4 months past treatment of tonsil cancer

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elwoodsinoakdale
elwoodsinoakdale Member Posts: 71 Member
in Head and Neck Cancer #1
Hello everyone, New to this post stuff. My husband had tonsil cancer caused from hpv, he is now 4 months past treatment. He does not want to eat, has no appetite, no energy, is this normal. I am so scared that he is never going to be normal again. I just would like to know if anyone else has this problem, oh yeah he did not have a feeding tube.
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  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
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    Welcome
    Welcome to the forum, great people and tons of experience here....

    I also had STGIII SCC HPV+ Tonsil Cancer, and a lymphnode as a secondary. Nine weeks of chemo (Cisplatin, Taxotere and 5FU), then seven weeks of concurrent chemo/rads (weekly Carboplatin and daily rads)...also no PEG.

    No appitite and not eating will certainly cause no energy. So that goes hand in hand...

    I never expereinced that, I did have pain in my throat during the last few weeks of rads and the next few there after...primarily a liquid diet of pain meds, water and Ensure Plus.

    What is he eating or drinking for calroies? How is is attitude,is he positive and upeat or depressed....

    Have you guys communicated with his MD's, seeked any knid of counciling if he's in depression?

    Everyone is different, but I'd presume at four months post treatment he should be making a lot of improvement...so in my feelings, NO it's not usual to still not have an appetite...

    I'd talk to your MD's for a reccomendation to a nutritionists or find out what specifically is causing his lack of appetite.

    Thoughts and Prayers,
    John
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #3
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    Skiffin16 said:

    Welcome
    Welcome to the forum, great people and tons of experience here....

    I also had STGIII SCC HPV+ Tonsil Cancer, and a lymphnode as a secondary. Nine weeks of chemo (Cisplatin, Taxotere and 5FU), then seven weeks of concurrent chemo/rads (weekly Carboplatin and daily rads)...also no PEG.

    No appitite and not eating will certainly cause no energy. So that goes hand in hand...

    I never expereinced that, I did have pain in my throat during the last few weeks of rads and the next few there after...primarily a liquid diet of pain meds, water and Ensure Plus.

    What is he eating or drinking for calroies? How is is attitude,is he positive and upeat or depressed....

    Have you guys communicated with his MD's, seeked any knid of counciling if he's in depression?

    Everyone is different, but I'd presume at four months post treatment he should be making a lot of improvement...so in my feelings, NO it's not usual to still not have an appetite...

    I'd talk to your MD's for a reccomendation to a nutritionists or find out what specifically is causing his lack of appetite.

    Thoughts and Prayers,
    John

    Thanks John, he sees his
    Thanks John, he sees his doctor next Friday, will talk to him about this. He drinks ensure all day long, and this gives him is calories, he is not depressed, just says he cant taste anything, so why bother to eat. Glad to hear you are doing so well. Will keep you posted on what his doctor say.

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    elwoodsinoakdale said:

    Thanks John, he sees his
    Thanks John, he sees his doctor next Friday, will talk to him about this. He drinks ensure all day long, and this gives him is calories, he is not depressed, just says he cant taste anything, so why bother to eat. Glad to hear you are doing so well. Will keep you posted on what his doctor say.

    Linda

    Ahhhh Taste...
    Taste takes awhile to come back...he just needs to keep trying and if it doesn't taste good try it again in a few months.

    I had Amifostine injections that is supposed to help save some salivary function. But both taste and saliva took several months to even begin coming back.

    I'm over two years post treatment...diagnosed January 2009, finished all mid June 2009.

    All scans have been clear since, knock on wood...

    So let him know there's hope and longevity, just takes healing up quite a while...long slow process.

    Try buffet style restaurants where he can sample a lot of different flavors. For me most everything didn't taste the same initially. If I did get any flavor, I'd lose it after a few bites.

    Now at over two years out, I have back about 90=% of both saliva and taste.

    Don't give up, just keep trying different things...revisit them a few mnths later.

    Best,
    John
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #5
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    Skiffin16 said:

    Ahhhh Taste...
    Taste takes awhile to come back...he just needs to keep trying and if it doesn't taste good try it again in a few months.

    I had Amifostine injections that is supposed to help save some salivary function. But both taste and saliva took several months to even begin coming back.

    I'm over two years post treatment...diagnosed January 2009, finished all mid June 2009.

    All scans have been clear since, knock on wood...

    So let him know there's hope and longevity, just takes healing up quite a while...long slow process.

    Try buffet style restaurants where he can sample a lot of different flavors. For me most everything didn't taste the same initially. If I did get any flavor, I'd lose it after a few bites.

