Please help! Much appreciated.

FVR58
FVR58 Member Posts: 4
in Head and Neck Cancer #1

I completed my Chemo/Radiation in Nov. Here it is February, I am still in a lot of pain. I am using MuGard and Magic Mouthwash (4 times a day). I also rinse my mouth out with baking soda and salt solution 3-4 times a day. I take Tylenol for pain. Yesterday, I started to take Gabapentin (300mg). I had a PET scan 3 weeks ago. My doctor said it looked good, but there was a shadow that he could not determine if it was scar tissue or cancer growth. He said he would order a CT scan at the end of March. I am in a lot of pain and have very high anxiety. I guess I am freaking out. Any advice would be truly appreciated.  

Comments

  • Dave705
    Dave705 Member Posts: 62 Member
    edited February 2021 #2
    Stay calm

    Sorry to hear of your problems. The pain should subside, but will take time. Even longer then you have been finished. I had and still have some swollen scar tissue in my neck, but it has gotten much better since I have finished. I am 7 months since my radiation, but it did take awhile for this scar tissue to get better. Very frustrating to hear that they couldn't determine what the shadow was, but try to stay positive that it is just scar tissue. The months after your treatments are very tough, but it will get better. I pray all goes well with your ct scan. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited February 2021 #3
    It Is Not

    Real long since you finished treatment and some folks take longer to recover or not to have some pain and you are only 2 to 2+ months out. it is early yet and that is early for a PRT scan as it can show false positives from radiation. Just be patient and give it another month. Some folks on here said they are not giving PET scans at the 3-month mark anymore but waiting 6 months. Get with your doc tomorrow and ask for some stronger pain meds till you get through this period don't put up with the pain. I had oxycodone/acetaminophen and  Lortab or hydrocodone if I needed it. Ask about those. Take Care-God Bless-Russ

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #4
    FVR,

    I'm sorry to hear that you've still got the pain. I can clearly remember just wanting to get treatment OVER WITH, and assumed I'd be back to normal soon there after. But, it took 3-4 months, before things like swallowing and taste started to come back again.

    As far as your scan. I also recall them seeing something on one of mine ... and it was just scar tissue - no worries. I sincerely hope (and expect) that this is the same thing in your case.

    It takes time - but, you WILL feel better. Please just hang in there a while!

    mg

  • FVR58
    FVR58 Member Posts: 4
    edited February 2021 #5
    Taking it one hour at a time - mouth ulcers & eating

    Thanks for the words of encouragement. It's tough waiting for the scan.  I do have pain meds, but my Doc said don't take them unless needed.  Right now, I'm using mouthwashes, Tylenol and Gabapentin. I think a lot of the pain is from the ulcer at the back of my tongue. Can anyone share the secrets of dealing with mouth ulcers? It makes it almost impossible to eat. I really appreciate your thoughts. It helps a lot especially since you've been down this road. It's hard for others to understand.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited February 2021 #6
    FVR58 said:

    Taking it one hour at a time - mouth ulcers & eating

    Thanks for the words of encouragement. It's tough waiting for the scan.  I do have pain meds, but my Doc said don't take them unless needed.  Right now, I'm using mouthwashes, Tylenol and Gabapentin. I think a lot of the pain is from the ulcer at the back of my tongue. Can anyone share the secrets of dealing with mouth ulcers? It makes it almost impossible to eat. I really appreciate your thoughts. It helps a lot especially since you've been down this road. It's hard for others to understand.

    Keep Using The

    Salt and baking soda mix and any other rinse that helps but mouthwash or alcohol or some others may irritate. If it seems to irritate don't use it. It may be time for the pain meds for a bit. Take Care-God Bless-Russ

  • Suez39
    Suez39 Member Posts: 165 Member
    edited February 2021 #7
    The pain lasted a long time

    The pain lasted a long time for me. I still take oxycodone every night, and it's been over 2 yrs for me. But don't get nervous, my situation different. I had cancer twice and radiated in the same area. I can't drink by mouth, and dryness in my throat gets my tissues irritated, why I still have pain. Think positive, the shadow might be more scar tissue. 

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