New To CSN

Chryssi
Chryssi Member Posts: 12
in Head and Neck Cancer #1
Hello CSN Members,

I'm so glad to have discovered this forum. Before I posted I decided to read some of the other posts and even responded to a couple. In October of 2011 I was diagnosed with squamous cell occult cancer. In November I underwent neck dissection at Mt. Sinai hospital and my surgeon found the cancer was from deep inside my left tonsil and it had spread to the base of my tongue and to a lymph node in my left side. Luckily he was able to remove it all. In mid February, after I had some time to heal from the surgery, I started radiation treatment which I completed on March 28th 2012. Although the surgery was extremely painful I found radiation to be a lot more brutal. It's so hard for me to deal with the issues that come along with xerostomia. Having to deal with dry mouth for the rest of my life and struggling to eat has been extremely depressing for me. My radiation oncologist told me that I will have 30% of my salivary glands left. I tried Amifostene but I could only handle 10 doses before I gave up. I'm on my third week after radiation and from reading a few of the other posts from other Head & Neck survivors has given me a little hope. Someone posted that progress needs to be measured by the week not by the day. Right now I'm working on gaining some weight back (I lost a total of 40 pounds cause I couldn't eat) and trying hard to keep my spirits high. I want to thank everyone here for all the wonderful advice and the positive posts.

Chryssi

Comments

  • ditto1
    ditto1 Member Posts: 660
    #2
    HI CHRYSSI
    You have come to the right place, Im new just getting started on my journey, so I will get out of the way because the folks here will be coming to greet you and share their knowledge, and make you part of a great family.... Just wanted to say welcome.
  • jtl
    jtl Member Posts: 456
    #3
    Welcome, it is a tough
    Welcome, it is a tough disease but keep your spirits up.
    John
  • kingcole42005
    kingcole42005 Member Posts: 178
    #4
    Hi Chryssi,
    It gets better. I heard alot about a new normal, and this is absolutely right. It's just takes time to adjust to this "new normal", lots of time. I still lose sense of taste once in awhile. It does come back, but it's different now. I'm just grateful I can taste at all!
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #5
    Still Cooking...
    Chryssi,

    I am glad to see you find this site, but sorry you have to be here at all.

    Yes, there are some issues we have to deal with after our surgeries and treatments. Currently, you are still dealing with the affects of the radiation. We actually "Cook" for another 4-8 weeks after the final treatment. Slowly, as you stated you are 3 weeks out, you will improve weekly and not daily.

    You will notice some taste eventually and that is a good indicator that you are moving out of the Cooking phase and into the recovery stage. Dry mouth will be an issue and if you get 30% saliva back, that is 30% more then what I have today. Fluids during each meal help me. We have to find products that may help during the day. I use the Biotene mouth spray on occassion during the day as well as chewing sugar-free gum with sips of water to keep my mouth moist.

    Others will be along with their suggestions

    My Best to You and Everyone Here
  • RinMinn
    RinMinn Member Posts: 18
    #6
    Hi Chryssi
    Welcome to one of the most helpful sites on the web.
    I ,like Ditto, am new to all of this so I too will step aside and let the wonderful folks who have more experience be able to guide and help you.
    Keep strong! You are not alone!
    Renee
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #7
    RinMinn said:

    Hi Chryssi
    Welcome to one of the most helpful sites on the web.
    I ,like Ditto, am new to all of this so I too will step aside and let the wonderful folks who have more experience be able to guide and help you.
    Keep strong! You are not alone!
    Renee

    It will get better!
    One day, one week, one month, then one year!!!! You will get better, everyone is different, be patient! I hope you are seeing a counselor for the depression??

    Charles
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    Wait a minute
    Who told you that you are already a done deal? Your recovery will go on literally for years. When I was radiated the first time, I was bone dry at the end, and for a long time afterward. Salivary function began slowly to recover, and after 4-5 years returned to almost normal. Normal enough I didn't need to carry water with me, or keep it by the bedside. Taste was ccompletely absent at the end of my treatment, but slowly recovered over a number of years as well. My original cancer was identical to yours.

    Now I have been through it twice more. The latest episode was in late 2011. I just finished my 34 rad sessions at the end of February. I use stoppers at night, but am already able to go without carrying water during the day. My taste is already quite good. I can't chew well yet, because I still have mouth sores and a tight jaw, but heck, I'm going to recover again.

    Keep the faith. Recovery isn't days, or even weeks. It's rather months or years.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Welcome Chryssi...
    First like Pat said...don't believe everything that you are being told. Everyone is different there isn't any absolute that I've seen so far.

    Stay positive and like you mentioned, it's a long slow process measured in weeks and months, not days and weeks.

    I had no taste or saliva for several months post treatment. Now at over three years out, I have 100% of my taste back and around 95% of my saliva.

    I was there...a sip of water with each bite of food...that I couldn't taste...every other sentence I spoke, a swig of water. I didn't go anywhere without my bottle of water.

    It took all of two years to regain nearly all of both, even a few months longer to regain sweet.

    So keep working at it, and you just might find yourself a lot better off than you are thinking now.

    Best,
    John
  • patricke
    patricke Member Posts: 570 Member
    #10
    Recovery is an ongoing process which takes a lot of time, so for me, patience is the watch word, along with positive attitude (two words); both of which I know are easier said than done. I also bailed on the Amifostene treatment after a number of sessions. I find tht recovery progress is incremental and cumulative, so that after awhile I would notice small improvements and later larger gains as a result of the acumulation of the samll ones. I have also found that focusing on what I can do feels a whole lot better than dwellilng on what I can't do (dwell, being the operative word). For dry mouth, "Mouth Kote" spray was always my constant companion until last summer, when my saliva miraculously reappeared; go figure. For me, what has helped me to keep my spirits up are being as active as possible in the activities of daily living, especially recreational activities. And when faced with one of the many very difficult challenges that go with recovery, I literally tell myself repeatedly, that "I can do this (what ever the this may be)," for the moment, hour, or day (many times moment to moment is the best that I can do)until I get through the situation. So, take a deep breath or two or three, buckle your seatbelt, and ride on.

