10 year survivor

skidog
skidog Member Posts: 74 Member
in Head and Neck Cancer #1

Hey folks, I'm hoping long time members of this board as well as others that may know long time H&N survivors can share a brief status on how they are doing. It's always encouraging to hear stories from those who fought the battle and are flourishing. So, if you could please include: initial diagnosis and date. treatment and duration of treatment. and maybe a little about how you/they are doing this many years post treatment. Also, if any have had secondary cancers/treatment. Matt, I hope i'm not stepping on any toes here. Roll Call seems to include some of this info. Just thought I would start a thread regarding only long term survivors. Peace! Skidog!

Comments

  • Guzzle
    Guzzle Member Posts: 710
    #2
    Five years out things pretty

    Five years out things pretty much normal - work full time   excercise every day 

    Good luck mate 

  • Logan51
    Logan51 Member Posts: 470 Member
    #3
    I'm 10 years

    End of 1st week in April marked my 10 years. NPC, stage-3, unknown Primary so I was zapped 20 places with Rads (6800 cGys) w/concurrent Cisplatin & FU-5. Had a unique C&R regiment which made me so sick I couldn't get Rads in weeks 5&6, and spent 4 nights in Hospital, so, tx lasted 9 weeks. Last 4 Rad sessions I only got zapped in 4-5 places, so that was a relief. Upside is that I've had no secondary or return of the C, yet. No lymphs were Surgically removed, except for the one the ENT Dr. did the Biopsy on. 

    1) The tops of 12 teeth have been a problem for years. Had 4 more in lower-front rebuilt last week for $740, which gets me to $15-K out of pocket.

    2) Aspiration is a problem that's developed over the past year-plus. Like Matt, who I thank for the advice, I do a lot of water sipping to keep the swallowing function good. Still spit out some of what I try to swallow, and cough when I try swallowing too much.

    3) On Baclofen and Clonazepam to help with neuro-muscular pains on both sides of neck for the last 6-plus years. Used to get very strong spasms, but not any more. Tire easily, and usually take 2-3 hour evening naps. Meds might be  the reason.

    4) Wake in morning w/very unpleasant white form of saliva in mouth. Gross. And during the day find the need to spit often. So, tx did change my saliva glands big time to the negative, and looks to be permanent.

    5) Taste returned early for spicey foods. Over the years it slowly came back, though flavors are not what they used to be. Sip a lot of flavored water, and it stings my tongue a little w/nice taste.

    6) Typical to have a somewhat runny nose, so to speak, all day. 

    7) Have a chronic sore throat, but usually due to dryness. 

    Other than the above, life has been very good with adjustments on taking it slower and w/diet changes. Drink/sip 3 Ensure Plus for my breakfast, and only eat soft foods. Retired from my metalworking Inspector job a couple weeks after I turned 61 in 12/2015, but that was because of my lower Spine, L 2-5. So, not sure what kind of shape I'd be in if I was still involved in the rat race of work and not having complete control of my daily routines. 

  • ratface
    ratface Member Posts: 1,337 Member
    #4
    this summer is my tenth

    BOT, stage 4, 39 rads, cispaltin X3, and neck disection. I'm doing well, no seconday cancers. Have had some ongoing dental issues, had an extraction and a post for a tooth implant two days ago., no Hypebaric necessary. Depends a lot on location and radiation. I can't believe how friggin painfull it was. Overall no complaints. Helllo there my mate Guzzle!

  • wild willy
    wild willy Member Posts: 63 Member
    #5
    8 years

    8 years past jan,

    .  stay tired,still cant taste,hard time swaliowing,ear and neck hurt,soar throat all the time. other than that things are going well. finnally had to quit my annual elk hunt this year. still ride horseback several times a week but not back in the wilderness country anymore. hard to give up after 18 years. some of this is probably coming up on 80 yrs. old

  • donfoo
    donfoo Member Posts: 1,773 Member
    #6
    Guzzle said:

    Five years out things pretty

    Five years out things pretty much normal - work full time   excercise every day 

    Good luck mate 

    Guzzle!

    So glad to hear you're doing so well!

  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #7
    9 Years Here

    SCC BOT, stage 4 diagnosed in May 2010.  Treatment was 35 rads and 3 doses of chemo, Cisplatin, over 7 weeks.  A few minor after effects: taking thyroid meds, the voice is a somewhat hoarse at times, but all in all, absolutely nothing to complain about.  Taste is back to normal for me, I enjoy all the foods I did before treatment.  Working full time, exercise regularly and enjoy having a glass or 2 of wine with my wife out in our yard before dinner.  Cheers to all!

  • ERomanO
    ERomanO Member Posts: 323 Member
    #8
    A friends mother in-law

    I'm just about 11 months post, but while talking to a friend last night, telling him about my cancer, the treatments, and symptoms, I learned that his mother in-law had a similar cancer as me - tumor on the base of the tongue with a couple affected lymph nodes.  She also had radiation and chemo.  This was 30+ years ago!  He said she had some scarring on her neck (nothing that anyone else would notice) and some dry mouth.  He didn't mention anything else.  Apparently she just dealt with the few discomforts and lived a long life.  She just passed recently at 93.

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #9
    Well Differentiated Squamous Cell Carcinoma

    Hi I am new to the board and want to be involved in conversation and feedback.  I am 57 year old female and my name is Sabrina.  I have been diagnosed with well differentiated squamous cell carcinoma and am scheduled for partial glossectomy and neck dissection.  They  will put in feeding tube and neck tube.  I was wondering how long the tubes stay in and can I be cured 100%.  I want to live a long normal life and is this possible with having my kind of tongue cancer it is in Stage 1.  I am afraid and was wondering if anyone can tell me anything about my condition, treatment and prognosis.  How is it going to be after surgery - I have to see a speech therapist they said will I go back to eating food soon.... will I be able to swaloow and talk? Please if anyone has anything to help me I would be forever grateful.  God Bless you all

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #10
    Can someone tell me about life expectancy

    What is my life expectancy in having stage 1 well differentiated squamous cell carcinoma?  Will I go on to live a long normal life?  Can I still enjoy a drink or too - like a glass of wine or something occastionally still? I am having a partial glossectomy and neck dissection.  My CT scan came back normal for neck no signs of mestatistic growths. How long do the feeding tube stays in and neck tube - can I go back to eating food after surgery? I am only 100 lbs so I don't want to lose alot of weight.  I am trying to eat good before surgery but what happens after surgery how do you intake food thru the feeding tube.... after it comes out will I go back to normal?  I want to live longer than just 5 years from what I read on the internet it scares me when they say a 5 year or less survival rate for oral cancers. It is freaking me out. I don't want to die.  Will I need radiation after my surgery or if my lymph nodes are clear with the surgery be it?  I know i have to go back for follow up testing and such and just want to be back to normal and 100% cured is it possible?  Please tell me any feedback you can God Bless you all everyone is in my prayers.  I am new to board so I hope I am writing this correctly so people will respond to me. 

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