What to expect now

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  • PipLily
    PipLily Member Posts: 127 Member
    edited July 2020 #62
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    Hello!

    Hi Dave.....wondering how you are doing?? Hopefully recovering well! Was thinking of you, as you finished up around the same time as my husband. Best wishes!

  • Dave705
    Dave705 Member Posts: 62 Member
    #63
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    Checking in

    been 5 weeks since the end of my radiation treatments. Talked to Oncologist today. He is putting me back on oxycodone for the mouth pain I am still suffering from while chewing. Swallowing no problem, but still tough to eat. No taste buds, but right now I am ready to chew even bland food. Thanks for all the wishes from everyone. Will keep you posted as recovery pushes on. Stay safe to all

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #64
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    Dave705 said:

    Checking in

    been 5 weeks since the end of my radiation treatments. Talked to Oncologist today. He is putting me back on oxycodone for the mouth pain I am still suffering from while chewing. Swallowing no problem, but still tough to eat. No taste buds, but right now I am ready to chew even bland food. Thanks for all the wishes from everyone. Will keep you posted as recovery pushes on. Stay safe to all

    Dave,

    I'm sorry to hear it's been a challenge. I can remember a time when eating a piece of pizza seemed like an impossible dream, because of mouth pain, and lack of saliva. But, it will all come back (including the taste). It just seems to take a long time.

    Keep trying new foods, as you'll find things you like with time!

    Hang in there...

    mg

  • big G
    big G Member Posts: 176 Member
    edited July 2020 #65
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    motorcycleguy said:

    Dave,

    I'm sorry to hear it's been a challenge. I can remember a time when eating a piece of pizza seemed like an impossible dream, because of mouth pain, and lack of saliva. But, it will all come back (including the taste). It just seems to take a long time.

    Keep trying new foods, as you'll find things you like with time!

    Hang in there...

    mg

    Mouth pain

    Hang in there Dave it will get better. Took me a little while to get taste back. Try eating soft foods, gravy and sauces if you can. Keep us posted.

  • Dave705
    Dave705 Member Posts: 62 Member
    edited August 2020 #66
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    Seeing oncologist today

    Today is my first face to face meeting with oncologist since treatment ended. Will probably get some bloodwork and setup for pet scan, but just guessing now. Hopefully will get some good news.

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    #67
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    Dave705 said:

    Seeing oncologist today

    Today is my first face to face meeting with oncologist since treatment ended. Will probably get some bloodwork and setup for pet scan, but just guessing now. Hopefully will get some good news.

    Dave Hope You

    Do get Blessings of good news. When you get a scan and get the results from that and it's NED that is the best news. I find from my experience and reading other folks stories on here that the treatment is usually sufficient to get rid of your cancer but there is always that small doubt and concern till you finally get the scan results-Take Care-God Bless

  • Dave705
    Dave705 Member Posts: 62 Member
    edited August 2020 #68
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    No news

    Today's checkup just a routine 2 month checkup. Next month on schedule for pet scan, bloodwork, and the good old nasal scope. He did examine my mouth said everything looks good, some scar tissue yet on right side, but everything else normal. Have to wait another month for hopefully good news. 

  • nancytc
    nancytc Member Posts: 70 Member
    edited August 2020 #69
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    Hi Dave! I am also a right

    Hi Dave! I am also a right tonsil cancer survivor. I am assuming you were HPV positive. My only symptom was a tiny pea size lump under my jawbone. From there I had a lymphodectomy for diagnosis, a tongue resection and four tonsils removed to discover the primary cancer location. Then treatment of 33 rounds of radiation with 3 massive doses planned (I could only endure 2) of Cisplatin Chemotherapy. It was BRUTAL!!! Bottom line, I am now leading a fairly normal life three years later. My most troublesome side effect is dysphasia due to the lack of salivia and muscles for swallowing not working as well due to the radiation. I have an awesome life full of fun and adventure. If I didn't tell people, (and I usually dont) no one would even guess that I had ever been sick. I am excited to hear of your progress :). Be sure to see a speech pathologist to guide you through necessary throat exercises for you to do daily forever for the health of your ability to swallow safely! Blessings, Nancy

