Hello everyone! About time I introduce myself!

Swampysteve
Swampysteve Member Posts: 8 Member
in Head and Neck Cancer #1

Greetings to all. I have been lurking on this board for almost two months now while I went through my treatment.  The knowledge I learned here from those who have gone before me has been invaluable,  so many great people here helping others! I hope to do the same.

During the late summer of 2020, I was experiencing chronic deep inner ear pain, oinmy right ear.  ENT, despite numerous visits and tests, could not determine a cause. Eventually I was diagnosed with a type of Neuralgia,  and put on Gabapentin. Meanwhile, I was getting about 200 episodes of excruciating stabbing pain a day; nothing helped. At one point (Dec 2020),  my right tonsil swelled up, so off I went to the ENT again. It was lanced, some puss came out, and it was diagnosed as an infection. I was actually told 'Don't worry, you don't have throat cancer'. The ear pain continued, no other symptoms were present. Finally, late February my right tonsil swelled up again, this time it looked a bit different, certainly more gnarly. I went back to the ENT, a different doctor, and he immediately scheduled a tonsillectomy and biopsy for the next week. Because of the state of the tonsil, he only removed a portion of It. It came back HPV+ SCC stage I. PET scan showed some activity on left tonsil as well, and one lymph node lit up. The tumor board decided to remove the left tonsil and install a PEG tube at the same time. Two weeks later, I began 35 rads and 7 chemo, which I finished on Jun 7th. As we all know, treatment was not fun, especially the last two weeks and the 2-3 weeks following. It is now just over 4 weeks since I completed the treatment, and day by day I am healing slowly. I am still using the PEG because I have painful tongue and mouth sores. I am able to drink water, and just had a delicious sweet tea on ice, a first for me. I have managed two fried eggs this week, and hope to gradually introduce more foods. 

 

Anyway, enough about me.  Hello everyone!!

 

Steve

 

Comments

  • tbret
    tbret Member Posts: 76 Member
    edited July 2021 #2
    Memory fades

    As you are introducing new foods you could probably do others a favor and mention what really works well for you.  I don't even remember the order I took things.   It's funny how the brain does know how to forget things it doesn't want to remember.

    I'm sorry you had any reason to lurk, but I'm glad you're active and willing to help others.   I don't spend as much time here as I used-to because life is busier now for me than it was before my diagnosis.  There's just no time to dwell on a disease I don't have anymore! (Thank you, God and medical people.)

    But I try to make some time to dwell on people.  I'm glad you are here and available.

    The stage you are in is probably one of the first stages of this whole thing where the patient is truly "in charge."  Your experiences will be valuable to others.

    Get better.  Be well.  "Normal" (whatever that means) is just around a long bend in the road but at least you are in the curve.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited July 2021 #3
    Hello Steve

    And welcome aboard. Glad you are out in the open. I am glad for you that you can start getting in just a little bit of food at a time. It's a start and every new little thing we now eat is a milestone and many times a new flavor for us at the stage you are at. Your symptoms certainly seem unusual and I can see that it was not easy for them to diagnose your cancer till it really showed itself. It must have been radiating the pain to your ears instead of where the cancer was. Wishing you a continued good recovery-Take care-God Bless-Russ

  • Swampysteve
    Swampysteve Member Posts: 8 Member
    #4
    tbret said:

    Memory fades

    As you are introducing new foods you could probably do others a favor and mention what really works well for you.  I don't even remember the order I took things.   It's funny how the brain does know how to forget things it doesn't want to remember.

    I'm sorry you had any reason to lurk, but I'm glad you're active and willing to help others.   I don't spend as much time here as I used-to because life is busier now for me than it was before my diagnosis.  There's just no time to dwell on a disease I don't have anymore! (Thank you, God and medical people.)

    But I try to make some time to dwell on people.  I'm glad you are here and available.

    The stage you are in is probably one of the first stages of this whole thing where the patient is truly "in charge."  Your experiences will be valuable to others.

    Get better.  Be well.  "Normal" (whatever that means) is just around a long bend in the road but at least you are in the curve.

