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Kskokko
Kskokko Member Posts: 42
in Head and Neck Cancer #1

 

My name is Kent and I have been lurking here for a while.   I am 60 yo male 

My primary found a suspicious lump in my neck on 1/12.    I'll streamline what you probably can predict

I have hpv+ tonsilar cancer that had spread to the lymph nodes

On 2/20 I had a radical tonsilectomy and neck disection with 30 lymph nodes removed.   Pathology revealed I cancerous node with extracapsular extensions.

On 3/20 i had my radiation sim and mask fitting

On 3/22 I had a gastric tube installed

On 3/24 I had a chemo port installed.

On 3/28 I begin chemo and radiation.    Cisplatin weekly for 6 weeks and rad daily for 6 weeks.   

 

I hope to submit my questions one at a time.   

First.   THe gastric tube was severely painful for the first dy, and now is very tender.    What can I expect about the pain level?   I know it has been only four days, but this is hard to get used to.    Any advice on how to manage the tube?    How to dress?   How to secure the tube to closthing?

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  • Kskokko
    Kskokko Member Posts: 42
    edited March 2017 #2
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    Question 2

    THe radical tonsilectomy and neck dissection was 2/20.   On 3/13 I had my last meeting with the ENT surgeon who was happy with the surgeries.  May not see her again until after chemo/rad

    How long will the stiffness and numbness remain?    My range of motion is getting better and I massage and stretch several times a day, but the neck still feels like a rock.   

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    welcome part 2

    Kent,

    Welcome and what a great post.

    I had 2 PEG tubes, one very painful and did not work and one very good and unpainful and always worked.

    It may be uncomfortable to start, but it becomes like a hanging appendage which people go to great lengths to tie up, tape, clip, etc…

    You should flush it every day whether using it or not.

    Dress normally, maybe a loose fitting shirt.

    You get used to it. I used jevity, hang it high and drip away most of  the times, but there does come the times when you want to syringe it in and plunger away your meal.

    Matt

  • Kskokko
    Kskokko Member Posts: 42
    #4
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    Question 3

    The throat healed ok, but the past week or so I had an odd sensation when I swallow, as though there is something caught back there.   I have a hard time describing it.    Maybe that there is a tag of flesh that I feel weh I swallow/

    Anyone experience this?

  • Kskokko
    Kskokko Member Posts: 42
    #5
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    CivilMatt said:

    welcome part 2

    Kent,

    Welcome and what a great post.

    I had 2 PEG tubes, one very painful and did not work and one very good and unpainful and always worked.

    It may be uncomfortable to start, but it becomes like a hanging appendage which people go to great lengths to tie up, tape, clip, etc…

    You should flush it every day whether using it or not.

    Dress normally, maybe a loose fitting shirt.

    You get used to it. I used jevity, hang it high and drip away most of  the times, but there does come the times when you want to syringe it in and plunger away your meal.

    Matt

    gastric tube

    I took an old t shirt and cut a hole in it to feed the tube through.   The t shirt is next to my body, but the tiube is outside and pinned to the shirt.   

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    Yup...the dang thing

    hurts like hell the first two days...and eventually fades to miner irritant.  I went through several ways to keep the tube from being in the way...tucked it in my bra...tucked it in my pants, taped it, hung it fro a string around my neck...used an ace bandage. Tape rarely works well very long ....I ended up Wearing stretchy camisoles that kept it nice and tight to my body.

    p

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
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    Kskokko said:

    Question 2

    THe radical tonsilectomy and neck dissection was 2/20.   On 3/13 I had my last meeting with the ENT surgeon who was happy with the surgeries.  May not see her again until after chemo/rad

    How long will the stiffness and numbness remain?    My range of motion is getting better and I massage and stretch several times a day, but the neck still feels like a rock.   

