6-Month Post Scan and 1 Year Anniversary Update

OKCnative
OKCnative Member Posts: 326 Member
edited August 2023 in Head and Neck Cancer #1

Almost a year ago I felt something odd on the side of my neck and went to the doctor.

That eventually resulted in a diagnosis of stage 3 base of tongue SCC with a fairly large tumor.

Through much research on this forum and other sights I proceeded with no neck dissections, no tumor surgery, no pain meds, no feeding tube and no port. I endured 35 radiation treatments to 3 targets on my neck and jaw for 15 minutes daily and Cisplatin chemo in three large doses. I relied heavily on meditation breathing and recreational grade THC for stress, anxiety and pain relief.

I lost 40+ pounds, temporarily lost the ability to taste and talk and experienced all the other "joys" of treatment; mucous for days, fatigue, neuropathy, lymphedema, etc. Was told at my 3 month post treatment appointment my cancer had metastasized to my heart and lungs.

But, here I am, today I had my 6-month post treatment scan results read to me this afternoon --- "Unremarkable." And for the first time I'll take that as a complement! No signs of the primary tumor, no signs of the head and neck cancer and no signs of the metastasized cancer to my thoracic area.

Unbelievable that just less than a year after this all began and to see me now you'd never know. I can eat whatever I want, most of my saliva has returned, all my weight is back on and all the other symptoms have gone away. I truly feel blessed.

I know it's not over. But it's a load off my mind until I'm told otherwise!

Thanks everyone for your insights, well wishes and wisdom.

Comments

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #2
    Great news OKCnative! We

    Great news OKCnative! We never give up. I am 2 years out this July. I have a CT scan on June 15 to further investigate a spot on my right lung and a spot just below my left ear. Hoping for the best.

    Steve

  • donfoo
    donfoo Member Posts: 1,771 Member
    #3
    congrats

    Glad to hear you got through it all unscathed. Some do and some have significant long-term side effects. Everyone's experience is a unique journey. I'll be crossing 5 years in a couple weeks so officially "cured". The reality is for SCC oral cancers is the chance of recurrence drops dramatically after 18-24 months. My own feeling is there was some residual undetected cancers hiding and came out later. Congrats again!

  • swopoe
    swopoe Member Posts: 492
    #4
    Unremarkable is the best

    Unremarkable is the best compliment ever! You must be like my husband. 2 years and 8 months out and you would never know he had cancer. Lucky guys you two are!

  • Dean54
    Dean54 Member Posts: 160 Member
    #5
    Awesome OKC and I go in for

    Awesome OKC and I go in for my 6month head and neck MRI in a couple of weeks and hope I get the same positive outcome you just got.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #6
    Very good news! Thanks for

    Very good news! Thanks for your support on this board. Bill

  • anatale
    anatale Member Posts: 1 *
    #7
    https://csn.cancer.org/discussion/316405/6-month-post-scan-and-1-year-anniversary-update

    Congrats!

    I noted you had an issue with swallowing that was resolved without resorting to a feeding tube. What was the treatment that helped the swallowing issue?


    I had Proton therapy similar schedule 35 treatments, only difference I had 6 small chemo carboplatin on Mondays. No issues swallowing when done. But, 3 months later scan showed mets on lung and sacrum. Got SBRT , then 3 months scan again showed mets for L4. Another 3 months and scan showed too many mets for radiation so I started heavy chemo carbo, cisplatin and keytruda. First treatment got a throat infection that left me with difficulty swallowing and an epiglottis that is allowing some liquid down the airway.

    Thanks

    Tony

  • TonyB2023
    TonyB2023 Member Posts: 20 Member
    #8
    https://csn.cancer.org/discussion/comment/1707039#Comment_1707039

    I had radio-chemotherapy for scc throat cancer in 2020 and chemo-immunotherapy for scc lung cancer last fall (2022). I was given Keytruda, then carboplatin and paclitaxel (Taxol) with surprisingly good results. I continue with the Keytruda every 3 weeks with no adverse affects so far. The chemo turned the lights out on all my tumors, reduced their size (some to not being visible) and the others showed signs of breaking up after 4 cycles. In June my PET/CT showed NED. I have high hopes for the Keytruda.

    The only side effect I have is occasional mild nausea and tiredness/fatigue. I never shook the fatigue following the radiotherapy in '20, so it is nothing new.

    I pray for your success!

    Stay positive!

    One Tony to another

  • TonyB2023
    TonyB2023 Member Posts: 20 Member
    #9
    https://csn.cancer.org/discussion/comment/1707041#Comment_1707041

    Oh, the epiglottis. I was left with an epiglottis that never fully seals off the wind pipe, as well. My speech pathologist taught me exercises to strengthen the muscles used in swallowing. I did them before the treatment began and tried to do them after. The swelling makes it hard, but as I recovered I continued doing them and eating wisely until I could eat without practicing them anymore. I do have to take smaller bites and keep water at hand to help break up the food before I swallow. That's usually toward the end of a meal as I run low on saliva. Starches and breads are a problem.

    Tony

  • TonyB2023
    TonyB2023 Member Posts: 20 Member
    #10

    OKC,

    Congrats!!

    I pray it's the 1st of many more!

    Stay positive!

    Tony

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #11

    Tony,

    I'm over 5 years out (all clear so far) - and I still make sure to have water ready, during meals.

    For me, the problem seems to be meat. I can eat it - but certainly not as much as I used to.

    I guess the great thing about Cancer (strange to say) is that it reminds one that one really DOES need to appreciate the beauty in their life!

    I hope you have a great day,

    MG

  • TonyB2023
    TonyB2023 Member Posts: 20 Member
    #12
    https://csn.cancer.org/discussion/comment/1707062#Comment_1707062

    MG,

    You are an inspiration!

    When I researched head & neck cancer before and during my treatment, I remember reading that side effects from radiotherapy can occur "months, even years after treatment", but kind of forgot about that as I went through recovery. I developed fibrosis in the muscles in the front-right quadrant of my neck right after treatment, even though I did the anti-lymphedema massages religiously. Last fall, almost 2 years post-treatment, I started getting painful muscle spasms in all the different muscle groups in my neck. They continue today. I'v had 3 sessions of acupuncture and PT, so far with questionable improvement. Have you experienced any late onset side effects?

    Tony

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #13

    Tony,

    I'm busy on a construction job, so I haven't been on here as much as usual.

    I do get muscle spasms in my neck (it feels like a cable is running down one side of my neck). Generally, if I stretch my neck and relax, they go away reasonably quickly.

    I hope your recovery continues to improve and that you continue to be very happy in your life!

    MG

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