Treatment update

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frokker68
frokker68 Member Posts: 49 Member
in Head and Neck Cancer #1

Been about 2 weeks since last update.  I have been having a hard time and think I have every side effect to the extreme.

Tomorrow is my last of 7 cisplatin treatments.  Hydration is still an issue for me.  Been on peg tube for about a month now. Blood pressure stays super low.  Peg tube hole never healed, still oozes funky gunk.  Sore now if I swallow, I can't help but to cry out in pain.  Feels like it's been sandpapered and burned with molten metal.  Every day I hope I peaked pain wise only to be worse off the next day.  I still have 9 rads to go. So I am coming to the finish line.  

My biggest issue is the pain in the back of mouth/tongue.  Nothing helps that pain.  All other mouth pain does well with pain meds and magic mouthwash. Just not the back.  

The low blood pressure leaves me lightheaded and feeling crappy.  This has brought on vomiting for 2 to 3 days after chemo dispite taking anti nasua meds.   All last week went in everyday early for a couple bags of hydration. Will do the same this week.  My white blood cell count dropped super low to where I have to wear a mask everywhere now. 

This has been a test of mental and physical fortitude.  Absolutely the hardest thing I have been through my entire life.  Even my 20 years in the military with 6 tours to the middle east was nothing compared to this!

I am glad the treatment finish line is in sight as I don't know how much more I can take.  

Well, thanks for letting me vent.  I feel better getting this off my chest. 

Keith 

Comments

  • SuzJ
    SuzJ Member Posts: 427 Member
    #2
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    Keith..

    It WILL get better.

    Are you taking pain meds? I took them before meals to be able to eat.

    I'm sorry but the 2 weeks after rads will be the worst, then one day, you'll realize, "that wasn't so bad" and the same the next and so on. My Rad Onc Dr told me that, and I didn't believe him.. 1)I didnt think the pain could get much worse and 2) I couldnt imagine it getting better. I was wrong on both counts.

    Hang in, you are nearly there.

    Sue

  • soonermom
    soonermom Member Posts: 155
    edited June 2017 #3
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    Don't give up

    It does get better but there will be rough days ahead.  Stay on the extra fluids.  Hydration is critical.  Post treatment is a roller coaster but you can do it.  My husband is back at work and talking again.  We still have challenges though.  It is just a hard journey.  Our lowest point was the second week after treament ended.  It has been a slow climb back up but you get through it.  Sounds like you have a supportive medical team. 

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #4
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    You're almost there

    Keith,

    You know the old saying "When things get tough, the tough get going". Your pack is heavy, your legs are burning and you can see the crest of the mountain top, so take a deep breath and push on. 

    First let me say Thank You for your Service to our Country. Semper Fi

    As SuzJ stated, your troubles will continue for a few weeks after treatments end as they are cumulative. Have you been using "Magic Mouthwash" to gargle and rinse with prior to eating. Has anyone suggested the Baking Soda and Salt solution to use the same way? I used the Baking Soda and Salt solution as often as every 20-30 minutes to semi-numb my mouth and throat to ease the discomfort. 

    I was also given a pain med by the name of "Neurontin" which works on the nerve pain and helped. 

    "Welcome Home" You will get thru this.

    My Best to You and Everyone Here

  • Engelsa
    Engelsa Member Posts: 50
    #5
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    Have Doc check for Thrush

    keith

    I am so proud of you for all of the fighting you are doing. All of you cancer warriors are my hero.

    Please ask your doctor about treatment for Thrush. My husband said the exact same thing about his throat. Once they treated the Thrush the pain meds were able to cover the pain. My husband did have to increase pain med strength a few times during treatment. Thrush treatment was very painful for four days until it got under control but it truly helped his throat pain.

    Keep up the IV Fluids a few weeks after rads end. This will help you get to the healing part. The process is slow. Measure in weeks as the days can go up and down w/o reason.

    You are doing great and I am extremely proud of you for fighting. Just keep taking that next step.

    Sara

  • jpmsd
    jpmsd Member Posts: 14
    #6
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    I will echo the comments here

    I will echo the comments here to be prepared for side effects peaking around 2 weeks after treatment. I had a very similar experience to you. My treatment finished about 2.5 months ago.

    I spent about a week in the hospital during my last weeks of treatment. Had a PEG installed as I couldn't eat due to the mucousitis and the pain. It is normal for it to be oozy and crusty. Do your best to keep it clean. It will act up on you on occasion but you will learn how to deal with all the nuances. I recommend picking up some "drain sponges" to help keep it clean and dry. If you can, have them switch it out with a mic-key button. Way easier to deal with and the detachable tube makes you feel more human. Look up "granulation tissue" and be prepared for that. Not a big deal but if you aren't prepared for it I can see it being a little freaky.

    You WILL start getting better. It is very hard being a patient-patient once your side effects peak. Recovery is slow. Take good care of yourself and stay positive! 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    you don't have neck burn, that is a good thing.

    Keith,

    By the end of next week you will be finished and you will have nowhere to go but to get better.  You are probably doing better than you feel.  Just keep kicking the crap out of this invader.  Get plenty of nutrition, stay hydrated and swallow as you can.  I went through 6 bottles  of magic mouthwash and swallowed every drop.  If you are still in pain, tell your team.  Try to rest up and hang in there.

    Matt

  • Josephwc
    Josephwc Member Posts: 69
    #8
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    Keep your chin up

    Wow, I am cheering for you. I read every word with great respect for all that you are going through. Keep your eye on the finish line as we are all there waiting to celebrate. With ever step after you cross things will improve. 

  • Bob Watt
    Bob Watt Member Posts: 60 Member
    #9
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    It's almost over

    and you'll start to see improvement in the coming weeks. The day I wanted to throw in the towel was the second last day of treatment. Looking back on it now I'm glad I went the distance. Looking forward to the day that you post that you are clear of the dreaded 'c'. Laughing

  • Bionicguy
    Bionicguy Member Posts: 22
    #10
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    Fight for all your worth

    I was fortunate that I have a friend that went through the exactly the same cancer and treatment about 6 months ahead of me and we both had difficult times. He is retired Army and tough as nails. He would call and give me a sargent like pep talk. Kept telling me I had to treat the cancer just like I would the guys trying to kill us years ago. Get mad, rage at it, tell it what you are going to do to it, get madder, rage harder and never stop fighting. It wasn't magic, but it did help get my mind in the right place. It will get better and there is the other side waiting. Hang in there, my friend.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
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    Ok....you wrote that two days ago...

    so now the LAST chemo is under your belt....and you're down to 7 rads....the countdown for you begins....you're finally close enough to the end of the tunnel, that it's not just light....but DAYlight.  I know they say that the two weeks after treatment ends are worse....but from where I sat, I didn't care....I didn't have to go to frigging radiation again...which after having done so for 35 days felt like a vacation....Pain seemed more tolerable when I didn't have to get up and go somewhere every day of the week!!

    Hang in there....you'll be whoo hoo'ing and clanging the bell next week!

    p 

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #12
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    Phrannie51

    She hit the nail on the head. Will there be rough days, Yes. Will you get through them, Yes, some how or way. Then you will ring the gong. Then every day a little something will change and time will pass. Now is the time to keep your foot on the cancers throat. Do not let up now. Good Luck and Keep fighting the fight.

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