What to expect now

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  • Dave705
    Dave705 Member Posts: 62 Member
    edited May 2020 #42
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    1 week down

    First week of radiation down. Not to bad except Friday when I had 2 doses. Doctor wanted to do 2 every Friday because of my recent tonsil removal. Really knocked me down Friday evening. Can't understand if they removed the tumor, and see no more signs of cancer, why they have to do 35 treatment. Seems to be a standard number from what I have read. But what would happen with less treatments. May talk to doctor to see if I really need the double dose for the next 5 fridays.

  • big G
    big G Member Posts: 176 Member
    #43
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    Dave705 said:

    1 week down

    First week of radiation down. Not to bad except Friday when I had 2 doses. Doctor wanted to do 2 every Friday because of my recent tonsil removal. Really knocked me down Friday evening. Can't understand if they removed the tumor, and see no more signs of cancer, why they have to do 35 treatment. Seems to be a standard number from what I have read. But what would happen with less treatments. May talk to doctor to see if I really need the double dose for the next 5 fridays.

    1st week

    1st week usually not too bad. Don't forget baking soda/salt rinse and keep your neck rubbed down with your choice of cream after treatments. I had 33 with the last 4 high doses to the site. May get a little worse as you go along. Hang in there and make sure you finish. Let us know how you are doing, good luck.

  • Dave705
    Dave705 Member Posts: 62 Member
    #44
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    big G said:

    1st week

    1st week usually not too bad. Don't forget baking soda/salt rinse and keep your neck rubbed down with your choice of cream after treatments. I had 33 with the last 4 high doses to the site. May get a little worse as you go along. Hang in there and make sure you finish. Let us know how you are doing, good luck.

    Thanks

    Thanks for the encouragement.  Been using aquaphor and the baking soda rinse all week. Also constant teeth brushing. Drinking 200 ounces of water and Gatorade a day. Still eating well, but know sooner or later, things will change.

  • big G
    big G Member Posts: 176 Member
    edited May 2020 #45
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    Dave705 said:

    Thanks

    Thanks for the encouragement.  Been using aquaphor and the baking soda rinse all week. Also constant teeth brushing. Drinking 200 ounces of water and Gatorade a day. Still eating well, but know sooner or later, things will change.

    Doing the right things

    Sounds like you got it under control. Aquaphor is great stuff that's what I used greasy but gets results.You may lose your taste buds but eat anyway to help you get through this.

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    edited May 2020 #46
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    Double Treatment

    Never heard of a double treatment on Friday.  I am sure there is a good reason.  Would be interesting to find out why.  These protocalls change all the time.  Totally agree about keep eating.  Hard to do but do keep at it.

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    edited May 2020 #47
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    I Agree With HobbsDoggy

    About the double treatment on Fridays. I have never heard of it but like he says they keep changing things and the docs are different with different ideas. I'm sure they know what they are doing. The only thing I remember seeing or having done is if you missed one they would add it on the end of the treatments not double up on a day. I would think it would be a less effective treatment to double up on a day rather than another treatment another day. Just my idea though we are just curious so hope Dave can find out for us. Congrats on your first week down and keep your eye on the end and keep moving forward-Take Care-God Bless-Russ

  • Dave705
    Dave705 Member Posts: 62 Member
    #48
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    wbcgaruss said:

    I Agree With HobbsDoggy

    About the double treatment on Fridays. I have never heard of it but like he says they keep changing things and the docs are different with different ideas. I'm sure they know what they are doing. The only thing I remember seeing or having done is if you missed one they would add it on the end of the treatments not double up on a day. I would think it would be a less effective treatment to double up on a day rather than another treatment another day. Just my idea though we are just curious so hope Dave can find out for us. Congrats on your first week down and keep your eye on the end and keep moving forward-Take Care-God Bless-Russ

    Doctors advice

    Because my treatments were so close to my tonsil removal surgery. He recomended 6 weeks at 6 times a week, minus Memorial Day, for 35 treatments. Lower doses. Still am gonna talk to see if I can get Friday's changed to a higher dose and just once. Makes my Saturday rough. Thanks 

  • Dave705
    Dave705 Member Posts: 62 Member
    #49
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    Last week of treatments

    It seemed like it would take forever, but my last week of treatments is this week, with Friday at 2:30 my last. The toughest part has been losing my taste buds. As someone who loves all food, this has been horrible. Just been living on yogurt, ensure and skandishakes. But have only lost 2.5 lbs with a week to go. Only other problem has been the swelling in my right side of mouth from radiatiion. I want to Thank everyone on here for their help and inspirations through this whole ordeal.  Will just have to bide my time and hope for some kind of taste sooner then later.

  • big G
    big G Member Posts: 176 Member
    edited June 2020 #50
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    Dave705 said:

    Last week of treatments

    It seemed like it would take forever, but my last week of treatments is this week, with Friday at 2:30 my last. The toughest part has been losing my taste buds. As someone who loves all food, this has been horrible. Just been living on yogurt, ensure and skandishakes. But have only lost 2.5 lbs with a week to go. Only other problem has been the swelling in my right side of mouth from radiatiion. I want to Thank everyone on here for their help and inspirations through this whole ordeal.  Will just have to bide my time and hope for some kind of taste sooner then later.