    Thanks Tbret, I will

    Thanks Tbret, I will certainly try and help others from my trial and error. So far, ice cream and shakes are a no for me, they burn they back of my throat. I have not tried a smoothie, but will give that a shot this week. Watermelon is a hit! Too bad there is not many calories there.

  • Swampysteve
    Swampysteve Member Posts: 8 Member
    edited July 2021 #5
    wbcgaruss said:

    Hello Steve

    And welcome aboard. Glad you are out in the open. I am glad for you that you can start getting in just a little bit of food at a time. It's a start and every new little thing we now eat is a milestone and many times a new flavor for us at the stage you are at. Your symptoms certainly seem unusual and I can see that it was not easy for them to diagnose your cancer till it really showed itself. It must have been radiating the pain to your ears instead of where the cancer was. Wishing you a continued good recovery-Take care-God Bless-Russ

    Hello Russ, thank you! I have

    Hello Russ, thank you! I have read your story and many of your posts. You are an inspiration to many. Wishing you the best as well.

  • ERomanO
    ERomanO Member Posts: 323 Member
    #6
    Hi Steve!

    I'm glad you are feeling the healing.  Being able to enjoy sweet tea after 4 weeks seems amazing to me.  As tbret mentioned, memory fades and it's hard to remember the finer points of my timeline, but I'm sure it was a few months before a taste for sweets returned.  It's easy to overendulge as taste returns, which is what happened to me.  So I had to dial everything way back and get into healthier eating and regular (and quite vigorous) exercise.  I can honestly say that, at 3 years post Tx, I haven't felt this good in 30 years... aside from a little neuropathy and some of those annoying aches and pains that come with age ;-).

    All the best to you as you continue to heal.

    Eugene

  • Swampysteve
    Swampysteve Member Posts: 8 Member
    edited July 2021 #7
    ERomanO said:

    Hi Steve!

    I'm glad you are feeling the healing.  Being able to enjoy sweet tea after 4 weeks seems amazing to me.  As tbret mentioned, memory fades and it's hard to remember the finer points of my timeline, but I'm sure it was a few months before a taste for sweets returned.  It's easy to overendulge as taste returns, which is what happened to me.  So I had to dial everything way back and get into healthier eating and regular (and quite vigorous) exercise.  I can honestly say that, at 3 years post Tx, I haven't felt this good in 30 years... aside from a little neuropathy and some of those annoying aches and pains that come with age ;-).

    All the best to you as you continue to heal.

    Eugene

    Thanks Eugene, and best

    Thanks Eugene, and best wishes to you too. So glad to hear you are doing so well,  you give many hope. 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited July 2021 #8
    Swamp,

    Damn - you're a survivor, and you're done with treatment. It sounds like you're well on your way to recovery!

    The eating thing is frustrating for a while, to be sure. But, I talk to people on here all the time, who tell me that it comes back ... given a little time.

    I am 2 years out of treatment, and despite losing 45 pounds during the treatment process, my GF is starting to tell me to watch my weight again.

    I feel pretty sure your favorite foods will come back around again. Your permanent tastes may change a bit, but keep trying new things, and you'll slowly be surprised.

    I hope you have a great weekend!

    MG

  • Chillg8r
    Chillg8r Member Posts: 85 Member
    edited July 2021 #9
    Good luck with your recovery.

    Good luck with your recovery. I’m 12 weeks out from the same treatment plan and I've got about 50% of my taste. Drinking Boosts was the first easy thing to take when I got my PEG removed. Blended yogurt, fruit smoothie, Thai soups, and Starbucks Frappuccino's in the jar were also early winners. I've found dry mouth mouthwash has helped quite a bit if you are dealing with that.....hang in there, I turned the corner in my 8th week. Oh, I found poached eggs in a cup via the microwave was the easiest way to eat eggs because they are slippery and wet.....

  • Swampysteve
    Swampysteve Member Posts: 8 Member
    #10
    motorcycleguy said:

    Swamp,

    Damn - you're a survivor, and you're done with treatment. It sounds like you're well on your way to recovery!

    The eating thing is frustrating for a while, to be sure. But, I talk to people on here all the time, who tell me that it comes back ... given a little time.

