Going down that road again

stevenpepe
stevenpepe Member Posts: 234
in Head and Neck Cancer #1

Just got my stitches out after a second neck dissection nearly 2 weeks ago. Cancer was contained to the one lymph node that lit up the PET scan. Doc says radiation, this time with chemo, may be recommended by the board.

I know how tough rads are. But how much more difficult are they with chemo? I will most likely have proton rads, which takes me twice as far as the first go around, so I'm more concerned about getting there and back. Not to mention the fallout of side effects.

 

Anyone been down this road?

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    again

    Steven,

    I have not been down the road twice, but have known a number of H&N members who have.  The side effects should be similar to what you have experienced.  I have not used the platinum chemo drugs, but know they pack their own special punch.  Remember, many have on here have taken the same treatments you will and if they  are listening can offer advice.

    I am glad the additional discovery has been limited and treatment will get it.

    Good luck,

    Matt

  • Sandraw
    Sandraw Member Posts: 40
    #3
    Hi

    Sorry you're having to go through this again. I had 1x week cisplatin during my 6.5 weeks of radiation. It was pretty exhausting the last 2 weeks, and I got a sore mouth and throat. But I had 2 chemo treatments after,  cisplatin with 5fu, I wore a fanny pack for 96 hours, now that was miserable, bad sores in throat, mouth, nausea vomiting, blood counts dropped, that was the worse part for me, I was suppose to have 3 rounds I could only tolerate 2. I still have neck lymphedema, problems swallowing, talking, hand and feet neuropathy and at age 51 I have treatment related cataracts, have surgery on 1 Monday. So if it's not 5fu chemo, for me it wasnt too bad.  I wish you the best, keep us updated. BIG (((HUGS)))

  • MrsBD
    MrsBD Member Posts: 617 Member
    edited October 2016 #4
    Proton

    I'm sorry your cancer wasn't knocked out in the first round. From my research, proton therapy is so focused that there may be no side effects. I had Erbitux,  so have no experience with the platinum based drugs, but would just encourage you to read past posts to see what others used to prevent issues. I'm praying for a successful and less difficult treatment for you.

  • RottiesMom
    RottiesMom Member Posts: 167
    #5
    I Am Sorry

    I have not gone through this twice.  I had 7 weeks radiation and 3 cycles cisplatin 3 weeks apart.  In addition to all the radiation side effects, the chemo made me very nauseous and very tired.  I haven't had any lasting side effects from the cisplatin yet and my last treatment was Aug 2. I also received a shot of Neulasta 24 hours after each Chemo treatment to keep my white blood cells up. I will keep you in my prayers.

    Joanne

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #6
    Chemo & Rads,,ctct

    What I have reasearched, Chemo with Rads seems to work better.  Sucks but.....if it works, hey.  I did not have to have surgery tho I had Stage 3.  They used Intense, directed Rads, and a less Chemo drugs.  It was pure hell but.... I have defied ALL odds.  I am 9 months out of diagnosis, 7 months post treatment.  They have, Scoped Me now 10 times, 4 Cts with dye, 2 full PET Scans, so many blood tests I call them Vampires, 24 hr Urine tests. I have really not wanted to post since I do not want to sound boastfull. I referred to this Forum for Info and suggestions and tried all.  Found what worked for me to be the best I can be. I have offered up suggestions, they work but up to all of you if you want to try it.  My Chemo Dr has made me a Test Rat since they never seen someone do what I am doing.  When diagnosised, I I not cry, I realized that I can not change what IS.  I went from so very unhealthy, Negative, depressed individual to a Upper Positve, NO Negs wanted in my life.  I have Cancer, HPV positive.  Can come back any day.  Oh do I dwell, No, can't change the facts.  But, I did find a fantastic  Dentist who lasers My Tongue so nerve pain is not a issue.  Still healing in lower throat but takes time. I eat just about everything except anything with sugar to intense. Yuck!!  My taste buds are outstanding, starting to make my own saliva, swallow with NO problems.  Healthiest Ive ever been.  I ate pure crap, smoked, drank, very little excessive, to discipline, happy, and Positive despite all the stress in my life.  Been diagnosed with PDSD.  One Day...it works.  Head up, do what is needed, listen to ALL suggestions and try them, stay Positive, and remember.....can't change what is unchangeable.  Forge On, do your best.  You can do this, it can be done.  Any questions you are so free to contact me.  I just turned 59.  Remember, you ate hamburgers when most could not even drink water.  Yes, I had a feeding tube put in mid-way.  You can do it.  Be the Warrior you are......kick ****!  Big hugs, Lisa

  • Kapital
    Kapital Member Posts: 52 Member
    #7
    chemo and radiation

    My husband went through treatment once, he had 3 rounds of Carboplatin with his radiatio. I think it helped that his doctor gave him Zofran to take with his chemo treatments. He took a dose before his chemo and then stayed on it for 3 days after, in order to prevent nausea.  He also was given IV Decadron just before each treament. He went in for IV hydration towards the end of the treatments, a couple of times a week, as it was difficult to drink enough fluids. Dehydration makes you feel worse. Good Luck

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #8
    Hello Steve

    this is my mom's history:

    11/15/10-surgery, cancer of left tonsil removed and another tumor on right side of hard palate, left neck dissection
    2/17/11-finished radiation, no chemotherapy.
    10/6/11-surgery to remove cancer from oral part of tongue on the left side.
    3/1/12-right neck dissection with 1 lymph node positive,another tumor in back of the tongue removed.

    she only had 1 radiation and no chemo. It will be 5 years on 3/1/17-NED.

    you will be ok, just stay positive.

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