    PATRICK
  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    Welcome Chryssi...
    I'm new here, too...and won't start treatment until this coming Monday. As ditto said, you have found the best place on the web...answers to your questions...tips and tricks the Dr.'s don't know about, and the emotional support you need in getting this disease into your read view mirror.

    Now you have a safe place to land to ask questions, and know that everything you can possibly ask, will have an answer from someone here. Plus the warm blanket of acceptance, and caring cannot be beat.

    p
  • hawk711
    hawk711 Member Posts: 566
    #12
    phrannie51 said:

    Welcome Chryssi...
    I'm new here, too...and won't start treatment until this coming Monday. As ditto said, you have found the best place on the web...answers to your questions...tips and tricks the Dr.'s don't know about, and the emotional support you need in getting this disease into your read view mirror.

    Now you have a safe place to land to ask questions, and know that everything you can possibly ask, will have an answer from someone here. Plus the warm blanket of acceptance, and caring cannot be beat.

    p

    Hi Chryssi
    I agree with John and others. We are all different. I am different than i was 6 months ago. I am 2 years post treatment and I keep changing, 2 steps forward, one step back sometimes, but I am getting much better. My doctors said some people change early and some late, like 5 years late. So, don't listen to people who say you'll never taste or spit again, I can and do.....lol.
    All the best,
    Steve
  • Chryssi
    Chryssi Member Posts: 12
    #13
    Thank You Everyone!
    I want to thank you all for being so kind and supportive to me. Your stories are full of hope and inspiration and I am so glad I found this forum. It's truly the best one I've seen so far! I am doing my best to stay positive and when I have bursts of energy I try to do "normal" things, like clean around the house something that I never imagined I would miss!

    This past Saturday I went out for the first time. Went to the movies with my family and it felt wonderful to be outdoors and have a family outing! I will be seeing a counselor eventually. I have an excellent one but I'm not ready just yet. Probably in another month.

    You are all doing an excellent job educating me on all the products that are available out there for our condition. I am so glad to know that so many of you have gotten your salivary function back. Even if it takes 5 or more years it's great news to me! I do have more taste now than I did a couple of weeks ago. It comes and goes but I'm glad that it's struggling to break through.

    Thank you again and I'm looking forward to getting to know you all, to comment on my progress, my discoveries and to help out other newcomers who are struggling with this awful disease.

    Chryssi
  • Chryssi
    Chryssi Member Posts: 12
    #14
    RinMinn said:

    Hi Chryssi
    Welcome to one of the most helpful sites on the web.
    I ,like Ditto, am new to all of this so I too will step aside and let the wonderful folks who have more experience be able to guide and help you.
    Keep strong! You are not alone!
    Renee

    Thank you for welcoming me
    Thank you for welcoming me Renee and for your supportive words :)
  • Chryssi
    Chryssi Member Posts: 12
    #15
    Skiffin16 said:

    Welcome Chryssi...
    First like Pat said...don't believe everything that you are being told. Everyone is different there isn't any absolute that I've seen so far.

    Stay positive and like you mentioned, it's a long slow process measured in weeks and months, not days and weeks.

    I had no taste or saliva for several months post treatment. Now at over three years out, I have 100% of my taste back and around 95% of my saliva.

    I was there...a sip of water with each bite of food...that I couldn't taste...every other sentence I spoke, a swig of water. I didn't go anywhere without my bottle of water.

    It took all of two years to regain nearly all of both, even a few months longer to regain sweet.

    So keep working at it, and you just might find yourself a lot better off than you are thinking now.

    Best,
    John

    Hi John,
    Your response gives
    Hi John,

    Your response gives me so much hope! Wow 95% of your saliva is back! I am so happy for you and that there's a possibility for such a recovery even if it does take a few years. I will keep working on it and I will be patient and hopeful! Thank you :)
  • Chryssi
    Chryssi Member Posts: 12
    #16
    ditto1 said:

    HI CHRYSSI
    You have come to the right place, Im new just getting started on my journey, so I will get out of the way because the folks here will be coming to greet you and share their knowledge, and make you part of a great family.... Just wanted to say welcome.

    Hi Ditto1,
    Thank you for
    Hi Ditto1,

    Thank you for welcoming me. Good luck on this tough journey and I truly hope it all goes well for you. This is definitely the right place and I'm looking forward to making new friends :)
  • Chryssi
    Chryssi Member Posts: 12
    #17
    Irishgypsie said:

    It will get better!
    One day, one week, one month, then one year!!!! You will get better, everyone is different, be patient! I hope you are seeing a counselor for the depression??

    Charles

    Thank you Charles. You
    Thank you Charles. You remind me that I need to be patient with this whole thing. I will be seeing a counselor soon.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #18
    Chryssi said:

    Hi John,
    Your response gives
    Hi John,

    Your response gives me so much hope! Wow 95% of your saliva is back! I am so happy for you and that there's a possibility for such a recovery even if it does take a few years. I will keep working on it and I will be patient and hopeful! Thank you :)

    Slow Road..
    I did start having some improvement within a few months...it's a very slow process in most of us..measured weeks and months. Definitley not days or weeks...

    Mostly the only time I fry out now will be late at night sleeping.

    Best,
    John

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