  • Dave705
    Dave705 Member Posts: 62 Member
    edited August 2020 #70
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    nancytc said:

    Hi Dave! I am also a right

    Hi Dave! I am also a right tonsil cancer survivor. I am assuming you were HPV positive. My only symptom was a tiny pea size lump under my jawbone. From there I had a lymphodectomy for diagnosis, a tongue resection and four tonsils removed to discover the primary cancer location. Then treatment of 33 rounds of radiation with 3 massive doses planned (I could only endure 2) of Cisplatin Chemotherapy. It was BRUTAL!!! Bottom line, I am now leading a fairly normal life three years later. My most troublesome side effect is dysphasia due to the lack of salivia and muscles for swallowing not working as well due to the radiation. I have an awesome life full of fun and adventure. If I didn't tell people, (and I usually dont) no one would even guess that I had ever been sick. I am excited to hear of your progress :). Be sure to see a speech pathologist to guide you through necessary throat exercises for you to do daily forever for the health of your ability to swallow safely! Blessings, Nancy

    Thanks and Congratulations

    Thanks For the advice and glad to hear how well you are doing. I have been practicing my stretching exercises lately. It was hard to do at first with the muscle pain. But now everything is better. Thanks Again for your kind words. Dave

     

  • Dave705
    Dave705 Member Posts: 62 Member
    #71
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    Pet scan on monday

    Trying to stay relaxed as Monday the 14th is my Pet scan to hopefully see that everything is clear. I can't Thank everyone on here enough for all their support and guidance through these last 7 months. Special shoutout to motorcycle guy who has been keeping tabs on me every week. Hope I can share nothing but good news with everyone soon.

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #72
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    Dave705 said:

    Pet scan on monday

    Trying to stay relaxed as Monday the 14th is my Pet scan to hopefully see that everything is clear. I can't Thank everyone on here enough for all their support and guidance through these last 7 months. Special shoutout to motorcycle guy who has been keeping tabs on me every week. Hope I can share nothing but good news with everyone soon.

    Dave,

    I've enjoyed getting to know you, and staying informed of your recovery process.

    I have a pretty strong feeling that your PET Scan will be AOK!

    Thanks for keeping in touch,

    mg

  • PipLily
    PipLily Member Posts: 127 Member
    #73
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    Dave705 said:

    Pet scan on monday

    Trying to stay relaxed as Monday the 14th is my Pet scan to hopefully see that everything is clear. I can't Thank everyone on here enough for all their support and guidance through these last 7 months. Special shoutout to motorcycle guy who has been keeping tabs on me every week. Hope I can share nothing but good news with everyone soon.

    Hello!

    Hi Dave, you probably don’t have any results yet, but praying for great news for you! Check back in when you know!!

    Elizabeth

  • Dave705
    Dave705 Member Posts: 62 Member
    edited September 2020 #74
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    PipLily said:

    Hello!

    Hi Dave, you probably don’t have any results yet, but praying for great news for you! Check back in when you know!!

    Elizabeth

    All clear

    Got the results, All clear. Everything normal! Feels like the world has been lifted off of me. Still have to wait for taste buds and have a little swelling in right neck muscle, which they say is normal. So I think I can handle those minimal problems. Hope your husbands recovery is going well!

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #75
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    Dave,

    Like I mentioned in the e-mail - GREAT NEWS!

    I'm putting $20 on the fact that your taste comes back, and you lead the family in eating - at Thanksgiving!!

    You're well on your way to "back to normal"!