    Now at over two years out, I have back about 90=% of both saliva and taste.

    Don't give up, just keep trying different things...revisit them a few mnths later.

    Best,
    John

    Thanks John, Not giving up,
    Thanks John, Not giving up, he is just so tired of not feeling well, but he is alive. I lost my first husband of 21 years to lympoma, at the age of 41, so this second time around with the big C is so scary to me. I know that they are doing so much more for cancer now but it still frighting to deal with again.


    Thanks

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
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    elwoodsinoakdale said:

    Thanks John, Not giving up,
    Thanks John, Not giving up, he is just so tired of not feeling well, but he is alive. I lost my first husband of 21 years to lympoma, at the age of 41, so this second time around with the big C is so scary to me. I know that they are doing so much more for cancer now but it still frighting to deal with again.


    Thanks

    Linda

    I Hear Ya
    Frightening when you are the one going through it also... I definitely know what he's feeling...been there done that.

    Hoping he has several more years with you at his side.....

    Best,
    John
  • DrMary
    DrMary Member Posts: 531 Member
    #7
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    Familiar frustration
    Not only could Doug not really taste food for a while, but he also said some things just plain tasted bad. I was fortunate that my 13-year-old son is a bottomless pit and was generally willing to eat what his father didn't (I still threw out a lot of food) as I experimented with tastes and textures all over the place. The suggestion of a buffet is a great one - Doug regained much of his taste before he was able to eat food that hadn't been made easy to swallow by various chopping, mashing and saucing, so we never tried that out.

    Can he smell the food? Smell is a big part both of taste and appetite (sauteed onions in butter/olive oil always seems to call people to the kitchen in my house) and I noticed Doug's appetite disappeared with his nose hairs - I always figured the radiation had something to do with both. I missed a bet - I didn't check to see if the return of his appetite was accompanied by the nose hairs, but he does have both back now.

    One thing to note about Ensure is that it is low in saturated fat - we'd normally consider that a good thing. I read a study the other day that indicated a linkage between saturated fat and appetite (and, therefore, saturated fat and weight gain). It seems that saturated fat blocks the "I'm getting full" hormone, so that we actually stay hungry longer while eating foods like steak and hamburgs (possibly one reason why we might overeat when faced with grilled beef but not do so with grilled fish. . .). Maybe it's time for a Philly cheese steak (minus the bun)?
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #8
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    DrMary said:

    Familiar frustration
    Not only could Doug not really taste food for a while, but he also said some things just plain tasted bad. I was fortunate that my 13-year-old son is a bottomless pit and was generally willing to eat what his father didn't (I still threw out a lot of food) as I experimented with tastes and textures all over the place. The suggestion of a buffet is a great one - Doug regained much of his taste before he was able to eat food that hadn't been made easy to swallow by various chopping, mashing and saucing, so we never tried that out.

    Can he smell the food? Smell is a big part both of taste and appetite (sauteed onions in butter/olive oil always seems to call people to the kitchen in my house) and I noticed Doug's appetite disappeared with his nose hairs - I always figured the radiation had something to do with both. I missed a bet - I didn't check to see if the return of his appetite was accompanied by the nose hairs, but he does have both back now.

    One thing to note about Ensure is that it is low in saturated fat - we'd normally consider that a good thing. I read a study the other day that indicated a linkage between saturated fat and appetite (and, therefore, saturated fat and weight gain). It seems that saturated fat blocks the "I'm getting full" hormone, so that we actually stay hungry longer while eating foods like steak and hamburgs (possibly one reason why we might overeat when faced with grilled beef but not do so with grilled fish. . .). Maybe it's time for a Philly cheese steak (minus the bun)?

    Yes Mary he can smell the
    Yes Mary he can smell the food, some days he will eat like crazy, but then he does a step back and wont eat for days, only ensure, says his throat hurts. He sleeps alot also, He was just so active before this, so I am realy worried, the doctors say this is normal for 4 months out. When did Doug get his taste buds back? I was just worried about him being so tired all the time, he also has a problem with his back hurting him. I was just wondering how long does it take for him to feel nomal again.

    Linda
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
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    elwoodsinoakdale said:

    Yes Mary he can smell the
    Yes Mary he can smell the food, some days he will eat like crazy, but then he does a step back and wont eat for days, only ensure, says his throat hurts. He sleeps alot also, He was just so active before this, so I am realy worried, the doctors say this is normal for 4 months out. When did Doug get his taste buds back? I was just worried about him being so tired all the time, he also has a problem with his back hurting him. I was just wondering how long does it take for him to feel nomal again.

