Another newbie joining the club.

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frokker68
frokker68 Member Posts: 49 Member
edited May 2017 in Head and Neck Cancer #1

Hi everyone,

Keith here.  48 1/2  year old male.  Not a club I wanted to join, but here I am.  Back in early April I was DX with  base of tougue stage 4 SCC,  HPV+ T3N2CM0.   I have been lurking here reading a lot and learning a lot.  The last few weeks have been a mental and physical rollercoaster.  CT scans, PET scan, MRI, Dental work, hearing test, SIM and mask for radiation, Oncology, Surgery to place feeding tube, Nutrition, etc...  One right after the other.  

Well, this coming Tuesday, May 9th I go in to have the chemo port placed and I start Chemo a couple hours after Chemo port surgery.  Then the next day I start 7 weeks of radiation.  Chemo is Cisplatin once a week for 7 weeks and 35 radiation sessions.  

I am over the initial shock of the big C diagnosis and I am ready to get this treatment started!   I think reading here about what you all went though has really prepared me.  I biggest fear/concern is the side effects of the radaition.  Dry sore mouth, not being able to eat or swallow.  I hope I do not get that bad and seen where some of you didn't.  I know everyone responds different.  So I am hoping for the best there.

My plan is to post here as I go through the treatment in the way most of you have and maybe I can help others that come after me.  

Guess that's it for now.   I am open for any tips, tricks and suggestions for my treatment.

Keith

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    welcome

    Hi Keith,

    Welcome to the H&N forum, sorry that you are  here, but the realization that it is a roller coaster puts you ahead.  I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux) and I have crossed the 5 year mark on my post recovery.  The ride is just like you read; hopefully your body will be an accepting one of treatments and your side effects will be few.

    May 9th sounds like a good starting date and the first week of summer sounds like a good time to be finished.

    Drink lots of water and swallow often.  Enjoy eating and expect your taste to change (it is weird).  Always be proactive, don’t tough it out, take your meds, keep your team informed and be prepared (have everything).

    Don’t worry about the dry mouth and no taste, awful taste. Just dedicate yourself to getting through, don’t get mad or depressed, just get through.

    We all have ideas to help.  I for one loved magic mouth wash and found my Oregon vintage to be extremely helpful for throat, mouth and tongue discomfort.

    Good luck,

    Matt

  • frokker68
    frokker68 Member Posts: 49 Member
    #3
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    CivilMatt said:

    welcome

    Hi Keith,

    Welcome to the H&N forum, sorry that you are  here, but the realization that it is a roller coaster puts you ahead.  I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux) and I have crossed the 5 year mark on my post recovery.  The ride is just like you read; hopefully your body will be an accepting one of treatments and your side effects will be few.

    May 9th sounds like a good starting date and the first week of summer sounds like a good time to be finished.

    Drink lots of water and swallow often.  Enjoy eating and expect your taste to change (it is weird).  Always be proactive, don’t tough it out, take your meds, keep your team informed and be prepared (have everything).

    Don’t worry about the dry mouth and no taste, awful taste. Just dedicate yourself to getting through, don’t get mad or depressed, just get through.

    We all have ideas to help.  I for one loved magic mouth wash and found my Oregon vintage to be extremely helpful for throat, mouth and tongue discomfort.

    Good luck,

    Matt

    I am going into this with a

    I am going into this with a very positive attitude.  I will get through this.  I am being proactive and I have a very good care team.  They've all been great so far. 

    That and what I've read here has been a tremendous help in preparing me.

  • Chicklette
    Chicklette Member Posts: 225
    #4
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    Similar

    Your treatment plan sounds very similar to my husband's, except he is getting 36 rads.  If all goes as planned, you will finish on or about the same day.  Good Luck!  I don't have any advice as we are just starting, too, but as we progress, I'll let you and others know what works for us.  Good Luck!

  • Andy13460
    Andy13460 Member Posts: 115
    #5
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    Hi compare notes over the next 7 weeks

    Hi Keith,

    Sorry to hear of your diagnosis, I'm starting the same day as you 9th May (scrub that phone call today they messed up I start on the 12th now)HPV+ T2:N1:M0 SCC base of tongue way back.

    No Feeding tubes in Ireland to start,  3 lots of Cisplatin on Days 1, 22 & 43 (inpatient with overnight stay for this)

    IMRT radiation 35 treatments Monday to Friday for 7 weeks.

    I'm lucky that the Hospital I'm using has a 30-room lodge in the grounds, I will be staying there for the full 7 weeks so no travel problems.

    All the best with everything,

    Andy

  • tagussmc
    tagussmc Member Posts: 2
    #6
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    Similar... but 5 years later

    I'm replying as mine was very similar - base of tongue, stage 4, I don't recall all those cool numbers any more.  ;)  that's a good thing.  I'm 5 years down the road, healthy, happy and fully recovered - and very grateful.  Very few minor side effects remain and they're nothing in the scheme of things.  You have a tough fight coming up - fight hard, be sweet to your caregivers, pray lots, and stay postivite.  On the far side of all of this, you'll have a whole new appreciation for most things in your life!

