Introduction (Stage IVA Tonsil Cancer)

Fritz
Fritz Member Posts: 106
edited June 2016 in Head and Neck Cancer #1

Hello. First off let me say this site and the Head & Neck discussion board is a wonderful tool to use for a journey through this disease. I appreciate all the users that I have seen on this board and their helpful experiences.

I am a 54 year old male and I was diagnosed with Tonsil Cancer on March 1, 2016; and was confirmed with an FNA biopsy of the lymph node on March 11. After PET and CT scans I had surgery on April 20 which consisted of removal of the cancerous left tonsil, removal of parts of the tongue base and soft palate due to spread and removal of the right tonsil as a precaution.  Also at that time I had a modified radical neck dissection with the removal of the cancerous node and 23 other non-cancerous lymph nodes.  Needless to say, these combine surgeries left my throat in a condition full of sores due to the cauterizations of the areas removed.

6 weeks to the day (June 1), I began my first of 6 Cisplatin infusions and the first of 33 radiation treatments.  I finished my 11th radiation today and will have my 3rd Cisplatin infusion tomorrow.  I do not have a PEG and at at weight of 175 do not have much weight to spare with this fight.

So far so good on the treatments.  Throat is definitely sore with mucous; however, I was used to that as that was the case with the way my throat ended up after surgery.  All of those sores were just about healed as the new treatments started.  Cisplatin treatments tend to give me a bloated feeling for several days afterward which makes the desire to eat tougher; however, I have continued to push around 3,000 calories a day to this point.  Still able to swallow well at this point with minimal mouth issues.  I try to eat or drink some type of supplement every 2 hours to stay on track.  Drinking water and rinsing with salt/soda water after each episode of eating to keep mouth clean.  Also, swish and drink a mixture of Aloe Vera Juice and L-glutamine 3 times a day.

I know it is early at this point and trying times are on their way, but wanted to share this as the posts I have seen have been helpful to me and I want to share anything I am doing that could help someone else.

Again, thanks to all for the helpful posts.

Freddie

Comments

  • Fritz
    Fritz Member Posts: 106
    #2
    Thanks, Matt.

    Thanks, Matt.

    Not sure you want any of my blood .... tainted with Cisplatin at the moment.  I too hope my current plan serves to be winner for the next 4 + weeks.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Welcome Freddie!!

    You've joined a great place to be while going through treatment.  Sounds like you've got things under control, too....(3000 calories a day is mighty impressive).  We're always here if something comes up.....or you just want to vent, or talk about treatment. 

    p

  • Fritz
    Fritz Member Posts: 106
    #4
    phrannie51 said:

    Welcome Freddie!!

    You've joined a great place to be while going through treatment.  Sounds like you've got things under control, too....(3000 calories a day is mighty impressive).  We're always here if something comes up.....or you just want to vent, or talk about treatment. 

    p

    Thanks. 

    Thanks. 

    I know I have a long way still to go and there will be trying times.  I hope some of what I am doing will help to minimize the troubles.  A lot of my plan so far are "pointers" picked up from the many posts on this site.  So thanks to all of you for sharing your experiences.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #5
    A Good Place

    Welcome. You have found a good place, make that a great place, for advice and support. I like your attitude that you are also here to help others! That's how we all get through this journey.  

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #6
    Welcome to the Club

    Hi Fritz, and welcome to the forum.  I too found this site to be a great benefit concerning members and information.  For some odd reason the pain I had when they took out part of the base of my tongue was very bad.  No pain meds did anything for me so I just sat and suffered until it healed.  Like you, I dealt with the mucus and a radical right neck dissection.  My neck is still numb today but that's not a complaint.  It took over 2 years for the pain shooting down my arm to go away.  Just a touchy nerve was all that was.  

    I wish you a speedy recovery with no c left inside.  Modern medicine has come a long way.  Most of us here wouldn't be here today w/o it.  For that I am grateful.

    Tom

  • Fritz
    Fritz Member Posts: 106
    #7
    tommyodavey said:

    Welcome to the Club

    Hi Fritz, and welcome to the forum.  I too found this site to be a great benefit concerning members and information.  For some odd reason the pain I had when they took out part of the base of my tongue was very bad.  No pain meds did anything for me so I just sat and suffered until it healed.  Like you, I dealt with the mucus and a radical right neck dissection.  My neck is still numb today but that's not a complaint.  It took over 2 years for the pain shooting down my arm to go away.  Just a touchy nerve was all that was.  

    I wish you a speedy recovery with no c left inside.  Modern medicine has come a long way.  Most of us here wouldn't be here today w/o it.  For that I am grateful.

    Tom

    Thanks to both of you for the

    Thanks to both of you for the welcome.

    Tom, my tongue base has not been real painful other than the nuissance of feeling a little restricted when sticking tongue out or turning my head to the right. I too have had numbness on the left side of my face since surgery.  ENT doc says it will eventually come back.  I was lucky in that he salvaged the nerve that controls both my shoulder so I am still able to lift my arm above my head. He also says he saved the nerver that controls the feeling in the lower ear lobe which seemed to be unique for him as most patients never regain that.

    Again, thanks for the warm welcome aboard.

  • SusanUES
    SusanUES Member Posts: 125
    #8
    Welcome, Fritz!

    You are disciplined and doing great...I'm sure you'll have an excellent recovery and many fine years ahead.  And this will all become just a bad memory. That was a good bit of luck re your accessory nerve save.  Mine was severed during surgery and it's taken a full year to regain full mobility but all is well now.  Keep on keepin' on with your journey and your 3,000 calorie intake...one day at a time!

  • Fritz
    Fritz Member Posts: 106
    #9
    SusanUES said:

    Welcome, Fritz!

    You are disciplined and doing great...I'm sure you'll have an excellent recovery and many fine years ahead.  And this will all become just a bad memory. That was a good bit of luck re your accessory nerve save.  Mine was severed during surgery and it's taken a full year to regain full mobility but all is well now.  Keep on keepin' on with your journey and your 3,000 calorie intake...one day at a time!

    Thanks Susan. That has been

    Thanks Susan. That has been the motto of my wife and me. Cannot be redealt the cards your were dealt.  Just deal with it the best you can and look forward to a bright future. As you say, one day at a time.

    Freddie

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited June 2016 #10
    Hello Freddie

    Hello and Welcome.

    You are so lucky you found this forum early in your treatment.  You really do get allot of information and tips.  Wish I would have found it sooner. It has been so helpful with my recovery.  You will find the people here very warm and supportive.  I hope your treatment stays uneventful and keep up the good eating habits.  Lisa

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    welcome

     

    Freddie, 

    Welcome to the H&N forum, early reports from you are fantastic, how about giving me some blood.

    Keep up the current plan, it is a winner

    Matt

     

  • Fritz
    Fritz Member Posts: 106
    #12
    Thanks Lisa

    Thanks Lisa.  Yes, this has been a good site to learn from.  I have used many of the tips here to help me plan for my treatment/recovery.  I appreciate all that you guys have contributed and hope I can help others along the way as well.

    Freddie

  • RottiesMom
    RottiesMom Member Posts: 167
    edited June 2016 #13
    A little ahead of me

    You are a few weeks ahead of me.  I also have Stage IVA, but it only metastized to 2 lymph nodes, so surgery is not planned.   

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