    Linda

    Hi Linda


    It was a while before I started to really eat again after treatment ended. One of the problems are good and bad days, some days you feel very good and the next day like crap and hurting all over, it can have a lot to do with appetite. On days he feels like eating give him all he can hold so on days he don’t feel so good he can drink the Ensure. Also very importance is to keep him hydrated, drinking a lot of liquid and water, one more thing is to have his Thyroids checked as they can cause a lot of problems after treatment ends.

    Glad to have you here on CSN, welcome to the family

    Wishing you the best
    Hondo
  • DrMary
    DrMary Member Posts: 531 Member
    #10
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    elwoodsinoakdale said:

    Yes Mary he can smell the
    Yes Mary he can smell the food, some days he will eat like crazy, but then he does a step back and wont eat for days, only ensure, says his throat hurts. He sleeps alot also, He was just so active before this, so I am realy worried, the doctors say this is normal for 4 months out. When did Doug get his taste buds back? I was just worried about him being so tired all the time, he also has a problem with his back hurting him. I was just wondering how long does it take for him to feel nomal again.

    Linda

    Doug said
    he felt it took about 3 months before food tasted "normal" (although he still can't taste some things too well, like chocolate). He does seem to eat about 50% because of plain hunger, about 30% for pleasure and about 20% out of a sense of duty.

    He had a very frustrating time after his neck dissection (2 months out) because it aggravated an ulcer (in a deep crevice at the tongue root, near his right jaw hinge) that we didn't know had not healed entirely. It took a few weeks to find out what the problem was, as neither the dentist nor the ENT could see it (rad doc did and had seen similar in other patients). Doug went back on his pain meds for a while and was painting it with straight lidocaine right before eating. It's better now and the doctor said it is slowly filling in - such ulcers can be very painful, he said, and can also collect food and such and get infected. It might be worthwhile for the doctor to look around for any active sores - they might be getting aggravated during his eating sprees.

    About back pain - we've been through a fair amount ourselves in the past (Doug, much more than I - he had to have surgery for a ruptured disk). One thing that makes it flare up in both of us is inactivity - likewise, exercise tends to help (mild exercise that does not involve the back much, obviously).

    It can be difficult for someone who used to be active to consider a walk or 20 minutes on the elliptical to be "exercise" - you can't just jump right back into it, and he might not really be inspired to work his way back. A goal can help - Doug committed himself to play in a tournament 2 months after his neck dissection (a total of 4 months after treatment ended) - that was real incentive. Otherwise, it's too easy to put the gym off for "tomorrow" or try to do too much in one day and put yourself out for a week (says the fat lady who skipped her workout this morning. . . ).
  • Goalie
    Goalie Member Posts: 184
    #11
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    elwoodsinoakdale said:

    Yes Mary he can smell the
    Yes Mary he can smell the food, some days he will eat like crazy, but then he does a step back and wont eat for days, only ensure, says his throat hurts. He sleeps alot also, He was just so active before this, so I am realy worried, the doctors say this is normal for 4 months out. When did Doug get his taste buds back? I was just worried about him being so tired all the time, he also has a problem with his back hurting him. I was just wondering how long does it take for him to feel nomal again.

    Linda

    My perspective
    From the patient's side now. Like John, I was SCC HPV+ tonsil and then lymph node(s), tonsillectomy, rads and chemo, though less than he did. I am now eight months out from that (seems like both yesterday and forever ago.) I also had the added fun of a neck dissection which only affected the mouth sores and jaw action but not the saliva or taste buds.

    As I also had no PEG, I had to keep up the chewing and swallowing or, the other way around, because I could do both to some degree throughout, I could do without the tube.

    The first few months after treatment, everything tasted like cardboard if not worse. Thanks goodness for Boost Plus which I found quite drinkable. I remember there was even a time when our filtered water tasted bad and we used bottled for a few weeks. It was easily 3-4 months out before many things tasted sort of "good". These months were also worse for the saliva and every bite had to be highly lubricated. Someone called this "foobrication". By now, however, I have maybe 90/90 on taste and saliva though I admit I am very lucky. Frankly, I would be starting to be a little concerned for your husband. Not so much concerned that I would be rushing to the ER but definitely something to talk about at your next appt.

