Breakthrough pain treatment options.

Rainedrop
Rainedrop Member Posts: 70
edited March 2021 in Pain

I began to have uncontrollable pain in October. I would try to wait it out but several times I have ended my day in the ER with morphine and benedryl (for itching from morphine.)

Spoke with MO and he has prescribed 2.5 mg oxycodone tid. The problem is that it doesn’t seem to make a dent. This is not a localized pain.

I am very even keeled and have a high pain tolerance, but I don’t know what to do at this point.

I have developed Numb Chin Syndrome so I will have a brain MRI this week.

Does anyone have a suggestion for the breakthrough pain? It’s making me tense and anxious and I think that makes the pain worse.

Thanks for any ideas you might have.



Comments

  • S3K5
    S3K5 Member Posts: 606
    edited January 2021
    Hi Rainedrop, please post this question in 'Bone Mets Thread' since there are many active, experienced members who will probably respond to you quickly.

    Forum: Stage IV/Metastatic Breast Cancer ONLY: Topic: Bone Mets Thread

    Have you been on any pain medication regularly? I was given Fentanyl dermal patch for pain relief but couldn't keep it on for too long because I get nausea with immediate release opioids. If you can tolerate this, maybe your MO can prescribe this for you?

    My MO referred me to a pain specialist who has been taking care of my pain medications, interventional treatments, etc. Since I cannot take immediate release Morphine, I take extended release medications which helps with the pain. I was told that the pain medication doesn't help much once the pain has started. So I take Celebrex and Tramadol at regular intervals, plus I have extended release hydromorphone (Exalgo) for night time use.

    With the pain medications, everything is a trial and error - what works for one person may not work for another. Is it possible for you to see a pain specialist? That would definitely be worth it since the bone mets pain can be very unpredictable. It also depends on how extensive your bone mets is and what kind of local treatment have you had. I have extensive bone mets from C7 to L5 (yeah, every vertebrae) and I have had cyberknife, palliative radiation and RFA to the most painful spots.

    Good luck with the brain MRI. Hopefully it will be clear.

  • Rainedrop
    Rainedrop Member Posts: 70
    edited January 2021


    thanks! I will post it there too.

    I have oxycodone but I think you are right. If you start it when the pain starts it doesn’t really help. I had dalauded at the Er. It didn’t take the pain away, but it did take the edge off so the other pain meds worked.

    I’m quite anxious about my brain Scan and am just tired of it all. Hope it’s okay to say that.

    I haven’t really had much pain until October. Thank goodness, right!



  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited March 2021

    Any knowledge out there on pain treatment for specific areas rather than dosing the entire body? Getting a lot of pain middle of night in arm that is probably from lymphedema, hopefully not an indication that it has spread to the bones. Also pasting what I put on other threads on getting 2nd opinions/clinical trials.

    I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

    12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2021

    I can’t address all of your issues but did want to address second opinions and clinical trials. A second opinion is simply that, not necessarily a different opinion. Sometimes a second opinion doc makes new suggestions, sometimes they agree with your first doctor. Clinical trials have very specific admissions criteria, if you do not meet the criteria then you are not admitted to the trial.

    As to whether or not your cancers are new, comparing tissue samples from each of your biopsies is the way to determine this. As for waiting for bc to show up as mets and then being treated, if mets have not developed, how can doctors decide how to treat them? Breast cancer is very complex and sadly we’ve been led to believe that it is easy, curable and pink! Progress in treating bc has made noticeable advances since my dx but there is still a long way to go. We all want better and we want it now but that is not our reality. Take care.

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    bluegirl, so sorry for your 3rd go round & your pain. I was just diagnosed last week with metastatic cancer. I had bad swelling in lymphadema arm & a rash, thought it was celluitus, but turned out to be cancer. Had a pet scan & showed extensive spread - liver, lungs & multiple lymph nodes & some bone in my non lymphadema arm. A few months ago I was nervous about bone Mets in my lymphadema arm - I just couldn't make headway in that arm. They xrayed & found nothing. I am currently waiting to have a node biopsied to see if this is the original breast cancer or if it has mutated - the treatment plan will depend on the biopsy outcome. I was told that once in treatment I will be monitored with tumor marker results. They took a baseline count. My lymphedema is very bad as well - I have a blood clot I that arm & can't have any massage or therapy for at least a month :(. It is all so overwhelming & frustrating! I send all my best wishes & positive vibes. Stay strong...it is hard!

