Extreme pain, questions and bit of a vent

ozymandible
ozymandible Member Posts: 324 Member
in Head and Neck Cancer #1

I am having pain bad enough to medicate 24/7.  My chemo doc is covering me until I can see the pain specialist next week.

I am on 600 mg gabapentin 3x a day, norco 10/325 every 4 hours as needed. Probably not that much for HNC... I was taking ibuprofen too but trying to stay off of any blood thinners for upcoming biopsy(not scheduled yet but will be). Am I just not on enough painkiller or is there something missing?

Several times a day I get a wave of excruciating pain that won't stop.  I scream until I get enough painkiller in me.  The pain is now centered in my mouth where the flap is attached and under my jaw where there is a very hard spot(fibrosis?)and around my right ear.

At my FU with the radiation doc, I was told radiation would not be an option for me if cancer comes back.  I think it must be back and that's why I'm in such pain.  It feels more like nerve pain.

I don't know if I can tough it out until next week.  I'm going to ask for something stronger.  I am going to take my daughter with me she lives with me and knows what I take(not abusing)and how it's working.  It bothers me to talk now.  I am 100% tube fed now. It hurts too much and wears me out to try and eat anymore but still doing sips of waterand lots of swallowing(the ever present gobs of mucous).  I'm doing meds by tube I gave up I'm so tired of choking on pills and they just get stuck.

Is this part of the deal?  Or am I fixing to take a major turn for the worse?  It's getting kind of scary.  My kids have seen me the most and they can sort of handle it but I don't believe anyone else in our family will be able to.   My daughter is afraid that if she or my son is not around to speak for me that other people in my family will call 911 and have me tossed into a hospital bed.  We don't believe it's that dire yet.  

I've been trying to be brave and strong but I can't hide it from my kids they know me.  The rest of my family refuses to see they think I'm going to bounce right back like I always do.

Thank you for reading.

Comments

  • SuzJ
    SuzJ Member Posts: 446 Member
    #2
    Ozy

    You don't have liquid Lidocaine? If not, get it now, plus magic Mouthwash (I hated thst stuff) Lidocaine made eating doable.

    I hate meds with a passion, basically because they never get rid of the pain, they just mess with my head.

    So - Ice chips, ice cold drinks, liquid lidocaine, and MM.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited November 2021 #3
    I have lidocaine.  My problem

    I have lidocaine.  My problem with eating is due to swelling in my mouth.  I don't know if swelling is from lymph  backing up(doctor thinks this is the case)or because of necrotic area found in scan could be both I suppose.  I also have a lot of pain where flap is attached to my mouth.  The last time I put lidocaine in my mouth it hurt more.  

    This nerve pain is so weird.  I hope the pain mgmt spec can figure something out because I have at least one episode a day of screaming for about 10-15 minutes from the pain.  I don't like having to take these meds either but unfortunately I need to.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited November 2021 #4
    If they think

    :You have mentioned that you think its  a malignancy somewhere, but you wrote about it Weeks ago and they still have not done a Biopsy.  Head & Neck surgeons do not drag their feet, if they suspect malignancy..... So, why the delay?  There seems no Urgency on their part.

    I have an Urgent CT next week, Chest.  The scheduler called me Today.  In spite of COVID, and the Hospital being Full, etc.,  I get Timey, quick responses to Everything.  No delays, no putting things off.

    I surely hope it's not a malignancy,..... Maybe it is just Nerve pain.

    I have very sharp pain up into my left ear, and I just consider it referred pain from the terrible mouth sores I have.  I take NO pain meds, except for Tylenol and I got through all my surgeries, (see my Profile), with Tylenol once I was home.  They did give me the appropriate pain meds, ... I just never took them.  To me, the Nausea from them was worse than the pain.

    They tell me that my pain tolerance is "way beyond the curve".  'Tis true that I am exceptionally pain tolerant.  and have been long before my HNSCC.

    May they get to the bottom of it, soon.  Maybe remind them?

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited November 2021 #5
    Ozy,

    I seem to recall some sort of orange, pain killer (opiod based) - that did the trick for me.

    To be honest, though - painkillers scare me - and I had a whole bottle of that stuff left over, after I was done.

    One of my Oncologists asked me if I thought I might need Fentanyl - and I said I DEFINITELY didn't feel the need for that!!

    Regardless, I'm sure you're talking to your team about the pain - and I hope they find something that works for you.

    I feel for you, and I hope you're looking back on all of this, soon.

    Hang in there, hon!

    MG

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited November 2021 #6
    Had FU with chemo doc.  I

    Had FU with chemo doc.  I guess someone was supposed to schedule my lung biopsy and didn't.  This cancer center was recently gobbled up by a hospital so I guess things might be fouled up here and there.

    Chemo doc is pushing my lung biopsy and I just scheduled a biopsy of my jaw with my local ENT.

    Chemo doc is saying things don't look so good.  She thinks the jaw is cancer and same with lungs.

    If it is cancer, will probably do immunity-keytruda and opdivo and I think she said something about carboplatin?

    I know, it ain't cancer until the biopsy says and NEGU.  Cancer would explain this godawful pain I've been having.  The report said something about perineural invasion too.

    She is putting me on a fentanyl patch and I will continue gabapentin and the opiate but opiates will be more for breakthrough pain.  She says I may have to wear two patches.  They are the kind you change every three days.  She's trying to give me just enough to get to next week so insurance doesn't step on pain management guy.  