    I'm a year and a half

    out of my neck dissection...it is still numb. I think that is something that stays. Keep moving your neck once you start rads....as radiation will stiffen things up. There are stretching exercises to help keep your neck limber. 

    p

  • Kskokko
    Kskokko Member Posts: 42
    #8
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    phrannie51 said:

    Yup...the dang thing

    hurts like hell the first two days...and eventually fades to miner irritant.  I went through several ways to keep the tube from being in the way...tucked it in my bra...tucked it in my pants, taped it, hung it fro a string around my neck...used an ace bandage. Tape rarely works well very long ....I ended up Wearing stretchy camisoles that kept it nice and tight to my body.

    p

    Your pic reminds me of one thing I am grateful for - the company of my dogs.   Almost as important as the company of my wife.  

  • Josephwc
    Josephwc Member Posts: 69
    #9
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    1 year post surgery

    I wasnt diagnosed with HPV but I did have partial glosectomy and left side neck dissection. One year out and my neck is still somewhat numb and stiff but much much better. It all seemed so depressing early on and the healing process is slow but I feel better all the time. I hated all the tubes and every needle. Just thinking about them gives me the spooks. The main goal is to put the weight back on and keep it all in check. I've visited my surgeon for exams and scans and I've followed all orders. So far so good for me. I wish you a speedy recovery and keep up with the humor.

  • Kskokko
    Kskokko Member Posts: 42
    edited March 2017 #10
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    Food

    i am mostly worried about keeping on a healthy weight.  I have been about 160 lbs for 35 years

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited March 2017 #11
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    First of all

    Eat, eat eat. Anything and everything you want, high calorie  foods especially. If you gain weight it will probably be temporary: radiation will burn the calories up.

    My husband reminds me to tell you things will taste differently so branch out and eat different things if your favorites start tasting off to you.

    Stay hydrated. Enjoy Gatorade.

    Go to your favorite restaurant and have your favorite meal and then do it again.

    This is a most excellent group of people who will be here for you with great information.

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited March 2017 #12
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    This is the only time -

    You'll be told to eat anything you want, make the most if it :)

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited March 2017 #13
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    I won't worry about gaining

    I won't worry about gaining weight.  It could happen, but in +95% of cases it doesn't.  If you gain weight they will write medical papers on how you did it.   I think they start getting worried when loss gets to greater than 10% of initial body weight, and from what I can gather that ends up being most of us.  It won't just be your throat, your appetite goes too.  And I am discovering it's not coming back.  I am 3 months post, eating most things, and not gaining an ounce.  My stomach shrank, small portions are very filling.

    I was overweight at 220, my primary care was on me at every exam.  Now I am 180, and my vitals and blood ox are perfect.  Cancer may have added years to my life.  Now I see Dr. Pudgebucket walking in my neighborhood at lunch, trying to keep his under control.

  • Kskokko
    Kskokko Member Posts: 42
    #14
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    AnotherSurvivor said:

    I won't worry about gaining

    I won't worry about gaining weight.  It could happen, but in +95% of cases it doesn't.  If you gain weight they will write medical papers on how you did it.   I think they start getting worried when loss gets to greater than 10% of initial body weight, and from what I can gather that ends up being most of us.  It won't just be your throat, your appetite goes too.  And I am discovering it's not coming back.  I am 3 months post, eating most things, and not gaining an ounce.  My stomach shrank, small portions are very filling.

    I was overweight at 220, my primary care was on me at every exam.  Now I am 180, and my vitals and blood ox are perfect.  Cancer may have added years to my life.  Now I see Dr. Pudgebucket walking in my neighborhood at lunch, trying to keep his under control.

    gaining weight

    To the contrary, I understand the risk of losing weight and have been trying to put weight on.   Yes I have been eating lots of high cal 

    foods for the first time, but have only gained 5 lbs.    It will be challenge to keep weight on.   

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited March 2017 #15
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    Kskokko said:

    gaining weight

    To the contrary, I understand the risk of losing weight and have been trying to put weight on.   Yes I have been eating lots of high cal 

    foods for the first time, but have only gained 5 lbs.    It will be challenge to keep weight on.   

