Chemo for Base of Tongue

NW DINO
NW DINO Member Posts: 31
edited March 2014 in Head and Neck Cancer #1
I am a 58 year old male that was recently dx with SCC - Base of Tongue as primary source. Noticed a lump on right side of neck in January of this year. My primary care doctor ordered a CT scan after my office visit. The results were unconclusive & I was told lump was benign. Dr said it was most likely a sinus infection & prescribed a nasal spray. Lump was still there in September when my dermatologist urged me to get a 2nd opinion asap from an ENT specialist. ENT did a biopsy using 3 needle samples with suspicious results. The ENT removed lump & biopsy confirmed it was SCC. Unknown primary initially when I had a PET scan which showed primary to be base of tongue. Feel very fortunate they found primary. Just finished 1st week of therapy - chemo last Monday & 4 radiation treatments. I have always had some hearing loss with ringing in the ears. The ringing in my ears was greatly intensified after only one chemo treatment with Cispatlin. Wish my dr had explained side effects of hearing loss before I started chemo - as I stated I had prior hearing loss. I have researched the side effects of Cispatlin & wish I used an alternative drug initially because of the potential hearing loss. I am meeting with my chemo doc Monday am to discuss. I am a bit skeptical about treatments after being misdiagnosed in January. Staying positive though!! Have decided to get the PEG feeding tube on Tuesday - after my 2nd chemo treatment. Initially I was against having the PEG but decided it was the best option after reading everyone's replies about getting one early. Any thoughts on an alternative chemo therapy?

Comments

  • DJG1
    DJG1 Member Posts: 121
    #2
    Welcome
    Hello NWDino,
    Wanted to welcome you and sorry you find yourself here, but you are at the right place for information. I can not answer your questions, I am currently on radiation treatment # 27of 33, for right tonsil w/lymp node activity. Many here are BOT and have experience with chemo. (I elected not to have the chemo). Hang in there, it will be rough, but doable. Many will come to answer you questions and share their experience with chemo. Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Welcome Dino

    Sorry to hear you have this nasty stuff but glad you found our little family here on CSN for some very good advice.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #4
    HEARING LOSS
    I was diagnosed with R Tonsill and METS to Nodes in R Neck. I had Surgery, 30 Bilateral Rads to Neck and 3 rounds of Cisplatin. I have experienced the ringing but cannot say I have had hearing loss. I did not have a baseline hearing test, so I do not know.

    DOES ANYONE KNOW IF THE RINGING IS PERMANENT OR MAY GO AWAY??

    BEST OF LUCK WITH YOUR TREATMENTS.

    BEST!!

    MIKE
  • NW DINO
    NW DINO Member Posts: 31
    #5
    luv4lacrosse said:

    HEARING LOSS
    I was diagnosed with R Tonsill and METS to Nodes in R Neck. I had Surgery, 30 Bilateral Rads to Neck and 3 rounds of Cisplatin. I have experienced the ringing but cannot say I have had hearing loss. I did not have a baseline hearing test, so I do not know.

    DOES ANYONE KNOW IF THE RINGING IS PERMANENT OR MAY GO AWAY??

    BEST OF LUCK WITH YOUR TREATMENTS.

    BEST!!

    MIKE

    HEARING LOSS
    Thanks Mike! I have a history of hearing loss. Had some ringing in my ears prior to my 1st Cisplatin chemo treatment last Monday - but was manageable & I never relly noticed it anymore. By Wednesday morning after chemo the ringing increased significantly. Did you have the PEG feeding tube?
  • NW DINO
    NW DINO Member Posts: 31
    #6
    DJG1 said:

    Welcome
    Hello NWDino,
    Wanted to welcome you and sorry you find yourself here, but you are at the right place for information. I can not answer your questions, I am currently on radiation treatment # 27of 33, for right tonsil w/lymp node activity. Many here are BOT and have experience with chemo. (I elected not to have the chemo). Hang in there, it will be rough, but doable. Many will come to answer you questions and share their experience with chemo. Debbie

    Thanks for the welcome
    Thanks for the welcome Debbie. Good luck with your treatments also!!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #7
    Alternative chemotherapy
    Hi, NW DINO,

    Your story sounds like mine; Metastisized SCC found when my ENT took out a 3 cm lymph node that everyone else had told me was benign. It took a PET-CT to find the primary at the base of my tongue. I had Cisplatin and 38 radiation treatments, as lymph nodes on both sides of my neck lit up. Ask your doctor about alternatives to Cisplatin; I know there are a few. Some folks here were treated with Carboplatin, or Carboplatin plus some other stuff (5-FU, Taxotere, etc.). Good luck with the rest of your treatments.

    Deb
  • NW DINO
    NW DINO Member Posts: 31
    #8
    D Lewis said:

    Alternative chemotherapy
    Hi, NW DINO,

    Your story sounds like mine; Metastisized SCC found when my ENT took out a 3 cm lymph node that everyone else had told me was benign. It took a PET-CT to find the primary at the base of my tongue. I had Cisplatin and 38 radiation treatments, as lymph nodes on both sides of my neck lit up. Ask your doctor about alternatives to Cisplatin; I know there are a few. Some folks here were treated with Carboplatin, or Carboplatin plus some other stuff (5-FU, Taxotere, etc.). Good luck with the rest of your treatments.

    Deb

    Alternative chemotherapy
    Hello Deb! How long ago was your treatment? Did you need the PEG feeding tube? I am meeting with my doctor tomorrow morning about an alternative to Cisplatin. How many radiation treatments until it was hard to swallow? I have had only four but I still have a huge appetite. Sorry for all the questions & thanks for the encouragement!
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #9
    Welcome
    Hi Dino. I also was diagnosed with SCC base of tongue and went thru 35 rads and 3 cistplatin injections. I didn't experience any problem with ringing in my ears, so can't help you there. See what your Dr has to say on Monday and let us know. Good luck with your treatment and stay strong. Cheers

    Jimbo
  • Pam M
    Pam M Member Posts: 2,196
    #10
    How did Doc Visit go?
    NW Dino,
    Welcome to the site - sorry you have a reason to be here. I was diagnosed with base of tongue cancer with lymph nodes affected a year ago. I did Cisplatin, taxotere and 5-FU for induction chemo (since my cancer was Stage IV, and docs weren't recommending surgery, we "got out the big guns"). For radiation, I did carboplatin,a cisplatin cousin with fewer side effects. Lots of folks are given carboplatin; some do Erbitux instead of Cisplatin.

    For many, the ringing in the ears is temporary. I finished treatment in March (carboplatin and radiation - I finished Cisplatin in January), and I can't recall the last time I had ringing (it was mild for me during treatment). I go back and forth on whether my hearing has been affected (I think I have some mild hearing loss, but am sure it can be attributed to years of loud music and TV at home (father who refuses to consider hearing aids, and my own music "crank it up and rip off the knob" attitude).

    Hope your enhanced ear issues are temporary. Glad you've got the right attitude. Keep us posted.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #11
    NW DINO said:

    HEARING LOSS
    Thanks Mike! I have a history of hearing loss. Had some ringing in my ears prior to my 1st Cisplatin chemo treatment last Monday - but was manageable & I never relly noticed it anymore. By Wednesday morning after chemo the ringing increased significantly. Did you have the PEG feeding tube?

    YES ON PEG
    I did end up with the PEG about half way through my Radiation and Chemo. The horrible side effects literally hit me all at once. When I got it, about one month ago I had already lost 40 lbs. I am down now about 60, but holding my own. I wish now I would have gotten it much sooner.

    BEST

    Mike

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