    Last Week

    Hang in there Dave, your almost there. Keep in mind the rads will still be active for a little while after treatment ends.

    Sounds like you've done great with your weight. Your recovery will be measured in weeks,months. Taste should return gradually. 

    Thanks for the update.

  • SSJLynn
    SSJLynn Member Posts: 3
    edited June 2020 #51
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    PipLily said:

    Hello!

    My husband had his first radiation, and first Cisplatin this past Wednesday. As far as the radiation, he did great! No claustrophobia, but the chemo has been more challenging than I think we were prepared for. He hasn’t gotten sick, but just feels like he was run over by a Mack truck. He has slept so much! I’ve really had to stay on top of waking him up to eat and drink enough. This afternoon has been a bit better, so I’m thankful for that. If I remember correctly, you are receiving radiation, no chemo? I’m happy for you, at least, for that victory! The waiting to get started is difficult, isn’t it? My husband just wanted to get going, to be done! Stay in touch, and let us know how you’re doing! Will be thinking of you....

    TORS

    Hi Piplily,

    Saw your post on one of the new threads.  My husband is having TORS tomorrow.  He is Stage 1.  Tumor on left tonsil and one node on same side although we were told by the PA is the surgeon's office that they would likely take 12 nodes out for testing.  

    I know you said your husband experienced a lot of pain after surgery.  I am trying to brace myself for that.  Any suggestions or advice?

    Thanks,

    SSJLynn

  • SSJLynn
    SSJLynn Member Posts: 3
    edited June 2020 #52
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    Dave705 said:

    Thank You

    Thanks So much for your thoughts and encouragement! Been eating like crazy this past week to try and get my weight up before treatments start, which I am guessing will be in a week. Already stockpiling many items for eating and drinking during treatment. Happy Easter

    Husband in same Boat

    Hi Dave705, 

    My husband is in a similar boat.  He was diagnosised one month ago today with SCC of the left tonsil with one effected lymph node.  That is how he discoved his cancer as is the case with most I believe. He is scheduled for TORS surgery tomorrow.  We are braciing for a painful couple weeks.  Then we will find out what is next as you say.  Our surgeon is at one of the major cancer treatment centers and said 20% chance no additional treatmwent will be needed.  But that means 80% chance it will be.  That treatment will likely be radiation.  He has met with both radiation and medical oncologist for consults.  Medical oncologist said he liekly would not need chemo. We are hoping that to be the case.  But of course won't know 100% until path report comes back.  

    He too has been eating and also started driinking two Ensure a day last week per the Nutritionist consultation.  

    I wish you the best in your journey. We are not far behing you.  

    Best,

    SSJLynn

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    edited June 2020 #53
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    SSJLynn said:

    Husband in same Boat

    Hi Dave705, 

    My husband is in a similar boat.  He was diagnosised one month ago today with SCC of the left tonsil with one effected lymph node.  That is how he discoved his cancer as is the case with most I believe. He is scheduled for TORS surgery tomorrow.  We are braciing for a painful couple weeks.  Then we will find out what is next as you say.  Our surgeon is at one of the major cancer treatment centers and said 20% chance no additional treatmwent will be needed.  But that means 80% chance it will be.  That treatment will likely be radiation.  He has met with both radiation and medical oncologist for consults.  Medical oncologist said he liekly would not need chemo. We are hoping that to be the case.  But of course won't know 100% until path report comes back.  

    He too has been eating and also started driinking two Ensure a day last week per the Nutritionist consultation.  

    I wish you the best in your journey. We are not far behing you.  

    Best,

    SSJLynn

    SSJLynn Wishing You and Your Husband the Best

    And certainly hoping he is one of the 20%. Best of luck on his surgery tomorrow as we are hoping for complete success and no follow-up treatment needed. And we are hoping that Dave705 is doing well with his cancer situation and he will probably have an update in the near future for us.

    Take Care-God Bless

  • SSJLynn
    SSJLynn Member Posts: 3
    edited June 2020 #54
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    wbcgaruss said:

    SSJLynn Wishing You and Your Husband the Best

    And certainly hoping he is one of the 20%. Best of luck on his surgery tomorrow as we are hoping for complete success and no follow-up treatment needed. And we are hoping that Dave705 is doing well with his cancer situation and he will probably have an update in the near future for us.

    Take Care-God Bless

    Thanks wbcgaruss!

    Appreciate the kind words and all the folks on here willing to share their stories to help us new to this journey.  It does help to know you are not alone. 

    Lynn

  • Dave705
    Dave705 Member Posts: 62 Member
    #55
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    wbcgaruss said:

    SSJLynn Wishing You and Your Husband the Best

    And certainly hoping he is one of the 20%. Best of luck on his surgery tomorrow as we are hoping for complete success and no follow-up treatment needed. And we are hoping that Dave705 is doing well with his cancer situation and he will probably have an update in the near future for us.

