I'm done!

RogerRN43
RogerRN43 Member Posts: 185
in Head and Neck Cancer #1
Finished my last rad 35/35 today. Last Cisplatin is so far not too hard on me, I'm on day 5 and no nausea/hiccups when I had them before starting day 3 or 4.

My lymph node is like a pea now, will it continue getting smaller?
(Trying to avoid a neck dissection).

I'm struggling to drink my supplement feeds, my stomach can only handle 2 or 3/day, I need 5. But I'm hoping it picks up as the chemo wears off. Before this chemo I was drinking 5/d. Not really using my stomach tube, mouth sores are minimal, throat is not too sore, not on pain meds.

I guess I have a month or two before I can start eating some soft foods and getting maybe a bit of taste to come back?
What tastes came back to you first?
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Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    35 for 35
    way to go Roger. The taste for life comes back first. My taste for sweets came back second and remains insatiable till this day. Don't rush anything as these can be your worst few weeks to follow. A great Christmas indeed for you!
  • osmotar
    osmotar Member Posts: 1,006
    #3
    Way to Go!!!! Congrats
    YEAH!!!! to you.

    I am about 2 weeks behind you in finishing my rads. I've had to have my last 2 carboplatin infusions postponed as my platelets were to low, so I may have to make those up at then end..but if thats what it is , so be it. I've added more supplemtnsts to my diet, to keep the weight up, no PEG , and don't forsee having to get one this close to the end.

    So happy for you and best wishes for your continued improvement with taste and eating.

    Linda
  • NJR
    NJR Member Posts: 82
    #4
    Maybe
    Mine shrunk to about the same size and has stayed there. They biopsied it and it is nothing but dead tissue. Doc said it would likely be there for a very long time but will eventually be absorbed. He said to keep in mind that is the outer casing of your tumor and is somewhat more resilient than what it contained.

    Congratulations, but don't start thinking you're done. You're not, but the hard part is over. I say this because I fell into that trap myself. Now get ready to discover the side effects and treat them. Then there is the ongoing visits and subsequent anxiety over the scans you will have to contend with.

    Funny thing about taste. Sour was the first I got back, followed by salt. Both were downright painful. Sweet was last. Just the opposite of others I have talked too. I kind of liken it to brand new taste buds that are mega sensitive. At three months out I can now drink acidic juices and most everything I want barring anything hot or spicy, including even the smallest amounts of ordinary pepper. The doctor said that there is a window of improvement on taste. He said where you are at 6 months on taste is where you will probably remain.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    Yay! Glad you are done getting zapped!
    I was thinking your last one was tomorrow. I was going to make you a little e card, but you stole my thunder. :) I think you did really well so far, if you are still drinking and not on any pain meds, I am encouraged. Let's hope that as you continue to cook, your peak isn't too bad.

    Taste for sweets came back first for me. Which I never liked sweets, so that kind of sucked. Now, I have a terrible sweet tooth!
  • RogerRN43
    RogerRN43 Member Posts: 185
    #6
    NJR said:

    Maybe
    Mine shrunk to about the same size and has stayed there. They biopsied it and it is nothing but dead tissue. Doc said it would likely be there for a very long time but will eventually be absorbed. He said to keep in mind that is the outer casing of your tumor and is somewhat more resilient than what it contained.

    Congratulations, but don't start thinking you're done. You're not, but the hard part is over. I say this because I fell into that trap myself. Now get ready to discover the side effects and treat them. Then there is the ongoing visits and subsequent anxiety over the scans you will have to contend with.

    Funny thing about taste. Sour was the first I got back, followed by salt. Both were downright painful. Sweet was last. Just the opposite of others I have talked too. I kind of liken it to brand new taste buds that are mega sensitive. At three months out I can now drink acidic juices and most everything I want barring anything hot or spicy, including even the smallest amounts of ordinary pepper. The doctor said that there is a window of improvement on taste. He said where you are at 6 months on taste is where you will probably remain.

    Yep, still lots to go
    Side effects, scans, etc... I guess I'll take it as it comes.

