Three years out from treatment.

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

Been a long while since I've posted here.  Lots of new names here.  Sorry for what you all are going through our have gone through. 

May is 3 years since my treatment.  S4 BOT. Left side. 1 node each side of neck.   7 weekly  cisplatin, 35 daily rads. No surgery.

Other than a laundry list of side effects, I'm well.  

Good luck with your treatment and recovery everyone!  

 

Keith 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2
    Thank you for the update

    Keith,

    Thank you for stopping by and updating us. I am sorry to read about the laundry list of side effects, I hope they are manageable and not causing any real discomfort. 

    Take care, stay healthy and safe. My Best to You and Everyone Here

  • PipLily
    PipLily Member Posts: 130 Member
    edited May 2020 #3
    Hello!

    Just wanted to say thanks for posting! My husband is only a week and a half into treatment, for BOT also (T1N1M0); and it’s so encouraging to hear from others who have made it through treatment! Continued good luck to you!

    Elizabeth

  • Dean54
    Dean54 Member Posts: 160 Member
    #4
    I'm getting close to my 3

    I'm getting close to my 3 year start of this terrible journey also and have at least half my saliva and taste back but also have the dreaded side effects like tinnitus. Also, the side of my neck where the cancerous lymph nodes are/were is getting larger so now I have to get a CT scan to see what's up with that. Hope it doesn't involve a neck dissection that I figured was coming sooner or later..UGH. Can't let your gaurd down for a minute can we?

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #5
    Hang in There

    I congratulate you on being close to 3 years out. the further out the better. As you are dealing with the usual side effects don't think that the neck swelling is cancer again as it could be something else. It has always been said on here "It's not cancer till they say it's cancer" verified with proper testing and biopsies. Wishing you the best-Take Care-God Bless

  • Dean54
    Dean54 Member Posts: 160 Member
    edited June 2020 #6
    Thanks for the kind words and

    Thanks for the kind words and being positive as I'm far from it for some reason but you are right, it's not cancer yet.

  • BZBZ
    BZBZ Member Posts: 1
    #7
    PipLily said:

    Hello!

    Just wanted to say thanks for posting! My husband is only a week and a half into treatment, for BOT also (T1N1M0); and it’s so encouraging to hear from others who have made it through treatment! Continued good luck to you!

    Elizabeth

    Hello Pip

    I'm new to this site and will be getting BOT using TORS on 07/06/20.  I'm also T1N1 and of course am wondering what to expect.  Is there a way I can view your posts or experience on this site?  Your consideration is appreciated and I hope your husband is doing well.

  • big G
    big G Member Posts: 177 Member
    #8
    Dean54 said:

    Thanks for the kind words and

    Thanks for the kind words and being positive as I'm far from it for some reason but you are right, it's not cancer yet.

    3 years

    Congrats on the 3 years. some side effects will always be reminders of the experience but we learn to live with them. Wishing you contiued success.

  • big G
    big G Member Posts: 177 Member
    edited June 2020 #9
    BZBZ said:

    Hello Pip

    I'm new to this site and will be getting BOT using TORS on 07/06/20.  I'm also T1N1 and of course am wondering what to expect.  Is there a way I can view your posts or experience on this site?  Your consideration is appreciated and I hope your husband is doing well.

    BZBZ

    I also had TORS, you can read my csn space if you like. Are you having neck dissection? Sounds like you are in the very early stage which is great and the TORS is very successful with early stage treatments. 

  • paintmatt
    paintmatt Member Posts: 17 Member
    edited June 2020 #10
    Starting treatment

    I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

     

  • PipLily
    PipLily Member Posts: 130 Member
    #11
    BZBZ said:

    Hello Pip

    I'm new to this site and will be getting BOT using TORS on 07/06/20.  I'm also T1N1 and of course am wondering what to expect.  Is there a way I can view your posts or experience on this site?  Your consideration is appreciated and I hope your husband is doing well.

    Good morning!

    Hello BZBZ.......First, I’m sorry you have to be here, but you have found an excellent resource in this forum. This was my sanity in the early days. I gained so much knowledge from everyone. I actually need to build the profile under my log in that would give details about my husband’s experience. Thank you for the reminder. Please do get on the Superthread at the top of the forum page. Lots of great information. 

    First, as many people told and encouraged me for my husband, YOU CAN DO THIS, AND YOU WILL GET THROUGH THIS!! It is difficult, but very very doable. Just take one day, sometimes on hour, at a time!! Are you also having a neck dissection with the TORS? My husband had  bilateral neck dissection- there was a small spot on the PET scan seen, on the opposite right side, that they wanted to assess. The right side was negative, thank goodness. He had 2 positive nodes on the left, so ended up needing radiation to the left side only. Also, pathology returned showing one of the nodes positive for extracapsular extension- thus, chemo was also required. He finished all treatment June 3, and is doing amazing!!! 

    Im guessing they are waiting to determine if more treatment is required until after your TORS? My husband ended up having the tonsillar bed resected, and base of tongue. The very small tumor was found BOT. Just being honest with you....the post op pain was the most difficult for him, even compared to the radiation treatment pain. I would encourage you to please please just keep up with all your pain meds. And make high calorie, high protein smoothies to get the most bang for your swallow buck! =) But also know, that just when he thought things would never feel normal, around day 14 post op, like clockwork almost, the pain plummeted, and he started to improve very much. It followed the path everyone told us would happen. 

    I wish you the very very best. It’s a difficult time, but you will get through it. Use this site. Let us know what to follow after TORS. Praying for strength for you!

    Elizabeth

  • PipLily
    PipLily Member Posts: 130 Member
    edited June 2020 #12
    paintmatt said:

    Starting treatment

    I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

     

    Wishing you the best on Monday!

    Use this site, and ask all kinds of questions! You can do this!!! 

    Elizabeth

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited June 2020 #13
    paintmatt said:

    Starting treatment

    I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

     

    Paintmatt Wishing You

    Great encouragement as you begin your treatment regimen. Stay strong as there will be hard parts to get through but as you've said you have the knowledge of people on here you have read about treating this terrible disease and they have come out on the other side and conquered it and you will too-Prayers Your Way-Take Care-God Bless-Russ

  • paintmatt
    paintmatt Member Posts: 17 Member
    edited July 2020 #14
    wbcgaruss said:

    Paintmatt Wishing You

    Great encouragement as you begin your treatment regimen. Stay strong as there will be hard parts to get through but as you've said you have the knowledge of people on here you have read about treating this terrible disease and they have come out on the other side and conquered it and you will too-Prayers Your Way-Take Care-God Bless-Russ

    Thank you Russ for the

    Thank you Russ for the encouraging word 

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #15
    paintmatt said:

    Starting treatment

    I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

     

    paint,

    You're in the right place. Let us know how you're doing, and you'll have a LOT of help and support come your way!

    I wish you the best possible outcome, from your treatment. It can be challenging at times, for sure - but the people on here are proof that you will make it through!

    mg

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