and it was 10 mg every,4 hours and was not managing my pain at all, I too had constipation from it. So I now am normal, no constipation. I took miralax in tea for constipation and it worked wonders. I also get nauseated on opiates so I took zofran for it again works wonders. Now my body is used to the morphine and I am not nauseated anymore. So I rarely need a zofran. Ask for zofran to manage being able to take your pain meds. It's important not to let your pain spike. ER extended release helps and the short acting IR for break through pain as needed. Ask your Oncologist for a referral to palliative care and they are also great at managing side effects from our cancer drugs too. I don't know too many oncologists that prescribed pain meds over a long term basis. Three different oncologists I had didn't like to prescribe pain meds except for when I was between palliative care teams. I only got a new palliative care team because I moved and needed one close to me.

[hopeoflife in reply to monkeygirl62]

First of all, thank you so much for taking the time to share your experience with me! This is so much appreciated and helpful. I absolutely admire your bravery and tenacity. It is so inspiring to me. Living with pain is not easy at all. You are a TRUE fighter and thriver! 🫡❤️

My current regimen is not helping my pain at all. I feel it creates more pain and discomfort for me. Unfortunately I only have a palliative nurse practitioner on my team at this point and he is not very knowledgeable and hard to reach. But I will make a request to my oncologist to see if I can have someone with more experience that can help me.

I will try miralax and definitely ask about ER morphine. For some reason, my care team never gave me morphine so I want to explore their effects. A few days ago, I almost wanted to give up on everything because the pain is making me so miserable and hopeless. But after reading the tips and experience from you all gave me hope again. I cannot tell you how grateful I am for your generosity in sharing and this wonderful forum! I am very blessed and lucky to be a part of this amazing community.

I sincerely hope that you will continue to do great and the pain will come down to a 1 or 2, or none one day! Many many thanks again for all the insights and advice that you so kindly shared with me! It is forever appreciated!!

God bless you and much love ❤️ 🙏

April

[monkeygirl62 in reply to hopeoflife]

Thank you for your lovely words. I just want to say your palliative care person should not be hard to reach at any time. My palliative care team responds quickly usually the same day and my request for refills are quickly filled. My palliative care team is awesome. I start physical therapy tomorrow to help me with my arm and hand and that might help my pain also. My daughter bought me a gym membership that has massage chairs and I intend to make good use of those chairs 😂. Keep us updated on how you are doing! Prayers 🙏and hugs 🤗.

[Rbeth]

I take oxycodone and pregabalin (lyrics) twice a day. I still get breakthrough pain. Good suggestion. Reenie

[tn12]

Hi, I read your profile. Why didn't you have surgery or chemo when first diagnosed?