    These next few weeks will be tough no doubt as rad takes full effect, just glad treatment is over. I sort of only see it as 1/3 of the way to recovery at this point. And happy this last chemo hasn't hit me so hard.
  • jtl
    jtl Member Posts: 456
    #7
    Yea!
    Congrats Roger. At 5 weeks post rads I am finally starting to enjoy a few foods. Went to a party last night that was catered by Whole Foods and sampled about everything especially some kind of tender cold beef (rare) with a horseradish sauce. There was also an excellent onion dip made from whole sweet onions. Unfortunately the sweets were a washout, too bad because they looked so tempting. Since my throat is still a little tender I took a pain med, something I haven't used in 3 weeks. My taste was probably about 50% on most things, enough to give some meaning to the food but not perfect. Saliva was still weak but managable with some liquid. This hopefully gives you an idea of the time frame that you may experience.
    Regards,
    John
  • RogerRN43
    RogerRN43 Member Posts: 185
    #8
    sweetblood22 said:

    Yay! Glad you are done getting zapped!
    I was thinking your last one was tomorrow. I was going to make you a little e card, but you stole my thunder. :) I think you did really well so far, if you are still drinking and not on any pain meds, I am encouraged. Let's hope that as you continue to cook, your peak isn't too bad.

    Taste for sweets came back first for me. Which I never liked sweets, so that kind of sucked. Now, I have a terrible sweet tooth!

    Dawn
    No one could steal your thunder.
    You are so greatly appreciated here with everything you do, words cannot express.

    I'm hoping too my peak isn't too bad too.
    I wouldn't mind if sweet came back first but I'll just have to be patient and see.

    Most of all, future NEDs, I pray for of course.
  • RogerRN43
    RogerRN43 Member Posts: 185
    #9
    jtl said:

    Yea!
    Congrats Roger. At 5 weeks post rads I am finally starting to enjoy a few foods. Went to a party last night that was catered by Whole Foods and sampled about everything especially some kind of tender cold beef (rare) with a horseradish sauce. There was also an excellent onion dip made from whole sweet onions. Unfortunately the sweets were a washout, too bad because they looked so tempting. Since my throat is still a little tender I took a pain med, something I haven't used in 3 weeks. My taste was probably about 50% on most things, enough to give some meaning to the food but not perfect. Saliva was still weak but managable with some liquid. This hopefully gives you an idea of the time frame that you may experience.
    Regards,
    John

    John
    I've sort of been following your progress knowing you're ahead of me and that is an absolutely enlightening story about the foods you sampled.

    Thank you for the hope!
  • RogerRN43
    RogerRN43 Member Posts: 185
    #10
    osmotar said:

    Way to Go!!!! Congrats
    YEAH!!!! to you.

    I am about 2 weeks behind you in finishing my rads. I've had to have my last 2 carboplatin infusions postponed as my platelets were to low, so I may have to make those up at then end..but if thats what it is , so be it. I've added more supplemtnsts to my diet, to keep the weight up, no PEG , and don't forsee having to get one this close to the end.

    So happy for you and best wishes for your continued improvement with taste and eating.

    Linda

    Linda
    Keep at it, you are doing everything right.
    The platelets are just a little bump in the road, just like when my stomach tube got infected, got over it and now I'm done.

    Wishing you the best as you complete.
    Roger
  • jim and i
    jim and i Member Posts: 1,788 Member
    #11
    congrats
    It was a long haul but you made it and with flying colors. Praying your recovery is speedy and uneventful.

    As for taste. Jim could taste beer, salad and peaches first but then everything went bad tasting again. However, he is a senior citizen and that may have something to do with his slow recovery. You seem to be doing well without using the tube so you will probably be back to normal soon.

    Debbie
  • jtl
    jtl Member Posts: 456
    #12
    jim and i said:

    congrats
    It was a long haul but you made it and with flying colors. Praying your recovery is speedy and uneventful.

