1 year later

frokker68 Member Posts: 49 Member

Well, 1 year ago this week I started chemo/radiation for stage 4 base of tongue cancer.   I had 35 rads and 6 weekly chemo of cisplatin.  I had a PEG tube as well.  I had a really hard time not with treatment, but with recovery.  When treatment ended, I didnt eat food until 4 months out from treatment.  I had very bad pain and trouble swallowing.  I no longer have pain, but swallowing is somewhat difficult.  Seems food gets caught at first swallow, then the 2nd swallow with help of water it goes down.  Its working as I have gained back 40 pounds of the 90 pounds i lost  

I still deal with plenty side effects; ringing in ears, chemo brain (forgetting things), neuropathy of feet and fingers, dry mouth, fatigue and some overall pain in my joints.

Anyway,  just wanted to post an update.  For those just going through this treatment, hang in there.  It is the pit of hell to endure but it does get better with time.  And read this board often.  It definitely helped me along the way.  Especially Matt and his words of wisdom along with countless others.  For that,  I thank you all.





  • CivilMatt
    CivilMatt Member Posts: 4,722 Member


    You sound like you could use some good luck moving forward.  You mention that you have regained 40lbs. so I am going to figure you are well on your way to a good “new normal”.  During those first years post I would get an ice cream cone every week. It is something I liked to do and I did it.  Ice cream is hard for many to enjoy, but I did and I do.

    I hope you find something you like to eat, you enjoy it and it doesn’t fight you or bite back.

    I think I will run down to MacDonald’s and get an ice cream sundae.



  • Clon
    Clon Member Posts: 20


    I am right there with you. I started treatment on May 1st of last year, also 35 rads and 7 weeks of cisplatin.  I had head and neck with unknown primary.  I lost too much weight and ended up on a PEG tube. I have to agree, as hard as the treatment was the recovery was so much worse. There were days we were not sure if I was going to pull through or not. My doctor told me it would take two years before I would start to get my life back.

    I am happy to say that I have put most of my weight back on, I have returned to work full time and have started running 5K races again.  At 56 years old, I am happy with where I am at.

    I still have trouble eating, especially beef and pork, they just won't go down when I swallow. The fatigue and dry mouth still bother me but they are bearable.

    I'll second your advice to anyone just starting this journey.  Hang in there, keep pushing and you will get through this.  It may not be easy but it is worth it.



  • tommyodavey
    tommyodavey Member Posts: 727 Member
    Nice Recovery

    Good news Keith all around.  Healing works slowly with our throats but it will get better in time.  Certain cereals I cannot eat anymore due to small pieces getting stuck in my throat and coughing for way too long.  Life cereal seems to go down smoothly.  I just can't eat Cream of Wheat or slick eggs every day.  Certain foods I avoid when out in public for the same reasons.  In my throat it seems there is scar tissue that grabs hold of the food and keeps it there.  I'm sure a lot of people here know what I'm talking about.  Coughing seems to be a norm when eating now.  Not always, but still expected.

    Glad to hear you've gained some weight back and are on the road to recovery.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    Keep On Trucking

    You have the worst of the journey behind you. Keep looking foreward and enjoy what the future holds.

  • donfoo
    donfoo Member Posts: 1,771 Member
    marching forward


    Good to hear you are well into your recovery. Many call it the "new normal" but it' still early days yet some days at a year that is what it is. More things will return like the old days. some will be different. In either case, NED reports trump all. 

  • Andy13460
    Andy13460 Member Posts: 115
    edited June 2018 #7
    Great news

    Hav.ent been here for a while glad you have the first year done

  • wbcgaruss
    wbcgaruss Member Posts: 2,318 Member
    Congrats I am with You

    On most all the first paragraph except I had throat cancer and had a peg till about 5 months out but did not have the pain in swallowing.

    But I had to really chew and be careful. Then on day even though I had eaten it before I got a piece of turkey stuck and it wouldn't go up or down.

    We had to go to the ER and have it removed and after that I ended up getting 4 throat dilations which helped a lot.

    I could swallow much better after that and pass pills I used to have a lot of trouble with. You need checked first by a gastronology doc as I think some

    they can't do much with but I know the doc says the throat is sort of brittle after rads-not as flexible and they can only go a little at a time to avoid tearing.

    As far as the after effects; ringing in ears, chemo brain (forgetting things), neuropathy of feet and hands and it travels up my forearms and calves also, dry mouth

    are all with me but I believe the chemo brain went away in about 2-3 years.

    I agree this treatment is tough and you push through it and have another 4-5 months just to feel decent again recovering from the treatment.

    The radiation nurse told me till you get through this you might as well figure a year off your life (devoted to this treatment scenario)

    And I agree this board of folks is a Godsend.

    God Bless you Keith and congrats for making it and Live On.