     

    taste no taste, bad taste, awful feel

    Kent,

    It just comes down to getting enough calories by eating, drinking or by PEG.  It is nice to see a fresh face (which I was one once) and watch as you try to understand what happens.  I did not get it when my doctor said my taste buds were going to disappear?  BUT, they truly go on a weird and wacky adventure which most all of us have been on.

    Remember, hydration and nutrition will keep you out of the hospital and will make most everything run smoother.

    Good luck,

    Matt

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #16
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    PEG

    I made a half coil out of my PEG and taped to my abdomen. I would just re-tape the tube after feedings. Wrap the tape so it sticks to its self, then apply the ends to your skin. Change locations every few days and just use the quarter inch transpore tape. I also used an abdominal binder for a scure feeling. I was very active up until about week 3. Hope this may of help for you.

  • Kskokko
    Kskokko Member Posts: 42
    #17
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    Milestone

    I had my first chemo/rad session yesterday.  One chemo down and five to go.   One rad down and 31 to go.   

    I too some atavil because I do not tolerate the mask, but may taper that off.   I feel doped up the rest of the day   

    Today rad only.   

     

  • mapdan
    mapdan Member Posts: 33 Member
    #18
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    it will get better

    Kent, I too am new here but went through the same cancer as you. I am 58 years old. Just got my feeding tube out yesterday as a matter of fact. You will survive this. It is a pain in the butt for a while and just gets to be part of you. Rely on it when you need it. My radiation treatments ended last October 2016 (35 treatments - 7 chemo treatments) Stay positive by all means. Life will be different to say the least but life is an adventure anyway. Good luck

  • Kskokko
    Kskokko Member Posts: 42
    #19
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    mapdan said:

    it will get better

    Kent, I too am new here but went through the same cancer as you. I am 58 years old. Just got my feeding tube out yesterday as a matter of fact. You will survive this. It is a pain in the butt for a while and just gets to be part of you. Rely on it when you need it. My radiation treatments ended last October 2016 (35 treatments - 7 chemo treatments) Stay positive by all means. Life will be different to say the least but life is an adventure anyway. Good luck

    Thank you.

    Mapdan 

     

    i finished the week week of four rad and one chemo session.   I have the weekend off. 

    Two days after the chemo I experienced the nausea.   It was more like persistent heartburn or acid reflux than nausea.  the drugs kept it under control, but added to the terrible fatigue.   I have no appetite but am trying to eat small bites frequently.   Is the nausea more like heartburn?    

    I am hoping I do not need the antinausea Drugs today.    They leave me so foggy.   Will try antacids   

    It would be nice if the nausea was just a day or two post chemo so I could try to eat normally

     

     

  • MMDowns
    MMDowns Member Posts: 318
    #20
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    My husband just finished his

    My husband just finished his 5th week of treatments And the second dose of chemo. He too is experiencing the acid reflux in lieu of the nausea. Which is new. Last time it was nausea and no heartburn. I think it's the standard " everyone is different and every time is different". He took Tums last night and that seemed to help. I'm not sure how long you're acid/nausea will last but my husband was told to keep taking the antinausea drugs on a regular basis because the nausea can hit ant anytime and once it's there it's hard to get back in control.  This may be your form of nausea? Keep pushing the fluids and nibble on something continuously.  That will help. Have a good weekend. 

  • Kskokko
    Kskokko Member Posts: 42
    edited April 2017 #21
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    MMDowns said:

    My husband just finished his

    My husband just finished his 5th week of treatments And the second dose of chemo. He too is experiencing the acid reflux in lieu of the nausea. Which is new. Last time it was nausea and no heartburn. I think it's the standard " everyone is different and every time is different". He took Tums last night and that seemed to help. I'm not sure how long you're acid/nausea will last but my husband was told to keep taking the antinausea drugs on a regular basis because the nausea can hit ant anytime and once it's there it's hard to get back in control.  This may be your form of nausea? Keep pushing the fluids and nibble on something continuously.  That will help. Have a good weekend. 

    Mmdowns

    that is good to know.  I was told to take the prochlorpirazine at the first sign, then another tab later.   It just leaves me so foggy i can barely function.   I am hoping the nausea subsides so I can manage with a few tums.    

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