Severe muscle/bone pain in mornings?
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Severe muscle/bone pain in mornings?

› Forums › General Melanoma Community › Severe muscle/bone pain in mornings?

  • Post
    • August 1, 2018 at 12:21 am
    MelanomaMike
    Participant

    Hay Family, quick question for any you here who have Melanoma {Tumors} in their lungs, for almost a year now, when i wake up or even after 3am, i wake up with the most severe pain in my muscles {i guess bones to??} legs, arms, everywhere! my oncologist says it can be either the treatment or the location of tumors {Lungs} causing lack of blood/oxigen supply, does anyone else here have it in their lungs & having this problem? after pounding down 3 Advils & my Hydrocortisiones im good to go after 2 hours but gosh darn!..please reply ya'al!!…Mike

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  • Replies
      • August 1, 2018 at 5:39 am
      aldrichdesigner
      Participant
      Hi Mike,

      Sorry to here that your not having a very good summer and that you are experiencing all of this extra pain as a relatively new symptom. I have been following your story regularly on the boards as you’ve continue to fight this shitty disease as I am as well and am recently going thru a “stable” period, so we will see how long that lists. My muscle/joint pain is well documented on the forums if you need any proof of believeing my stories lol.

      Anyway, I live on constant pain due to my unique experience of breaking (technically fractured but a fracture is just a smaller break) my back in 3 places and having to be pieced back together with titanium pins and rods. Due to this fact, I live in chronic pain, however, I also deal with a huge amount of muscle and joint pain as a result of the Keytruda that I’m taking to clear up the tumors in my body. While, I don’t have lung nodules or tumors, I still experience a lot of what you are describing and it’s just recently gotten better for me as a result of my doc adding Prednisone to my list of regular meds and I FINALLY got some relief and now (only two months later) I have hardly any joint pain anymore and what I do have is completely tolerable compared to what I was dealing with before.

      To be clear, I am heavily medicated still, as my side effects run on the higher side of things for pembro, but the addition of Prednisone was finally the magic ticket. But for full disclosure, I also take about 200mg of Oxycodone XR daily, 600-800mg of Ibuprofen 3 times daily, 400mg x 3 of gabapentin daily as well as the occasional 15mg of Oxycotin when needed for break through pain. All on top of the 10mg of Prednisone that I started taking about 2 months ago. And this is just the meds for the pain. The others aren’t really relevant to this story lol. Anyway, my point is that I’m no stranger to joint pain so hopefully this story helps you as us warriors need to stick together.

      Hope you can find some relief Mike! Let me know if you have any questions.

        • August 1, 2018 at 5:47 am
        aldrichdesigner
        Participant
        I also have lidocaine patches and a custom cream supplied to me via prescription that I use to assist with specific spot pain that I can use when things are bad and those can definitely be handy to have when the pain wants to really fight back, which tends to be at night time for me after all the activities have subsided for the day and it’s time to rest.

        I also smoke marijuana daily for pain and anxiety and it’s a must at this point but can sometimes be hard to regularly take for obvious reasons as I don’t always have access to edibles or oil just yet.

        I just wanted to make sure that I was giving you an absolute full list of how I treat my pain and if I leave anything out then I could be costing you additional relief. It’s a lot of freaking meds and the cost adds up for sure but no one can live in constant pain, I don’t care how tough you are. I can’t tell you how much eached contributes but I didn’t see any real lasting progress until they added the daily steroid (Prednisone).

      • August 1, 2018 at 12:44 pm
      marta010
      Participant

      Hi Mike – my husband is currently on Keytruda and Dabrafenib and experiences random, moving muscle and joint pain.  The location moves – might be arms, shoulders and neck one day and knees, hips the next.  He recently increased his hydrocortisone dose and is on indomethicin for pain relief.  It comes and goes with no particular pattern so he deals with it as it comes.  Hope you find relief and that you get good results from your treatment.  Take Care.

      Ann

      • August 1, 2018 at 4:18 pm
      Hukill
      Participant

      I have had 5 combos (ipi/nivo) and friday will have hopefully my last double dose of nivo, numbers 51 and 52. I have a lot of muscle/joint pain where sometimes I just sit still for hours and do not move because it hurts. I can't find anyone to do the manakin challenge with me. If my scans are clean friday I get to stop treatment. I don't know if the side effects will ever go away.

      • August 1, 2018 at 6:06 pm
      mandyjill
      Participant

      I experienced severe bone/muscle/joint pain about 5 or 6 months after starting on Opdivo.  Started on prednisone an that pretty much took care of it.

      • August 2, 2018 at 3:41 am
      MelanomaMike
      Participant

      Thank You family for the replys, i knew i wasnt the only one who had severe pains whether or not you all have tumors in yer lungs such as me or not, im stumped to remember "if" these pains where taking place "Before my "very first" introduction to treatment wich was last year Nov 22nd 2017 and that was when i did the Pembro, i wanna say i recolect it was going on before but its foggy. To let ya all in on a secret, i am a recovering addict & have been clean since 2007, and being diagnosed soon after {2008} wth 6 seprate surgeries to follow was "a piece of cake" thank god in the "pain" department, i managed with Ibuprohins & what not. Believe me, like one of the responders here had mentioned, he {or she} takes narcotics as needed but, ill know when its to unbarable to take. And i also know, its the addicts "frame of Mind" when he/she uses medications like that, are we using it for pain or a head change? i can i only fool myself…

       Thanks ya all, does anyone else here have Melanoma in their Lungs?..take care, Mike…

        • August 4, 2018 at 12:49 am
        lkb
        Participant

        Hooray for your accomplishment of 11 years clean!

         

        • August 4, 2018 at 7:49 pm
        MelanomaMike
        Participant

        Thanx ikb! "Progress Never Profection"!…

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