Long term side effects down the road?

Bkanter72
Bkanter72 Member Posts: 39
in Head and Neck Cancer #1
Hey all,

I have scc hpv positive in my left tonsil. My tonsils and all the lymph nodes on my right side have been removed. The doc believes he got all of the C, but I needed to undergo 8 weeks of rads and 3 cisplatin treatments. I am beginning the seventh week of rads and getting my final chemo as I write this. I am hoping for some relief this week as the rad field cuts in half to my rt side only.

Have any of you out there had similar diagnosis and survive without reoccurrence long term? Can anyone provide some hope as to the potential long term side effects that I can or shouldn't worry about year down the road?

Brian

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    It's only your seventh week, wrong focus
    right now I want you to let go of the fear and just fight and get through the next six months. You will learn much about long term side effects in that time. It's complicated and much of it depends on you getting through the next few months. Use your energy to survive this time as this cancer generally does not advance so fast that you won't see it comming. Recuperation is the focal point right now!!!!!!!!! later we can discuss radiation and tooth problems and neck and mobility issues. Focus on nutrition and survival. Protect youself from infection. Get proper nutrition!!!!!!!!!!!!!!!!!!!!!!
  • Greend
    Greend Member Posts: 678
    #3
    To answer your question
    Yes I survived the same treatment and 15 years later still around. Take care of yourself for now that's what is most important.

    Hang in there!
  • Bkanter72
    Bkanter72 Member Posts: 39
    #4
    ratface said:

    It's only your seventh week, wrong focus
    right now I want you to let go of the fear and just fight and get through the next six months. You will learn much about long term side effects in that time. It's complicated and much of it depends on you getting through the next few months. Use your energy to survive this time as this cancer generally does not advance so fast that you won't see it comming. Recuperation is the focal point right now!!!!!!!!! later we can discuss radiation and tooth problems and neck and mobility issues. Focus on nutrition and survival. Protect youself from infection. Get proper nutrition!!!!!!!!!!!!!!!!!!!!!!

    Rat
    I appreciate your words of advice but I was sincerely inquiring a to the real long term side effects of this ride. I am on the seventh week and preparing for the rest of my life. I've worked out nearly every day since the beginning, have no peg, and continue to drink good calories daily. I fighting each day and have no doubt I'll get through it. My thought is that if this doesnt kill me I will be stronger when I come out the other end. I simply want to take my steps towards the future with my eyes open.

    B
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Longevity
    Again, everyone is different, and especially concerning long term effects. I'm two years post treatment and at this point have minimal side effects.

    Yes, I have a few, probably worse at this point is my thyroid is going south. The others are maybe 5 - 10% taste and saliva reduction, various aches and pains that come and go.

    I just feel it's part of the price you pay...but much better than the alternative.

    I don't think there's a lot that you can prepare yourself that isn't common sense to living healthy anyways.

    Like mentioned, investigate, but don't get wrapped around the wheel at this point in treatment. You have to make it through where you are now before you become a long term survivor...

    Best,
    John
  • Scambuster
    Scambuster Member Posts: 973
    #6
    Bkanter72 said:

    Rat
    I appreciate your words of advice but I was sincerely inquiring a to the real long term side effects of this ride. I am on the seventh week and preparing for the rest of my life. I've worked out nearly every day since the beginning, have no peg, and continue to drink good calories daily. I fighting each day and have no doubt I'll get through it. My thought is that if this doesnt kill me I will be stronger when I come out the other end. I simply want to take my steps towards the future with my eyes open.

    B

    2 year out and going great
    BK72,

    I had a very similar Dx to you Aug 2009. I had a rough time through treatment, PEG and hospitalized for 4+ weeks and again after. you have worked out through yours !!! I was in a wheelchair. You must a tough cookie.

    It took me a long while to recover - 6-8 months but I began to focus very heavily on the diet and nutrition side. I am mostly began and rarely eat processed food, fee sugars etc and I must say I am far better off for it. I think it is important to take that side of it very seriously and follow the Anti-cancer diet protocols. There are calories and there are calories. At the moment though, you may need whatever you can get in, but there are somethings you can avoid (like milk protein) but still get enough. I also do load of supplements for immune boosting and other stuff. I have more info on my Expressions page.

    My only gripe now is the dreaded dry mouth and it's knock on effects. Some taste and texture issues remain. Most other things are now good and am very fit and now maintain my perfect BMI. I lost 50 lbs and only regained 20, but that is good now.

    The next phase post treatment, may present a challenge but hopefully you will blitz it. You will definitely be stronger.

    Regds

    Scam
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    Week 7
    Week 7 and 8 can be and is for many who have done the treatment the worst of all the previous. Those earlier are not wrong, it is most important to take care of the now. As a reminder the following 2-3 months post treatment the radiation continues and the present side effects can bring anyone down in a hurry.

    That being said long long long term side effects are so unknown. I am 15 plus years now. I did not have any show of cancer until 3 years ago and that was a small spot on my tongue they cut out. Plus I had necrosis of the the pharynx 3 years ago. I lost one of my vocal cords many years ago. I cough alot because of the coal cords and have a hard time talking for any length of time. Plus dry mouth for 15 years plus and now getting worse. I have no taste and never will. My teeth are rotting out and nothing anyone can do, the risk is more necrosis on the jaw bone and that would be ugly as they would have to remove jaw and replace. My ears ring. I have three different ENT's in three City's and all agree, they the medial field just has no history of what the short term or long term side effects will be.

    The real deal here is no one out there is the same on side effects like I have. Everyone hear is different as you find over time. The big key for survivorship is living day by day, being grateful, thank full to God and enjoy the time. Deal with any set backs as they come and when they come, there will be plenty of them and that is why this site is so great.

    Please do not worry about years down the road, I don't as I love the sunrise every day. Life is wonderful just different degree's of wonderful. I know of no one that does not have short term side effects. I know of only a few of us long timers of survivorship and all have some kind of nasty side effects.

    I could give you more but i don't think you need more or need more detailed descriptions. I personally belief you are one of the few that is doing as well as you are right now at week 7. We praise God your not were some of us were.

    Take care.
    John

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