    As for taste. Jim could taste beer, salad and peaches first but then everything went bad tasting again. However, he is a senior citizen and that may have something to do with his slow recovery. You seem to be doing well without using the tube so you will probably be back to normal soon.

    Debbie

    Debbie
    Careful now, I am 65 and I can taste beer. Only kidding, my wife is a Debbie also.
    John
  • sumarah8
    sumarah8 Member Posts: 32
    #13
    congrats
    You are on your way to healing, im so jealous i still have 3 months adjuvant chemo and im done, but right now i've been healing from radiation with concurrent chemo, its not so bad, i've been eating anything, gained back like 10 pounds, i have no feeding tube and i still manage to eat without any taste, i dont care about the taste anymore, i guess im used to it.
    congratulations, you did good!...
  • robertjuy
    robertjuy Member Posts: 45
    #14
    Congratz on completion
    As others have said. You're still cooking like my wife is. I think she started at the same time as you. Hope you feel better soon.
  • Kyle Gilmore
    Kyle Gilmore Member Posts: 55
    #15
    robertjuy said:

    Congratz on completion
    As others have said. You're still cooking like my wife is. I think she started at the same time as you. Hope you feel better soon.

    woohoooo!!!! welcome to the
    woohoooo!!!! welcome to the other side of rads!
  • staceya
    staceya Member Posts: 720
    #16
    Kyle Gilmore said:

    woohoooo!!!! welcome to the
    woohoooo!!!! welcome to the other side of rads!

    watermelon
    Congratulations!
    So happy to be cheering you on.

    Watermelon was the first thing I could taste..it made me cry it was so good, and so cool and nice on the throat.

    Hard to remember on the sweet/sour/salty for me it was a bit of everything coming back slowly. Buffets were the best, and foods like tofu/flan/noodles/jello/soups were the best.

    It is really a remarkable feeling, when you are able to taste food again.

    Stacey
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    Hi Roger

    It is time to let your old friend Rad go by by and me our new friend NED. Congratulations on crossing the finish line my friend.

    Hondo
  • rush1958
    rush1958 Member Posts: 223 Member
    #18
    Congrats!
    It feels good to cross the finnish line!

    As far as taste goes, broccoli was the first thing I could taste. "Green" veggies in general got their taste back within about a week after the end of treatment.

    "Sweet" was the last taste to come back. My first hint of sweetness came from a fresh cherry about six weeks out of treatment. 18 months later and it's still improving.

    Something you may want to try is sesame seed oil. The chemo doctors suggested that I swish my mouth with sesame seed oil for about 10 minutes once each day. It seemed to work wonders for me. I only did it for a week or so, but I noticed improvement rapidly.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #19
    rush1958 said:

    Congrats!
    It feels good to cross the finnish line!

    As far as taste goes, broccoli was the first thing I could taste. "Green" veggies in general got their taste back within about a week after the end of treatment.

    "Sweet" was the last taste to come back. My first hint of sweetness came from a fresh cherry about six weeks out of treatment. 18 months later and it's still improving.

    Something you may want to try is sesame seed oil. The chemo doctors suggested that I swish my mouth with sesame seed oil for about 10 minutes once each day. It seemed to work wonders for me. I only did it for a week or so, but I noticed improvement rapidly.

    Sesame seed oil.
    I have had other people mention that to me before. I never tried it though.
  • Hal61
    Hal61 Member Posts: 655
    #20
    Totally rad
    Good Job Roger! At least you don't have to drag your dizzy self to the clinic every day any more. For me, that was a relief. You'll still be simmering a bit, as mentioned, but at least you don't have to put on a clean shirt for it every day.

    beat, Hal
  • Hal61
    Hal61 Member Posts: 655
    #21
    sweetblood22 said:

    Sesame seed oil.
    I have had other people mention that to me before. I never tried it though.

    doo-do doo-do doo-do doo-do
    Sweet, maybe it's just me, but it seems like the Nizzy tongue gets closer every time I look at that pic . . . or maybe I'm confusing your pic with a TZ episode. Still worth keeping an eye on.
    Hal

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