    I will mention a related topic and that is food aversion. I found that this was a very powerful feeling that I still sometimes have difficulty overcoming. Even though I am often "hungry" in the purely physical sense and often "have an appetite" in the sense of wanting to eat, sometimes I just sit and look at the food and feel almost sick to my stomach and think that I can't possibly eat it. This is not a reflection on my wife's cooking as she is an excellent and adventurous cook and it hardly ever happens when I am eating at home. In the end though, it is my job to eat or I will never fully recover and eat I do. It must be working as I have gained back 35 of the 40 pounds I lost. Still, there's rarely "gusto" and you should be prepared for this for months on end.

    I just turned to my wife and asked her what she was writing and it turned out she is responding here as well so this will be interesting.

    Anyway, to sum up, you made it through, and quickly or not as quickly, he and you will keep getting better. Take joy in this. Doug
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #12
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    Hondo said:

    Hi Linda


    It was a while before I started to really eat again after treatment ended. One of the problems are good and bad days, some days you feel very good and the next day like crap and hurting all over, it can have a lot to do with appetite. On days he feels like eating give him all he can hold so on days he don’t feel so good he can drink the Ensure. Also very importance is to keep him hydrated, drinking a lot of liquid and water, one more thing is to have his Thyroids checked as they can cause a lot of problems after treatment ends.

    Glad to have you here on CSN, welcome to the family

    Wishing you the best
    Hondo

    Thanks Hondo, its just so
    Thanks Hondo, its just so hard on both of us. he drinks lots of fluids. He lost about 30 pounds, he has put 4 back on, but like I said he will be doing great, but then the no eating starts again, this is when it gets scary and it last about 4 days. Just hoping for the best. He just wants his taste buds back, he says everything is horrible tasting. Thanks everyone for your comments, they do help.

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
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    NORMAL
    "I was just wondering how long does it take for him to feel nomal again.

    Unfortunately "Normal" as he knew it before will never be the same....

    But his "New Normal", will be or potentially better than before. Maybe not as far as taste and side effects. But definitely in perspective and outlook...at least it is for me iin a lot of ways.

    As for the normal you are referring,everyone is different and heal and recover differently.But more than likely very soon, a little at a time he'll feel better...one step forward, two back... It's a long slow process measured in weeks and months, not so much days and weeks...

    JG
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #14
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    Skiffin16 said:

    NORMAL
    "I was just wondering how long does it take for him to feel nomal again.

    Unfortunately "Normal" as he knew it before will never be the same....

    But his "New Normal", will be or potentially better than before. Maybe not as far as taste and side effects. But definitely in perspective and outlook...at least it is for me iin a lot of ways.

    As for the normal you are referring,everyone is different and heal and recover differently.But more than likely very soon, a little at a time he'll feel better...one step forward, two back... It's a long slow process measured in weeks and months, not so much days and weeks...

    JG

    Thanks everyone for the
    Thanks everyone for the comments and advice. I read all of them to Steve and guess what he asked for a pancake, I could of cried. He told me he will try harder on the eating, and I believe him. I can't thank you guys enough, sometimes you just have to hear from someone who has been through this. Thanks again and I will keep everyone posted. Steve has his first pet scan on the 19th pray everything is fine, in my heart I feel it is.

    Thanks again

    Linda
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #15
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    Skiffin16 said:

    NORMAL
    "I was just wondering how long does it take for him to feel nomal again.

    Unfortunately "Normal" as he knew it before will never be the same....

    But his "New Normal", will be or potentially better than before. Maybe not as far as taste and side effects. But definitely in perspective and outlook...at least it is for me iin a lot of ways.

    As for the normal you are referring,everyone is different and heal and recover differently.But more than likely very soon, a little at a time he'll feel better...one step forward, two back... It's a long slow process measured in weeks and months, not so much days and weeks...

    JG

    Thanks everyone for the
    Thanks everyone for the comments and advice. I read all of them to Steve and guess what he asked for a pancake, I could of cried. He told me he will try harder on the eating, and I believe him. I can't thank you guys enough, sometimes you just have to hear from someone who has been through this. Thanks again and I will keep everyone posted. Steve has his first pet scan on the 19th pray everything is fine, in my heart I feel it is.

    Thanks again

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
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    elwoodsinoakdale said:

    Thanks everyone for the
    Thanks everyone for the comments and advice. I read all of them to Steve and guess what he asked for a pancake, I could of cried. He told me he will try harder on the eating, and I believe him. I can't thank you guys enough, sometimes you just have to hear from someone who has been through this. Thanks again and I will keep everyone posted. Steve has his first pet scan on the 19th pray everything is fine, in my heart I feel it is.

