In so much pain

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Sslee723
Sslee723 Member Posts: 54
in Kidney Cancer #1

I am in so much pain, this has literally been a very bad week.  Doctor prescribed tramadol 50 mg 4 x a day, it's not working , I called today and I was told to try Percocet, which also doesn't work.  My original oncologist called me this evening because I emailed him my scary catscan from the other day .  He is glad I am getting switched to Cabo, which I should get on Tuesday.  i did tell him about the pain and because he is not the oncologist treating me he couldn't really say what I should do but he told me call my dr on Monday , that pain management is something that  I need.  Anyone out there experience a lot of pain?  Sometimes I feel alone because my family is great but I don't think they get that I'm not the same me.  I wish I was and I try but I just can't do it.  I have my daughters college graduation next weekend.  It's a 6 hour drive to her school, that I've taken dozens of times but with starting Cabo on Wednesday, I'm a nervous wreck!!! I think I'm just a nervous wreck in general.  I come here to get it all off my chest and listen to what you good people have to say.  So thank you for listening to my rant, yet again .

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  • marosa
    marosa Member Posts: 334 Member
    edited May 2017 #2
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    Hello Sslee, Im so sorry you are suffering from pain

    I sincerely hope your doctor and your oncologist find very fast a painkiller that will help you keep the pain at bay and help you get thru your daughter's graduation. I looked for your personal page but its not filled. I can't help you much but as you must know, other members are already doing Cabo and they will be of more help.  I just wanted to tell you I feel for you and that you can vent and rant to your heart's desire!

    Sometimes family and friends can't really understand how we feel, how we have changed, how we seem to be a different person than the one they always knew.  That's okay, be who you are and don't let that be an extra burden for you.  That I have lived thru as well.

    Wishing you fast relief from pain and an the best on your new treatment.

     

     

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #3
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    Oh dear so sorry for your

    Oh dear so sorry for your suffering. I would avoid opiates and Tramadol is a narcotic, not an opiate. But have you tried an anti-inflammatory NSAID for example? Like Advil or Ibruprofin? And ice?

    If it is too unbearable, the ER would address your pain issues, possibly. First they would want to rule out "drug seeking" I am afraid. But may give you an actual SHOT of a stronger opiate/narcotic. Just to see if that brings down your pain in the ER.

    Let us know how you are doing. Your doctor should have an after hours, on call system, right? Maybe not your doc but whoever is on call. Try them too.

    Sorry hon,

    Sending you gentle hugs and hope for relief~

    Jan

  • Abunai
    Abunai Member Posts: 173 Member
    #4
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    No NSAIDS if you've had a nephrectomy

    My urologist and oncologist specifically warned me against anti-inflammatories after my nephrectomy.

    They also didn't want me taking too much Percocet because of the Tylenol it contains.

    I Would be in unbearable pain without some sort of pain control because of my spinal tumors and others.

    The best thing my oncologist did for me is to put me on 60mg, 12 hour extended release oxycodone along with 7.5 mg Percocet for pain breakthrough.

    If oxy (Percocet) doesn't work for you, maybe hydrocodone will. Hydro mixed with Tylenol is Vicodin. I'm pretty sure there is an extended release hydrocodone.

     

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
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    I've been on

    a steady diet of opioids for several years. At my worst maybe 2 long acting oxies and 3-4 immediate release for break through pain. The constipation was worse than my disease. I don't remember my last radiation treatments, Year or 2 ago, and I was so happy to stop with the oxies and neurontin. I've been pain free until just recently. I take only a couple 10mg oxycodones daily and an occaisional long acting oxie. It is effective. Plus no bathroom issues at all. I tend to forget that I am also benefitting from my pot use. Sativa is very relaxing and I am very active when smoking it. Indica stones me and I don't do much. In either case it reduces my opioid use significantly. The dispensory is only 3 miles away. Someone who is an experienced pot user can deal with it's effects and do well. If you have not smoked pot previously, it might be too weird. I have not consumed it in other forms like oils or cookies. I am considering it for when I am in public. In any event, it works pretty good for me.

  • Sslee723
    Sslee723 Member Posts: 54
    #6
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    Called dr

    So I called doctors office and I got to talk to the oncology fellow on duty at the moment and he told me to go to the emergency room.  Ughhhhh I hate the emergency room.  He said he can prescribe anything stronger over the  phone if the pain was that bad to go.  This is so crazy , I can't be going through this right now my daughter graduates in one week.  We have to drive up to her college, 6 hours, I hope and pray that I can make this trip without pain, she is my baby .  I'll keep you all informed and thank you all fox, Jan, abunai, and Marosa for your responses.  You guys have become like a second family the past couple of months. 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited May 2017 #7
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    Of course you want to be

    Of course you want to be there for your baby! And yes, ABunai, I forgot about the NSAIDs. I know better!!

    But if you cannot go, have them do a face-to face and video tape it for you. I know, I know its not the same.

    But what if you get up there, after 6 hours and need dire help?

    I get how you don't want to got to ER, but they CAN give you those shots and instruct you on what to do.

    Hope and pray you get to be there.. but.. be reasonable too! How would your daughter feel if she knew she caused you more pain? Have you even discussed this with her? Or like a good parent, you are keeping this to yourself?

    Sending you calm, healing vibes!

    Gentle hugs, Jan

  • apassant
    apassant Member Posts: 3
    #8
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    Sorry to hear that!

    Sorry to hear that!

    I also had strong abdomen pain a few weeks after my diagnosis (end of January this year). Tramadol was not enough, so the team added Lyrica 50mg 3 times a day + Paracetamol as needed up to 4 times a day. I was still in pain, so they've added 5mg 12 hour extended release morphine twice a day + 5mg quick release morphine as needed up to 4 times a day (I mostly took it before bedtime to ensure I could sleep). I felt better a few days after this combo, which was given a few days after starting my treatement (KEYNOTE 426 trial: pembrolizumab + axitinib).

    During pain crisis before the treatment, I found that paracetamol / nurophen worked well, but it took more than 1h to feel the positive effect.

    Hope you can find something to help reducing the pain!

     

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    #9
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    So sorry

    that you are going through this...prayers for you and a virtual hug for you too.

  • Nekocat
    Nekocat Member Posts: 11
    #10
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    I truly understand when you

    I truly understand when you mention pain 2 days ago was in the ER after taking 4 oxi = 20mg at home then going to ER and getting IV morphine and it not doing anything then they final gave me 1mg iv Hydrocodone which only lasted one hour so they raised the dose and now at home taking 2mg Hydrocodone every 4 hours.

    It helps though i have to becareful of becoming addcited and since nartoics bind you not having a solid bowl movement is truly tough.

    When your mind is focused on the pain you tend to not be able to think clear or focus on much.

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