    Pain mgmt guy is hospice/palliative so I should be able to get meds I can put into my tube, and anything else like formula and feeding stuff.

    Y'all I am tired today! Will update if anything new comes in.  Thank you for reading.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited November 2021 #7
    ozy The One Thing

    I still keep thinking about your situation is you just went through cancer treatment the whole routine of radiation and chemo.
    That should have gotten rid of cancer or if any is left it could have been missed but should be small and not causing this much trouble.
    I have been following your journey and am a bit confused as to where you are at on this.
    As far as pain I had a couple of things to use in case I needed them but Liquid Hydrocodone seemed to hit the spot and liquid already will go right in the tube.
    Wishing you a positive easy resolve to this problem-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited November 2021 #8
    Just had zoom meeting with

    Just had zoom meeting with pain mgmt dr.  He's going to give me anything I need to stop this pain.  Luckily I had one of those extra bad spells so he could see just how bad it gets.  

    One biopsy for my neck/mouth is scheduled.  Still waiting on lung biopsies.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited November 2021 #9
    Seems the Fentanyl patch is

    Seems the Fentanyl patch is not covered by my insurance?  It scares me anyway.  Would rather take oxy.

  • Remington25
    Remington25 Member Posts: 93 Member
    #10
    Fentanyl Patch

    I used 3 patches.  I was told that they were the lowest dosage.  Honestly, extra strength tylenol and ibuprofin seemed to be more affective than the oxy in my case.  The fentanyl didn't make me feel loopy at all but sort of set my mind at ease.  I changed patches every 3 days and I think I only used 2 total patches (maybe a 3rd) .  We put them on my upper back.  Obviouly talk with your doctor about them but I really recommend them.  I was also scared/concerned of the fentanyl but I'm glad I used them to get me over the worst days.   

  • ozymandible
    ozymandible Member Posts: 324 Member
    #11
    I just got patches yesterday.

    I just got patches yesterday.  One month supply 25 mcg/hr, change every three days.  Dr said if this isn't enough I can use two of them.  I just put it on last night so too soon to tell.

    Initially I was very resistant to this patch because I would have long pain free stretches throughout the day and didn't need continuous feed.  But when it got bad enough to medicate 24/7 I decided it was time.  They gave me little bitty oxy 5s for breakthrough pain.  Was supposed to be liquid but pharmacy didn't have liquid.  

    Hopefully I will start getting some relief now!

  • ozymandible
    ozymandible Member Posts: 324 Member
    #12
    I just saw my local ENT.  No

    I just saw my local ENT.  No biopsy-he feels like it should be done with lung biopsy.

    He is treating me for thrush and cellulitis in my neck.  When that is resolved my pain will probably decrease significantly.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited November 2021 #13
    Well, Very Good

    At least you are getting some answers now.
    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #14

    Finally got a biopsy today. Several in neck and several in lung. We'll see...

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #15

    Hello Osymandible,

    How are you doing this evening? I have dropped in on your conversation about your pain caused by treatments for your cancer and a number of other items which go along with cancer treatments.

    I had stage IVa SCC, BOT, 1 lymph node, HPV+ (surgery, radiation and Erbitux). I also had 2 PEG’s installed for the duration of my treatments. Why I had the PEG’s put in is because I did not know any better and I thought it was the thing to do. I know a lot more about them today and I am not sure I would get one today, but, I might. Anyway, the first one sucked, was extremely painful (maybe the worst pain in my life, no kidding) and did not work well at all. My second PEG was a big success. It worked great right at the get go. I would hang’em high and open her up for maximum flow, that is the Jevity I am talking about. The reason for rambling on about my PEG is, that I always, every day drank at least 10 glasses of water and I drank one of my meals each day. The reason I drank the water was because I heard Skikffin16 talk about drinking lots of water so that I would not forget how to swallow. People on the H&N forum today may be facing real swallowing challenges. The fact that I did drink one meal a day has always made me think that maybe I could have gone PEGless to start with.

    While I am at it, I was a real big fan of the Magic Mouthwash made at my local compounding pharmacy, just for me. I agree with those who said it tastes bad but, I really acquired a true affection for the stuff and I ended up going through 6 bottles. And it was none of this swish and spit, like with the soda/salt water I rinsed my mouth with numerous times a day (and night). I would swish the Magic mouthwash around and then I swallow it and I did all 6 bottled that way. I would take a hit in the parking lot every morning prior to my rad treatments.

    You really do need to customize your treatment plan as-needed to combat your pain and discomfort. The H&N forum worked overtime for me and provided me with many good choices to select from.


    Good luck to you,

    CivilMatt

  • ozymandible
    ozymandible Member Posts: 324 Member
    #16

    Thank you Matt.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #17

    PEG comment:

    I just want to mention another angle on this feeding tube thing.

    I know we all really don’t want to get these.

    But if your care team recommends one discuss the reason with them.

    My first PEG tube and my second one I had no problems with so I was blessed.

    I had a very large tumor in my throat and I think my team knew my throat would

    close off because of the radiation.

    Which it did and I could get nothing through not even a sip of water for a couple of months.

    So your team may want you to have one because they are fairly certain nothing will go through for a while.

    You may want to rough it to maintain your swallowing but there are exercises for that.

    If your throat is swelled closed due to radiation no amount of swallowing and good wishes will get food where it is needed.

    It’s just physically closed till you recover and heal a bit and the swelling goes down.

    It’s not one of the pleasant parts of H & N treatment but it can be a lifesaver.

    Take care-God Bless-Russ

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