    I am 2 years out of treatment, and despite losing 45 pounds during the treatment process, my GF is starting to tell me to watch my weight again.

    I feel pretty sure your favorite foods will come back around again. Your permanent tastes may change a bit, but keep trying new things, and you'll slowly be surprised.

    I hope you have a great weekend!

    MG

    Thanks Motorcycle Guy!

    Thanks Motorcycle Guy!

    I appreciate the encouraging words. I look forward to my two favorites, pizza and spaghetti with meatballs ? I am going to wait awhile for those, so I don't get disappointed,  still too early.

     

    Hope you have a great weekend too!

    Steve

     

     

  • Swampysteve
    Swampysteve Member Posts: 8 Member
    edited July 2021 #11
    Chillg8r said:

    Good luck with your recovery.

    Good luck with your recovery. I’m 12 weeks out from the same treatment plan and I've got about 50% of my taste. Drinking Boosts was the first easy thing to take when I got my PEG removed. Blended yogurt, fruit smoothie, Thai soups, and Starbucks Frappuccino's in the jar were also early winners. I've found dry mouth mouthwash has helped quite a bit if you are dealing with that.....hang in there, I turned the corner in my 8th week. Oh, I found poached eggs in a cup via the microwave was the easiest way to eat eggs because they are slippery and wet.....

    Hello Chillg8r!

    Hello Chillg8r!

    Thanks for the tips, I'll have to try the poached egg idea.

    What type of Thai soup do you recommend? I used to love Tom Yan koong,,  but that's probably too spicy at the moment.

     

    Steve

  • Chillg8r
    Chillg8r Member Posts: 85 Member
    edited July 2021 #12
    Swampysteve said:

    Hello Chillg8r!

    Hello Chillg8r!

    Thanks for the tips, I'll have to try the poached egg idea.

    What type of Thai soup do you recommend? I used to love Tom Yan koong,,  but that's probably too spicy at the moment.

     

    Steve

    Thom Ka Gai or variations of

    Thom Ka Gai or variations of it. It's a coconut milk based soup that has tons of flavor so it overcomes my lack of taste. I asked them to just give me the broth and hold the chicken or shrimp. I would also run it through a strainer.....YUM!

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited July 2021 #13
    Swampysteve said:

    Hello Russ, thank you! I have

    Hello Russ, thank you! I have read your story and many of your posts. You are an inspiration to many. Wishing you the best as well.

    Hi Swampysteve

    My name is Lisa not always online here or even online.  I do remember a tip I got here, as you progress back into the world of eating have you hear of Magic Mouthwash.  Can help with a sore throat too.  Do you have much saliva?  Important if lucky too kept mine for 6 months than gone.  But did try lots of things before lost.  Plus a very good Dentist knowledged in throat Cancers helped Me a lot.  Got burning tong or areas that caused pain to eat.  He zapped that with a small lazer of some kind, didn't hurt but 100% better.  But big tip other than swallowing therapist showed Me tricks but a buffet is often good place to start.  You can try tiny portions of different things.  My first was with another survivor in same place, We went to her favorite Chinese buffet.  It also had other foods.  Pudding in small cups, soup in small can.  Often just walking your favorite grocery store you find small cans in a gravy.  I loved Steamers Fett Alfredo slippery.

    But now for Me I'm unusual but was over dosed on both treatments so tons of problems 5 yrs later eating became much more restrictive but you have a chance.  Just do swallowing exercises since after peg it like starting over.  Keep throat skin very lubricated & moist.  I still rub Arnica gel ( natural swelling, slight pain control very light) @ least 3-4 to 5 times a day in fact was Arnica that cleared away My lymphodema blew away therapist after all her taping did nothing.  I good aloe gel too helps.  I also chug a mouthful of Georhe's Aloe water morning & night helps. Can get on Amazon or Whole Foods.  I like natural.  Avoid sugar Cancer cells thrive on that.  Helped Me get of sugar cravings.

    hope any on these help!  Good luck on your abi-normal journey & wish you a ton of only good, positive luck!

    Drivingdaisy. Aka Lisa

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