    Contratulations,

    mg

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    edited September 2020 #76
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    Dave705 said:

    All clear

    Got the results, All clear. Everything normal! Feels like the world has been lifted off of me. Still have to wait for taste buds and have a little swelling in right neck muscle, which they say is normal. So I think I can handle those minimal problems. Hope your husbands recovery is going well!

    Great news

    Nothing better than NED-Take Care-God Bless-Russ

  • big G
    big G Member Posts: 176 Member
    #77
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    motorcycleguy said:

    Dave,

    Like I mentioned in the e-mail - GREAT NEWS!

    I'm putting $20 on the fact that your taste comes back, and you lead the family in eating - at Thanksgiving!!

    You're well on your way to "back to normal"!

    Contratulations,

    mg

    705

    Congrats on the all clear, hoping you regain the taste buds soon. 

  • Dave705
    Dave705 Member Posts: 62 Member
    #78
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    wbcgaruss said:

    Great news

    Nothing better than NED-Take Care-God Bless-Russ

    Thanks

    Thanks So much Russ!

  • Dave705
    Dave705 Member Posts: 62 Member
    edited September 2020 #79
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    big G said:

    705

    Congrats on the all clear, hoping you regain the taste buds soon. 

    Thanks

    Thanks Big G, appreciate it!

  • Dave705
    Dave705 Member Posts: 62 Member
    edited October 2020 #80
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    Back to work

    After 7 months of surgery, and radiation and recovery, it's back to work on Monday. Taste buds now about 50 percent, so things starting to greatly improve. Anyone who struggles after radiation, just hang in there. It will get better! Thanks to all the get well wishers on here, who have been so concerned these last months. I appreciated every bit of encouragement and help I have gotten.

  • BeagleDad
    BeagleDad Member Posts: 108 Member
    edited October 2020 #81
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    Dave705 said:

    Back to work

    After 7 months of surgery, and radiation and recovery, it's back to work on Monday. Taste buds now about 50 percent, so things starting to greatly improve. Anyone who struggles after radiation, just hang in there. It will get better! Thanks to all the get well wishers on here, who have been so concerned these last months. I appreciated every bit of encouragement and help I have gotten.

    Your journey

    First off, thank you for replying to my first thread.  I JUST got preliminary diagnosis and awaiting first biopsy findings ... fingers and toes it is hpv-related.  

    I have read several of your posts here and find them helpful.  We (Drs & me) havenot yet determined whether ornot I wil lhave to go under the knife or address with tx only.  It is S3 since it has expanded into my lymph node.  

    I am SO not looking forward to all this.  It is like looking upat the sky and seeing clear and blue skies but seeing ont he weather channel that a hurricane is approaching.  Right now I vacilate between "being normal" and upsetness at the hand I have been dealt.  Certainly I take solace in yours and other threads for the long term.  I have to admit I am suffereing from some self pity now but also know that I am "lucky" (HA!) givent hat I have recently lost 2 friends to incurable cancers.  

    Kinda hard to feel lucky, I am sure you and others understand.

    I have always been the positive guy in the room ... silver linings everywhere in my life.  But I have to say, I can feel twinges of saddness and tearing up as I write this and read some of these posts.  

    Damn .... I love to eat and drink.  And right now I am being advised (here) to fatten up all I can but I have completely lost my appetite.... and then I read in  this thread how important it is to go eat and enjoy now because of how much I will miss those baisics in my life in such a short time frame.  

    I am seriously going to need y'all's help here.  

    You mentioned not getting back to work for 7 months.  Is THAT normal????  I work from home (I own a computer repair business back in Arizona) but I deliver pizzas here in northwest Arkansas at night.  I expect to be out of work during tx ... should I plan on being out of work at the pizza place for months not weeks????  If so, why?  (I am not challenging your advice, just trying to find out what issues will I have to deal with that keep me from working)   I have a lot of support for the computer business and can be away for a short period while I rest and all ..but the pizza biz is important income to my wife and me.  

    Thank you.  

    Don - beagledad

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