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited March 2021

    amanda - sorry you are going through this, BC really sucks. I think LE compression wraps might work better than compression sleeve. My swelling in R-arm went way down these last couple of days, could be any of a number of reasons why. My LE tightly wrapped me on Wednesday, I could no longer wear the compression sleeve. On Friday I had an angio-thorax CT to evaluate shortness of breath (getting worse over the past couple of weeks.) Was immediately sent to ER who removed 1 1/2 liters if fluid from chest wall. Put on blood thinner because of suspected clots. On Saturday, I removed wrap, swelling way down. Looks even better on Monday morning. Might be ups/downs lymphedema, removal of chest fluid, bood thinner, tight wrap LE applied, all of the above? Due for ultrasound to reevaluate clot potential. Here is a link on self-wrapping. Unable to do it the first two times I tried, dominant arm is the one affected. Click on the resources tab. Self Wrapping https://klosetraining.com/

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    bluegirl, good that your swelling decreased. I was worried about my arm & in a lot of pain so went to see the Dr this afternoon, I was worried about infection. He told me I could wear my solaris tribute night sleeve & thought a compression sleeve might help with the pain a bit. I need to order a bigger size. He also thought most of my swelling was from the clot. My husband uses the klose videos to wrap my arm - might try that.

    I'm on eliquis for the clot. Was it a pleural effusion that you had? Those make you quite breathless. I had 1 drained ( thorectomy ?) a few years ago. Oh, the Dr said that cancer drives blood clots - something to be aware of.

    Best luck on your ultrasound. Take care & stay strong...

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited March 2021

    amanda - discharge sheet says pleural effusion right. So did you get any warnings about food/blood clots/eliquis? THere are warning about not doing things that risk injury. I though I just read something about being careful eating a lot of kale, spinach, broccoli brussle sprouts when taking blood thinners,because of vitamin K, might interfere or need dose adjusted. DR at ER did not say anything about diet, just avoiding anti-inflammitories, alcohol. What is "a lot" ? I eat with meals, almost daily, do not juice. Ultrasound affected arm and neck. She said there was flow, not as strong as on the left, did not mention clot.

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    bluegirl - I had a pleural effusion ( 2 actually, I had a heart valve repair 4 years ago - radiation induced heart disease being another " gift" from my cancer treatment :(). I was put on eliquis for about 6 months as a precautionary measure. Eliquis is one of the new line blood thinners, you don't have to watch what you eat - on the old line, Coumadin, you have to be careful about greens, etc & have your blood levels tested every week or two.

    You do have to be careful about bleeding on eliquis, there is no antidote. I took it as a preventive measure for 1 1/2 years altogether & never had a problem. I had some extensive dental work done during that time too & everything went ok. So basically you are free to eat whatever you chose on eliquis.

    Good, no blood clots found...Take care:)

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited March 2021

    Thank you Amanda for explanation. Not sure how long DR will suggest taking it. At the ER the DR thought the CT suggested possible clots in chest, maybe arm as well. I think there was too much fluid to clearly see. Ultrasound on Tuesday found no clots in arm, but did note fibrotic tissue and reduced flow (compared to left side). So maybe I can stop Eliquiss after first round.

  • moth
    moth Member Posts: 4,800
    edited March 2021

    amanda, there is an antidote for anoxaban (eliquis) and rivaroxaban. It's called Andexxa. It was given accelerated approval a few years ago. RCTs on it are still continuing but early results showed efficacy. https://jamanetwork.com/journals/jama/article-abst...

    & https://www.fda.gov/media/113279/download


  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    thanks for that update Moth, that's so good to know. I was on eliquis 4-5 years ago ( for afib ) & that always worried me. Now I'm back on it for a blood clot & it's nice to hear there's an antidote available.

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