  • frokker68
    frokker68 Member Posts: 49 Member
    #7
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    Today I had my chemo port put

    Today I had my chemo port put in and then had my first round of chemo.   Seemed to go really well.  The nurses were great.  I am 6 hours after chemo and feel normal.  Well, sore from the minor surgery this morning but speaking chemo, so far so good.   Tomorrow begins 35 radiation sessions.   

    Thanks to everyone that has replied,, it helps me reading your stories.   

    Keith

  • mapdan
    mapdan Member Posts: 33 Member
    #8
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    Good Luck to you.

    I hope it all goes well Keith. I had my port remeved last week. Finished Chemo in December. Finished 35 rad treatements on Oct 17th 2016. So hang in there buddy. Will not be fun and games once in awhile but you will get through this as we have. I feel good now and wont get into lasting effects cause we are all different.  We are all behind you. I had a friend that was 4 weeks ahead of me at treatment and I talked and listened to him to learn what was ahead and that helped tremendously. 

  • Chicklette
    Chicklette Member Posts: 225
    edited May 2017 #9
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    frokker68 said:

    Today I had my chemo port put

    Today I had my chemo port put in and then had my first round of chemo.   Seemed to go really well.  The nurses were great.  I am 6 hours after chemo and feel normal.  Well, sore from the minor surgery this morning but speaking chemo, so far so good.   Tomorrow begins 35 radiation sessions.   

    Thanks to everyone that has replied,, it helps me reading your stories.   

    Keith

    No port for hubby

    I guess different hospitals have different protocols.  My husband has neither a port nor a feeding tube.  I guess they only do it if it becomes necessary.  A friend of mine has lung cancer and he has a chemo port.  It was funny when we got together recently and his wife excitedly said "Did you show them your port?!?"  It's only something a cancer patient / caregiver can fully appreciate. :). Best of luck going forward.

  • frokker68
    frokker68 Member Posts: 49 Member
    edited May 2017 #10
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    1st radiation treatment went

    1st radiation treatment went well.  I was not claustrophobic in the mask.  1 down, 34 to go.

  • Chicklette
    Chicklette Member Posts: 225
    #11
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    frokker68 said:

    1st radiation treatment went

    1st radiation treatment went well.  I was not claustrophobic in the mask.  1 down, 34 to go.

    Yay!

    The countdown begins!

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #12
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    7

    7 weeks will fly right by. I had my Rad Techs crank up the tunes while I was strapped down. I knew in about 4-5 songs it would all be over with and plus I did have to listen to the machine clicking for 20 minutes. Hydrate and pound the calories while you can. Good Luck with the treatment. I had 35/7.

  • frokker68
    frokker68 Member Posts: 49 Member
    #13
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    Once again, thanks everyone

    Once again, thanks everyone for the replies.  Well, 1st week is in the books.  I've had 1 chemo and 3 rad's.   I do feel some fatigue, and about 3 days after chemo I didn't feel like eating.  And today my throat feels a little tight and sore.   Didn't think that would happen so soon.  Tomorrow is chemo day again.  So far I am doing pretty good.  Keeping a positive attitude and pushing through.   

  • StJin
    StJin Member Posts: 4
    #14
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    Don't forget the pain meds

    Hi Keith,

    I am 11 weeks post therapy (35 days rads + 6 weekly sessions Cisplatin). Diagnosed HPV+ T4N0M0 in the larynx (a minority).

    What I noticed: My energy level stayed pretty even up until 40Gy's (about the 20 day mark at 2Gy's/day). Right after that point I noticed my energy started to decline and other various side effects really started to kick in. Weeks 1-2 post therapy were The Worst.

    Biggest piece of advice: My doctors were behind on pain meds and by the time I complained and got the meds I no longer needed them. Do yourself a favor and make sure you get adequate pain meds - IN ADVANCE  Laughing This especially applies to the post therapy weeks!!!

     

     

  • frokker68
    frokker68 Member Posts: 49 Member
    #15
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    StJin said:

    Don't forget the pain meds

    Hi Keith,

    I am 11 weeks post therapy (35 days rads + 6 weekly sessions Cisplatin). Diagnosed HPV+ T4N0M0 in the larynx (a minority).

    What I noticed: My energy level stayed pretty even up until 40Gy's (about the 20 day mark at 2Gy's/day). Right after that point I noticed my energy started to decline and other various side effects really started to kick in. Weeks 1-2 post therapy were The Worst.

    Biggest piece of advice: My doctors were behind on pain meds and by the time I complained and got the meds I no longer needed them. Do yourself a favor and make sure you get adequate pain meds - IN ADVANCE  Laughing This especially applies to the post therapy weeks!!!

     

     

    Thanks for the heads up.  Ill

    Thanks for the heads up.  Ill be sure to bring that up this week.   

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