    Take Care-God Bless

    In recovery

    Rang the bell on Friday June 12th. First week of recovery now with swelling in right side of my mouth and lack of taste buds. Just trying to rest up now and get well. Sure is great not having to having to get up and go get clamped down to the table. Hopefully all gets better in the coming weeks. Thanks for everybody's thoughts and prayers Through this whole ordeal!

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    #56
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    Dave705 said:

    In recovery

    Rang the bell on Friday June 12th. First week of recovery now with swelling in right side of my mouth and lack of taste buds. Just trying to rest up now and get well. Sure is great not having to having to get up and go get clamped down to the table. Hopefully all gets better in the coming weeks. Thanks for everybody's thoughts and prayers Through this whole ordeal!

    Dave Congratulations

    On finishing treatment and ringing the bell. It will get better at a slow pace but be patient and bask in the joy of recovery and just rest awhile. Just a note I had swelling on one side of my face for a bit and it was my parotid gland swelling. Just a note if it doesn't start going down.

     

  • Dave705
    Dave705 Member Posts: 62 Member
    edited June 2020 #57
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    wbcgaruss said:

    Dave Congratulations

    On finishing treatment and ringing the bell. It will get better at a slow pace but be patient and bask in the joy of recovery and just rest awhile. Just a note I had swelling on one side of my face for a bit and it was my parotid gland swelling. Just a note if it doesn't start going down.

     

    Thanks

    Thanks so much. My swelling is the muscle inside my mouth. Everything outside is OK. I believe it's just swollen from all the radiation. My doctor said it should go back down in a few weeks. So hopefully with lots of r and r, it will happen.

  • paintmatt
    paintmatt Member Posts: 17 Member
    edited June 2020 #58
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    I start chemo and radation

    I start chemo and radation treatment in10 days my wife would like me to take her out for her birthday dinner and drinks. do not know if i should drimk this close to starting treatment?

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #59
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    paintmatt said:

    I start chemo and radation

    I start chemo and radation treatment in10 days my wife would like me to take her out for her birthday dinner and drinks. do not know if i should drimk this close to starting treatment?

    paintmatt,

    Eat ALL of your favorites - and I mean a LOT of them. (Radiation and Chemo will mess with your sense of taste for a while, and you may struggle a bit, maintaining weight.)

    I personally don't see any issue with enjoying a little of your favorite beverage either - but I'm not a Doctor, just a know-it-all electrical engineer!  (After you start treatment, though - I'd recommend following your Oncologist's advice - which will inevitably be to lay off the drinks during chemo....)

    Show your wife a great time, for her birthday; she will be your greatest asset, as you start this process!

    I wish you the best possible result from your treatment, and I'm glad to see you reaching out for support. Let people help you - they will surprise you, with how much assistance they will offer!

    mg

  • paintmatt
    paintmatt Member Posts: 17 Member
    edited June 2020 #60
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    motorcycleguy said:

    paintmatt,

    Eat ALL of your favorites - and I mean a LOT of them. (Radiation and Chemo will mess with your sense of taste for a while, and you may struggle a bit, maintaining weight.)

    I personally don't see any issue with enjoying a little of your favorite beverage either - but I'm not a Doctor, just a know-it-all electrical engineer!  (After you start treatment, though - I'd recommend following your Oncologist's advice - which will inevitably be to lay off the drinks during chemo....)

    Show your wife a great time, for her birthday; she will be your greatest asset, as you start this process!

    I wish you the best possible result from your treatment, and I'm glad to see you reaching out for support. Let people help you - they will surprise you, with how much assistance they will offer!

    mg

    Thank-you for your answer and

    Thank-you for your answer and the kind words

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    edited June 2020 #61
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    Hello paintmatt Do It With Gusto

    Paintmatt welcome to the group and in fact the club nobody really wants to be in but it is sure helpful. Take your wife out and have a great time with a drink or two and have a great meal. And after that keep on eating and enjoying for now because as motorcycleguy says your taste will probably suffer and things won’t have any taste which makes it hard to eat. I would have to say after I was in treatment for awhile the food taste was from  0 to cardboard  if you would have rated it.  You may have to force it down afterwhile. Unless you are carrying a lot of extra weight right now your care team would probably want you to put on a little weight as this treatment tends to lead to weight loss because of appetite loss, loss of flavor, being nauseous, etc. What kind of cancer are you dealing with? How many radiation and chemo treatments are you getting? Do you already have a feeding tube or has your team suggested it? Check out the superthread at the top of the page as it is loaded with lots of info that may be helpful. Feel free to ask any questions here as you go along and enjoy life and eating now as this treatment is rough and you may have some tough times ahead in fact any of this head and neck cancer is a rough road but many have traveled it. Don’t give up as there is a light at the end of the tunnel and you will get through this. So enjoy your meal and cherish the time with your wife and God Bless. There are many members eager to provide help, advice, or a listening ear. If you want to you can also start new postings of your own if the ones you look at don’t apply to your present situation-Below are instructions on how to start a new topic taken directly from the help section at the top right of the page CSN Help. Good luck, stay strong, trust in God, Pray a lot, do your treatments and this will soon be in your past.

     

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