    Thanks again

    Linda

    Thoughts & Prayers
    You have them....looking forward for a good report.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
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    elwoodsinoakdale said:

    Thanks Hondo, its just so
    Thanks Hondo, its just so hard on both of us. he drinks lots of fluids. He lost about 30 pounds, he has put 4 back on, but like I said he will be doing great, but then the no eating starts again, this is when it gets scary and it last about 4 days. Just hoping for the best. He just wants his taste buds back, he says everything is horrible tasting. Thanks everyone for your comments, they do help.

    Linda

    Weight loss

    Linda I was 230lbs when I first started treatment today I am 156lbs wet. It has been quite a weight loss program that I have been on and very costly. You are correct because you don’t want him to lose too much weight; but soon his body will finish adjusting to his new normal and he should start doing better.

    Wishing the best to you both
    Hondo
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #18
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    DrMary said:

    Familiar frustration
    Not only could Doug not really taste food for a while, but he also said some things just plain tasted bad. I was fortunate that my 13-year-old son is a bottomless pit and was generally willing to eat what his father didn't (I still threw out a lot of food) as I experimented with tastes and textures all over the place. The suggestion of a buffet is a great one - Doug regained much of his taste before he was able to eat food that hadn't been made easy to swallow by various chopping, mashing and saucing, so we never tried that out.

    Can he smell the food? Smell is a big part both of taste and appetite (sauteed onions in butter/olive oil always seems to call people to the kitchen in my house) and I noticed Doug's appetite disappeared with his nose hairs - I always figured the radiation had something to do with both. I missed a bet - I didn't check to see if the return of his appetite was accompanied by the nose hairs, but he does have both back now.

    One thing to note about Ensure is that it is low in saturated fat - we'd normally consider that a good thing. I read a study the other day that indicated a linkage between saturated fat and appetite (and, therefore, saturated fat and weight gain). It seems that saturated fat blocks the "I'm getting full" hormone, so that we actually stay hungry longer while eating foods like steak and hamburgs (possibly one reason why we might overeat when faced with grilled beef but not do so with grilled fish. . .). Maybe it's time for a Philly cheese steak (minus the bun)?

    Just as a side note here... Dr Mary
    Gee, I had noticed that I no longer have those pesky hairs on my upper lip, but until you mentioned it above, I had NOT noticed that I no longer have nose hairs! Fortunately, I retained my sense of smell throughout treatment and recovery. I've always had the proverbial 'nose of a bloodhound' and smell is important to me.

    Finding something to be grateful for every day,

    Deb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
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    D Lewis said:

    Just as a side note here... Dr Mary
    Gee, I had noticed that I no longer have those pesky hairs on my upper lip, but until you mentioned it above, I had NOT noticed that I no longer have nose hairs! Fortunately, I retained my sense of smell throughout treatment and recovery. I've always had the proverbial 'nose of a bloodhound' and smell is important to me.

    Finding something to be grateful for every day,

    Deb

    Hair Today, Gone Tomorrow...
    LOL, of all the hairs on my body, unfortunately those pesky thick, long or gray hairs all in the places you don't normally like having them, were the first to come back on me....

    JG
  • jim and i
    jim and i Member Posts: 1,788 Member
    #20
    Options
    elwoodsinoakdale said:

    Thanks everyone for the
    Thanks everyone for the comments and advice. I read all of them to Steve and guess what he asked for a pancake, I could of cried. He told me he will try harder on the eating, and I believe him. I can't thank you guys enough, sometimes you just have to hear from someone who has been through this. Thanks again and I will keep everyone posted. Steve has his first pet scan on the 19th pray everything is fine, in my heart I feel it is.

    Thanks again

    Linda

    Prayers coming Steve's way.
    Prayers coming Steve's way. Thanking God in advance for that NED.

    Debbie
  • DrMary
    DrMary Member Posts: 531 Member
    #21
    Options
    D Lewis said:

    Just as a side note here... Dr Mary
    Gee, I had noticed that I no longer have those pesky hairs on my upper lip, but until you mentioned it above, I had NOT noticed that I no longer have nose hairs! Fortunately, I retained my sense of smell throughout treatment and recovery. I've always had the proverbial 'nose of a bloodhound' and smell is important to me.

    Finding something to be grateful for every day,

    Deb

    Nose hairs - coincidence and not causative
    By the way, I was using the nose hair disappearance as an indication of radiation effects - he seems to have had radiation hitting as far as his lower eyelids and as low as his collarbone - and not suggesting loss of nose hair affected smell. I just figured radiation might do the same thing to the olfactory nerves as it does to the taste buds, and if the radiation was zapping nose hairs, it might also be zapping nose nerves. BTW, loss of nose hairs does seem to cause a constant runny nose. . . so I was mostly glad to see them come back.

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